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.

Sunday’s Post

In an inadvertent demonstration of the complicated interrelationship of aging and my remodeled brain, I wrote Wednesday’s post, asked Michael to look at it, and then promptly forgot that it was hanging out there, not posted. Michael forgot too, but that’s neither aging nor brain surgery, that’s just how he is, and always has been, at least as long as I’ve known him. I’ve decided that he and I have totally different concepts of time, which is one of the ways in which our contrasts make us such good partners. Like all flip sides of strengths, it’s a fault line in our life together, too, because even though I get that one signs up for the whole package, and it’s an obvious feature of Michael, contributing to many of his wonderful qualities, it’s utterly mysterious to me. At times, it’s maddening. This wasn’t one of them, that was just a little side excursion into thinking about the paradox. The simple explanation is that whatever it is about his makeup that lets him march to his own drummer... well, it means he marches to his own drummer. Anyway, that’s all a long way of saying I wrote the thing and forgot to post it afterwards, once I got engaged in other activities Wednesday night and Thursday. By the time I got home Thursday night, all memory of it had left me.

The medical week didn’t turn out that way, as the MRIs got postponed until farther in April so we could see the neurosurgeon right after the brain scan (his request) and we put off the blood work to confirm some of the specifics of what’s being tested. The blood pressure mystery deepened, as we’ve been tracking it across the week, and it’s wildly inconsistent even in the same settings/conditions. It ranges in strange ways and with fluctuations that don’t make much sense. It’s not a particularly satisfying mystery, but there you have it: this is one where all I get to choose about it is my attitude, so I’m cultivating curiosity and openness about what it might be and what options we might have.

Spring Break slipped away, though we did a number of break-like activities and, like clockwork, got mildly sick. Both of us. This is never a good match, but with decades of experience of how our normal happy synchronicity slips out of gear when we’re both sub-par, we’ve soldiered on. Upcoming: Week 10 of a 14-week semester, so the all-out sprint to the finish is about to begin. Despite knowing better, for me, it includes too much travel. In part, this is because stuff that didn’t happen during the big travel shutdowns this winter brought has all been packed in before the end of the semester and now’s the time to pay for the lovely unexpected time bonuses the cancellations brought earlier. In part, it’s just the normal rhythm of the requests, which are always heavy in October and April. October, I understand, as it’s after the semester has started up and it seems natural to schedule activities. I’ve never really understood the crush of April requests, but at least some of it is due to places that are on quarter systems and end later than we do, so their end-of-term scrum is offset from ours. Not living in a quarter system, I don’t have the same internal clock for it, so just accept that it exists.

In classic denial of what’s coming, I’ve planned a day of glorious sloth and visiting with friends for my Break Finale. The sun is shining and the trees are budding. The blossoming Spring promises to be beautiful this year. There’s always the fear of a late freeze, but in my best family-modified version of Scarlett O’Hara, I’ll worry about that another later.

Disentangling Puzzlement (Wednesday's post)

Disentangling the effects of aging from my brain remodeling is complicated. So many of the daily vexations of my life match natural aging processes, except of course that they also came on quite suddenly after the renovation project was completed and, at least in my view, I’m too young for some of them to be kicking in with such ferocity. The natural progression of time probably explains some of my forgetfulness and the places I lose track in conversation, except for that direct correlation between the onset and the surgery. The shoulder problems are also directly tied to the night following the surgery, though the bone spurs in my knee, which are similarly painful, are just aging problems that have no connection to anything else. This week is a medical week as all the scans are being scheduled, my regular annual physical blood work, plus some bonus exams of the shoulder and, new to this venue, blood pressure problems. Of course, the latter might also be related to my ongoing struggle to achieve a better balance as recent weeks have been stressful.

