I am waiting to go home. My son Gavin and I are sitting in my hospital room at Marin General Hospital for a wheelchair to wheel us down to the car after five days here for what appears to have been a mild stroke (some 795,00 people a year suffer a stroke, according to the Mayo clinic). But suddenly, I am woozy and dizzy and when Gavin sees me slumped in my chair, my eyes rolled back, he yells for help. He tells me much later that they called Code Blue, but all I remember is dozens of nurses and docs huddled around me and asking if I’m all right (which I’m clearly not) and then wheeling me downstairs rapidly for my second CT-scan. They want to check for blood on the brain, but find none. Still, my near-breakout is clearly over. I’m transferred downstairs to a unit that’s one step below ICU, to be watched carefully. Next morning first thing, I’m wheeled down for another hateful MRI (they had pushed to do it Thursday, but I refused). I endure the fierce machine-gun rattling of the MRI and the results show that my original stroke has ‘extended,’ meaning that now the affected area of my left pons is larger, with the result that I have now lost function on my right side: I can’t move my right arm or hand, and my right leg is floppy and no longer under my control. Where just a day earlier I was walking freely around the ward, now I can barely move with a walker. I’m here for another week at least.
This all started a week before. I had done my usual routine on both Saturday the 10th of August and Sunday the 11th, noticing only some tiredness on Saturday and then, while watching the 49ers, that my speech, when I complained aloud about a play, sounded a bit slurred to me. I figured I’d go to the Bolinas clinic on Monday (why do these things always happen on weekends?) and be fine. Then next day I did my usual routine and cooked breakfast, but when I was typing, noticed more mistakes than usual. Hmm. And when I tried to write longhand, it was nearly impossible to control my pen. More hmm. At that point I still figured a Monday visit to the clinic would suffice, but, to be sure, I decided to call my sister Elaine in New York. I had hardly said two words when she said “Hold on; I’m calling Laura to have her come right over” (my sister-in-law lives next door). Before I knew it, Laura had arrived, heard me speak, (I thought she’d just drive me to Marin General, but my niece Amber wisely advised getting emergency help) and called 911. Within minutes, my tiny kitchen was bursting with several huge guys from the firehouse taking my blood pressure and vitals, and then three more EMT’s doing the same thing and urging me, despite the good signs I was exhibiting, to go to the emergency room. I didn’t think it was necessary, and resisted at first, but finally yielded to the consensus.
At Marin General’s emergency unit, it was the usual wait, and then a CT-scan. My son Gavin then arrived (he’d just gotten back to Berkeley from San Diego for son Nicolas’ soccer tournament and rushed over), and agreed that I should be admitted to be safe. I said ok, figuring I’d be out in a day or two, but my blood pressure kept hovering around 200 and the docs insisted they had to get it stabilized. I complained that my soaring BP was mainly ‘white coat syndrome’ but they argued that that can maybe account for a few points, but not this much. So, under protest, I stayed. Walked around the ward freely; squeezed every doc’s hand to demonstrate strength in my limbs; admired some of my nurses and the therapists for their empathy and dedication. And was relieved when, with more meds than I’ve ever taken, my BP went down to 122 and I was discharged the Thursday after I arrived. Hallelujah.
Then Code Blue and calamity. My right side was gone. Almost no function in the right leg or the right arm, with fingers mostly paralyzed, and swallowing difficult, strange. My speech was also more slurred though, thankfully, my cognitive function (such as it is) remained mostly intact so I could generally express what I wanted to say. It was the motor functions on my right side that had mainly been compromised. And I only learned later that my stroke (the extension that caused the damage) was not ischemic (caused by a blood clot as the initial one seemed to be), but rather hemorrhagic—caused by leakage of blood in the brain. The only positive thing about this is that those brain cells, as I now understand it, don’t die from lack of oxygen, but are knocked out temporarily by the accumulated blood, which has to drain out. They then have to heal from what doctors call ‘bruising’. It takes time, but they can come back.
So there I was in the hospital for another week, while the docs tried desperately to stabilize my BP. This has taken me way beyond my usual pattern of minimal use of drugs. Right now I could be a drug commercial. I’m taking high doses of losartan and metropolol (which I’m used to in low doses) and at least two more drugs for blood pressure (now pretty well controlled by the way)—hydralazine and chlorthalidone. In addition, I’m on Plavix as a blood thinner, and Lipitor for cholesterol (I’ve never had a problem with the latter, but it can apparently be an added risk factor for stroke.) I’m also taking my usual aspirin, and Miralax to keep me regular, and Melatonin at night to help me sleep, and a diuretic to reduce the edema in my feet. Whew. How long this regime will last is anybody’s guess but for now I’m accepting it for the simple reason that I will do just about anything now to avoid further damage to my brain.
