Happy New Year!

A strange life can be a satisfying and good one.

First, and most importantly, Michael recovered well from his September setback, thankfully, and now seems as good as new. I hope we don’t revisit that ground any time soon, if ever.

The semester just completed was the fullest expression yet of the wonders of neuroplasticity, and their limits. The drop-off in entries here is the clearest expression of the firmness with which I hit the boundaries of the possible. Between Michael’s health, the biggest student load I’ve ever managed, working through a complete (though not-yet-ready-for-prime-time) draft of the next book, and grappling with the horrible project problems, there simply wasn’t any energy left to write in a way that could constructively handle the limits on what could be said about students and the problems that involve others. The thoughts were always there, and often the inclination to write, but there was just not enough of anything else to get it here. I missed you and appreciated more than you can know the expressions of caring and concern from those who checked in from time to time to see if all was ok.

In taking stock and contemplating our list of “wanna do”s for the coming year, I was struck again at how much my limits constrain Michael even when he’s healthy. In our daily lives, we compensate well enough that my quirks aren’t particularly noticeable to others and we can overlook them, too. Of course, that they’re not obtrusive in our new normal doesn’t make them go away. He professes not to mind, though of course he notices--how could you not? Like me, Michael values how much closer together the near miss and other aspects of this brain-remodeling adventure have brought us. We cherish each other and our life, whatever shape and turns it takes. Still (and how many times have I written this by now?) reveling in the goodness doesn’t subtract the losses. Balancing all of this is complicated.

I guess what I’m saying is that we all grieve in different ways. This was brought home sharply when recently we spent time with another couple facing serious, hard decisions about major neurosurgery that had to be made quickly.Talking with them, seeing the similarities and contrasts with our own choices and reactions, and then following that successful surgery and its aftermath revealed my own reconciliation process not to be as complete as I’d thought. It also highlighted how uncomfortable people are with grieving. Even my understanding and caring family who constantly participate in the compensatory mechanisms we’ve all evolved, naturally, unselfconsciously and givingly, seem compelled to try to buck me up and stress how great my life is when I reflect on the losses, and to assert firmly that Michael doesn’t mind the limits when I mention that cost. It’s just not that simple, and we had a bit of a wrangle today when I was trying to express my feelings about the complexity and reality of it all.

Thinking about it more carefully, trying to understand how and why things went off the rails (a relative term for us, since it’s all pretty loving and compatible), I’m thinking our relentless, deeply-rooted pragmatism has created this effect. Of course, maybe it’s just tiresome and I need to shut up and get on with it. Maybe I’m stuck in some phase of grieving that everyone else has completed and I should should heed the signal and think more about what that means and how to address it? Hard to say. Any way you look at it, the new normal has a broader range than we dared to hope would be possible as we entered this adventure. For now, that’s good enough. For later, more thought seems required.

One thing that’s terrific about this new, strange life, is how streamlined it is. I’m working on achieving that more often and enjoying it more. On a trip I took this autumn, from one nice-climate place to another, I skipped taking any sort of coat, though I usually travel with something I can put on when airplanes get cold and “just in case” at the destination. There was a freedom to having one fewer thing to worry about on the journey, even while accepting that I wouldn’t be totally prepared for any eventuality that might arise. It was an object lesson in letting go of some of the ideas, stuff, obligations, and rules that govern my life and moving towards a lighter, leaner approach that tries to do fewer things and enjoys each a bit more. At this stage, I can surely deal with whatever comes along, in the moment. I still have the extra trail mix in the bottom of my backpack, though. It’s a work in progress.

Here’s to 2012.

[started 12-30, finished and posted 1-1]

Aftershocks

As I was finishing Sunday’s post wrapping up how things stand three years later, Michael realized that the stomach upset he’d had since the middle of the night warranted medical consultation. After the earthquake of his summer emergency surgery, until then, his recovery had been going well. He was gaining weight and strength and things were looking good. Long story short: two more days in the hospital to treat an infection upstream from the surgical site.

Dr. Thoughtful to the rescue again: he came to see us at the hospital, and brought the latest evidence-based medicine findings on the most effective treatment and options for Michael’s situation. With that information, we were able to navigate past the “standard” (non-evidence based) protocols that might have called for more invasive diagnostics and treatment and stick with watchful waiting and more antibiotics, IV and then oral. So far so good on that front.

Watchful waiting continues and we now hope that the aftershocks subside further.

