Even friends who have known me for many years are confused by my name and ask about it. For some reason, it’s coming up a lot recently, so here’s the full story.
My parents both had Ph.Ds and enough sense to come in out of the rain. Smart people, with broad interests and strong values, well-educated, travelled, etc. So why this predictable name conundrum exists is a mystery.
My full name is Carolyn Kristina Gunsalus. I’ve been called Tina since birth. My mother’s name was Carolyn, and she went by Carol. The story I’ve been told is that my father proposed my name, perceiving Kristina as a kind of linguistic diminutive of Carolyn. As you will quickly detect, this means that what I am called comes from the end of my middle name. This would have been fine, except my younger sister’s name (still all perceived to be linguistic diminutives, I’m told) is Kristin Carla Gunsalus. This means my initials are C. K. and hers are K. C. Cute. She’s been called Kris since birth. The combination of my mother’s use of Carol and my sister’s use of Kris rules out the use of either Carolyn or Kristina by me, the confusion factor being high with either. For informal purposes, of course, there isn’t any difficulty: Tina is fine.
The situation changed when I got to be a grown-up lawyer. Tina is not a good lawyer name. (In those days, it still evoked memories of Tina Louise, among others.) For business cards, even though I’m not big on the first-initial-then-name construct (pretentious), the best option seemed to be C. Kristina, so as to provide a clue as about the source for Tina. Life got a little more complicated when I started publishing: my mother had a full set of publications out there in the world under Carolyn Gunsalus. My sister was publishing as Kristin C. Gunsalus. Mulling it over, and finding remarkably few options or degrees of freedom, other than renouncing my name altogether and starting from scratch, I opted for C. K. Gunsalus.
One interesting side-effect of this choice has been the number of people who have assumed this must be a man. There have been a number of interesting and usually beneficial aspects to that assumption. Some are just amusing: Someone once forwarded a string of speculation from a blog that my press must have forced me into the use of initials to make me sound more authoritative, until eventually someone googled and found that ALL my publications, dating from the 70s, use that name. That ended the discussion. Other interesting effects have been the decisions of some editors about how I should be cited when quoted. Nature, for example, for quite some time insisted that my name was and must be Kristina Gunsalus, which caused quite a bit of confusion for a while. Eventually, they relented and will now quote me as C. K. On election ballots and in the local newspaper, the choice was usually C. K. (Tina), because so many people in town know me as Tina… it’s not the name I would have chosen, given the choice, but it is what I got, and I’ve never thought seriously about becoming someone else, although a remarkable number of people, after meeting me once, throughout my life, have thereafter called me “Lisa.” I’ve never understood that, nor the number of people who don’t listen and misspell my last name, even as it’s being spelled out loud for them, in chunks. I say G-U-N and pause, and they write down Gonz. Oh well.
Anyway, that’s the story of the name.
Yesterday’s MRI adventure brought back the headaches, so I’ve taken more vicodin in the last two days than in the last week. That’s likely a minor setback and now, in full tortoise mode, we’re just concentrating on more rest. It’s still warm here, though we’re expecting a cold front by Saturday, including a frost. There’s not much sunshine, especially this afternoon, but the warmth is lovely and we’re appreciating it before the cold arrives. We send you warm greetings and hopes that your weeks are going well.
Showing posts with label Part Three - Settling In To Recover. Show all posts
Showing posts with label Part Three - Settling In To Recover. Show all posts
Wednesday, October 15, 2008
Tuesday, October 14, 2008
One Month Check-up
MRIs are not a lot of fun. Mine today was another contrast MRI, and involved getting an IV port (since removed) and 30-40 minutes of scan. On the other hand, the MRI made the precision of the surgery possible and there are many worse things, plus, it’s over. Our visit with the surgeon afterwards was short and crisp: my progress is good, the tumor void is 80-90 percent refilled with my brain and the incision is healing nicely. He did say that it would take about three months for my scalp/head to feel normal again and the soft spot I dislike so much is likely from the first drill hole. (Ick.) Between the two appointments and the necessary nap afterwards, the morning evaporated. I have another follow-up with him in a month and another MRI in six months. Whatever filling-in my brain is going to do will likely be complete by then; he said that, when tumors get as big as mine did, the void never refills completely and that my progress is encouraging. In the scans, we could clearly see the scar line from the surgery as well as the space not yet filled. It was interesting, especially if I turn off the part that identifies that as any of me. Or my brain. Truly, it is amazing what medical science is able to do these days.
The leaves outside my bedroom window are turning, and they are glorious. I have a few more papers to grade for today’s class, and then class. We are having an old, old family friend for dinner who is in town to give a seminar on campus. He worked with my mother and we are all anxious to see him. (For the inquiring minds wondering about this, I’ll rest between class and dinner.) And then, the rest of the week will be very low-key and restful. It’s likely that I have some accumulated exertion to rest off, plus it would be grand to be able to start getting some exercise again on an organized basis (beyond the therapy). Today the surgeon cleared me to do anything I am comfortable with if the energy is there. We’ll see if things are scheduled properly, if that is possible.
With low-level headaches still going on and still taking a ton of meds, my reading and quickness aren’t returning as quickly as I would like. (Tortoise, tortoise.) In the back of my mind, if I’m honest, I’m worried they will not ever return. Now, in addition to working on my patience and grace, I’m working on being more optimistic. This morning, while occupied with medical stuff, Michael’s cell phone rang and went to voice mail. Characteristically, I worried that maybe something had happened to Shea at school and that we should check it in case it was an emergency, and Michael assumed it was not a big deal and a call that could be checked at leisure. (Need I mention that he was right and I was wrong, again?) Despite my general can-do, problem-solving attitude, I do tend to be a catastrophist. Not about myself, only about those in my zone of caring, or natural disasters. This has some positive consequences, as we are well prepared for a tornado with a storm shelter. We’re less well prepared for a flu epidemic, but it’s there in the back of my mind to think about when there is time.
The yard sign enigma still puzzles me. I get the residential restrictions and the lower-key necessity in a state like California, but not the contrast between the small towns in Illinois and Urbana (also not really “in play,” as they say). Surely people everywhere are the same with the same impulses to root for their cause? Is this a cultural difference somehow?
Speaking of people being people, the great speaker I met in California recommended Mistakes Were Made (but not by me), so I’ve (very slowly) been reading it. This is another book well worth your time about how people justify their own actions, cognitive dissonance, the confirmation bias, etc. It’s by Tavris and Aronson.
That’s the medical progress report. All positive, with a distance still to go. It only takes hard work (can do) and patience (iffier, and still a work in progress). Still, it is not like there is any choice about being patient here: it can go easily and gracefully or by being constantly restive, but the healing is going to take as long as it takes. So, the goal is to be patient and graceful. You might not always recognize it, but that is indeed the goal.
Have a great Tuesday! Big hugs to all of you who are caring and supporting us through this adventure. We send our caring and our profound gratitude back to you.
The leaves outside my bedroom window are turning, and they are glorious. I have a few more papers to grade for today’s class, and then class. We are having an old, old family friend for dinner who is in town to give a seminar on campus. He worked with my mother and we are all anxious to see him. (For the inquiring minds wondering about this, I’ll rest between class and dinner.) And then, the rest of the week will be very low-key and restful. It’s likely that I have some accumulated exertion to rest off, plus it would be grand to be able to start getting some exercise again on an organized basis (beyond the therapy). Today the surgeon cleared me to do anything I am comfortable with if the energy is there. We’ll see if things are scheduled properly, if that is possible.
With low-level headaches still going on and still taking a ton of meds, my reading and quickness aren’t returning as quickly as I would like. (Tortoise, tortoise.) In the back of my mind, if I’m honest, I’m worried they will not ever return. Now, in addition to working on my patience and grace, I’m working on being more optimistic. This morning, while occupied with medical stuff, Michael’s cell phone rang and went to voice mail. Characteristically, I worried that maybe something had happened to Shea at school and that we should check it in case it was an emergency, and Michael assumed it was not a big deal and a call that could be checked at leisure. (Need I mention that he was right and I was wrong, again?) Despite my general can-do, problem-solving attitude, I do tend to be a catastrophist. Not about myself, only about those in my zone of caring, or natural disasters. This has some positive consequences, as we are well prepared for a tornado with a storm shelter. We’re less well prepared for a flu epidemic, but it’s there in the back of my mind to think about when there is time.
The yard sign enigma still puzzles me. I get the residential restrictions and the lower-key necessity in a state like California, but not the contrast between the small towns in Illinois and Urbana (also not really “in play,” as they say). Surely people everywhere are the same with the same impulses to root for their cause? Is this a cultural difference somehow?
Speaking of people being people, the great speaker I met in California recommended Mistakes Were Made (but not by me), so I’ve (very slowly) been reading it. This is another book well worth your time about how people justify their own actions, cognitive dissonance, the confirmation bias, etc. It’s by Tavris and Aronson.
That’s the medical progress report. All positive, with a distance still to go. It only takes hard work (can do) and patience (iffier, and still a work in progress). Still, it is not like there is any choice about being patient here: it can go easily and gracefully or by being constantly restive, but the healing is going to take as long as it takes. So, the goal is to be patient and graceful. You might not always recognize it, but that is indeed the goal.
Have a great Tuesday! Big hugs to all of you who are caring and supporting us through this adventure. We send our caring and our profound gratitude back to you.
Monday, October 13, 2008
Yard Signs and Bumper Stickers
Here’s something that seems puzzling: in my few outings of the last month or so (including the mega-outing for going to California), we’ve seen tons of yard signs for local races, wherever we go—and hardly any for the presidential candidates. On that lovely Sunday when we went to the Salt Fork Art Festival, we drove the back roads as we usually do when we have time. Every small town we passed through had plenty of signs for coroner, county board, and a few legislative races. Except for two, we saw not one presidential yard sign, and even in those, it was only a few houses in one stretch with competing signs. In California, we saw many bumper stickers for presidential candidates and, again, hardly any yard signs even though there were many for other causes/races. In Urbana, yard signs are ubiquitous for all kinds of candidates, causes and, yes, even presidential candidates.
All of us commented on the scarcity of presidential yard signs in Northern California. We were primarily in small towns and then on big highways where we couldn’t see houses or yards. Is this a local thing? Do people in small towns avoid yard signs for the big race to keep the peace with their neighbors? Something else? We were really puzzled. Is it just college towns that do yard signs for the big races with abandon?
The travel home was more like what travel is like these days, with delays and “helpful” policies affecting us. Our flight from San Francisco to Chicago was late departing due to equipment problems, so we ran across O’Hare to catch our Champaign flight. We made it to the gate just as they were calling the boarding, so sweating and happy, we congratulated ourselves. Too soon. When we got to the head of the line, our seat assignments were deemed “invalid” by the machine, so we were shunted to the gate agent. Some helpful airline person or computer program had decided that our SFO flight would be late enough that we’d been moved to a later flight, so even though we were there, and had boarding passes issued by the airline, we couldn’t get on the flight. The really aggravating part was that there were empty seats on the flight—five to be exact—but they went to the standby list and not to us, even though we were ticketed passengers. The gate agent tried valiantly to find a way to get us on the standby list with sufficient priority (all three of us) that we’d get on, and “the computer” wouldn’t let him. Thus, we waited and came home on the next flight. The good news was that we saw people we hadn’t seen in some time and were able to visit and catch up, including with A who is volunteering in Ohio pretty much full time for the Obama campaign and will be until the election. It was fascinating to hear about the work she’s doing and the progress they’re making. We got home later than we’d hoped, but we did get home without incident, and the bag arrived safely that Michael had checked with wine he got at the Bottle Barn, a discount wine place that has fun stuff because the local wineries all send their odd lots there.
I slept eleven hours.
Today brings occupational therapy and law class. The papers for today are almost all graded (a long plane ride plus airport time provides a great out-of-ordinary-life opportunity for grading), so there are only a few more to go. Today’s class is a fun one, and I’m looking forward to the students and a great guest speaker.
Tomorrow is my follow-up MRI and visit with the surgeon to assess how things are going, plus class and dinner with a family friend who worked with my mother and who I have known most of my life. And, as always, there will be plenty of rest in between events. We are acculturating to the rhythm of building in the rest periods as a standard part of our routine. In California, Michael rented a biggish car so that I could sleep on the back seat while others were pursuing activities. We went to the coast for a hike, for example, and I walked with everyone for about 10 or 15 minutes on the flat part, and then went and slept in the car while they all continued hiking. We’d taken my famous buckwheat pillow with us, and it was a warm day; with the windows cracked, there was a great ocean breeze. It was a nice solution.
After this weekend’s experiment, we figure that for at least another few weeks, I’ll do little beyond teaching and the therapy schedule. I’m hoping that by next month, I’ll be able to resume more of my other activities. For now, though, it looks like teaching and grading makes a pretty full plate for me, and matches the energy available. I’m getting stronger every day but am still taking a lot of meds and resting a lot. Plus, the therapy schedule alone fills a lot of time. However, the progress is discernable and I’m focusing on that. As a total aside, the hair around the incision that is growing out is now about ¾ of an inch long and standing straight up. It’s a great reminder that my whole head could have looked like that, and another reason to stop and count my blessings.
As this week begins, I hope that you can anticipate some aspects that interest or excite you, and that you’ll get to make progress on something that matters to you, as well as dealing with all that other “stuff” that constitutes work and life. Don’t forget to stop and appreciate health, family and friends. Hug someone, or reach out to a friend with whom you’ve lost contact. It’s the people that really matter in the end.
All of us commented on the scarcity of presidential yard signs in Northern California. We were primarily in small towns and then on big highways where we couldn’t see houses or yards. Is this a local thing? Do people in small towns avoid yard signs for the big race to keep the peace with their neighbors? Something else? We were really puzzled. Is it just college towns that do yard signs for the big races with abandon?
The travel home was more like what travel is like these days, with delays and “helpful” policies affecting us. Our flight from San Francisco to Chicago was late departing due to equipment problems, so we ran across O’Hare to catch our Champaign flight. We made it to the gate just as they were calling the boarding, so sweating and happy, we congratulated ourselves. Too soon. When we got to the head of the line, our seat assignments were deemed “invalid” by the machine, so we were shunted to the gate agent. Some helpful airline person or computer program had decided that our SFO flight would be late enough that we’d been moved to a later flight, so even though we were there, and had boarding passes issued by the airline, we couldn’t get on the flight. The really aggravating part was that there were empty seats on the flight—five to be exact—but they went to the standby list and not to us, even though we were ticketed passengers. The gate agent tried valiantly to find a way to get us on the standby list with sufficient priority (all three of us) that we’d get on, and “the computer” wouldn’t let him. Thus, we waited and came home on the next flight. The good news was that we saw people we hadn’t seen in some time and were able to visit and catch up, including with A who is volunteering in Ohio pretty much full time for the Obama campaign and will be until the election. It was fascinating to hear about the work she’s doing and the progress they’re making. We got home later than we’d hoped, but we did get home without incident, and the bag arrived safely that Michael had checked with wine he got at the Bottle Barn, a discount wine place that has fun stuff because the local wineries all send their odd lots there.
I slept eleven hours.
Today brings occupational therapy and law class. The papers for today are almost all graded (a long plane ride plus airport time provides a great out-of-ordinary-life opportunity for grading), so there are only a few more to go. Today’s class is a fun one, and I’m looking forward to the students and a great guest speaker.
Tomorrow is my follow-up MRI and visit with the surgeon to assess how things are going, plus class and dinner with a family friend who worked with my mother and who I have known most of my life. And, as always, there will be plenty of rest in between events. We are acculturating to the rhythm of building in the rest periods as a standard part of our routine. In California, Michael rented a biggish car so that I could sleep on the back seat while others were pursuing activities. We went to the coast for a hike, for example, and I walked with everyone for about 10 or 15 minutes on the flat part, and then went and slept in the car while they all continued hiking. We’d taken my famous buckwheat pillow with us, and it was a warm day; with the windows cracked, there was a great ocean breeze. It was a nice solution.