After a week and some helpful physical therapy, the docs told me that I was ready for intensive rehab. We were given three choices for sites, and we chose CPMC (California Pacific Medical Center), even though its location in San Francisco might represent some access problems for my son in Berkeley. But it seemed the oldest and best, and it is. I was driven there in another ambulance on Friday, the 23rd of August, and taken up to my room, a private room with spectacular views of the city (not that any of that mattered at the time). I met Eliano, a big, muscular nurse’s assistant who became my good friend. He was one of several workers there who provided yeoman service way above and beyond the call of duty: all three of my therapists, about whom more later, and some exceptional nurses—Tina, who fixed my impacted self in the early days when I was painfully constipated; Manny, the best night nurse I encountered, and with whom I shared some medical humor; Tryva, an always helpful nurse who has to drive from her East Bay home at 4:30 in the am to get to work; Chrystyn, who always made me laugh while she took care of every need; Helen, who tended to me as if I were her own Asian father ; and Patrick, who emigrated from the Phillipines at 19, but whose English was so perfect because, he told me, everyone there knows English—it’s our second language (thank you, American imperialism.) Angels of mercy, all.
Then there are the therapists—the heart of the place. I was assigned three: Holli, my occupational therapist; Jen, my physical therapist; and John, my speech therapist. They were all first-rate, though that doesn’t really express it. More than doctors, who are usually perfunctory when they drop in briefly to see that you’re alive and breathing, these therapists give you hour-long sessions where they push you to engage muscles and patterns that you’ve never given a thought to and think will never work again. Try walking these stairs. Are you sure? Today, you’ll take a shower; yes, you can get dressed yourself afterwards. With only one arm? Yes, you can do it. But I can’t. Don’t say ‘can’t’; it discourages the brain; say ‘not yet.’ Try balancing on this riser. Are you kidding? You can do it; the muscles remember how; you just have to get the brain firing again. So today, you’re going to cook yourself lunch—don’t you often have a fried egg and avocado sandwich? Yes, but. Ok, here’s the egg; what are you going to do first? (My brother and sisters came to visit that day and saw me finishing up, incredulous that I was actually cooking my own meal!) And on and on through the most elemental re-learning: how to put on socks; how to put on a t-shirt with one hand; how to stand with a wobbly, out-of-control leg; how to swallow pills without choking because it takes seventeen different movements to swallow. Who knew? Who knew moving one’s fingers to simply grasp a spoon took so many muscles and tendons, and a trained brain controlling them all? Only someone who suddenly loses the ability that babies master. I could easily have yielded to despair: how the fuck am I going to re-learn all this? But Holli and Jen and John were there nearly every day to insist that I could and I was, a little bit each day; up to and including, towards the end, actually making an outside trip into the community and down a steep San Francisco hill to visit a café, order tea and pastry, and sit there like a real person, enjoying it. To describe each tiny victory would be tedious. But what I really want to convey is the special dedication of each of my therapists and all three collectively. It wasn’t just that they were competent, which they were. It’s that they gave more of themselves than anyone, I, had any right to expect. You can feel it. They’re not just doing a job; they’re connecting on some level that’s hard to describe but is clearly there. And at the end, one feels—I felt—a personal bond to each of them that I won’t soon forget. Little bodhisattvas they are, doing work that saves the world. And that work includes telling you—me—that it’s time to leave; you’re ready. But I’m not ready; my son’s not ready; we need a couple more days so I can get stronger and he and my daughter-in-law can get my room prepared. Nope. You’re ready now; any more time here can only feed dependency. And they were right; and we left on Friday the 6th of September as scheduled, and I have been at my son’s, cozy as can be in the sick room they set up (we’ve always called it ‘the sick room’—my mother convalesced here, as did my brother Edmond, and my wife and Gavin and now me) in their Berkeley home ever since.
I could tell you more—about the home therapists I have now, about how I can now cook my usual oatmeal for breakfast; about how we went out for dinner last night for exceptional Chinese and that I was able to button my regular pants myself which I absolutely could not do when I went to the café—but I won’t. What I will do is try to convey what this all means. For one thing, it means that I am now forced to be slow and patient for the first time in my life. It’s not just slowing down either, as when it takes me four or five minutes to get my compression socks on or my shoes, when before it was a matter of seconds. Or when I have to make five trips back and forth to the table when I’m preparing cold cereal because I have to get the dish to the table first, then get Tracy’s help to open the package of cereal, then more help to open the plastic container of cantaloupe, then slice it and carry it separately to the table, then go to the frig and get the quart of milk and carry it to the table, then get my wheat germ out of the freezer and also to the table, then realize I don’t have the sharp knife to cut the cantaloupe and the banana, or the spoon to eat with so I have to get up again to get those (I only have one lame arm to use--which in itself is a great leap forward--because the other one holds my cane), then put it all in the bowl with the four almonds I also put in, and finally, take a bite and settle in. No it’s not just that.