Figuring out the exact source of the stress is an ongoing and complicated task, one on which I’m not making much progress. Everything that’s going on is enjoyable and worthwhile. Very little of what I’m doing is dross or busywork, except the basic work maintenance stuff oflife: filing, calendaring, keeping up with the email. Everything I’m doing now, in short, is by choice, which has always, in the past, been a low-stress situation. It’s a puzzlement. This summer, while we’re away, careful examination of each activity is called for, and my sense is that something is going to have to fall by the wayside. Whether it’s a reduced capacity problem (possible) or taking on too much (also possible), this isn’t a good way to live. I’m not making as much progress on my book as I’d like, even though I have nominally set aside a day a week for working on it, because too much other stuff creeps into that reserved time, simply due to the pressures of other time-urgent things.

This, of course, violates the time management rule always to work on the important and urgent, and then the important and un-urgent before the unimportant and urgent stuff. I’m doing pretty well, though, at jettisoning the unimportant and un-urgent. I’ve pared out all the excess listserves, correspondence, activities, etc. that don’t match my values--and more needs to go. This is going to take better focus and a vastly improved ability to say “no,” even to people and projects that would formerly have made the cut. At this level of activity, I don’t always manage to stick to my exercise plan, and that means that my progress on the weight front yo-yos, which I hate. Time to regain the slow hare mindset, which really, overall, should be a good fit for this stage of my life. Why is achieving that so hard, anyway? I want easier. Where do I apply for that?

Re-Set

There was a lingering moment last week when the idea of quitting email cold turkey was calling its siren song. During that week of travel, messages really piled up. Through several hours of concentrated effort, I got the inbox down to a more manageable size, and then, on a long conference call during which my active portion was brief, made even more progress. Feeling pretty good about the situation, I then went to my end-of the week afternoon of meetings (Thursday) and day of teaching (Friday). We had guests for dinner both nights, so the usual evening triage and cleanup didn’t happen. Faster than you can believe, the thing was overflowing again. That brought with it the moment of fantasizing about getting it to zero and then just quitting email. Forever. Actually, it was more than a fantasy and less than an actual desire, more like a a desperate belief that there has to be a better way. Does anyone out there have it? I know, I know, this is another one of the good problems to have: I maintain a lot of friendships that I truly value and I collaborate with a lot of people and I teach a lot of students. That equals a lot of mail. Plus, I generate a lot of mail, and then people answer it. Sigh.

The week of travel provided an interesting point from which to assess where things stand. The good news first: it was a lot of exertion and, with some balancing and compromises, it was all possible. The things that needed to get done got done. Now the less-good news: after airports and travel, the high ceilings of hotel ballrooms for meetings and big crowds were really costly. The full-day meeting of 200 people drove me back to my room to lie down--twice. The noise and visual overload were intense. Navigating stairs by the end of the week was a serious challenge. Worse, my short-term memory glitches increased, though within manageable limits. I felt defective and compromised a good deal of the time, but as it doesn’t show that much, it’s mostly about how I feel. The week after that was difficult, because it took most of the week to catch up on rest/energy. Having always had energy to do whatever I set my mind to, this is a difficult and complicated reality to integrate with my sense of self. There's very little to like about it, except that it's way better than all the alternatives. Today is really the first day I’m feeling rested, so I'm working on appreciating that instead of chafing against the limits.

After all, the overall situation is good. I don’t travel again until the end of the month, so that gives me time to get back into the exercise groove and resume the good habits that were mostly leading (finally!) to weight loss. Thanks to West Coast for urging me to go back to rowing--and suggesting that I watch meters instead of time (way, way better) and consider doing intervals. Intervals are wonderful and extend remarkably the quantity of exercise. How did I get so old without knowing about that??

I’m taking the rest of the weekend off and then getting back on the horse and striving anew for that elusive balance. It’s out there and I’ll catch it. Sometime. The snowdrops are (finally) blooming here, so maybe, just maybe, we’ll really get Spring. Winter has outstayed its welcome here by some weeks. We’re ready for Spring. Hope you are in a good state of mind and great weather, wherever you are.