After this weekend’s experiment, we figure that for at least another few weeks, I’ll do little beyond teaching and the therapy schedule. I’m hoping that by next month, I’ll be able to resume more of my other activities. For now, though, it looks like teaching and grading makes a pretty full plate for me, and matches the energy available. I’m getting stronger every day but am still taking a lot of meds and resting a lot. Plus, the therapy schedule alone fills a lot of time. However, the progress is discernable and I’m focusing on that. As a total aside, the hair around the incision that is growing out is now about ¾ of an inch long and standing straight up. It’s a great reminder that my whole head could have looked like that, and another reason to stop and count my blessings.
As this week begins, I hope that you can anticipate some aspects that interest or excite you, and that you’ll get to make progress on something that matters to you, as well as dealing with all that other “stuff” that constitutes work and life. Don’t forget to stop and appreciate health, family and friends. Hug someone, or reach out to a friend with whom you’ve lost contact. It’s the people that really matter in the end.
Saturday, October 11, 2008
Taking Stock, One Month Out
This trip has confirmed, or maybe emphasized, several things about this path to recovery. The most important to me was that I was able to interact effectively and enjoyably with the group at the university; my old “self” was back. That was a huge relief and exhilarating experience. I had a lot of fear about whether I’d be able to pull off what I went there to do. While I still have problems accessing words now and then, the short term memory problems are vastly reduced, and my perception is that mostly, it’s not that different than if these were simply senior moments. The second thing that emerged on this trip is that sleeping is reverting to more normal patterns. After the surgery, there wasn’t any choice but to sleep on my back, slightly elevated, to accommodate the incision and the wonky shoulder. With the healing of the incision (slower than desired, but what else is new?) and the immense improvements (especially while taped) of the shoulder, limitations on sleeping position are significantly reduced, even if not totally gone.
Taking stock overall, the situation is amazing. Who would have predicted I’d be able to travel and work a month after surgery? None of us, especially me, are losing track of how very fortunate we are. We count our blessings and try to retain a sense of joy and appreciation--and not to take any of this for granted.
The status report: most of the areas that felt “dead” have come back and feel almost normal, I am regaining control over the arm, the areas that tingle are vastly reduced, my thumb doesn’t hurt all the time, and my balance improves every day. I started to say, as I have before, that things are vastly better than we had any right to hope or expect, except that is not quite accurate.
I cannot speak for the rest of the family (who, I know, worried a lot about potential brain damage), but my thinking never really extended this far out. Between my denial (let’s face it: what else explains it taking two hours for it to register that a mass in my brain requiring a crainiotomy meant a brain tumor?) and my focus on “Get. It. Out.”, it would be hard to say honestly that I gave much thought to “after” or recovery. Those thoughts that occurred were mostly related to schedules and obligations, as in, how many to cancel? My focus on the moment and the next step were probably useful in getting through the process, but looking back, a little bemusing. Some of that can certainly be explained by the whirlwind of it all. The rest, I think, really does need to be attribute to denial. It’s not just a river in Egypt, as they say.
Otherwise, so long as I pace myself properly (remembering, always, the tortoise), I present a reasonable facsimile of the ordinary Tina. Just not as much as there used to be, nor as there will be again, I hope. When we took the tape off the shoulder this morning, the skin underneath looked just fine, and Michael’s marks are holding up for the retaping. Even without the tape, the range of motion is better, though not as good as with the tape yet. So the progress is discernable, if only I stop to assess and appreciate it, as I’m sure a good tortoise does regularly to help maintain the pace and the direction towards the ultimate goal.
At the university, one of the other presenters in the program had fascinating, complementary knowledge to mine and opened up new horizons for me. He attended all of my sessions and, afterwards, when we were debriefing with the program coordinator, his insights, based partly on body language and micro-expressions, were fascinating. He and I always got to the same place, through completely different paths, with different vocabulary and concepts. I want to learn some of what he knows! His work focuses on nonverbal communicative information (based on NLP and John Grinder’s work) and behaviorism. He and I talked about potential collaborations that could be exciting. Fun!
We had a great visit with D and J, and then with family afterwards.
We are looking forward to a wonderful weekend and we send you our wishes for the same.
Taking stock overall, the situation is amazing. Who would have predicted I’d be able to travel and work a month after surgery? None of us, especially me, are losing track of how very fortunate we are. We count our blessings and try to retain a sense of joy and appreciation--and not to take any of this for granted.
The status report: most of the areas that felt “dead” have come back and feel almost normal, I am regaining control over the arm, the areas that tingle are vastly reduced, my thumb doesn’t hurt all the time, and my balance improves every day. I started to say, as I have before, that things are vastly better than we had any right to hope or expect, except that is not quite accurate.
I cannot speak for the rest of the family (who, I know, worried a lot about potential brain damage), but my thinking never really extended this far out. Between my denial (let’s face it: what else explains it taking two hours for it to register that a mass in my brain requiring a crainiotomy meant a brain tumor?) and my focus on “Get. It. Out.”, it would be hard to say honestly that I gave much thought to “after” or recovery. Those thoughts that occurred were mostly related to schedules and obligations, as in, how many to cancel? My focus on the moment and the next step were probably useful in getting through the process, but looking back, a little bemusing. Some of that can certainly be explained by the whirlwind of it all. The rest, I think, really does need to be attribute to denial. It’s not just a river in Egypt, as they say.
Otherwise, so long as I pace myself properly (remembering, always, the tortoise), I present a reasonable facsimile of the ordinary Tina. Just not as much as there used to be, nor as there will be again, I hope. When we took the tape off the shoulder this morning, the skin underneath looked just fine, and Michael’s marks are holding up for the retaping. Even without the tape, the range of motion is better, though not as good as with the tape yet. So the progress is discernable, if only I stop to assess and appreciate it, as I’m sure a good tortoise does regularly to help maintain the pace and the direction towards the ultimate goal.
At the university, one of the other presenters in the program had fascinating, complementary knowledge to mine and opened up new horizons for me. He attended all of my sessions and, afterwards, when we were debriefing with the program coordinator, his insights, based partly on body language and micro-expressions, were fascinating. He and I always got to the same place, through completely different paths, with different vocabulary and concepts. I want to learn some of what he knows! His work focuses on nonverbal communicative information (based on NLP and John Grinder’s work) and behaviorism. He and I talked about potential collaborations that could be exciting. Fun!
We had a great visit with D and J, and then with family afterwards.
We are looking forward to a wonderful weekend and we send you our wishes for the same.
Wednesday, October 8, 2008
My First Travel Day
The travel went deceptively smoothly. Kearney would suggest that my beginner’s luck kicked in again. Is the first time traveling after brain surgery a category to which it applies? Everything was on time or early, all reservations were recognized, navigation was straightforward, etc. However, it was exhausting. The kind of exhausting where it is hard to sleep afterwards, you are so tired. It was a good thing that I had most of the day to rest and recover. The hotel is a business suite hotel with no restaurant, so I ordered food to be delivered, and when it arrived, was too tired/full/off schedule to eat it. I worried about this for a while, and then realized that I’d been grazing steadily all day on some sandwiches Michael made me and had stupidly eaten food on the flight just because it was in front of me, not because I was hungry or liked it. I put the food in the refrigerator and will use it for meals tomorrow.
At some point during the day, it came to me that, throughout this experience, one of my underlying assumptions has been that it has only been about the tumor and surgery, not the rest of my healthy body. This might well be one source of my failures to pace myself very well so far. At the very least, it bears some thought, because of course, sense and the surgeon have plainly communicated the magnitude of the assault on the whole body presented by the anesthesia and surgical process. With any luck, this insight will assist me in coming days to be more realistic about limits, etc.
Is it true that women mostly shower with their backs to the water while men face the water? I cannot remember who told me this and I have never taken the time to track down whether it is true or simply another urban myth. This came to mind as I was standing sideways to keep the shoulder taping dry, since it needs to last until Michael arrives on Friday. The ends that curled the last time are taped down extra well this time, and there’s no premature loosening so far, but there are still two nights and at least 1.5 days before it can get replaced. Since it helps so much in the use of my arm, I’ve become very protective of the tape. Late last night, we had to modify the upper-arm taping, as an area under it had become inflamed and was seeping/weeping. Michael trimmed the tape so it was no longer covering the bite and treated the angry area with hydrocortisone cream. Overnight, it continued to be unhappy and even blistered, though that has subsided by now. We are hoping that an irritated bite is the full extent of the issue here, and not, as we were warned to watch for, the skin breaking down from being covered by the tape. Fortunately, I think this is the only bite that is covered by the tape. (The no see ‘ums were out in force my last two or three days in the sun.) The occupational therapist warned that this is one of the potential downsides to the kinesio-tape we’re using, though to a lesser extent than for other options. So far, it is plausible that our early, hopeful, theory was right.
In one of those strange leaps, this led me to thinking about things experts know and notice that the rest of us do not. This concept entered my life when I was a child, and the mother of a friend of mine who was a doctor said, in a conversation since lost in the mists of time, that the child we were discussing could not possibly be as old as we thought, as she had no ridges on her teeth, so did not have her permanent teeth yet. That she could tell the difference between permanent and baby teeth struck me like a thunderbolt. And, if she knew things like that, what else could she tell by looking at me? The therapists I’m working with have educated eyes about items I’ve never even considered, and it is always interesting to learn what they are looking for and monitoring. When we took car trips with Ernie, Michael’s dad, we always learned fascinating things about the fields along the highways, as he knew so much about agriculture. He knew about farming methods, equipment, erosion, crop rotation, etc., and could tell a lot about the success of the farmer by assessing the state of the cultivation. Usually, he could tell us the kind of equipment that had last been through the fields, as well as how the crop was doing. It always opened new worlds to us. We miss him a lot, for this and other reasons. But to get back to the point (yes, I know I wander a lot these days and I am hoping it will diminish as I recover more), the educated eye of the expert holds fascination. Is there a place out there on the web that catalogs some of the things experts look for in various dimensions? Wouldn’t it be nice to have a way to get access to the pointers that are meaningful in areas that matter to us to be able to make use of them? Just knowing the questions to ask is sometimes the most important step.
Your thoughts and comments on “enoughness” are providing food for thought. Keep them coming. How much is enough? How do we tell? Is it a teachable concept?
Even though it is early here, my emerging new respect and awareness of my physical state suggests that extra sleep is called for, so I’m going to heed. Tomorrow will be an interesting test of how well I am pacing myself and how my stamina is building.
I send you wishes for at least one moment of beauty and peace in your Thursday.
At some point during the day, it came to me that, throughout this experience, one of my underlying assumptions has been that it has only been about the tumor and surgery, not the rest of my healthy body. This might well be one source of my failures to pace myself very well so far. At the very least, it bears some thought, because of course, sense and the surgeon have plainly communicated the magnitude of the assault on the whole body presented by the anesthesia and surgical process. With any luck, this insight will assist me in coming days to be more realistic about limits, etc.
Is it true that women mostly shower with their backs to the water while men face the water? I cannot remember who told me this and I have never taken the time to track down whether it is true or simply another urban myth. This came to mind as I was standing sideways to keep the shoulder taping dry, since it needs to last until Michael arrives on Friday. The ends that curled the last time are taped down extra well this time, and there’s no premature loosening so far, but there are still two nights and at least 1.5 days before it can get replaced. Since it helps so much in the use of my arm, I’ve become very protective of the tape. Late last night, we had to modify the upper-arm taping, as an area under it had become inflamed and was seeping/weeping. Michael trimmed the tape so it was no longer covering the bite and treated the angry area with hydrocortisone cream. Overnight, it continued to be unhappy and even blistered, though that has subsided by now. We are hoping that an irritated bite is the full extent of the issue here, and not, as we were warned to watch for, the skin breaking down from being covered by the tape. Fortunately, I think this is the only bite that is covered by the tape. (The no see ‘ums were out in force my last two or three days in the sun.) The occupational therapist warned that this is one of the potential downsides to the kinesio-tape we’re using, though to a lesser extent than for other options. So far, it is plausible that our early, hopeful, theory was right.
In one of those strange leaps, this led me to thinking about things experts know and notice that the rest of us do not. This concept entered my life when I was a child, and the mother of a friend of mine who was a doctor said, in a conversation since lost in the mists of time, that the child we were discussing could not possibly be as old as we thought, as she had no ridges on her teeth, so did not have her permanent teeth yet. That she could tell the difference between permanent and baby teeth struck me like a thunderbolt. And, if she knew things like that, what else could she tell by looking at me? The therapists I’m working with have educated eyes about items I’ve never even considered, and it is always interesting to learn what they are looking for and monitoring. When we took car trips with Ernie, Michael’s dad, we always learned fascinating things about the fields along the highways, as he knew so much about agriculture. He knew about farming methods, equipment, erosion, crop rotation, etc., and could tell a lot about the success of the farmer by assessing the state of the cultivation. Usually, he could tell us the kind of equipment that had last been through the fields, as well as how the crop was doing. It always opened new worlds to us. We miss him a lot, for this and other reasons. But to get back to the point (yes, I know I wander a lot these days and I am hoping it will diminish as I recover more), the educated eye of the expert holds fascination. Is there a place out there on the web that catalogs some of the things experts look for in various dimensions? Wouldn’t it be nice to have a way to get access to the pointers that are meaningful in areas that matter to us to be able to make use of them? Just knowing the questions to ask is sometimes the most important step.
Your thoughts and comments on “enoughness” are providing food for thought. Keep them coming. How much is enough? How do we tell? Is it a teachable concept?
Even though it is early here, my emerging new respect and awareness of my physical state suggests that extra sleep is called for, so I’m going to heed. Tomorrow will be an interesting test of how well I am pacing myself and how my stamina is building.
I send you wishes for at least one moment of beauty and peace in your Thursday.
Tuesday, October 7, 2008
Westward Ho...
As this California trip begins, I’m a little apprehensive, and at the same time excited. My world has been tightly constrained for the last four weeks. Since September 10, when I had my surgery, my time has been spent in the hospital, in my house (mostly in my bedroom), at Mettler, and in law school classrooms. I’ve been one or two other places, but not more. Suddenly, a small world expands. A lot. Seeing family members and friends, including those at the university where I’m speaking, is energizing. Travel seems daunting.
Ambivalence like this can be costly. Things we want to do or achieve cost time or energy or involve risk. They can so easily seem overwhelming. Paralyzing, at times. Other times, it is so easy to brush off. Finding balance is the trick—in this, as in so many other areas.
So, forward. Any problem that arises can surely be solved. There will be people to call upon and I’m not short on problem-solving resources. Rest is built into the schedule and Michael and Shea will be there with me on Friday (so as to minimize missed school). I have my noise-cancelling headphones (I wonder if they will go over my sore scalp? I hadn’t even thought about that), plenty of to-read items to shed along the way, my kindle with many books, papers to grade. The week has started well: good occupational and physical therapy sessions, full attendance at both classes (what wonderful students!), strength training and plenty of rest. It has been a strong start. Now, it is up to me to build upon it. Wish me well.
Thank you again for all your caring, support and communication. My progress and forward motion rest on that strong foundation. I hope to be able to repay each of you individually and personally, or if not, by passing along what I’ve received to others. I bombard you with positive thoughts for stellar days.
Ambivalence like this can be costly. Things we want to do or achieve cost time or energy or involve risk. They can so easily seem overwhelming. Paralyzing, at times. Other times, it is so easy to brush off. Finding balance is the trick—in this, as in so many other areas.
So, forward. Any problem that arises can surely be solved. There will be people to call upon and I’m not short on problem-solving resources. Rest is built into the schedule and Michael and Shea will be there with me on Friday (so as to minimize missed school). I have my noise-cancelling headphones (I wonder if they will go over my sore scalp? I hadn’t even thought about that), plenty of to-read items to shed along the way, my kindle with many books, papers to grade. The week has started well: good occupational and physical therapy sessions, full attendance at both classes (what wonderful students!), strength training and plenty of rest. It has been a strong start. Now, it is up to me to build upon it. Wish me well.
Thank you again for all your caring, support and communication. My progress and forward motion rest on that strong foundation. I hope to be able to repay each of you individually and personally, or if not, by passing along what I’ve received to others. I bombard you with positive thoughts for stellar days.