Who Gets a Brain Tumor, Anyway?

My three year cranioversary was yesterday, and I’ve been thinking about it on and off. The lingering sensation is never really shaking the weirdness of it. Others seem to find it equally fascinating; it turns out a lot of people have a secret fear they might harbor a brain tumor. The compound question I get asked, over and over, is “what were the signals, and how did you know?’ I never did, of course, and didn’t really believe it, then or now. The strangeness of it all is pervasive and enduring. Oddly, until this year’s anniversary of 9/11, I’d never before really noticed the contiguity of the dates. How clueless is that?

Three years after that whirlwind week before and including surgery, I’m a different person. With Michael’s help, I’ve crafted a life that looks similar in many ways to the old one. This is a good life, and I’m happy to have it. Sustained by Michael (and so, so pleased by how he is recovering and regaining his old self), buoyed that our children still have a mother, nourished by the friends and community that rallied round then and surround me now, relieved that I can still work, thankful for the richness and pleasures of a life that fits pretty well. It’s also true that I’m profoundly compromised and diminished, even if it doesn’t show much on the surface. The lessons that have carried us through all of this still apply: if I accept the limits good-naturedly and am open and comfortable with them, those around me will also be.

Friday, the large class I teach met in a different location than usual, and had a platform with open steps to get to the podium. There are two sessions as there’s not a room big enough in the teaching building of the college it’s in to seat the whole group at one time. At the end of the first session, I leaned on someone getting down the steps. At the end of the second session, there were two TAs standing by the steps to help, having observed my difficulties the first time, brushing off my thanks--just there. The moment encapsulates so much of my daily life. Those who surround me are supportive and caring and they make it all possible. I count my blessings even while that phantom self itches away like crazy in the background.

It works. That’s not to say it’s always easy. If I’d had the energy during August, I would have explored here why life has to be so hard. A particularly vivid moment sticks in my memory from the time I was probably 10 or 11--certainly it was before my mother died. Two of my brothers had matching MGBs and one beautiful sunny day, with the roof down, getting in to go for a ride with one of them, I was struck by a song playing on the radio. I’d never listened to the lyrics before and was hit, in that moment, that becoming a grown-up would include perceiving and understanding things about which I’d been oblivious. That future beckoned as fascinating and holding the promise of insight and knowledge.

I was an insecure and uncomfortable pre-adolescent, and the prospect of being a grown-up in the future looked so, so much easier than all the confusion and self-doubt of figuring out who I was and how I fit in the world. Of course, things only got worse in the years after my mother died, for quite some time, actually. That glimpse of the future seemed so promising, when I’d know myself, those horrible questions would go away, and I'd and meet the world head on with confidence. I held onto the comfort of that moment, and came back to it, through many hard days. Well, here I am, and I have all that grown-up comfort in my own skin. That part is much, much better. Hard-won, and better.

Still, where is the easy part, I wonder, when the questions go away?

August was a terrible, terrible month, starting with the fear and stress of Michael’s hospital sojourn (awful) and ending with flying back into a horrible mess at work. The nice thing that the clarity of the self-knowledge does bring--much as I’d imagined and hoped for on that golden day--is how much is truly known and set. I, and we, got through that hard time knowing our coping skills and our foundation are strong. Even in the midst of uncertainty, pain and fear, we’re resilient and have problem-solving skills. We’re better at setting boundaries. Going forward, the limits of sense and reality will apply to the problems at work: I’m not doing a year as full of stress as last year was again, and if that means giving things up that are otherwise worth having, so be it.

Still, I do wonder why it has to be so hard? We have a lot of security and comfort in our lives. Why struggle? There’s an answer and it’s all tied up with all the things that are hard, I think, and it boils down to the reality that the price of caring is risk and the price of love is loss. If you care about people and ideas and contributions, it carries a price. All that puritan stuff about ‘if it’s worth doing, it’s worth doing right,’ and that ‘the good things aren’t easy.’ All that jazz? Yeah, I buy it and I live it.

In any event, I’m alive. I function. I am content. I know happiness. I’m more patient, less driven than before. OK, not a lot, but more is more, however slight it might be. I’m managing to exercise almost every day: thank you, West Coast for the rowing encouragement. I am inching toward an equilibrium in life, even as my energy is limited, my visual and aural stacks overflow, I can’t read fiction most of the time, my head clicks, my balance is suspect at times, and going down stairs is problematic. I aspire to slow haredom. I’m making progress. More is more, however slight.

