So damned if I didn’t roll into the sanctuary at Keddem Congregation, Palo Alto, yesterday and find 50 or 60 (but who’s counting?) in the audience waiting to hear me read from my book, Dance Without Steps. And what a kick. I mean, this isn’t exactly a hostile crowd. Friends suggested I might want to keep some of the proceeds from book sales – I sold 25 – and the answer was a firm ‘no.’ After all, I am physically and temperamentally limited in what I can do for any group. You can’t be a Jew alone. You can’t be a congregation alone either. So I did my bit. And now I feel like tackling 30 people in my neighborhood, corralling them into a carport, and holding forth on any topic. Maybe reading the monthly statement from Pacific Gas & Electric. Anything. Because it feels good to communicate. And when you are a semi-quadriplegic and even opening the monthly utility bill is fraught, anything becomes worthy of communication.
Take this week. Wednesday features an appointment with the Palo Alto Medical Foundation’s dermatology department. We are close friends, the dermatologists and I. A sunny childhood near Palm Springs is now taking its toll. And so the dermatologists take theirs on a regular basis, freezing, cutting, blasting…to keep me and my skin going. Thing is, I like my dermatologist. More, I trust him. Has he ever missed a basal cell carcinoma? Perhaps. But not for long. Furthermore, he listens to me. Want to come back in six months, he asks? Nope, I tell him. Four.
So why at this advanced age, 65 years of life under the bridge, should I have any anxiety about a routine medical appointment? Every day seems miraculously snatched from the jaws of death. And maybe this perception is not wholly inaccurate. Ever so slightly melodramatic, or maybe not even that.
I guess there might be another reason. Dealing with the medical world is like walking along those stretches of the Grand Canyon, the North Rim in particular, where the guardrails end and the real views start. It’s hard to say where the edge is, for the best of people. And even if you can say, it’s hard to notice. After all, you are looking out and around…not at your feet or what is beneath them. It’s not really the edge, but getting into the edge zone, where things start to slant, pebbles become ball bearings…and you have to watch it.
By which I mean that too much is happening when I see a doctor. Most doctors, anyway. Take my physical medicine guy. My foot has been stinging. Particularly late at night, interrupting my sleep, and sending me into a dark, pessimistic realm. Age is taking its toll. Circulation beginning to fail. Blood clots, terminal ones, forming in my paralyzed foot, the one that is stinging. And now I am with Dr. X, and giving him the benefit of the doubt. Suphose, he tells me. Get some support stockings. Dependent edema is what he’s talking about. Squeeze the blood back into place. Thank you, I tell him. And could he authorize some repairs to my wheelchair? He does this. Also giving me a free sample of some stuff for my sore knee, while reassuring me about the latter.
On a regular basis, admittedly not regular enough, I exercise by walking with a crutch. Limping would be more accurate, and these days I do this with the help of someone’s arm, my balance being too unreliable. The problem is that my walking is fashioned of rather crude neuromuscular components. I hike my right paralyzed hip, twist my pelvis forward, and the resulting spasm bends my knee. Which lifts my foot off the ground…until it falls in some vague spot in front of me. Proprioception being virtually absent on my right side, it’s hard to say where my foot falls. But at least I have one, a footfall, and for this I must thank my physiotherapist.
Let’s call him Dan. His wife does. Let’s call him more often, I am thinking as I roll down the hallway from Dr. X’ examining room. Because I don’t like, and do not trust, this jive about the support stockings. I tried these years ago, decades ago, in fact. Support hose being not only hard to get on…but the real function is unclear. Right, my foot swells. But what does this mean? Aside from stinging and discomfort, what is going on?
And so life, destiny and the second exit on Highway 92 eastbound, all bring me to Dan. We have a certain history. 25 years, if my recollection is correct. My most searing recollection of physical medicine life with Dan involves the dead arm. Thing is, until about 1994, my right arm had considerable life. The bicep worked. Downright handy when schlepping in a bag of groceries, say. Which I used to do, holding a sack in the crook of one arm, grasping the crutch with the other. Then the limb mysteriously weakened, almost overnight. What was happening? Dan shook his head. You need to see a neurologist, he said, adding that he could not make a diagnosis. Thing is, I knew this guy. It was hard to understand this particular point, so I pressed him on it. He was not allowed to make a diagnosis, this was the thing. He was a physical therapist. Neurologists diagnosed.