Therapy Ins and Outs
Yesterday, the occupational therapist taught Michael how to tape my shoulder so we can renew the tape at home when it peels loose. She then had him do the actual taping as she coached him. She was pleased with his facility in picking it up, but taken aback by the full Walker approach, which involved marking with his pen on my skin where each piece of tape begins and ends and numbering the order in which the pieces are applied. (When we got home, he took pictures, too, so he had good documentation of the correct approach. And went over the marks with a permanent marker, so they hang around longer. He also added strips of tape at the ends to keep them from curling. He will be able to recreate this with consistency, never you fear.)
As we understand the effect of the taping, it lifts my shoulder blade a bit and thus calls into action the muscles beneath/around it, which otherwise weren’t doing their job. What we didn’t ask, and should have, was how long this will be necessary and what the natural progression is of this treatment approach. The effect of the taping is so terrific—it gives back almost full use of my arm—that was more the focus at the time. With the taping, almost everything I want to do with the arm is possible. Writing on a blackboard is still difficult unless the right elbow is being supported with my left hand. There are still movements at which the arm just fails, but they are so dramatically reduced that, as long as I’m careful, it’s almost as good as new. The shoulder still gets tired and my hand needs to be supported after a while (pockets and table tops are good), but there is real, discernable progress here. It feels good.
We have been trying to understand the difference between physical and occupational therapy; it turns out we’re not alone, as when I consulted Dr. Google, it was a common search that many others have also done. And, there were many sites with information. In my case, the physical therapy is working on gross motor skills and balance and focusing on my leg. The occupational therapist is an arm/hand specialist (specially certified) and is working on my arm and hand. As far as I can tell from my superficial search, occupational therapists focus on life skills (not necessarily occupational skills), so hair and tooth brushing, doing buttons (if that were an issue in my case) and writing on the blackboard are all in that domain. One web page suggested that PTs are state-licensed and OTs are nationally certified, but I didn’t see that elsewhere and didn’t pursue it. For me, the two are coordinating (and with the strength training coach as well), so they are avoiding overlap or contradictory approaches. Over time, the PT may work on my head and neck as well, but right now, the scalp is sensitive enough for that to be out of the question.
Posting the rest of the week may be spotty, as I’m off to California at 6 a.m. tomorrow. I was able to do all three hours of my law class yesterday (hurrah!!!) though the wonder-friend and teacher who covered and is now co-teaching with me and focused pretty hard on getting me to sit down whenever possible. Please note that I followed her advice without question. Overall, I would give myself a B for yesterday: the day was devoted to resting and class, but still probably included a little more of “other” than the situation calls for. At one point, in communicating with my terrific assistant at the law school, I was so fuzzy I was sending her confusing information. I took a nap and cured that, but should have recognized earlier the need for some rest. That is a skill that needs honing. It’s on the list.
Happy Tuesday to all. Take a moment in this day, somewhere, no matter how busy or rushed your day, to give yourself a moment to enjoy or appreciate beauty and friendship.
As we understand the effect of the taping, it lifts my shoulder blade a bit and thus calls into action the muscles beneath/around it, which otherwise weren’t doing their job. What we didn’t ask, and should have, was how long this will be necessary and what the natural progression is of this treatment approach. The effect of the taping is so terrific—it gives back almost full use of my arm—that was more the focus at the time. With the taping, almost everything I want to do with the arm is possible. Writing on a blackboard is still difficult unless the right elbow is being supported with my left hand. There are still movements at which the arm just fails, but they are so dramatically reduced that, as long as I’m careful, it’s almost as good as new. The shoulder still gets tired and my hand needs to be supported after a while (pockets and table tops are good), but there is real, discernable progress here. It feels good.
We have been trying to understand the difference between physical and occupational therapy; it turns out we’re not alone, as when I consulted Dr. Google, it was a common search that many others have also done. And, there were many sites with information. In my case, the physical therapy is working on gross motor skills and balance and focusing on my leg. The occupational therapist is an arm/hand specialist (specially certified) and is working on my arm and hand. As far as I can tell from my superficial search, occupational therapists focus on life skills (not necessarily occupational skills), so hair and tooth brushing, doing buttons (if that were an issue in my case) and writing on the blackboard are all in that domain. One web page suggested that PTs are state-licensed and OTs are nationally certified, but I didn’t see that elsewhere and didn’t pursue it. For me, the two are coordinating (and with the strength training coach as well), so they are avoiding overlap or contradictory approaches. Over time, the PT may work on my head and neck as well, but right now, the scalp is sensitive enough for that to be out of the question.
Posting the rest of the week may be spotty, as I’m off to California at 6 a.m. tomorrow. I was able to do all three hours of my law class yesterday (hurrah!!!) though the wonder-friend and teacher who covered and is now co-teaching with me and focused pretty hard on getting me to sit down whenever possible. Please note that I followed her advice without question. Overall, I would give myself a B for yesterday: the day was devoted to resting and class, but still probably included a little more of “other” than the situation calls for. At one point, in communicating with my terrific assistant at the law school, I was so fuzzy I was sending her confusing information. I took a nap and cured that, but should have recognized earlier the need for some rest. That is a skill that needs honing. It’s on the list.
Happy Tuesday to all. Take a moment in this day, somewhere, no matter how busy or rushed your day, to give yourself a moment to enjoy or appreciate beauty and friendship.
Monday, October 6, 2008
Still working on pacing
Beloved members of my family (Michael and Shea) have the absolutely amazing ability to open a package or letter and leave the packaging sitting on the counter while they move on to the next thing. Apparently, the packaging becomes invisible in the joy of reading the letter or using the item in the package, because even with a garbage can directly underneath the counter, it can sit there undisturbed while other activities proceed. I’ve never actually been able to measure how long such items remain invisible, as my patience with the clutter is shorter than the time it takes the item to re-materialize. I was thinking about this ability to overlook excess items this weekend, as I overdid it again. An ability to overlook things might be just what I need to cultivate, along with my patience. I wasn’t too active, I just worked too hard on grading: there were both regular weekly papers and mid-term papers in front of me, and since they were there, I graded them all. Now I’m tired, and the week is only beginning.
The surgeon says it takes two to three months to recover from the assault to the system that brain surgery (or any major surgery, for that matter) represents, and between the wise counsel about pacing myself everyone is offering and my own intellectual understanding (though not, apparently, much beyond understanding the concept) surely I can make progress on this.
This must be related to enoughness, which if I could only get traction on the concept, likely would offer illumination. How much is enough, anyway? Do you have to think about it in advance, if you don’t have Shea’s ability to recognize it in real time? Apparently so for me, as I do not recognize it in real time. Back to the drawing board. My current idea is to set boundaries in advance and to talk about them, using the principle of commitment to help reinforce their actualization. Thus:
Today brings occupational therapy and my law class. And rest. Only.
The leaves are turning here and it’s beautiful. At the beginning of a week, I wish you balance and peace. Cheers.
The surgeon says it takes two to three months to recover from the assault to the system that brain surgery (or any major surgery, for that matter) represents, and between the wise counsel about pacing myself everyone is offering and my own intellectual understanding (though not, apparently, much beyond understanding the concept) surely I can make progress on this.
This must be related to enoughness, which if I could only get traction on the concept, likely would offer illumination. How much is enough, anyway? Do you have to think about it in advance, if you don’t have Shea’s ability to recognize it in real time? Apparently so for me, as I do not recognize it in real time. Back to the drawing board. My current idea is to set boundaries in advance and to talk about them, using the principle of commitment to help reinforce their actualization. Thus:
Today brings occupational therapy and my law class. And rest. Only.
The leaves are turning here and it’s beautiful. At the beginning of a week, I wish you balance and peace. Cheers.
Sunday, October 5, 2008
Cocooning and Connection
It’s another gorgeous, sunny autumn day here. Yesterday, grading papers in the sunshine in the protected corner of the back yard was theraputic and helped me with my goal of resetting my attitude. As the reality settles in about just how long a slog this is going to be, I’m struggling with my perspective. I’m still enjoying the small pleasures that were so wonderful after surgery and still appreciating how tremendously lucky we have been throughout every stage of this process. At the same time, the contrast between my life a month ago and now is stark. However, the distance I’ve come is remarkable and focusing on the positives here is the order of the day. I’ll get there.
H asked if the taping of my shoulder is like the volleyball players in the Olympics. It’s exactly the same thing and the therapist even mentioned that while she was doing the taping. In my case, the tape is keeping the shoulder blade lifted a bit. The effect is powerful: I could drive our manual transmission car with the shoulder taped and can brush my teeth with one hand for the first time since surgery; sleeping is vastly more comfortable. The area in which there just isn’t control over what the arm does is vastly reduced. The only downside comes from how much the ends curl and the tape peels. The therapist said each taping would last about three days, and we go back again tomorrow.
Right after the surgery, especially, my and our impulse was to hunker down at home and cocoon together. At the same time, the urge to be connected to others was strong—even when, at least then, we didn’t have much energy to spare to actually see people. This blog and the responses to it have been a lifeline. Being able to stay connected to people, knowing you’re all out there and rooting for recovery, is sustaining. There are parts of this that are solitary endeavors, but not as many as you’d think, with the support and encouragement flowing in. Not to mention the good advice and the constant reinforcement to pay attention to the pace of this and not rush it. That has made a big difference in helping me keep my eye on the goal, which is full long-term recovery. In short bursts, I’m a pretty good facsimile of my old self, especially if I have my right hand in my pocket or resting on a table. Before and after those bursts, not quite so much. However, the bursts get longer every day and the time between them shorter. The progress isn’t directly linear, but it is all in the same direction.
So, thank you for staying in contact. It means a lot. Without it, the isolating aspects of this would have extracted a bigger toll. We are in the debt of all of you. Happy Sunday.
H asked if the taping of my shoulder is like the volleyball players in the Olympics. It’s exactly the same thing and the therapist even mentioned that while she was doing the taping. In my case, the tape is keeping the shoulder blade lifted a bit. The effect is powerful: I could drive our manual transmission car with the shoulder taped and can brush my teeth with one hand for the first time since surgery; sleeping is vastly more comfortable. The area in which there just isn’t control over what the arm does is vastly reduced. The only downside comes from how much the ends curl and the tape peels. The therapist said each taping would last about three days, and we go back again tomorrow.
Right after the surgery, especially, my and our impulse was to hunker down at home and cocoon together. At the same time, the urge to be connected to others was strong—even when, at least then, we didn’t have much energy to spare to actually see people. This blog and the responses to it have been a lifeline. Being able to stay connected to people, knowing you’re all out there and rooting for recovery, is sustaining. There are parts of this that are solitary endeavors, but not as many as you’d think, with the support and encouragement flowing in. Not to mention the good advice and the constant reinforcement to pay attention to the pace of this and not rush it. That has made a big difference in helping me keep my eye on the goal, which is full long-term recovery. In short bursts, I’m a pretty good facsimile of my old self, especially if I have my right hand in my pocket or resting on a table. Before and after those bursts, not quite so much. However, the bursts get longer every day and the time between them shorter. The progress isn’t directly linear, but it is all in the same direction.
So, thank you for staying in contact. It means a lot. Without it, the isolating aspects of this would have extracted a bigger toll. We are in the debt of all of you. Happy Sunday.
Friday, October 3, 2008
Enoughness
My mind is finally starting to wake up. It feels like it will be a slow process with this self-absorbed recovery process still commanding a lion’s share of attention, but yesterday’s post at least did get me thinking again about an issue that I have been puzzling about for quite a while: the concept of “enoughness.” The catalyst was writing about one of Shea’s really fine qualities, that she stops when she is full, no matter how good something is or what she is leaving uneaten. That is a form of “enoughness” and it is a powerful and important quality.
The idea of “enoughness” and what it means and how to think about it began to interest me through teaching law and business students. Many of the ethical problems that come up in their lives do so when everything in the environment is measured by money. Yet what draws a lot of students to law school is the desire to make the world better, work for justice, etc. Yes, the desire to have a prestigious, well-paying career is a draw as well, but a remarkable number at least start out idealistically. There is interesting research out there about how law school changes people, not in a positive way, and a fascinating movement among a group of law professors to humanize legal education to help students retain a sense of balance and mission throughout their careers, instead of becoming one of the statistics that make lawyers among the unhappiest, most substance-abusing, most-divorced (and so on) professionals around.
Anyway, a perennial topic in my negotiation course when discussing exercises that raise core questions about each person’s own conduct as a negotiator is managing your money in a way that permits you to walk away from a job if you feel compromised ethically. Many—but by no means all—students cross ethical lines in some of these exercises, which they explain by saying it felt like their obligation to the client, or they knew they wouldn’t look good if they didn’t. (Really.)
An important question I ask during this discussion is whether students want to become the “go-to” person for cutting corners or the person about whom it is said “Oh, don’t ask her, she’d never do that.” That kind of reputation starts at the interview, on the first day, etc: what set of core values are they projecting and what do they seek in their colleagues and supervisors? This is closely related to my ethics lesson on the critical importance of choosing colleagues and supervisors for their character. Anyway, back to the money-managing point, one random piece of advice I always give is to consider sending automatically to savings half of every raise that comes along, and only letting your standard of living/spending escalate by the other half. When you are asked to do something ethically compromising, it is much harder to say no if it means that your mortgage or your children’s tuition might go unpaid.
There’s a seductive trap that young lawyers can fall into of excessive spending because those who go to large law firms work so many hours early in their careers. It can be enticing to spend money on yourself as a form of compensation for not having a life—a feeling of being entitled to toys and fun things because you have so little time. Given the large sums that slosh around in the system for some of these students (last year, starting salaries at the top law firms were around $160,000/year and some include end-of-year bonuses as well), how to develop a sense of proportion?
To cut to the chase, how much money is enough? How much recognition? How much status? How do you recognize enough? How do you achieve balance in your life among your values, including being good at your job and having a satisfying personal life? Before my current adventure started, I was raising this topic with people I ran across because it was on my mind. Elizabeth suggested that maybe the question to ask is “Why more?” She points out that one possible answer is “Because there is more. Why should you have ONLY enough, even if it is enough, if someone else has more or is going for more? There’s a powerful sense that his more will eat away from your more. You have to be at least a little bit greedy to protect yourself from someone else’s greed. Given an ecology of scarcity, only too much is ever enough. Which is why Americans get fat!”
While I started thinking about this in terms of money and tangible “stuff,” the concept is broader. I grapple with it, for example, as retirement looms on my horizon. We have a really good life and we have enough money and enough stuff. We feel fortunate and content in the balance of our lives. We have a great quality of life and live according to a set of values that we believe in. We are incredibly fortunate in our human connections from our family through all of our friends. But how much mattering is enough? How much making a contribution? This medical adventure has not diminished our appreciation of the good fortune of our lives, indeed it has reinforced that sense. At the same time, it increases the intensity of some of the other questions, which also revolve around “enoughness.”
Enoughness raises practical questions well as philosophical ones. So far, the topic has been a slippery and elusive one for me. I continue to think that the idea is important for professionals at the beginnings of their careers. For that matter, it is probably important to people at all stages of their careers. The question is how to get at it in a tangible, useful kind of way. The concept must relate in a fundamental way to some of the social psychology research on happiness and emotional intelligence and maybe even Carol Dweck’s work on motivation, though I have not yet found the right connection or traction point. If any of you have thoughts on enoughness and thinking about it, I’d love to hear them.
Today brings occupational therapy and grading papers. And resting in my new tortoise-incarnation. I hope to have enough energy by late afternoon to go to a retirement celebration. If you’re feeling great today, stop and appreciate your good health, your family and your good friends. Happy Friday.
The idea of “enoughness” and what it means and how to think about it began to interest me through teaching law and business students. Many of the ethical problems that come up in their lives do so when everything in the environment is measured by money. Yet what draws a lot of students to law school is the desire to make the world better, work for justice, etc. Yes, the desire to have a prestigious, well-paying career is a draw as well, but a remarkable number at least start out idealistically. There is interesting research out there about how law school changes people, not in a positive way, and a fascinating movement among a group of law professors to humanize legal education to help students retain a sense of balance and mission throughout their careers, instead of becoming one of the statistics that make lawyers among the unhappiest, most substance-abusing, most-divorced (and so on) professionals around.