It’s that my sense of who I am has had to be drastically altered. I’m not the quick one who could do anything in seconds or minutes (when I was young, I took pride in being able to play Chopin’s Minute Waltz in just about a minute), the fastest learner in the west. I’m slow now, and people have to wait for me to make my slow, halting, cane-aided way across the room or down the stairs. They have to help me, and I’ve always hated asking for help for I was the one who could. But not anymore. Now I’m the one who can’t…yet. I’m the one wo has to ask my granddaughter to cut open a package of chips, or my grandson to open the damn container of sauce, and on and on. And at one time, it would’ve been humiliating. But not anymore. Now it’s the current me. Now I’m among the ‘differently abled.’ And that, perforce, evokes a different image or ‘self model,’ as Thomas Metzinger puts it.
But it’s more than that, something more fundamental still. We are all addicted to the illusion that we are independent, all under the spell of the notion that to be a real human being, we must strive, from almost the moment we take our first steps, to be self-sufficient. “I can do it myself. I don’t need any help.” And we are encouraged in this by our parents, our teachers, our western culture. ‘The measure of a man is the extent to which he can support himself with no help from anyone or anything.’ Just as the measure of a people or a nation is the degree to which they are self-sustaining and self-sufficient: “We are beholden to no one.” By contrast, to be dependent—on others, on charity, on the state—is to be diminished in both the eyes of others and of oneself. But is this alleged independence, this total self-sufficiency ever the case? Even where one attains that American ideal, the absolute freedom of the billionaire? Or is it our great and sustaining, and ultimately damaging delusion?
I am reminded of an article that appeared in my alumni magazine not long ago. It was written by one of the great athletes to come out of the college, a world-class skier, mountain climber, trek leader. Until one day he was doing some heli-skiing I think it was, and he crashed, nearly killing himself. After agonizing recovery, he ended up a paraplegic, confined to a wheelchair. He spent a couple of terrible years depressed, but then began giving talks about what was still possible, and along the way came up with a term which still haunts me: he said of people with all their functions intact, people we call ‘normal,’ the temporarily abled. In other words, those who still have the full use of their bodies and minds will have them, do have them only temporarily. Age, or sickness, or accident are sure to intervene to show them just how temporary their ‘able-ness’ really is. And even before that, every single healthy person on this planet, no matter how healthy at any given moment, is, from the beginning, utterly dependent upon the functioning of billions of creatures—in the soil, in our guts, in our cells, in the trees and plants and creatures that sustain us, and without which we could not survive for even one second. And that doesn’t even get to the countless people in our lives who make us possible. This is so for everyone, without exception.
In light of this, is it not an illusion to think otherwise? Is it not the greatest delusion to think of our normal healthy selves as self-sufficient, as beholden to no one or no thing? I have to admit this is pretty much what I have been striving for. I have lived alone for much of the past thirty years. I have pursued a writing career that has become more and more independent—to the point that I can now design my own books, which are written on my own computer with most research done on that same computer, and now even the printing done via print-on-demand publishers who can print however many or few books I need without my ever having to get out of my chair. Self-sufficient with my own imprint, in almost every way. But then along came a little thing called a stroke, and suddenly I can’t tie my own shoes. Can’t cut my fingernails, or trim my mustache. Struggle to put on my pants or socks, or climb stairs with the ease of my two-year-old grandson—suddenly dependent on “the kindness of strangers,” as Blanche Dubois puts it. And astonishingly, I have been able to see this as not some catastrophe that has ‘disabled’ me (though it has done that), but rather as something that was inevitable, and in some quirky way, just. To see that contrary to what I’ve always liked to think, I have not been exceptional so much as ‘temporarily abled.’ Living the great human delusion that somehow, I could escape the great denouement. But none of us can, and more, none of us, even from the beginning, ever has. We are all entangled in what Mahayana Buddhists call the “net of Indra”—all of us connected by invisible strands to all else—and I mean all else, from the meanest bacterium to the grandest rainforest. All jewels in the net of being we are, reflecting and reflective of all else so that whatever happens to one of us ultimately happens to us all. Always. And now, this has been demonstrated for me in the most immediate, powerful way; and strangely, I am, if not fully content, at least ready to stay open to whatever follows.
For what else could one, unable to tie his shoelaces, do? Or be? Even if it’s only temporary.
Lawrence DiStasi