It’s not deep, but three years on, the fundamental truth of this all continues to be that what matters most are the people. Take time to hug someone close. Reach out to the far-flung. Remember something wonderful about someone who is gone. Eat chocolate. Sit in the sun.

Cultural Experiences, Category: Medical

There I was, thundering along with progress on the emerging book manuscript--thanks to wonderful comments from K, B and J, and Michael started saying he didn’t feel very good. Tuesday morning, though, when he said he didn’t feel well enough to play boules, I was alarmed. In jest, I asked if he needed to go to the doctor. (He never thinks he does, even when he’s just cut the end of a finger off. True story.) When he said “yes,” and started asking our neighbor about emergency rooms, I went straight into action mode. Once we got to the emergency room, I parked the car and he went in. By the time I got back there (WELL under five minutes), he was nowhere to be seen and they told me to wait. Three hours later, my most polite French and persistence got me back to see him. What a difference from a US emergency room!

First of all, it was dead silent. And I mean silent. Second, there were gurneys lined up perpendicular to a long wall, about twenty of them, each holding a person. The gurneys were so close together their occupants could have touched each other, had they been so inclined. No curtains, no privacy, no talking. Many people, all in various stages of undress and distress. Bags and shoes usually shoved underneath the sheets partially covering them. A man three spots down from Michael got put on a bedpan (totally uncovered) in the midst of the queue of people. Every now and again, orderlies would come, call out someone’s name and take that person away; another orderly would slide a different person-on-gurney into the parking spot. I was the only family member present.

By the time I managed to inveigle myself back there, Michael was back in the queue and had had an ultrasound. He was parked pending results. Eventually, they told us they’d called a specialist and took him to another exam room. I waited in the hallway outside. Family members are not a part of this system, at all. We waited (him on his gurney, me trying to stay out of the way), parked in a hallway. Later, we figured out that the CT scan was ordered about 11:50 a.m. and the technicians were going to lunch at noon, so without really knowing or understanding what was going on, we waited to be taken to the scan until about 1:35. Then, back to the gurney parking lot (in an annex in an open room this time, as all the hallways spots were filled) until the ER doc and surgeon came and said that immediate surgery was indicated. A number of the nearby gurneys were interested in the conversation and one told us that our guy is a very good surgeon. They took Michael then and there for prep and surgery. Someone eventually told me where I could wait. Three and a half hours later, my questions got me the information that the surgery was over and he’d be in recovery for a while, and then be delivered to the hospital room. I was taken to the room to wait. (The wrong place first, then someone took pity on me and told me no one was ever permitted to wait where I was, and found a more correct place for me.)

By the time Michael arrived, he was awake and relatively cheerful. No information about the surgery at all; by asking (over and over, actually), a nurse finally took a look and told me that the surgery had been done laparoscopically, and no large incision had been necessary. It was the next morning before we saw the surgeon and learned the full story: the appendix had burst and infection set in. Five days in the hospital (at least) for IV antibiotics.

The hospital experience is as different from the US as was the emergency room. Like the ER, there’s very little technology in the room. Michael’s quite nice single room has an adjustable electric hospital bed, a desk, a table, a TV, a padded wheelchair and a bathroom. He came complete with an IV pole. No computer. No monitors. No id bracelet. (No HIPAA here!) Also, no air conditioning. The hallways seem to have some cooling going on, but the rooms all have open windows with operating louvers, so we can adjust them as the sun moves around. It’s warm at night in here, and sometimes during the day, too. Michael has not been asked his name or birthdate since the ER. Like the best restaurants, there is a rigid hierarchy of uniforms indicating status and role: doctors in all white, nurses white with maroon (color of blood??) edging, food and linens staff in green, cleaning staff in yellow. All the staff come to the hospital in their street clothes and change here.

Aside from the quiet and almost no technology, the biggest difference between our hospital experiences at home and here is that they seem to believe in the healing power of quiet and sleep. There have been nights with only one interruption, though the night after the surgery had two or three (seems sensible to me). Help is available promptly if requested, but other than that, it’s just us in the quiet room, and the heat. I could use a bit more coolth, even if it was just delivered by a fan. (Those are considered unhealthy and unhygienic, as far as I can tell.)