Anyway, a perennial topic in my negotiation course when discussing exercises that raise core questions about each person’s own conduct as a negotiator is managing your money in a way that permits you to walk away from a job if you feel compromised ethically. Many—but by no means all—students cross ethical lines in some of these exercises, which they explain by saying it felt like their obligation to the client, or they knew they wouldn’t look good if they didn’t. (Really.)
An important question I ask during this discussion is whether students want to become the “go-to” person for cutting corners or the person about whom it is said “Oh, don’t ask her, she’d never do that.” That kind of reputation starts at the interview, on the first day, etc: what set of core values are they projecting and what do they seek in their colleagues and supervisors? This is closely related to my ethics lesson on the critical importance of choosing colleagues and supervisors for their character. Anyway, back to the money-managing point, one random piece of advice I always give is to consider sending automatically to savings half of every raise that comes along, and only letting your standard of living/spending escalate by the other half. When you are asked to do something ethically compromising, it is much harder to say no if it means that your mortgage or your children’s tuition might go unpaid.
There’s a seductive trap that young lawyers can fall into of excessive spending because those who go to large law firms work so many hours early in their careers. It can be enticing to spend money on yourself as a form of compensation for not having a life—a feeling of being entitled to toys and fun things because you have so little time. Given the large sums that slosh around in the system for some of these students (last year, starting salaries at the top law firms were around $160,000/year and some include end-of-year bonuses as well), how to develop a sense of proportion?
To cut to the chase, how much money is enough? How much recognition? How much status? How do you recognize enough? How do you achieve balance in your life among your values, including being good at your job and having a satisfying personal life? Before my current adventure started, I was raising this topic with people I ran across because it was on my mind. Elizabeth suggested that maybe the question to ask is “Why more?” She points out that one possible answer is “Because there is more. Why should you have ONLY enough, even if it is enough, if someone else has more or is going for more? There’s a powerful sense that his more will eat away from your more. You have to be at least a little bit greedy to protect yourself from someone else’s greed. Given an ecology of scarcity, only too much is ever enough. Which is why Americans get fat!”
While I started thinking about this in terms of money and tangible “stuff,” the concept is broader. I grapple with it, for example, as retirement looms on my horizon. We have a really good life and we have enough money and enough stuff. We feel fortunate and content in the balance of our lives. We have a great quality of life and live according to a set of values that we believe in. We are incredibly fortunate in our human connections from our family through all of our friends. But how much mattering is enough? How much making a contribution? This medical adventure has not diminished our appreciation of the good fortune of our lives, indeed it has reinforced that sense. At the same time, it increases the intensity of some of the other questions, which also revolve around “enoughness.”
Enoughness raises practical questions well as philosophical ones. So far, the topic has been a slippery and elusive one for me. I continue to think that the idea is important for professionals at the beginnings of their careers. For that matter, it is probably important to people at all stages of their careers. The question is how to get at it in a tangible, useful kind of way. The concept must relate in a fundamental way to some of the social psychology research on happiness and emotional intelligence and maybe even Carol Dweck’s work on motivation, though I have not yet found the right connection or traction point. If any of you have thoughts on enoughness and thinking about it, I’d love to hear them.
Today brings occupational therapy and grading papers. And resting in my new tortoise-incarnation. I hope to have enough energy by late afternoon to go to a retirement celebration. If you’re feeling great today, stop and appreciate your good health, your family and your good friends. Happy Friday.
Thursday, October 2, 2008
Autumn, and aging
Autumn has arrived in central Illinois. You can be certain of this because, yesterday, Michael closed all the air conditioning vents AND plugged in my heated towel rack. The towel rack surely leads to fearsome clashes between his inner energy police and his inner caretaker, as a warm towel rack is surely a decadent and wasteful use of energy—except I enjoy it so very much. Score another one for what a nice guy he is. I hasten to assure you, though, that otherwise, the inner house doors are all closed to keep the warmth in the rooms we occupy and not rushing up the stairs or into the hallways, the power strips are turned off into which are plugged the instant-on appliances we do not use that often, and almost all of light bulbs are low-energy fluorescents.
Yesterday, the sum total of my activity was doing a load of wash and taking naps. I guess I was more tired than I’d thought. I had a great visit late in the day with M, which made me feel less like a total slug and a little more like my old self—at least I could carry on a coherent conversation. She reassured me that it is not necessarily related to my surgery that I couldn’t come up with the word “sailing” in class on Monday (instead resorting to describing a boat on a voyage as “driving around the oceans”) until a student helpfully provided the word, or couldn’t recall the name of my former colleague from Friday night until it popped into my head Sunday morning. I took the reassurance. In the course of our conversation, she asked questions that helped me realize that in our counting exercise, we probably should have been a bit more careful to keep track of hospital versus clinic employees. Thinking back, there likely was a different pattern in their reactions, revealing a different general level of contentment in their employment situations. Yesterday, we also started dialing down the pain medicines, switching during the day from generic vicodin to over-the-counter NSAIDs. This is definite progress, even if it worked for daytime, but not yet the night.
Today brings both physical therapy and strength training, and another week’s papers are in and ready to grade. I hope very much to go out to lunch, as well. That will be a first since this whole, strange odyssey started, and another small step towards reclaiming the life I had just a month ago. Yesterday, I postponed another speaking engagement scheduled for later in the month, one planned as a full-day event, trying to be realistic about energy levels. As my physical therapist pointed out to me the other day, every time he reads the story, the tortoise wins.
When I wished Michael a happy birthday this morning, his response was “I’m old enough for Social Security now.” He doesn’t feel that old and I don’t think of him that way, either… aging is a strange and interesting process. On the one hand, at least as we’re experiencing it, are the quiet pleasures of settling into your own skin and knowing yourself better. There is increased focus and less flapping about. Many things are simpler because you know what you like—and don’t—and can spend your energies on things that matter. (This medical adventure has certainly reinforced the importance of moving steadily in that direction.) From little things like learning just to go ahead and buy two of something I like a lot and will wear consistently over time—and not buying things that I will never wear no matter how appealing in the store—to knowing the causes to spend time and money on, choices are simplified.
Maybe we’re just late bloomers in becoming comfortable in our own skins: Anna Shea is and has been more comfortable with herself her whole life than I’ve become by 50ish. From small things to large, she’s just comfortable with who she is. Though she has a tremendous sweet tooth (courtesy of Michael), she’s had a sense of “enoughness” that has awed us since she was very small. If she’s eating ice cream or chocolate or cookies or… you get the idea, she quite often stops eating, pushes the rest away and says “this is really good and I’m full now.” We’ve watched her in groups of peers as well as with adults take a position in opposition to the group without getting confrontational or unpleasant, just being willing to say “I don’t see it that way.” She’s been good at telling friends she doesn’t want to go to a party or a movie or the like, and peer pressure doesn’t seem to be an issue. She spent part of an afternoon once driving around a distinguished visitor who had several errands to run. I later learned from him that they’d spent a good deal of their time together in a discussion over a book they’d both read and about which they disagreed vehemently. He said he’d forgotten at times that she was only a child. There are times I’ve watched her do something at 8 or 13 or 17 and thought “I’d like to be able to do that at my age as smoothly as she does!” One of our main parenting goals with this remarkable child has always been to graft even the thinnest veneer of politeness on top of her forthright personality. I’d say our track record is at best mixed. We have been lucky in that she is inherently a kind person, so her direct comments are rarely mean-spirited, just, well, direct. The most important thing to know about Shea is that if you don’t really want to know what she thinks, do not ask.
On the flip side of the aging matter are the design issues with which one can take umbrage. Leaving aside anomalous brain tumors, let’s think about the more mundane, irritating flaws like the arthritis in my hip joints or Michael’s shoulder (my personal theory is that someone neglected to take the extended warranty option when offered) and various other indignities of the aging body.
I have been reflecting on the fact that at 40, I had my gallbladder out and at 50 had a brain tumor removed. The morbid mind might wonder what will come out at 60. As the morbid mind is not welcome, it is banished from this discussion. The physician who diagnosed the need for the gallbladder removal, by the way, did so by telling us “Female, fat and forty—bound to be gallbladder!” I wish I’d known then and could have shared with him the data on which physicians get sued for malpractice. The short version is that it is not those with poor technical skills, it is those with poor communication skills. This always grabs the attention of the medical students and residents in communications-skills classes. In this, as in so much else, likeability matters. You hear lawyers talk about the plaintiffs who consistently say things like “oh, I know it was Dr. Smith who cut off the wrong leg, but he was so nice to my mother; don’t sue him. Just sue everyone else who was in the room. They were jerks.” Strong communication skills also increase patient adherence to medical advice and physician work satisfaction; while the students and residents think those are good things, avoiding getting sued always is the main grabber.
A wonderful new book, by the way, on what we know about influencing and persuasion from the social psychology research is “Yes!: 50 Scientifically Proven Ways to Be Persuasive” by Noah J. Goldstein, Steve J. Martin, and Robert B. Cialdini. (Sorry, I don’t know how to underline when putting text in this thing.) It is an easy read and great food for thought. Well worth your time.
Again, I’ve wandered about a good deal, and for longer than seems reasonable. For those who read all of this and send me your thoughts and comments, I thank you for your patience and forbearance. These writings have helped me organize and process this whole series of events, and the responses of you all have really helped. However, maybe becoming more succinct should become one of my goals, along with becoming more patient and graceful. Meanwhile, happy Thursday.
Yesterday, the sum total of my activity was doing a load of wash and taking naps. I guess I was more tired than I’d thought. I had a great visit late in the day with M, which made me feel less like a total slug and a little more like my old self—at least I could carry on a coherent conversation. She reassured me that it is not necessarily related to my surgery that I couldn’t come up with the word “sailing” in class on Monday (instead resorting to describing a boat on a voyage as “driving around the oceans”) until a student helpfully provided the word, or couldn’t recall the name of my former colleague from Friday night until it popped into my head Sunday morning. I took the reassurance. In the course of our conversation, she asked questions that helped me realize that in our counting exercise, we probably should have been a bit more careful to keep track of hospital versus clinic employees. Thinking back, there likely was a different pattern in their reactions, revealing a different general level of contentment in their employment situations. Yesterday, we also started dialing down the pain medicines, switching during the day from generic vicodin to over-the-counter NSAIDs. This is definite progress, even if it worked for daytime, but not yet the night.
Today brings both physical therapy and strength training, and another week’s papers are in and ready to grade. I hope very much to go out to lunch, as well. That will be a first since this whole, strange odyssey started, and another small step towards reclaiming the life I had just a month ago. Yesterday, I postponed another speaking engagement scheduled for later in the month, one planned as a full-day event, trying to be realistic about energy levels. As my physical therapist pointed out to me the other day, every time he reads the story, the tortoise wins.
When I wished Michael a happy birthday this morning, his response was “I’m old enough for Social Security now.” He doesn’t feel that old and I don’t think of him that way, either… aging is a strange and interesting process. On the one hand, at least as we’re experiencing it, are the quiet pleasures of settling into your own skin and knowing yourself better. There is increased focus and less flapping about. Many things are simpler because you know what you like—and don’t—and can spend your energies on things that matter. (This medical adventure has certainly reinforced the importance of moving steadily in that direction.) From little things like learning just to go ahead and buy two of something I like a lot and will wear consistently over time—and not buying things that I will never wear no matter how appealing in the store—to knowing the causes to spend time and money on, choices are simplified.
Maybe we’re just late bloomers in becoming comfortable in our own skins: Anna Shea is and has been more comfortable with herself her whole life than I’ve become by 50ish. From small things to large, she’s just comfortable with who she is. Though she has a tremendous sweet tooth (courtesy of Michael), she’s had a sense of “enoughness” that has awed us since she was very small. If she’s eating ice cream or chocolate or cookies or… you get the idea, she quite often stops eating, pushes the rest away and says “this is really good and I’m full now.” We’ve watched her in groups of peers as well as with adults take a position in opposition to the group without getting confrontational or unpleasant, just being willing to say “I don’t see it that way.” She’s been good at telling friends she doesn’t want to go to a party or a movie or the like, and peer pressure doesn’t seem to be an issue. She spent part of an afternoon once driving around a distinguished visitor who had several errands to run. I later learned from him that they’d spent a good deal of their time together in a discussion over a book they’d both read and about which they disagreed vehemently. He said he’d forgotten at times that she was only a child. There are times I’ve watched her do something at 8 or 13 or 17 and thought “I’d like to be able to do that at my age as smoothly as she does!” One of our main parenting goals with this remarkable child has always been to graft even the thinnest veneer of politeness on top of her forthright personality. I’d say our track record is at best mixed. We have been lucky in that she is inherently a kind person, so her direct comments are rarely mean-spirited, just, well, direct. The most important thing to know about Shea is that if you don’t really want to know what she thinks, do not ask.
On the flip side of the aging matter are the design issues with which one can take umbrage. Leaving aside anomalous brain tumors, let’s think about the more mundane, irritating flaws like the arthritis in my hip joints or Michael’s shoulder (my personal theory is that someone neglected to take the extended warranty option when offered) and various other indignities of the aging body.
I have been reflecting on the fact that at 40, I had my gallbladder out and at 50 had a brain tumor removed. The morbid mind might wonder what will come out at 60. As the morbid mind is not welcome, it is banished from this discussion. The physician who diagnosed the need for the gallbladder removal, by the way, did so by telling us “Female, fat and forty—bound to be gallbladder!” I wish I’d known then and could have shared with him the data on which physicians get sued for malpractice. The short version is that it is not those with poor technical skills, it is those with poor communication skills. This always grabs the attention of the medical students and residents in communications-skills classes. In this, as in so much else, likeability matters. You hear lawyers talk about the plaintiffs who consistently say things like “oh, I know it was Dr. Smith who cut off the wrong leg, but he was so nice to my mother; don’t sue him. Just sue everyone else who was in the room. They were jerks.” Strong communication skills also increase patient adherence to medical advice and physician work satisfaction; while the students and residents think those are good things, avoiding getting sued always is the main grabber.
A wonderful new book, by the way, on what we know about influencing and persuasion from the social psychology research is “Yes!: 50 Scientifically Proven Ways to Be Persuasive” by Noah J. Goldstein, Steve J. Martin, and Robert B. Cialdini. (Sorry, I don’t know how to underline when putting text in this thing.) It is an easy read and great food for thought. Well worth your time.
Again, I’ve wandered about a good deal, and for longer than seems reasonable. For those who read all of this and send me your thoughts and comments, I thank you for your patience and forbearance. These writings have helped me organize and process this whole series of events, and the responses of you all have really helped. However, maybe becoming more succinct should become one of my goals, along with becoming more patient and graceful. Meanwhile, happy Thursday.
Tuesday, September 30, 2008
Oblivious, or Denial?
Here we are, what, almost three weeks after surgery? And I’m just now figuring out that the most sore part of my head and scalp is not the incision, but a part that experienced no cutting at all. I’m not sure why this has dawned on me so slowly, but it is the back of my head and I cannot see it. I do not much related to it in the photos, either, for some reason.
In any event, the most uncomfortable part of my head is on the left side, behind my ear. The incision, if you saw the pictures (or if you preferred not to look, I’ll just describe it for you) is in the shape of a reverse “C”. Think of a square: the two horizontal legs and the vertical on the right-hand side that connect them are the incision. The resulting seam is mostly painless and healing remarkably; Michael says he can hardly detect the vertical line, even when he knows where it is and the two horizontal lines are only slightly more detectable.
On the left side, though, where there were no cuts of any sort to the scalp, my head is “boggy” and very sore. The sensation of near-painful tingling is a lot like my right thumb, which aches all the time with an unpleasant sensation. It’s not quite numb (that would be better) but almost. That area of my scalp is by far the most tender and sore. I wonder if this is because the skin was folded back there during the surgery and this is some after-effect from that? Or perhaps some cutting on the bone underneath which is not evident with the scalp covering it again. Another question for Dr. Google about how this surgery is done, I guess.
