Disability seen from within
My friend M.N., eighty-seven years old and also a physician with sixty-two years of professional experience under his belt, underwent surgery of a right acoustic neuroma in 1977. Subjected to the seemingly inescapable fate of physicians who undergo surgery, he suffered not only a loss of hearing and right vestibular deafferentation resulting in serious balance-related problems, but also a complete paralysis of the right facial nerve, which partly regressed in the following months, a mild loss of sensation on the right side of his face and an unpleasant change in taste. In fact, his first sips of Champagne, offered by a charitable friend, tasted of bile. And since like all of us he is without a “taste bank” and therefore lacks historical reference, he still does not know whether the taste he ascribes to the wine he drinks today is the same as it once was. After suffering from significant disorientation for several months, his balance-related problems improved, which allowed him to get about autonomously over longer stretches, and even to climb or descend stairs or drive his car.
I met up with him several days ago, and he had the following to say:
“Over the past two years, my reflexes have begun to deteriorate. You may be interested to know that the phenomenon appeared--or at least accelerated--about thirty years after the lesion, more or less at the interval of onset of the so-called post-polio syndrome, which is undeniably associated with a peripheral disintegration. Most noticeably, there have been clear problems in my control of linear acceleration, particularly in the forward direction, for example while walking. The problems worsen with the increasing length of the tract covered, almost as if an accumulation of control errors is at play. A similar problem occurs when I sit down: I don’t actually sit down, but instead I fall into a seated position. Over the past year, I’ve fallen over four times, always in the context of an overly rapid rotation toward the right. The lighting of the environment has been a significant factor, as has the presence of load, which increases my mass.
“One morning early in May 2009, as I was getting out of bed to go to the bathroom, my right knee unexpectedly gave way, and suddenly I found that I was lying on the floor. Of course, it was very difficult for me to get back into bed, with the sole--and miraculous--help being provided by my wife. There was a residual loss of strength in the right lower limb, and there was ”something” in the upper limb, particularly the hand. For example, I was unable to play a 4/5 trill on the piano - I can no longer play Beethoven’s Opus 111 (!) - and the sensation was one of a marked reduction in strength, for example when holding a bottle of wine, an act that’s important in its own way. There are no pyramidal tract signs, nor any synkinesia. Muscle cramps are common, even in the left hand. Currently, there are no apparent sensitivity disturbances, even though objects easily slip through my fingers and I have some difficulties with tactile discrimination. For example, I’m unable to immediately find objects, such as my keys, which I have in my pocket together with my handkerchief. Something similar happens with my visual discrimination: I have difficulty immediately finding a black remote control on a dark, flat surface.
“A series of significant disturbances is associated with the fact that the operation on the neuroma was carried out on a Friday. It is well known that Friday is the worst day to have an operation, particularly if you’re a physician. By the time Monday came around, I had two liters of urine in my bladder: The catheter had become blocked while I was sleeping, and nobody had the time to take care of it. That was followed by thirteen months of cystitis, an ongoing alternation of germs unknown to me in parts of my body, the taste of dozens of antibiotics, and severe pain, above all. Not to mention ischuria, reduced amounts of voiding but increased frequency, most often with urgency. I had memorized the location of many of the public urinals in Milan (which would still be seen for several years to come) due to my pressing need to make use of them. I discovered (so many things I had been unaware of) that there are many ways in which voiding is stimulated, other than the classical variants of the sound of running water, bare feet on cold ground or drinking half a glass of water. For example, the urge immediately appears in front of the door to one’s apartment building or in the elevator going up to one’s apartment. Above all, and sadly enough, it appears when for reasons of decency it is impossible to let loose.
“Let me tell you about my daily routine. Given your profession, I think it will interest you.
“I awaken after a good night’s sleep, except for the fact that I need to get up every couple of hours to empty my small bladder. By now I can move reasonably well in bed, so that I don’t have too much trouble putting my feet on the floor. Then, however, I’m faced with the challenge of standing up. I’ve discovered that beds, sofas, armchairs and even chairs are too low for a person of average height, and I’m about five-feet-eleven. Rather than simply lean on something, I have to grab hold of something solid in front and somewhat above my center of gravity. The main risks I encounter are when I hang onto something mobile such as a door or a drawer that can open or close. Once I’m on my feet, I’m faced with the problem of staying there. That’s when what I call the quadriceps dance begins. My right knee is slightly flexed, and I can voluntarily straighten it. In truth, together with our bioengineering friends, we have shown that the soleus is the first muscle to go into action in such a case. It’s rather interesting, don’t you think? The extension of the knee produces a forward tilting of the upper body, which is voluntarily corrected; the knee flexes again, and so on.