The surgeon’s office is on our floor, and his secretary has been invaluable in sorting out all the logistics and bureaucracy. Most of the staff here are intrigued by “les Americanes” and have been obliging, the cleaning staff especially. They brought a rollaway bed so I could stay in the room; family are permitted here, but only to be seen and not heard. In the beginning if I asked a question, the nurses were offended and the doctor visibly taken aback. Mostly, they humored me by answering. The surgeon speaks better English than I speak French, so we communicate in a mixture of languages, and he’s set the tone for the others by being accessible, open to both of our questions and willing to explain, even though it seems to be the case that asking questions makes us quite an aberration.

Michael hasn’t had anything but liquids yet, so it’s hard to tell about the food. Thanks to my pals on the food and linen staff, I got a leftover dinner last night that had been earmarked for a patient on a restricted diet who had left. It was revolting. On the other hand, the breakfast appears to be free to all who are here, and I get one every day: hot chocolate, a hard roll and great butter. The cafeteria lasagna I had for lunch today was ok, not great. I get a “family” dinner tonight, so we’ll see what that brings.

This is hard. It’s stressful, Michael still has tubes coming out of him, the language is a stretch, the bureaucracy is complex (that’s a three-page story all of its own), we don’t really understand the system and we’re wrestling with changing airplane tickets in high season. The help and support we’re getting from, well, everyone, is sustaining. I don’t know where we’d be without it. Now, it’s time to rest some more. Thanks for all who’ve been helping and sending love and caring across the miles.

Wrestling with My Phantom Self

Remember me? I’m still out here, still working on pretty much all the same issues: balancing energy and aspirations, feeling lucky, trying to finish the process of re-integrating my life after all the changes. During the press at the end of the semester, posting here was sacrificed to getting through, and the busy period had an energizer-bunny-type persistence. By the time it was finally time to stop and rest, extra sleep and time for total sloth took over--and then the merry-go-round started again. In summer! As always, I am acutely aware that I’m very lucky, even to have the challenges I do and that they the good problems to have.

With that as context, the sensation of oddness persists, and I finally found a way that aptly covers it: have you ever read an account about or by those who have lost limbs who still experience sensations from the phantom limbs? That’s how I feel about my missing self. I still have the same impulses, ideas, reactions as always: I know what it feels like to be me. Even with that sense, though, the energy and, often, the full cognitive capacity to “be” that person are gone. My phantom self is always present, often itchy, and I haven’t found a way to integrate it all the way into my new reality.

Some examples:

• This summer, I’ve been practicing reading fiction, and have made modest progress reading young adult and other non-taxing stuff. The price is that breaks every ten or fifteen minutes are required, for reasons I don’t fully understand.
• My interest in doing puzzles turned back on, and I’ve made progress in the difficulty of puzzles I can complete.
• I still lose my balance after about five hours of being out in the world, and it still seems connected to visual/aural overload.
• While writing is much, much, much (much) s l o w e r than ever, my greatest fear, that maybe I’ve lost the ability to do long-form writing, seems misplaced. The process is completely different than it was before, and the jury is still out on whether the quality is worthwhile, but it seems to be possible to produce words in a coherent stream. That’s been a relief. Interestingly, my dreams are completely different when I’m writing than when I’m not. This turns on and off almost daily, and corresponds directly to whether I’ve been writing or thinking about it seriously on any given day. Six weeks into trying to move the book forward, it’s a totally bizarre experience.

Before you leap to offer reassurances that I seem just the same to you, please, don’t. I know that my imitations of my former self are great and that the changes are outwardly imperceptible. I know how much it is your caring impulse to tell me so. That has been the universal response when I’ve tried to articulate this sense of a phantom self. Notwithstanding how it all looks on the outside, it doesn’t live the same way. We’ve adapted our lives thoroughly enough that it all works, more or less seamlessly, most of the time. It FEELS totally different, though, all the time. Up close, Michael’s life is different. My life is different. My not reading irrevocably alters the texture and rhythms of our life. My energy and balance limits mean that we make explicit calculations just about every day, and often have to re-adjust on the fly several times a day.

Here’s another example that’s small in the describing and big as experienced: we don’t listen to much music any more. Music has been a part of our lives; it brought us together and has always been a shared joy. With the overload problems, though, most of the time, I need silence in order to be able to work, talk and stay upright. Changes like that shape our reality. Still, that same reality encompasses more: I’m alive, functioning, my brain works and I can work. I count these blessings every day, even while scratching at the ever-itchy phantom self.