The very best thing for sleeping turns out to be my buckwheat pillows. I gave a talk a few years back at a research integrity conference in New York City, where I was placed at a funky boutique hotel that advertised itself as focusing on holistic health. They had bowls of apples everywhere, and every staff member, at the beginning and end of every interaction lowered their voice an octave or so and intoned in a quasi-musical way “Be well.” Among other features, each room had a Pillow Menu one was encouraged to discuss with the Pillow Concierge. Being adventuresome, in the two nights I was there, I tried every pillow on the menu, after very serious discussions about each with the Pillow Concierge--who could hold these conversations without giggling, which I thought was an impressive testimony to something or other. Pretension? Seriousness of mind I don’t personally possess? The Pillow Menu had, as I recall, about eight choices: there were down pillows of different lofts (very solemn discussions of the pros and cons of each variety of down), Swedish memory foam, hypo-allergenic, and … I don’t remember… and buckwheat. Of all the pillows, I was captivated by the buckwheat option. These pillows are not really soft, but can be manipulated into just about any shape or position because of the buckwheat grains and that arrangement holds once set. I bought some as soon as I got home and have been using them ever since.
The buckwheat pillows have been a real boon throughout this recovery, and I even used them while I was in the hospital. They can be arranged so that there was no pressure at all on the sore spots and lots of support everywhere else. I think they should be standard equipment for recovering from head surgery. Regular pillows hurt!
Yesterday brought physical therapy (short session, mild effort, 2 hour nap afterwards) and half of my law class. Wonder-friend lawyer teaching it is doing a magnificent job; me, not so much. I did manage to write on the board, using the tooth-brushing technique (two hands: left arm supports the right elbow and arm). It wasn’t pretty or fast, but it did sort of work. Mostly, she wrote on the board. My timing is terrible and I didn’t leave anyone enough room to work things through. Also not pretty. I can only hope I’ll get better soon. The students in this class continue to be tremendously good-natured and generous about the whole disrupted experience. Today brings occupational therapy and strength training and, I hope, an hour of my other class, which I haven’t seen since the Tuesday before surgery. They, too, have a tremendous replacement who has parachuted in with enthusiasm and energy and to whom I’m deeply indebted. Plus, it’s another group with a great group personality.
Meanwhile, the comic strips are becoming more coherent to me in recent days, which although a fairly minor affair, is a step forward any way you look at it. What isn’t returning, I note with consternation in looking back over blog entries, is my inner copy editor. I’m disappointed with the number of errors throughout these posts, not to mention the incidence of truly hideous sentences. I’ve learned that I often write my way to my point, so it’s important, after finishing a draft, to go back and turn many of my sentences inside out, moving the point from end to the front. However, reviewing what’s here, I see far more sentences that meander along than leaves me comfortable—and only some of them conclude with any sort of point. And there are so many words to convey some pretty simple ideas. Whew.
To a certain extent, the truly obnoxious sentences correlate with days when I didn’t feel very good. Ok, I can live with that. I’m working on excusing myself for both those sentences and the other flaws that make me cringe, and remembering that you nice people have likely been cutting me a break as you went along. Probably, even, I notice the problems more than you have. With certainty, I am more critical of them. Yet another opportunity presents itself for me to work on my grace and patience. Great news. (A family tag line and used sarcastically; it’s a long story. But “great news” is generally not great news, used in this fashion.) I’ll see what I can do. Meanwhile, I’m going to be watching carefully for my inner copy editor to figure out if she’s still around and can be roused.
The New York Times today has a column about finding medical information on the internet and some of the communities related to particular diagnoses. When I was up in the night, I checked out some of the meningioma communities… reminding me once again just how profoundly lucky I have been throughout this process. I’m going back to rest up and to do my best to manage my stamina/strength today. Enjoy your levels of energy—I always took mine for granted before and I’m seeing now that was, as they say, an oversight. Have a great Tuesday.
In any event, the most uncomfortable part of my head is on the left side, behind my ear. The incision, if you saw the pictures (or if you preferred not to look, I’ll just describe it for you) is in the shape of a reverse “C”. Think of a square: the two horizontal legs and the vertical on the right-hand side that connect them are the incision. The resulting seam is mostly painless and healing remarkably; Michael says he can hardly detect the vertical line, even when he knows where it is and the two horizontal lines are only slightly more detectable.
On the left side, though, where there were no cuts of any sort to the scalp, my head is “boggy” and very sore. The sensation of near-painful tingling is a lot like my right thumb, which aches all the time with an unpleasant sensation. It’s not quite numb (that would be better) but almost. That area of my scalp is by far the most tender and sore. I wonder if this is because the skin was folded back there during the surgery and this is some after-effect from that? Or perhaps some cutting on the bone underneath which is not evident with the scalp covering it again. Another question for Dr. Google about how this surgery is done, I guess.
The very best thing for sleeping turns out to be my buckwheat pillows. I gave a talk a few years back at a research integrity conference in New York City, where I was placed at a funky boutique hotel that advertised itself as focusing on holistic health. They had bowls of apples everywhere, and every staff member, at the beginning and end of every interaction lowered their voice an octave or so and intoned in a quasi-musical way “Be well.” Among other features, each room had a Pillow Menu one was encouraged to discuss with the Pillow Concierge. Being adventuresome, in the two nights I was there, I tried every pillow on the menu, after very serious discussions about each with the Pillow Concierge--who could hold these conversations without giggling, which I thought was an impressive testimony to something or other. Pretension? Seriousness of mind I don’t personally possess? The Pillow Menu had, as I recall, about eight choices: there were down pillows of different lofts (very solemn discussions of the pros and cons of each variety of down), Swedish memory foam, hypo-allergenic, and … I don’t remember… and buckwheat. Of all the pillows, I was captivated by the buckwheat option. These pillows are not really soft, but can be manipulated into just about any shape or position because of the buckwheat grains and that arrangement holds once set. I bought some as soon as I got home and have been using them ever since.
The buckwheat pillows have been a real boon throughout this recovery, and I even used them while I was in the hospital. They can be arranged so that there was no pressure at all on the sore spots and lots of support everywhere else. I think they should be standard equipment for recovering from head surgery. Regular pillows hurt!
Yesterday brought physical therapy (short session, mild effort, 2 hour nap afterwards) and half of my law class. Wonder-friend lawyer teaching it is doing a magnificent job; me, not so much. I did manage to write on the board, using the tooth-brushing technique (two hands: left arm supports the right elbow and arm). It wasn’t pretty or fast, but it did sort of work. Mostly, she wrote on the board. My timing is terrible and I didn’t leave anyone enough room to work things through. Also not pretty. I can only hope I’ll get better soon. The students in this class continue to be tremendously good-natured and generous about the whole disrupted experience. Today brings occupational therapy and strength training and, I hope, an hour of my other class, which I haven’t seen since the Tuesday before surgery. They, too, have a tremendous replacement who has parachuted in with enthusiasm and energy and to whom I’m deeply indebted. Plus, it’s another group with a great group personality.
Meanwhile, the comic strips are becoming more coherent to me in recent days, which although a fairly minor affair, is a step forward any way you look at it. What isn’t returning, I note with consternation in looking back over blog entries, is my inner copy editor. I’m disappointed with the number of errors throughout these posts, not to mention the incidence of truly hideous sentences. I’ve learned that I often write my way to my point, so it’s important, after finishing a draft, to go back and turn many of my sentences inside out, moving the point from end to the front. However, reviewing what’s here, I see far more sentences that meander along than leaves me comfortable—and only some of them conclude with any sort of point. And there are so many words to convey some pretty simple ideas. Whew.
To a certain extent, the truly obnoxious sentences correlate with days when I didn’t feel very good. Ok, I can live with that. I’m working on excusing myself for both those sentences and the other flaws that make me cringe, and remembering that you nice people have likely been cutting me a break as you went along. Probably, even, I notice the problems more than you have. With certainty, I am more critical of them. Yet another opportunity presents itself for me to work on my grace and patience. Great news. (A family tag line and used sarcastically; it’s a long story. But “great news” is generally not great news, used in this fashion.) I’ll see what I can do. Meanwhile, I’m going to be watching carefully for my inner copy editor to figure out if she’s still around and can be roused.
The New York Times today has a column about finding medical information on the internet and some of the communities related to particular diagnoses. When I was up in the night, I checked out some of the meningioma communities… reminding me once again just how profoundly lucky I have been throughout this process. I’m going back to rest up and to do my best to manage my stamina/strength today. Enjoy your levels of energy—I always took mine for granted before and I’m seeing now that was, as they say, an oversight. Have a great Tuesday.
Monday, September 29, 2008
Thoughts on Being a Patient
As we kept logs on the medical staff we encountered in our adventure, we also thought about what we brought to each interaction.
It can be overwhelming to be caught up in a large medical system, especially when you’re either frightened or don’t feel good, or both. These systems operate on their own rhythms and for their own purposes. Maintaining some sense of ourselves and some feeling of control (illusory or not) was what led us to our counting exercise, for example.
At the same time, we tried to see how this looked from the other end of the telescope. All the people we were seeing were working, and their work has them dealing with large numbers of people, not just us. Even more, they don’t just deal with a constant flow of people in their jobs, they deal with many people in extremis, not all of whom are, or are capable of, being very nice about it. We clearly had selfish motives in thinking about our conduct, beyond our own family standards for behavior and good manners. We wanted the best from the professionals we encountered, we wanted their attention and we wanted to be treated with respect and as individuals.
One of the basic rules of the kind of professional “soft skills” (negotiation, communication, leadership, ethics) I teach is to work on cultivating curiosity. The best way to become a better negotiator, for example, is to ask more questions—and to listen genuinely to the answers, processing them through your brain, not just waiting through the other person’s noise until you get to talk again.
Our logging, in addition to giving us some sense of control, then, was also a way for us to help ourselves focus on what the other person in each interaction was doing, and how. It provided a structured reminder to be curious about each person with whom we interacted—even when we didn’t feel like it, which we didn’t, always. The discipline helped us bring curiosity to each interaction: it made us more observant and other-focused, and helped us see each person as an individual, not as a cog in the system acting upon us. (This was helpful, because it did feel that way sometimes and it would not have been hard to get into a wrangle with one or two of the folks we’d encountered, if we hadn’t been exercising some self-control and awareness of what was going on.)
Our efforts probably made us more interesting, and we hope, more pleasant. Both common sense and social psychology will tell you that likeability matters (it is much easier and more appealing to do something for someone who is being pleasant to you than someone who is berating, insulting or rude) in all kinds of interactions. When we could bring a sense of interest in the professional approach of the staff working with us, and find something either to ask about or comment upon, we were helping to shape how the encounter went. Given the sheer numbers of people passing through the work lives of these professionals, this seems like not only a good, self-protective idea, but maybe also our obligation as part of a two-way human interaction.
Some of this is just common courtesy, but I think it goes beyond that. We were often able to change the direction of an interaction in a more positive way by paying attention to what the other person was doing, noticing something about it and asking questions. This often helped to slow the pace and make the interaction more purposeful, thoughtful and engaged. I’m guessing this made the interactions better on both sides. Being purposeful about what we were doing helped us more than just giving us the sense of control. Maybe it was even an obligation—one we had not really contemplated—on us as participants in the process. I don’t want to get carried away putting obligations on sick people. Still. I know people whose research deals with patient advocacy training and related issues, and I think I’ll be paying attention to that in a whole new way as I recover from this experience. If finding a way to feel some control at a helpless time can improve the process for all, maybe this is something I need to think about more seriously than I have in the past.
We learned some interesting things along the way. In the aggregate, we found a workforce that was committed to their work and seemed reasonably content in it. We found a system that was working on growing its own, with staff being supported in going to school to get to a higher level of certification. We heard spontaneous stories about how, when the regular systems (for example, 12-hour shifts for nurses) didn’t work with family life, other schedules were provided. We encountered staff engaged in serious problem-solving and clearly felt it was within their mandate to do so and to advocate for patients.
Bear in mind that we had some significant advantages in being able to take this approach, especially at the beginning (well, ok, not in the emergency room that first day) when we were fully functioning and not experiencing immediate symptoms other than needing to schedule brain surgery.
Yesterday’s post stimulated a wave of thoughtful, wise and interesting comments. I’m still thinking about some of the points raised and will be responding personally and here after a little more processing. For example, Doug wrote yesterday “I believe that feeling in control is a healthy state to be in, and aids in quick recovery… Taking control of that which you can control is healthy and aids healing. The sweet spot is the limit of what you can, actually, control. Taking control of that which you can control is healthy and aids healing. Trying to control that which you can't hurts health. (I believe there should be something about "and it annoys the pig," shouldn't there?)” … If you can control it, go for it. If you can’t, then go sit in the sun.” Seems right to us.
Otherwise, yesterday was another down-ish day. None of us felt very good all day and I’m still working on internalizing a tortoise-approach and level of energy when it’s very “not me.” We started getting not-bills from our health insurance this weekend, with lots of numbers. We are most interested in how the bills will look. In the early 1980s, we couldn’t make heads nor tails of Dorothy’s hospital bills (heart problems) and ended up hiring a medical bill auditor to help. Similarly, some of Ernie’s hospital bills (55 days worth) might as well have been written in Urdu, for all that we could make out of them. The numbers were staggering, though since he’d been a federal employee, the share we paid out of his estate—of the DISCOUNTED figures, because he had health insurance, go figure—was miniscule. It appears to us that I’m very close to my maximum co-pay simply from the emergency room visit and the radiology. We haven’t even seen the neurosurgery, intensive care, or other hospital stay bills. Stay tuned.
We all continue to be most grateful for the connections and the time you take to stay in contact. I’m off to physical therapy this morning.
It can be overwhelming to be caught up in a large medical system, especially when you’re either frightened or don’t feel good, or both. These systems operate on their own rhythms and for their own purposes. Maintaining some sense of ourselves and some feeling of control (illusory or not) was what led us to our counting exercise, for example.
At the same time, we tried to see how this looked from the other end of the telescope. All the people we were seeing were working, and their work has them dealing with large numbers of people, not just us. Even more, they don’t just deal with a constant flow of people in their jobs, they deal with many people in extremis, not all of whom are, or are capable of, being very nice about it. We clearly had selfish motives in thinking about our conduct, beyond our own family standards for behavior and good manners. We wanted the best from the professionals we encountered, we wanted their attention and we wanted to be treated with respect and as individuals.
One of the basic rules of the kind of professional “soft skills” (negotiation, communication, leadership, ethics) I teach is to work on cultivating curiosity. The best way to become a better negotiator, for example, is to ask more questions—and to listen genuinely to the answers, processing them through your brain, not just waiting through the other person’s noise until you get to talk again.
Our logging, in addition to giving us some sense of control, then, was also a way for us to help ourselves focus on what the other person in each interaction was doing, and how. It provided a structured reminder to be curious about each person with whom we interacted—even when we didn’t feel like it, which we didn’t, always. The discipline helped us bring curiosity to each interaction: it made us more observant and other-focused, and helped us see each person as an individual, not as a cog in the system acting upon us. (This was helpful, because it did feel that way sometimes and it would not have been hard to get into a wrangle with one or two of the folks we’d encountered, if we hadn’t been exercising some self-control and awareness of what was going on.)
Our efforts probably made us more interesting, and we hope, more pleasant. Both common sense and social psychology will tell you that likeability matters (it is much easier and more appealing to do something for someone who is being pleasant to you than someone who is berating, insulting or rude) in all kinds of interactions. When we could bring a sense of interest in the professional approach of the staff working with us, and find something either to ask about or comment upon, we were helping to shape how the encounter went. Given the sheer numbers of people passing through the work lives of these professionals, this seems like not only a good, self-protective idea, but maybe also our obligation as part of a two-way human interaction.
Some of this is just common courtesy, but I think it goes beyond that. We were often able to change the direction of an interaction in a more positive way by paying attention to what the other person was doing, noticing something about it and asking questions. This often helped to slow the pace and make the interaction more purposeful, thoughtful and engaged. I’m guessing this made the interactions better on both sides. Being purposeful about what we were doing helped us more than just giving us the sense of control. Maybe it was even an obligation—one we had not really contemplated—on us as participants in the process. I don’t want to get carried away putting obligations on sick people. Still. I know people whose research deals with patient advocacy training and related issues, and I think I’ll be paying attention to that in a whole new way as I recover from this experience. If finding a way to feel some control at a helpless time can improve the process for all, maybe this is something I need to think about more seriously than I have in the past.