“Then, sooner or later I have to move. There follows a series of unpleasant sensations: the difficulty of wrenching my right foot from the floor; my right leg a dead weight, feeling like it’s wrapped in a spider web, the anxiety of falling; and the search for a firm handhold. Particularly difficult are rotations toward the right. I’ve learned to use my right heel as a pivot--a move that would perhaps be beyond Kobe Bryant. And then there’s the back pain--a muscle pain that’s particularly strong when I’m first upright--and there’s muscle and perhaps joint pain in my right hip, which tends to diminish with my first steps. Of course, I needn’t mention the irregular neuralgia, for example in the minor and major suboccipitals nerves, which can last for several hours or even several days, nor the very intense but fortunately very short, sudden stabbing pains in my left ankle, the lateral surface of my left thigh, in my right knee and on the right side of my chest.
“Then comes the moment of truth: facing my image in the mirror. The white hair in disarray, the absence of wrinkles on the right side of my forehead, the twisted mouth, deprived of its excellent dentures and showing a single, residual tooth--a lower right premolar. Nothing short of the genius of Leonardo da Vinci could turn the ugliness of a toothless old man into beauty.
“I shave. Since my first time, I have performed this task over twenty-five thousand times, and I always thought I did a pretty good job of it. Unfortunately, the fear of falling forces me to lean against the wall or the washbasin with my left hand. I’ve had to kiss goodbye to shaving against the grain. For bathing, I manage with the help of a bath lift, which works reasonably well.
“Then there’s dressing: Particularly difficult is the task of slipping on my socks and shoes, more so the right than the left. The height of the chair is fundamental. And there’s the task of buttoning my left cuff.
“I have always advised going for walks as the best method of rehabilitation. My current autonomy (my marching perimeter, as the French would have it) is 100 to 150 meters with my walking stick on my right and the firm grip, on my left, of my incomparable wife, to whom I’m in debt for every moment of . . . paranormality. My stride is small, at around fifty centimeters, and my pace is down to little more than one kilometer per hour. Worst of all, once the hundred meters have been completed I’m overcome by a progressive and unstoppable tendency to accelerate, with an increase in the speed of my steps, almost as if the errors of acceleration control linked to the vestibular defect have accumulated. As a result, upon arrival I occasionally have to offload myself against the front door of my apartment building.
“As far as diet is concerned, this is another of the barely avoidable problems of aging. For twenty years I’ve suffered from esophageal reflux--which has been kept under good control with Mepral--and a moderate hiatal hernia. Consequently, my appetite is diminished and I’ve developed a certain distaste for meat. Sweets, on the other hand, are well tolerated. The facial paresis still gives me problems with oral continence and creates difficulties in forming bilabials. (The others pretend to understand me anyway, or perhaps they really do understand me. That’s the power of tracking, and of affection!) Of course, there are hearing problems: I’m completely deaf on the right side, and there’s a progressive, senile reduction in high-pitch sounds on the left. Here, too, there have been improvements with a hearing aid that’s nearly invisible. However, I realize there’s a certain charm to the bone ear trumpets our forefathers used.
“On the cognitive level, as those who speak well put it, there has been a noticeable decrease in my attention span. I start wanting to do something else after about ten pages of a Swedish murder mystery or after two or three pages of neurophysiology from my beloved Bernstein. My Chessmaster score has slowly fallen from 2500 to about 1000. And of course, there are the gaps in my short-term memory, whereas my long-term memory is relatively intact (if I concentrate, I can recite poems uselessly learned over 60 years ago). With regard to recall, it takes me a while to remember what film I watched on TV the night before, but also my recognition has suffered, even for music. Once upon a time I was proud of my ability to immediately recognize a piece of classical music, whereas now I may be able to repeat it or even anticipate it but may find I’m unable to say what it is. My handwriting, which was already appalling, has become tiny and completely illegible. I bow down in gratitude to the inventors of the computer.
“In conclusion, I’ve learned that the various disabilities associated with the signs left by the disease or with the more or less normal process of aging, instead of adding up tended to multiply. All the objects I have in my hands, particularly letters, newspapers and remote controls, inevitably end up on the floor, and picking them up is a truly burdensome study in style. If ever I get that Isaac Newton into my clutches . . . !
“As far as handicap is concerned, I’ve had the chance to verify the accuracy of what I’d been saying for several years. In social life, a characteristic of advanced age is the “dual centrifuge”: The old man sees his friends progressively moving away from him. One after the other, his friends fall from the rotating disc: in the columns of obituaries published in the newsletter of the Order of Physicians, there are almost none who were born before I was. But at the same time, he himself is spun outward with respect to the old centers of interest until, in the end, he too falls.
“And, in the meantime, an emptiness is created around you.”
My friend then moved away, with his small steps and his walking stick, muttering to himself. Fade out, to the notes of des pas sur la neige . . . .