Which over the ensuing eight months they did with abandon. The first neurologist, an ex-Walter-Reed guy, looked at my MRI picture and told me I had a syrinx. The latter being a sort of bubble in the spinal cord, something that develops over time. A dire and grim assessment, but one has to face facts. Part of which involves a second opinion, so the next neurologist said, no, forget the syrinx. Leading me to a third, who had some other assessment. Until, six or seven months into the saga, a spinal neurosurgeon at the University of California, San Francisco, pronounced the correct and long-delayed verdict. Simple nerve compression. My cervical vertebrae, shattered when a mugger shot me in the neck in 1968, were doing what broken bones often do. Growing spurs and pinching off a branching nerve.
Speaking of nerve, why didn’t Dan tell me this? Because I knew, just knew, he had a handle on the thing. He is one smart guy, Dan, and he knows nerve compression when he sees it. But there was a line, some professional line he could not cross. I could see it in his eyes. He wasn’t a neurologist. The neurologists weren’t neurologists either, it turned out. And I, it turned out, was now minus what was left of an arm and shoulder. The lesson? Caveat emptor. No, more than that. Don’t deal with the medical world alone. You are the patient. Being a patient is scary. Let someone else do the work of maintaining perspective – if there is a someone else.
Things were badly off in those Eight Months in Search of a Diagnosis. Take the MRI experience. In those days, the early 1990s, a doctor was present for this very expensive imaging. Patients get loaded into an MRI machine much like torpedoes. And I had been whirred into the tight, claustrophobic chamber, endured the magnetic hammering – only to be whirred out prematurely. Lying on my back, I looked up at a young doctor. How’s it going, he asked? Just fine, I assured him. Assuring doctors gets to be a habit with ‘good patients’ such as myself. Great, the doctor told me. Great. Any falls? Just the faintest flicker of darkness danced across his face. No, I told him. Great, great, he said. Well. Okay. Any blows…minor car accident? Absolutely not, I said to the doctor. Well, that’s fine, he said. That’s very good. Well. Well. Ummm…. Haven’t stumbled into any walls? I kept looking up at this doctor who was so badly feigning nonchalance, and tried to diagnose him. Where was it heading, this looping line of inquiry? He nodded and wandered away, but I yelled after him.
‘You do know I have a spinal cord injury, right?’
‘Oh, oh, okay,’ he said, greatly relieved.
Which brings me back to 2012, and where else? My foot. The right paralyzed one. Except that now I have brought it, along with the rest of the bodily package, to Dan. It doesn’t take long, our consultation. Naturally, Dan is not covered by my Blue Shield policy. Which, for all I know, may actually be a recommendation. In any case, he doesn’t mince words. Stuff builds up in the extremities, he tells me. That stuff includes the byproducts of nervous system activity. And the trick is to get the blood flowing, e.g., through a bit of foot rubbing and calf stroking. And to drink plenty of water. Lots of water.
Simple as that? Sure enough. Foot much improved.
Funny old thing, healthcare. In 1979, I got the news that seeing my physiatrist, the one I had seen in a San Francisco hospital for years, would involve a drive. He had relocated to San Jose, to Santa Clara Valley Medical Center. Worse, I was now required to turn up on a Thursday afternoon. Fuck it. I set off, already cursing the hour-long trip. At the other end I parked, found my way into the spinal cord injury clinic…and another world.
At that moment in the Carter Administration, my wrist was bothering me. And it was spastic enough, my neurologically afflicted lower arm, to make me think seriously about a permanent splint. And serious thinking got under way the moment I rolled in. There was a wrist specialist, of all things, a doctor. And he was accompanied by a physiotherapist, a clear veteran in cord injury. The two of them examined my wrist for approximately three nanoseconds and observed that I was spastic in both flexion and extension…which made something in me come to full attention. I would even have saluted, if I’d had the neuromuscular wherewithal. They knew what they were doing, these guys. And I returned to San Jose, drive or not, on a regular basis for the next year.
Which, it turned out, was all there was of the Thursday afternoon spinal cord clinic. Someone better versed in government medical policy than I could doubtless explain this. But in those days, Santa Clara Valley had been designated a regional center for my affliction…a critical mass of medical knowledge that has never been available to me since. And it must have been the same for everyone. I do recall there was a muscular dystrophy clinic, maybe just a few hours, part of one morning or something, and maybe not every week. What a relief to have a whole bunch of people looking at me with a high degree of insight, pooling their expertise. And in my case, focusing on what was a declining population. With each advancing year, seatbelts, then airbags, were putting spinal cord rehabilitation centers out of business. The clinical forces needed to pull back into a small fortress. And in 1979, at least, there was one. Not now. Good thing we let market forces decide these things. Too bad no one ever asked me.