We learned some interesting things along the way. In the aggregate, we found a workforce that was committed to their work and seemed reasonably content in it. We found a system that was working on growing its own, with staff being supported in going to school to get to a higher level of certification. We heard spontaneous stories about how, when the regular systems (for example, 12-hour shifts for nurses) didn’t work with family life, other schedules were provided. We encountered staff engaged in serious problem-solving and clearly felt it was within their mandate to do so and to advocate for patients.
Bear in mind that we had some significant advantages in being able to take this approach, especially at the beginning (well, ok, not in the emergency room that first day) when we were fully functioning and not experiencing immediate symptoms other than needing to schedule brain surgery.
Yesterday’s post stimulated a wave of thoughtful, wise and interesting comments. I’m still thinking about some of the points raised and will be responding personally and here after a little more processing. For example, Doug wrote yesterday “I believe that feeling in control is a healthy state to be in, and aids in quick recovery… Taking control of that which you can control is healthy and aids healing. The sweet spot is the limit of what you can, actually, control. Taking control of that which you can control is healthy and aids healing. Trying to control that which you can't hurts health. (I believe there should be something about "and it annoys the pig," shouldn't there?)” … If you can control it, go for it. If you can’t, then go sit in the sun.” Seems right to us.
Otherwise, yesterday was another down-ish day. None of us felt very good all day and I’m still working on internalizing a tortoise-approach and level of energy when it’s very “not me.” We started getting not-bills from our health insurance this weekend, with lots of numbers. We are most interested in how the bills will look. In the early 1980s, we couldn’t make heads nor tails of Dorothy’s hospital bills (heart problems) and ended up hiring a medical bill auditor to help. Similarly, some of Ernie’s hospital bills (55 days worth) might as well have been written in Urdu, for all that we could make out of them. The numbers were staggering, though since he’d been a federal employee, the share we paid out of his estate—of the DISCOUNTED figures, because he had health insurance, go figure—was miniscule. It appears to us that I’m very close to my maximum co-pay simply from the emergency room visit and the radiology. We haven’t even seen the neurosurgery, intensive care, or other hospital stay bills. Stay tuned.
We all continue to be most grateful for the connections and the time you take to stay in contact. I’m off to physical therapy this morning.
Sunday, September 28, 2008
The Rules Weren’t Working For Me
Yesterday, we seem to have hit the proper balance of activity and rest for a successful tortoise. Realizing just how low this level of activity may be for a while was disheartening. It brought with it an hour or two of wallowing, starting with my dislike for the large, bumpy leftover stuff on my head. My head! The whole idea of a brain tumor and someone having sawed open my skull is still hard to reconcile. Piling on the impositions this situation is putting on so many other people, the thumb-hand-arm-balance-strength-leg stuff, the inability to find words and short-term memory holes… I was cranky. I suggested to Michael that what he really needs to do is find a good Mean School to become less nice, as his current level of nice cannot possibly be good for him. He laughed so hard it jollied me (mostly) out of my funk and we moved along from the moment. However, having been there was a window into just how long this slog is going to be. Of course, it also illuminates how lucky we are, as these hills are not all that high in the bigger picture. So, the focus is back to working on being an effective tortoise.
The sum of my activity yesterday: finishing grading another week’s papers and walking around in the sun at the Salt Fort Art Festival for half an hour. It was pleasant and we ran into one of the really terrific ICU nurses and her family there. She was as surprised and happy as everyone at my rapid and smooth recovery (cranky later notwithstanding). This level of activity required two long naps, and reflects the sum total of my day’s exertion other than paging through the day’s newspapers. I’m back to working on seeing how far I’ve come in such a short time.
I have the impression these posts are too long, especially as we move out from the dramatic events, so I’ll finish today with the information I left off (and for which I was chastised) about the full implementation of “another later.” The full use not only involves the concept and wording, but a hand gesture, full palm out, like a “stop” sign. It’s of course possible to employ this most useful concept in graduated doses, from just thinking it (and putting off the vexing task) to articulating it to the most emphatic usage complete with the hand gesture. (hand out in front of you) “I’ll do that another later.”
I was also reminded of the full-scale escalation, brought to us by Anna Shea, in the event that “another later” turns out to be too mild for the circumstances. This entered our lives when she was about three or four years old. She wasn’t very big, but she was fully the person she has become. She and I were going around about something in her room and she said, hands on hips, “I won’t do it and you can’t make me.” Michael overheard this as he passing by in the hallway and: popping in, he asked “what did you just say to your mother?” Shea looked at him with a beatific smile on her little face and, very gently said “Oh, don’t worry. It’s OK. Her rules don’t work for me.” So if “another later” isn’t sufficient, you might consider whether the rules are working for you.
Yesterday, the rules weren’t working for me; waiting until another later to think about it in detail seems to have helped. Today, with the sun shining and the prospect of great sunshine for at least part of the day, I’m back to seeing the big picture and the long-term goal of total recovery through slow and sure progress. Even if it did take me until this morning to remember the name of the man with whom I worked for years (literally) we ran into at Jarlings on Friday night. And that could just be aging, right?
Thanks for the emails and other contacts. It’s nice to feel connected. We send you wishes for a restful and restorative Sunday.
The sum of my activity yesterday: finishing grading another week’s papers and walking around in the sun at the Salt Fort Art Festival for half an hour. It was pleasant and we ran into one of the really terrific ICU nurses and her family there. She was as surprised and happy as everyone at my rapid and smooth recovery (cranky later notwithstanding). This level of activity required two long naps, and reflects the sum total of my day’s exertion other than paging through the day’s newspapers. I’m back to working on seeing how far I’ve come in such a short time.
I have the impression these posts are too long, especially as we move out from the dramatic events, so I’ll finish today with the information I left off (and for which I was chastised) about the full implementation of “another later.” The full use not only involves the concept and wording, but a hand gesture, full palm out, like a “stop” sign. It’s of course possible to employ this most useful concept in graduated doses, from just thinking it (and putting off the vexing task) to articulating it to the most emphatic usage complete with the hand gesture. (hand out in front of you) “I’ll do that another later.”
I was also reminded of the full-scale escalation, brought to us by Anna Shea, in the event that “another later” turns out to be too mild for the circumstances. This entered our lives when she was about three or four years old. She wasn’t very big, but she was fully the person she has become. She and I were going around about something in her room and she said, hands on hips, “I won’t do it and you can’t make me.” Michael overheard this as he passing by in the hallway and: popping in, he asked “what did you just say to your mother?” Shea looked at him with a beatific smile on her little face and, very gently said “Oh, don’t worry. It’s OK. Her rules don’t work for me.” So if “another later” isn’t sufficient, you might consider whether the rules are working for you.
Yesterday, the rules weren’t working for me; waiting until another later to think about it in detail seems to have helped. Today, with the sun shining and the prospect of great sunshine for at least part of the day, I’m back to seeing the big picture and the long-term goal of total recovery through slow and sure progress. Even if it did take me until this morning to remember the name of the man with whom I worked for years (literally) we ran into at Jarlings on Friday night. And that could just be aging, right?
Thanks for the emails and other contacts. It’s nice to feel connected. We send you wishes for a restful and restorative Sunday.
Saturday, September 27, 2008
Our Hospital Notebook, in Response to Questions
The renewed course of steroids is working. The swelling on my neck and face went away almost immediately, and the headaches are controllable again. I feel like a different person. We’re turning our attention back to recovery from surgery and the whole experience: taking care of the incision and its soreness, working on the physical and cognitive after-effects of the surgery. The tortoise approach is the order of the day. My first goal is be to be able to resume teaching—probably half a class at a time, since they’re both three hours long—and then to add other things, slowly, after that. Although this whole experience continues to be disorienting, all of us are doing better with assimilating and adapting to the massive change from our lives a month ago. We are still counting our blessings, and appreciating just how lucky we have been.
Anyone who has worked with me, been on a committee I’ve staffed, or maybe just passed me on the highway knows that I use three-ring binders to organize information. I got some questions about what we put in our family hospital notebook, so here’s a summary of what we did.
For the actual hospital experience, we didn’t need an enormous binder. We started with a 1.5-inch one. Almost at random, we chose a set of 15 dividers. We didn’t use all of them during the hospital experience, though we came pretty close. Fifteeen was probably a better choice than twelve, our other choice. We continue to use the notebook even now, and as it's beginning to get full, may transfer up a size, but we didn’t need anything larger during the pre- and post-surgery hospital times. Because I’m compulsive and like pretty blue things, we used a binder that let us make our own cover and spine labels, and put a family picture on each with a nice blue background, as well as the title (Family Hospital Information; CKG Craniotomy; September 2008). It was nice to see the family picture all the time while in the hospital.
Notebook sections:
1 medical information and notes
all the notes taken in various appointments and the research we did as we were working our way though this process
2 sick leave log
a record of time spent on this adventure during the work week, starting with the CAT scan that revealed the tumor (periodically transferred to a spreadsheet as time/attention permit)
3 notes and information from others that might be helpful
information we got from people about contacts, helpful things to have on hand, things we didn’t want to forget
4 questions to ask
a running list of the questions that we wanted to ask various people; we just kept adding to it and then puled out the list when we were in interviews or appointments; we added to this all the time
5 coming appointments
we put appointments on our calendar but also hole punched and stored here every piece of paper confirming a coming appointment; we found ourselves in information overload often enough that the redundancy helped. We referred to this more often than we had expected. It was a good insurance policy
6 never used
7 random ideas and thoughts
as we moved from winding down regular life and switching full-time into medical-adventure- mode, this is where all the stray “to do” and “ooops, I forgot to…” items got noted, as well as the “here’s a task that needs to be done sometime” We didn’t get to any of these items until this week, but it’s been a nice list to have as we tentatively think about resuming some of our more normal life activities
8 craniotomy logs
counting log pages: blanks; hand-written filled out pages; the final versions we typed up periodically. We hole-punched the blank pages in advance so, as they filled, we could put them straight into this section of the notebook. We kept the current page we were working on taped to the back of the book, so it was always handy. A few of them ripped and caught on things, but as a system, it worked well enough for our purposes.
9 printed copies of nice email that came in that people brought me in the hospital
a warm-fuzzy and nice reminder that all of you were out there; not essential, but oh-so-nice
10 info on people
for Kearney, Shea and Michael; I printed and annotated screen shots of my email mailboxes so they would have a context for people whose names/institutions/connections to me they might not easily recall
11 notes and ideas for blogging
not used much; as we went through things, we knew what we wanted to say at pretty much every juncture
12 thank you logs
a place to keep track of the unbelievably nice things so many people did for us so we could make sure we got thank-yous out as we became able to do so
13 copy of my calendar
especially helpful in the beginning as we were winding down our real life and scheduling our medical stuff; for a short while, we used it as a redundant way to track sick leave; the calendar was most useful at the very beginning and eventually fell out of usage. At the beginning, though, very helpful.
14 medication information
All the information sheets we got on each medication
15 medical expenses
all the prescription receipts, co-pay receipts, etc.
We put an empty page protector at the very beginning of the book as a place to store items we were handed until we could get them hole-punched and filed. This wasn’t a big issue for whole sheets of paper, but we received a remarkable number of half-sheets, cards, and smaller items for which it was a terrific help. We used it every day.
For parts of the experience, we had a running TO DO list in the very front of the book that we looked at a lot and that we wanted right there when we opened it. That was especially important at the beginning of this adventure.
The hospital’s admission kit provided some printed tabs of their own: therapy instructions; medication information; physicians and providers; discharge information. We put them in the book, but didn’t use them. For us, the discharge instructions went most naturally in the medications section since that was our main use of them.
Finally, we hole-punched and stuck in the back of the book all the brochures we received on “having surgery at Carle” and “patient registration and admitting information” just so we’d have them near at hand. I don’t recall referring to them, but we had them to reference if we’d wanted to. We did all read through them.
Blogging is interesting. At an isolating time in my life, it’s kept us connected in ways we never imagined and been a lifeline in many ways. Writing every day has helped us organize a very strange experience. Your feedback and ideas have kept us thinking and meant so very much to us. We’re most grateful that you’re out there. Many have emailed about various posts, often mentioning that they have trouble leaving comments here. We’re new to this and will be looking into whether that’s because of something in the way we have set things up that we overlooked or didn’t understand as we started. Meanwhile, thank you for being out there. Have a great Saturday.
Anyone who has worked with me, been on a committee I’ve staffed, or maybe just passed me on the highway knows that I use three-ring binders to organize information. I got some questions about what we put in our family hospital notebook, so here’s a summary of what we did.
For the actual hospital experience, we didn’t need an enormous binder. We started with a 1.5-inch one. Almost at random, we chose a set of 15 dividers. We didn’t use all of them during the hospital experience, though we came pretty close. Fifteeen was probably a better choice than twelve, our other choice. We continue to use the notebook even now, and as it's beginning to get full, may transfer up a size, but we didn’t need anything larger during the pre- and post-surgery hospital times. Because I’m compulsive and like pretty blue things, we used a binder that let us make our own cover and spine labels, and put a family picture on each with a nice blue background, as well as the title (Family Hospital Information; CKG Craniotomy; September 2008). It was nice to see the family picture all the time while in the hospital.
Notebook sections:
1 medical information and notes
all the notes taken in various appointments and the research we did as we were working our way though this process
2 sick leave log
a record of time spent on this adventure during the work week, starting with the CAT scan that revealed the tumor (periodically transferred to a spreadsheet as time/attention permit)
3 notes and information from others that might be helpful
information we got from people about contacts, helpful things to have on hand, things we didn’t want to forget
4 questions to ask
a running list of the questions that we wanted to ask various people; we just kept adding to it and then puled out the list when we were in interviews or appointments; we added to this all the time
5 coming appointments
we put appointments on our calendar but also hole punched and stored here every piece of paper confirming a coming appointment; we found ourselves in information overload often enough that the redundancy helped. We referred to this more often than we had expected. It was a good insurance policy
6 never used
7 random ideas and thoughts
as we moved from winding down regular life and switching full-time into medical-adventure- mode, this is where all the stray “to do” and “ooops, I forgot to…” items got noted, as well as the “here’s a task that needs to be done sometime” We didn’t get to any of these items until this week, but it’s been a nice list to have as we tentatively think about resuming some of our more normal life activities
8 craniotomy logs
counting log pages: blanks; hand-written filled out pages; the final versions we typed up periodically. We hole-punched the blank pages in advance so, as they filled, we could put them straight into this section of the notebook. We kept the current page we were working on taped to the back of the book, so it was always handy. A few of them ripped and caught on things, but as a system, it worked well enough for our purposes.
9 printed copies of nice email that came in that people brought me in the hospital
a warm-fuzzy and nice reminder that all of you were out there; not essential, but oh-so-nice
10 info on people
for Kearney, Shea and Michael; I printed and annotated screen shots of my email mailboxes so they would have a context for people whose names/institutions/connections to me they might not easily recall
11 notes and ideas for blogging
not used much; as we went through things, we knew what we wanted to say at pretty much every juncture
12 thank you logs
a place to keep track of the unbelievably nice things so many people did for us so we could make sure we got thank-yous out as we became able to do so
13 copy of my calendar
especially helpful in the beginning as we were winding down our real life and scheduling our medical stuff; for a short while, we used it as a redundant way to track sick leave; the calendar was most useful at the very beginning and eventually fell out of usage. At the beginning, though, very helpful.
14 medication information
All the information sheets we got on each medication
15 medical expenses
all the prescription receipts, co-pay receipts, etc.
We put an empty page protector at the very beginning of the book as a place to store items we were handed until we could get them hole-punched and filed. This wasn’t a big issue for whole sheets of paper, but we received a remarkable number of half-sheets, cards, and smaller items for which it was a terrific help. We used it every day.
For parts of the experience, we had a running TO DO list in the very front of the book that we looked at a lot and that we wanted right there when we opened it. That was especially important at the beginning of this adventure.
The hospital’s admission kit provided some printed tabs of their own: therapy instructions; medication information; physicians and providers; discharge information. We put them in the book, but didn’t use them. For us, the discharge instructions went most naturally in the medications section since that was our main use of them.
Finally, we hole-punched and stuck in the back of the book all the brochures we received on “having surgery at Carle” and “patient registration and admitting information” just so we’d have them near at hand. I don’t recall referring to them, but we had them to reference if we’d wanted to. We did all read through them.