On the brighter side, one benefit of summertime is the luxury of unstructured time that is leaving space to work on more deeply embedding the exercise habit. The first task was the determination to do it, and the second, more challenging, is to switch from a mindset of “have to do this now, again, today” to making it a habit. There’s progress on that front, but despite rowing 30 to 60 minutes pretty much every day (and at least five days a week no matter what), my weight has not changed by one single ounce. Not. One. Ounce. That is frustrating, and please do not tell me that muscle weighs more than fat. Whatever. With that much exercise, it really feels that it should be making more difference than it is. Since there seems to be a widespread consensus that exercise is better than sloth, I’m just doing it and will stick with it for a while. Surely it should make some difference, some time???

Cheers to all and thank you for the notes, caring and checking-in during this silence. I think of communicating every day and have started many a post. Maybe forward progress will include finding a balance of short and long posts. Connecting with you all enriches and brings meaning. Thank you.

Teetering

A passing thought is sticking: if President Obama can manage, with his schedule, to exercise six days a week, then surely I can, too. I mean, really: nothing I’m doing approaches the work on his desk, so there has to be a way to do it. I’ve been trying and, mostly, succeeding. To pull it off, though, some other things have had to drop down the list, including writing here, even when there’s something to say and people are writing to ask where I’ve been.

My in-box regimen is also sticking, so far; I don’t want to get too complacent about that, because it has an alarming way of ballooning up in short bursts, but I’m striving to stay on top of it because it’s less stressful and it feels good to have it more under control. All the items still requiring some action or response fit on one screen on both my desktop and laptop--with some blank space to spare. That’s satisfying.

Reorganizing priorities to be less stressed is also a work in progress, and the results there are not quite as satisfying, though they show some promise. Before anything else for the blood pressure issues, I’m determined to try behavior modification, and it’s pretty clear what has to change, and that would be me. The exercise is part of that, but not all. As I said, a work in progress.

Once I dug up my article that had been cited on topics I couldn’t remember, I felt better on one front and less good on another. The cognitive holes that are so clear to me (all the time) are at least not so massive that I’d completely lost track of completed work. It took a while to work through it, but of the five places stuff of mine is cited, four are wrong, either a misreading, or (most of the time) citing as my work what was actually QUOTING someone else--with a full citation. The first instance, the one that was so alarming, is a total misreading of what my sentence actually says. Now, of course, I need to craft a letter to the authors, finding some nice way to point all this out. Is it too cynical of me to expect that the response may well be “the grad students were careless”? Probably. We’ll see. It’s all too bad because the article with the errors has some great ideas in it and isn’t trustworthy. If I want to pursue any of those ideas, it will be necessary to dig up all the underlying articles and see how many of them are similarly carelessly presented so it will be possible to parse through the ideas and facts--and errors. Plus, the authors are at reputable places. The whole writing to them task makes me tired, yet I’ve added it to the to do list, in category “another later.”

Overall, the goal is better balance, both physical and mental. One of the very first indicators of this whole medical adventure was when my balance started being poor enough that I was falling down all the time. Though all the personal training we did helped then and surely helps now (along with that other small matter of not having a big tumor still in my head), losing my balance is still the major indicator of having gone past my limits. I’m still restive about this, though getting better at accepting that the limits are real and, apparently, enduring. Doing all that I want to do isn’t going to be in the cards, so what I get to adjust about this is my attitude. Learning to like falling down is tough, so my focus right now is learning to like living a life where I don’t get into overload and thereby avoid falling down. There’s a lot to like about that life, if I can just hit the mark where I manage it without so much teetering. Stay tuned.

In just the past few days, the trees have gone green. The magnolias are in bloom. I lovelovelove spring in Urbana. The greening up generally and more particularly out out my bedroom window, makes me happy. Let’s hope it also makes me calm and resolute about managing my time and workload better and brings down my stress levels. Cheers to all.

Still Plugging Away

My in-box is down to 50 messages, proving once again that the slow hare can win the race, if persistent. My goal is to keep it all on one page of my screen, and it fits on my desktop machine, if not my laptop yet.

I’ve just had the odd experience of reading something quoting me that I don’t remember thinking, saying or writing. There’s more to write here, and it will have to wait, as I am off to unearth what I wrote and compare it to the citation. It will be interesting to see if the holes in my memory are actually this big, or if someone misinterpreted the article. Or something. More later.