Blogging is interesting. At an isolating time in my life, it’s kept us connected in ways we never imagined and been a lifeline in many ways. Writing every day has helped us organize a very strange experience. Your feedback and ideas have kept us thinking and meant so very much to us. We’re most grateful that you’re out there. Many have emailed about various posts, often mentioning that they have trouble leaving comments here. We’re new to this and will be looking into whether that’s because of something in the way we have set things up that we overlooked or didn’t understand as we started. Meanwhile, thank you for being out there. Have a great Saturday.
Friday, September 26, 2008
Friday's Musings
The last topic we raised in our idiosyncratic, one-family’s adventure through the medical system review was our experience of waiting rooms in the clinic and hospital. This is the part where how disconnected we are from the mainstream becomes more obvious: we found the omnipresence of the loud TVs intrusive and grating at a stressful time. While we were seeking quiet and a way to comprehend what was happening to us, everywhere we went there was blaring noise. In retreat from the noise, we often ended up going around corners and sitting on the floor, of course first telling the staff where they could find us so we didn’t mess up their systems. In yet another mark of staff paying attention to what was going on around them, about half of the time, someone noticed us on the floor and offered to find us chairs—and usually people who had no relationship to the area we were visiting. In the pre-op insurance and medical clearance area, for example, it was a woman sitting across the hallway in the billing cubicles who offered to go round up chairs for us. Not her job, not her area, and she still noticed us and went out of her way for us.
Our steering clear of the TVs is clearly part of our own weirdness: we rarely watch broadcast TV and don’t have cable, so we aren’t either used to it or tuned into it. On the other hand, surely we cannot be the only people around who could use some peace and quiet when doing medical stuff? Or can we be?
We didn’t set out to be TV weirdos: it was happenstance. Let’s just say that the summer Kearney was born, the effects of pregnancy caused me to be more volatile than usual. When I got to be about five months pregnant, for example, I became absolutely convinced that Michael was going to be hit by a truck riding his bicycle to work. Honesty compels me to point out that it was about eight blocks to work for him and not on roads that trucks frequented, and that he wore a helmet and that the Walker ethic involves really careful driving/riding habits, but there you are. I was fixated and afraid. I’m almost too embarrassed (but not enough to stop) to tell you that nice man gave up riding his bicycle for the duration and walked to work to humor me. In any event, there I was with a new baby at home, watching the Olympics when she and I weren’t sleeping or sitting outside enjoying the summer—she stopped crying instantly whenever we were outside and was a little jaundiced when born, so multiple agendas were met, including my lifelong love of the sun. A cable bill arrived with a price increase to $25 per month. For TV. This seemed like way too much money for TV to me, and in fairness, to both of us, so we terminated our cable service and stopped watching, except for major events like elections and State of the Union addresses. As the girls grew up and went through school, we fully expected one or both to come home pointing out that all their friends watched [show of the moment] and why couldn’t they?… and that we’d negotiate something reasonable in terms of watching guidelines and re-establish cable or whatever was current at the time.
Except that it never happened. Not once, ever, did a girl in our house raise the question of why we didn’t watch TV or ask if we/they couldn’t watch some program that everyone else was watching. Or complain about being deprived. So, we just never got back in the habit. We own televisions and we rent movies, but we just don’t watch broadcast/cable content. So, we’re pretty out of the mainstream and certainly not used to the daytime offerings. I don’t feel like a sheltered prude, though I was now and then startled by some of the topics and language right there in my face in the MRI waiting room, especially. (The staff there let me sit in hallway chairs across from the scan room instead of in the loud waiting room. They were really nice about it, saying they try to keep their door closed to shield from the noise, which I guess raises the question about who sets the volume and why must it be so loud?)
In correspondence with an east coast friend this week with whom I shared a good deal of the 9/11 early morning experience, I was reminded that Michael and I didn’t even see the twin towers come down more than once or twice that day. Kearney was on an airplane—on her way to a study-abroad gap year in Greece—when all flights were grounded. The program had called early in the morning to tell us “something is happening, don’t send her” but she’d left on a crack-of-dawn flight to Detroit and was already airborn. That was stressful. As the day unfolded, the brother of a friend here who lives in Detroit went and scooped her out of the airport (if terrorists were attacking airplanes, an airport seemed like a particularly bad place to be), and took her to his home. Michael and I got in the car and started driving to Detroit to pick her up. It was a strange day, as all we had was the radio to tell us what was going on. The coverage was chaotic and no one really knew what was going on, right until about 5 p.m. when the whole situation seemed to come together and a coherent story unfold. J’s kind brother, when he heard about our progress, put Kearney in his car and started driving to meet us—and he drove her two hours towards us to shorten our drive (note this means he then turned around and drove another two hours back to him home), as well as having left work to go get her from the airport and take her to his home for most of the day. By the time we got back to Urbana, we were all pretty tired. We turned on the TV and for the first time that day, saw the towers come down. Seeing it once or twice was a lot, in our state, and we turned it off and never saw it again.
Just to finish the story, now that I seem to have veered off on a topic completely different than the peace or not of medical waiting rooms, Kearney’s entire experience of the day was of the kindness of people: the woman from her flight who loaned her cellphone to Kearney so she could call us once they were on the ground. The woman from the line in the airport who’d gotten a hotel room and left to go camp in it, but turned around and returned to the airport to offer to share it with Kearney until her parents could arrive. The airline employees who went out of their way to make sure that she was ok until she was picked up. J’s brother and family who picked her up and took her into their home. And since the airport had every TV turned off that day and we mostly talked (or she slept) on the way home, the horror of the situation was pretty remote to her at first. She had encountered nice people wherever she went and had no concerns about getting back on a plane and trying the whole trip over five days later. (The dump search of her bag at the airport that morning was pretty traumatic, though.)
So, I’m wandering. Hard to tell if this is what I’ve become, or medications, or recovery from brain surgery. That’s the oddest part of the current phase of this adventure: I don’t really know the answer to that question a good deal of the time. The renewed steroids have knocked down the headaches and swelling pretty completely and I feel back on a recovery track. Yesterday brought both physical therapy and strength training. Here’s an interesting development: I cannot walk backwards with any steadiness or stand in place and turn clockwise without losing my balance. My strength is very uneven. We’ll work on all of that, as well as the arm and hand. I’m cultivating patience, as the answer to this is going to be what it’s going to be and, as H says, “slow is the speed of the day.” We’re back to Dr. Donny’s wisdom: “We’ll know more next week.” Sometime, I’ll explain the overwhelming significance of that tag line for a very long period of our lives. Meantime, it is one of our family’s enduring pieces of wisdom, right next to Kearney’s “Mommy, I’ll do that another later.” Another later is a great concept, by the way, if you’ve never used it. I’ll bet a lot of the vexing things on your plate today could well be handled “another later” and you could do something personally interesting, gratifying or reinforcing today. Carpe diem.
Our steering clear of the TVs is clearly part of our own weirdness: we rarely watch broadcast TV and don’t have cable, so we aren’t either used to it or tuned into it. On the other hand, surely we cannot be the only people around who could use some peace and quiet when doing medical stuff? Or can we be?
We didn’t set out to be TV weirdos: it was happenstance. Let’s just say that the summer Kearney was born, the effects of pregnancy caused me to be more volatile than usual. When I got to be about five months pregnant, for example, I became absolutely convinced that Michael was going to be hit by a truck riding his bicycle to work. Honesty compels me to point out that it was about eight blocks to work for him and not on roads that trucks frequented, and that he wore a helmet and that the Walker ethic involves really careful driving/riding habits, but there you are. I was fixated and afraid. I’m almost too embarrassed (but not enough to stop) to tell you that nice man gave up riding his bicycle for the duration and walked to work to humor me. In any event, there I was with a new baby at home, watching the Olympics when she and I weren’t sleeping or sitting outside enjoying the summer—she stopped crying instantly whenever we were outside and was a little jaundiced when born, so multiple agendas were met, including my lifelong love of the sun. A cable bill arrived with a price increase to $25 per month. For TV. This seemed like way too much money for TV to me, and in fairness, to both of us, so we terminated our cable service and stopped watching, except for major events like elections and State of the Union addresses. As the girls grew up and went through school, we fully expected one or both to come home pointing out that all their friends watched [show of the moment] and why couldn’t they?… and that we’d negotiate something reasonable in terms of watching guidelines and re-establish cable or whatever was current at the time.
Except that it never happened. Not once, ever, did a girl in our house raise the question of why we didn’t watch TV or ask if we/they couldn’t watch some program that everyone else was watching. Or complain about being deprived. So, we just never got back in the habit. We own televisions and we rent movies, but we just don’t watch broadcast/cable content. So, we’re pretty out of the mainstream and certainly not used to the daytime offerings. I don’t feel like a sheltered prude, though I was now and then startled by some of the topics and language right there in my face in the MRI waiting room, especially. (The staff there let me sit in hallway chairs across from the scan room instead of in the loud waiting room. They were really nice about it, saying they try to keep their door closed to shield from the noise, which I guess raises the question about who sets the volume and why must it be so loud?)
In correspondence with an east coast friend this week with whom I shared a good deal of the 9/11 early morning experience, I was reminded that Michael and I didn’t even see the twin towers come down more than once or twice that day. Kearney was on an airplane—on her way to a study-abroad gap year in Greece—when all flights were grounded. The program had called early in the morning to tell us “something is happening, don’t send her” but she’d left on a crack-of-dawn flight to Detroit and was already airborn. That was stressful. As the day unfolded, the brother of a friend here who lives in Detroit went and scooped her out of the airport (if terrorists were attacking airplanes, an airport seemed like a particularly bad place to be), and took her to his home. Michael and I got in the car and started driving to Detroit to pick her up. It was a strange day, as all we had was the radio to tell us what was going on. The coverage was chaotic and no one really knew what was going on, right until about 5 p.m. when the whole situation seemed to come together and a coherent story unfold. J’s kind brother, when he heard about our progress, put Kearney in his car and started driving to meet us—and he drove her two hours towards us to shorten our drive (note this means he then turned around and drove another two hours back to him home), as well as having left work to go get her from the airport and take her to his home for most of the day. By the time we got back to Urbana, we were all pretty tired. We turned on the TV and for the first time that day, saw the towers come down. Seeing it once or twice was a lot, in our state, and we turned it off and never saw it again.
Just to finish the story, now that I seem to have veered off on a topic completely different than the peace or not of medical waiting rooms, Kearney’s entire experience of the day was of the kindness of people: the woman from her flight who loaned her cellphone to Kearney so she could call us once they were on the ground. The woman from the line in the airport who’d gotten a hotel room and left to go camp in it, but turned around and returned to the airport to offer to share it with Kearney until her parents could arrive. The airline employees who went out of their way to make sure that she was ok until she was picked up. J’s brother and family who picked her up and took her into their home. And since the airport had every TV turned off that day and we mostly talked (or she slept) on the way home, the horror of the situation was pretty remote to her at first. She had encountered nice people wherever she went and had no concerns about getting back on a plane and trying the whole trip over five days later. (The dump search of her bag at the airport that morning was pretty traumatic, though.)
So, I’m wandering. Hard to tell if this is what I’ve become, or medications, or recovery from brain surgery. That’s the oddest part of the current phase of this adventure: I don’t really know the answer to that question a good deal of the time. The renewed steroids have knocked down the headaches and swelling pretty completely and I feel back on a recovery track. Yesterday brought both physical therapy and strength training. Here’s an interesting development: I cannot walk backwards with any steadiness or stand in place and turn clockwise without losing my balance. My strength is very uneven. We’ll work on all of that, as well as the arm and hand. I’m cultivating patience, as the answer to this is going to be what it’s going to be and, as H says, “slow is the speed of the day.” We’re back to Dr. Donny’s wisdom: “We’ll know more next week.” Sometime, I’ll explain the overwhelming significance of that tag line for a very long period of our lives. Meantime, it is one of our family’s enduring pieces of wisdom, right next to Kearney’s “Mommy, I’ll do that another later.” Another later is a great concept, by the way, if you’ve never used it. I’ll bet a lot of the vexing things on your plate today could well be handled “another later” and you could do something personally interesting, gratifying or reinforcing today. Carpe diem.
Thursday, September 25, 2008
The Good Problems to Have
Someone out there should be writing the Brain Surgery Diet Book. Both Suzy Becker (author of I Had Brain Surgery, What’s Your Excuse?) and I have found this experience, among other things, to be a great way to drop 5-10 pounds. (Please note that this means I’ve been reading more!) It’s only been two weeks since the surgery but even though I eat everything in sight—and am enjoying my chocolate without restraint—I weigh less than I did when this adventure began. Since that cannot be attributed to my activity level over the two weeks following surgery, diet book authors, heads up.
It was wonderful to find that yesterday’s mood was related to my physical condition and it and the headaches both righted themselves pretty quickly after the great consultation with the neurosurgeon and the administration of the steroids. (Ok, maybe less reading going forward for a little bit longer.) My internal script has a default setting on self-critical and while as a mother, teacher, friend and supervisor, I’ve worked pretty hard not to pass that along, I’ve never much altered how it applies to me. Maybe now is the time to think some more about that, since as L points out, fearing that I was malingering or being a slug two weeks after brain surgery probably isn’t the most rational of responses—and not that helpful, either.
The comment from yesterday that both the steroids and the pain meds are unsung heroes of medicine bears attention and thanks. Also, that suffering is not ennobling. Check. Our consultation yesterday with a different surgeon (our primary was out of town and his co-surgeon occupied with other procedures) was wide-ranging and fascinating on many counts, not least of which the portion about the pain meds and what a reasonable, expected trajectory should/might be. He asked if I get a high from them (no) or if they make me drowsy (no). Given that, he said, when the pain goes away, you’ll stop taking them. Until it does, keep taking them. End of story. I can do that. The headache was knocked down pretty quickly following taking the steroids and a nap—though I’m awake at 5 a.m. again. Since today brings another strength training session and physical therapy, it will also bring nice long naps, so I have a system in place for this. Yesterday’s occupational therapy started us on a regimen we’re working on twice a day; we’ll go back twice a week. The range of motion in my shoulder/arm is already better than it was after surgery and we have a plan for continuing to improve. Yeah. I look forward to regaining full use of my arm and hand.
The surgeon’s response to the size of the tumor (awe) and commentary on how lucky I am were also nice reminders to count our blessings here for an event that’s two weeks old (surgery two weeks ago yesterday) or three weeks old (diagnosis three weeks ago yesterday), depending on where you start counting.
We had an interesting chat about the surgical technique for removing meningiomas: he asked if we knew what approach had been taken, and we supplied what we knew. The surgeon told us he’d had to “pulverize it” to remove it. This stimulated great enthusiasm from the guy we were visiting with: “Great choice. Classic!” In this technique, you suck tissue out of the center, let the tumor collapse in on itself and then go around cutting around the edges, tying off the capillaries and blood vessels. The enthusiasm for the technique was neat and we had a fun conversation all the way around.
It also set several markers for some items we’ll follow-up with our surgeon on our return scan and visit in mid-October, and generally continued our very positive feelings about the quality of care across this whole experience. To keep this from getting too long, I’ve posted separately some of the commentary Kearney and I developed (with review from Michael and Shea) about our experience.
Thanks for being out there caring. Hope your Thursdays are/have been wonderful.
It was wonderful to find that yesterday’s mood was related to my physical condition and it and the headaches both righted themselves pretty quickly after the great consultation with the neurosurgeon and the administration of the steroids. (Ok, maybe less reading going forward for a little bit longer.) My internal script has a default setting on self-critical and while as a mother, teacher, friend and supervisor, I’ve worked pretty hard not to pass that along, I’ve never much altered how it applies to me. Maybe now is the time to think some more about that, since as L points out, fearing that I was malingering or being a slug two weeks after brain surgery probably isn’t the most rational of responses—and not that helpful, either.
The comment from yesterday that both the steroids and the pain meds are unsung heroes of medicine bears attention and thanks. Also, that suffering is not ennobling. Check. Our consultation yesterday with a different surgeon (our primary was out of town and his co-surgeon occupied with other procedures) was wide-ranging and fascinating on many counts, not least of which the portion about the pain meds and what a reasonable, expected trajectory should/might be. He asked if I get a high from them (no) or if they make me drowsy (no). Given that, he said, when the pain goes away, you’ll stop taking them. Until it does, keep taking them. End of story. I can do that. The headache was knocked down pretty quickly following taking the steroids and a nap—though I’m awake at 5 a.m. again. Since today brings another strength training session and physical therapy, it will also bring nice long naps, so I have a system in place for this. Yesterday’s occupational therapy started us on a regimen we’re working on twice a day; we’ll go back twice a week. The range of motion in my shoulder/arm is already better than it was after surgery and we have a plan for continuing to improve. Yeah. I look forward to regaining full use of my arm and hand.
The surgeon’s response to the size of the tumor (awe) and commentary on how lucky I am were also nice reminders to count our blessings here for an event that’s two weeks old (surgery two weeks ago yesterday) or three weeks old (diagnosis three weeks ago yesterday), depending on where you start counting.
We had an interesting chat about the surgical technique for removing meningiomas: he asked if we knew what approach had been taken, and we supplied what we knew. The surgeon told us he’d had to “pulverize it” to remove it. This stimulated great enthusiasm from the guy we were visiting with: “Great choice. Classic!” In this technique, you suck tissue out of the center, let the tumor collapse in on itself and then go around cutting around the edges, tying off the capillaries and blood vessels. The enthusiasm for the technique was neat and we had a fun conversation all the way around.
It also set several markers for some items we’ll follow-up with our surgeon on our return scan and visit in mid-October, and generally continued our very positive feelings about the quality of care across this whole experience. To keep this from getting too long, I’ve posted separately some of the commentary Kearney and I developed (with review from Michael and Shea) about our experience.
Thanks for being out there caring. Hope your Thursdays are/have been wonderful.
A Review of Our Hospital Experience
Review of Hospital Systems through the Lens of One Family’s Experience
Here are some of the items Kearney and I noted in our review of our trip through hospital-land, in addition to yesterday’s suggestion for double-sided staff ID tags. Out of the 60 people for whom we kept records over our journey, we submitted by-name commendations for 24 of them. That’s a pretty impressive record, in and of itself. We had only one truly bad experience with a medical staff member across that whole time. It was short and we figured out what we needed to know from the next really wonderful person.
New Family Rule. We have a new family rule that no member of our family will ever be left alone in the hospital for even one minute if we can avoid it. There were several times when the family was so tired and I was sufficiently stable or getting ready to sleep that the most prudent course seemed to be for them to go home to rest. This turned out to be a mistake often enough that we stopped the practice, even though it added to the exhaustion load. This is because of the size of the system and the sheer number of individuals and interactions that occur. No matter how alert, the patient simply cannot absorb or retain all the information that passes by or really cope with events alone. We lost information or took recovery setbacks every time I was left alone.
Checking In for Surgery/Surgical Waiting Room. Carle’s system for surgical check-in that let the family stay around until I was wheeled off to the operating room was good for all of us. The staff were helpful and attuned to our needs as well as their own tasks; it was humane and well-organized. The surgical waiting room with the surgery liaison nurse is a superlative system and reduced tremendously the stress of the whole experience for those waiting. It’s well set up, well run, and the quality of the nurse performing the liaison duty on September 10 was of the very highest caliber. The calls from surgical nurse—whom we’d all met in the surgical preparation suite—every hour or so were also very helpful and appreciated. The information provided supported Michael and Kearney’s periodic posts on the progress of the surgery. Boffo.
A Superlative Shift Change Procedure. As the nurses among you commented, shift changes were ragged and the problems that occurred were most likely then. Another reason to have family there the whole while. We saw one superlative hand-off on the surgical floor, when Ruth and Linda came to the room together. Ruth introduced Linda to us, and then she read from her notes about my status, my meds, the care, the problems I was having and what she was watching. She reported in front of us and then asked us if we had any questions for Linda. Linda made eye contact with each of us and told us how long she’d be around. It didn’t take long, it was incredibly reassuring and we felt completely in the loop about all that was going on. Impressive. Plus, a human being checked in with us during what were otherwise totally dead periods.
Oddities; Further Improvements Needed; Suggestions.
Orientation Needed. Overall, the level of care was very high. At the same time, it would be hard to call any of the system patient-centered. This is a very large, complex system and it marches to its own rhythms and mandates. The difference between the nurse-centered environment of the ICU and the other-centered surgical floor was striking. All primary contacts in the ICU were with nurses. As we moved to the surgical floor, the tone changed and there wasn’t much explanation or orientation. Even a short explanation to family and patient would have helped, especially about the hierarchy of care roles. The role of the health care technicians could have been explained to benefit. They were great, adding real gentleness and humanity to the stay and they took the time to make daily human contact. Still, knowing who/what their role was would have been helpful.
Learning Style Questions. Many staff members asked about best learning style before they started to share information: “do you get information better by listening or reading?” was a common question. This was yet more evidence of extensive and reasonably effective staff training. Not all of them knew what to do with the response once they had asked, but the question was asked quite often and the effort to systematize this was clear. Kudos for effort.
Discharge Instructions. The written discharge instructions are a nice touch. Being handed a written sheet and then going over it is a great plan. (More evidence of attention to learning styles.) It’s a good start but the template needs improvement. Not having a coordinated medication plan, for example, is goony. We’re educated, comfortable with technical terminology (Kearney is a grad student doing research on cancer cells) and we were still unsure for days when we were at home that we were handling it properly. This was far more complicated for us than it should have been.
The form begins with a nice concise statement of its purpose, and lists the medical professionals responsible for the instructions. It has date and time and my clinic numbers, etc. Then come the following headings, each followed by inset information:
STOP taking these medications
CONTINUE taking these medications
CONTINUE these medications, which have CHANGED
START taking these medications
There is not a single unified plan for taking medications going forward. Once we got home, the interaction of these four sections caused us tremendous confusion and we went over and over and over them to make sure we’d gotten everything straight. For the first few days, we weren’t ever confident that we had it right. If we had this much trouble, we’re thinking some more improvement is surely possible. There isn’t some program out there for entering how often different meds need to be taken than can produce one or two sample schedules that would work and could be adapted?
Even worse is the phrasing of the instructions for one of the key medications, the steroids:
“Take 1 Tab by mouth 3 times daily. Take 4 mg tid for 3 days then 4 mg bid for 3 days then 4 mg q day for 3 days then d/c.”
We could and did look this up to puzzle it through (Latin and abbreviations) but at least in the discharge instructions, regular old people-talk would have been nice…
Marketing Call on Monday. Monday morning, after a late Saturday-afternoon discharge, we received a marketing survey call asking about hospital experiences. As this call came in well before we had any follow-up appointments scheduled and before we’d had any contact with any medical staff on any matter since leaving the hospital, it was a dissonant moment. We were still shaky on the medication schedule and were still in a period of flux and uncertainty. This call would have been better delayed a day or two.
General Staff Attitudes. As a general rule, the staff we encountered seemed fulfilled and content in their jobs. At least one health tech is being supported to get a nursing degree and a number of people talked about being given schedules that varied from the norm in order to accommodate their own life needs. We visited with a lot of staff members, and most were quite positive. The frustrations we did hear about were generally focused on making things better not complaints or gripes. That’s unusual in a large organization and worth noting.
Stars for effort. The white board with information in the hospital rooms with the names of the people on duty, orders (regular diet, use the breathing exercise device every hour), room phone number, etc. is a great idea. When I arrived on the surgical floor, the first and second shift (nurses and health techs) both kept it updated and it was most useful. After that, it was used only sporadically. It would have been nice to see that kept up the whole time.
Wednesday, September 24, 2008
Small Setback: More Steroids
After struggling with renewed severe headaches (especially bothersome at night) after they’d been receding pretty steadily, we got in touch with the surgeon’s office today. They ordered another CT scan and we then had a consultation with one of the other neurosurgeons as our surgeon and his co-surgeon were both unavailable. The surgeon with whom we met was very thorough, looking through all the scans and case notes and questioning us pretty closely on a variety of issues. At the end of the visit, Tina’s back on steroids for another week. We also discussed the possibility of hormonal effects from a change in pressure on the hypothalamus now that the tumor is out.
Today’s scan held lots of good news: her brain is re-occupying the tumor-void impressively well, there’s little visible edema, no blood and little air in the cavity. He was most impressed with the size of the tumor and emphasized just how lucky we are that Tina’s recovery has been as smooth as it has been, given the original size of this thing.
Today’s scan held lots of good news: her brain is re-occupying the tumor-void impressively well, there’s little visible edema, no blood and little air in the cavity. He was most impressed with the size of the tumor and emphasized just how lucky we are that Tina’s recovery has been as smooth as it has been, given the original size of this thing.
Beginning Part Three?
Moving from the direct aftermath of the surgery to the longer-term recovery process is real progress and I’m deeply ambivalent about it. This week marks the third of the talks I’d been booked to give that have been canceled or postponed due to this medical adventure. In my old life, I would have been flying out this afternoon for that event. It seems completely reasonable to believe that, after time for recovery and rehabilitation, I’ll be able to resume that part of my life. But for the moment, I’m both watching the old life go by and knowing that I’ve left people I like and respect in the lurch either trying to fill a conference speaking slot on pretty short notice or rescheduling a program they’d been planning for some time in advance.
At the same time, I’m spending more time alone/stepped out of the world and inactive than I can ever recall. Probably, that’s what led to my over-doing it Monday, because it just felt so good participating in regular life activities like going to the gym and teaching a class. However, let’s get real and keep this in perspective: I’m incredibly lucky. I had a brain tumor, it’s completely gone, it was benign, I’m still my old self with only a limited range of impairments (most of which we can expect to go away over time) and I even still have a head full of hair. The recovery is going unbelievably well. We’ve had an outpouring of love and support and reconnected with people we love. This is even happening in nice weather, so I’m able to enjoy being outdoors in the sunshine. (It reminds me of having summer babies when any time either girl got restive we could just go outside. The simple act of walking through the front door almost magically cured all crying. Plus, having summer babies meant being able to go to the swimming pool during the day, which felt decadent and deeply pleasurable. ) Brain surgery is no small deal and the ease with which I’ve gotten this far is cause for serious celebration and thanks. I feel all of that.
Even more, I’m determined to use this experience to temper (if I can!) my rhythms and arrive at a better balance of on/off, driven/relaxed than where I’d been before all of this. I can do that. I think. I hope. The first challenge is better awareness and better pacing. Here’s life giving me an opportunity to overcome (ok, that may be a little strong; how about tone down) my impatience. Let’s go. Monday’s costs lasted longer than I would have hoped, and it was a pretty good lesson. We’ll see if I’m as good a learner as I think I am, or should be. Please note that I did not try to attend my Tuesday class. [Huge thanks here to A, who’s taken it over and is providing the students with a great experience.]
To reinforce all of this, I had a visit with friend K yesterday, who came by with lunch from Siam Terrace. Yum. After she left, I sat in the sun (and ate the piece of lovely dark chocolate she’d brought) and browsed the knitting book she also brought. For you knitters out there, it’s the second Mason-Dixon knitting book, and does it ever have some fun stuff. It will be a while before I can do anything complex, but the child’s fern sweater is calling to me. One of the Mason-Dixons is a former lawyer and there’s a lovely essay about how knitting is a great use of a law degree. I like their attitude. Kearney frequents a yarn site called Ravelry, which turns out to have a Meningioma Mommas sub-group among its members. Some of those knitters report not being able to knit lace or follow charts after their surgery. That doesn’t worry me, since I’ve never knit lace to begin with. We’ll see about charts, if I pursue the fern sweater farther into my recovery.
On other fronts, as the steroids taper down, I’m waiting to see if the cravings I’ve had for ice water and salt also recede. I’ve always been a big drinker of water but never with ice until all this started. Since the first night in the hospital, there’s barely been enough ice water for me, and since I’ve been home, hardly enough salt. Michael and I went low-salt decades ago when we helped Dorothy, my step-mother, re-tool her cooking and diet in the aftermath of her heart problems. We’ve been low-salt eaters ever since, which makes it all the more odd that I’ve probably eaten more salt on my food in the last two weeks than in the last two years combined. We start occupational therapy today and physical therapy tomorrow. We’re waiting for my scalp to become less “boggy” (fluid to dissipate) as it re-attaches to the bone. My, we’ve learned a lot!
Tomorrow, thoughts from our hospital journey. Meanwhile, here’s the simplest of the suggestions we sent the hospital/clinic folks: staff badges should be double-sided, with the same information and picture on front and back. A remarkable proportion of the time, the ID badges staff members wear are flipped over, so all that shows is the blank back side. If they just printed the same info on both sides, that wouldn’t ever happen.
Take a moment today to turn your face to the sun. I send you my caring and my thanks.
At the same time, I’m spending more time alone/stepped out of the world and inactive than I can ever recall. Probably, that’s what led to my over-doing it Monday, because it just felt so good participating in regular life activities like going to the gym and teaching a class. However, let’s get real and keep this in perspective: I’m incredibly lucky. I had a brain tumor, it’s completely gone, it was benign, I’m still my old self with only a limited range of impairments (most of which we can expect to go away over time) and I even still have a head full of hair. The recovery is going unbelievably well. We’ve had an outpouring of love and support and reconnected with people we love. This is even happening in nice weather, so I’m able to enjoy being outdoors in the sunshine. (It reminds me of having summer babies when any time either girl got restive we could just go outside. The simple act of walking through the front door almost magically cured all crying. Plus, having summer babies meant being able to go to the swimming pool during the day, which felt decadent and deeply pleasurable. ) Brain surgery is no small deal and the ease with which I’ve gotten this far is cause for serious celebration and thanks. I feel all of that.
Even more, I’m determined to use this experience to temper (if I can!) my rhythms and arrive at a better balance of on/off, driven/relaxed than where I’d been before all of this. I can do that. I think. I hope. The first challenge is better awareness and better pacing. Here’s life giving me an opportunity to overcome (ok, that may be a little strong; how about tone down) my impatience. Let’s go. Monday’s costs lasted longer than I would have hoped, and it was a pretty good lesson. We’ll see if I’m as good a learner as I think I am, or should be. Please note that I did not try to attend my Tuesday class. [Huge thanks here to A, who’s taken it over and is providing the students with a great experience.]
To reinforce all of this, I had a visit with friend K yesterday, who came by with lunch from Siam Terrace. Yum. After she left, I sat in the sun (and ate the piece of lovely dark chocolate she’d brought) and browsed the knitting book she also brought. For you knitters out there, it’s the second Mason-Dixon knitting book, and does it ever have some fun stuff. It will be a while before I can do anything complex, but the child’s fern sweater is calling to me. One of the Mason-Dixons is a former lawyer and there’s a lovely essay about how knitting is a great use of a law degree. I like their attitude. Kearney frequents a yarn site called Ravelry, which turns out to have a Meningioma Mommas sub-group among its members. Some of those knitters report not being able to knit lace or follow charts after their surgery. That doesn’t worry me, since I’ve never knit lace to begin with. We’ll see about charts, if I pursue the fern sweater farther into my recovery.
On other fronts, as the steroids taper down, I’m waiting to see if the cravings I’ve had for ice water and salt also recede. I’ve always been a big drinker of water but never with ice until all this started. Since the first night in the hospital, there’s barely been enough ice water for me, and since I’ve been home, hardly enough salt. Michael and I went low-salt decades ago when we helped Dorothy, my step-mother, re-tool her cooking and diet in the aftermath of her heart problems. We’ve been low-salt eaters ever since, which makes it all the more odd that I’ve probably eaten more salt on my food in the last two weeks than in the last two years combined. We start occupational therapy today and physical therapy tomorrow. We’re waiting for my scalp to become less “boggy” (fluid to dissipate) as it re-attaches to the bone. My, we’ve learned a lot!
Tomorrow, thoughts from our hospital journey. Meanwhile, here’s the simplest of the suggestions we sent the hospital/clinic folks: staff badges should be double-sided, with the same information and picture on front and back. A remarkable proportion of the time, the ID badges staff members wear are flipped over, so all that shows is the blank back side. If they just printed the same info on both sides, that wouldn’t ever happen.
Take a moment today to turn your face to the sun. I send you my caring and my thanks.
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