Some time after that, in the autumn, I began to notice a
certain hitch in my left leg when I walked or stood for too long. The knee
would give out periodically, as if I had forgotten to attend to the basic task
of keeping it straight. My leg was otherwise normal, it was strong, it didn’t
hurt. I’m a doctor and so I looked at it. It looked fine. At the time my
toddler son demanded to be carried up the stairs and everywhere, and I was
riding my bike to work every day. Maybe, I thought, I was extending myself too
far. Maybe I had reached my fabled turning point. A month or so after that, I
started to have some numbness and an ache in my left arm and a feeling of
clumsiness in that hand. Probably a pinched nerve, I thought, and did what most
doctors do for medical problems, which is to take some ibuprofen. Soon after
that, while I was giving a lecture to medical students one morning, the
microphone slipped from my hand and fell to the ground. Medically speaking,
dropping things is a big deal. I realised that something was happening,
something troubling that I couldn’t ignore any more…
I ended up in a neurologist’s office the next week sitting
on an examination table in a hospital gown. Dr K came in and introduced
herself. She had been recommended by a mutual colleague as someone who was
clinically sound but also “just gets it”. This much was immediately clear; she
was warm and attentive and present. I felt self-conscious and exposed in the
gown, powerless, vulnerable, all those things I teach medical students, but at
least I was taking mental notes for my course. It is hard to be a patient, I
had told them, yet this fact is famously hidden from the daily experience of
the medical professional. When the tables are turned, you discover how unequal
the relationship is, how completely dependent you are on another individual’s
goodwill. Check…
“And we also have to consider things like MS. Or ALS,” she
said, and then she looked away for a moment before glancing back to register my
reaction, which was a welling sense of foreboding, of tumbling, of skidding
down an embankment. “OK, yes,” I said pleasantly, “I hadn’t thought about that
one.” Her office scheduled an MRI for me later in the week.
The abstraction – the intellectual understanding of disease
– is a position of relative safety. The very real concern for one’s own
existential continuity is a different situation entirely; it is real, it is
physical and, in my case, felt in the throat and chest…
The next few weeks were hard. I waited nervously for my MRI
and more than once invoked my doctor’s privilege: to skip the waiting list and
get my results right away[when my wife was ill and needed frequent MRIs or
other imaging studies, I insisted on ordering them myself so that I was the one to get the
report first], to get a copy of the studies burned on a disk before I left the
radiology suite, to text my neurologist on her personal cellphone for the final
readings…
Everything was normal. I did a fist pump as patients in the
waiting room looked on. It was the elation of the near-death experience, of
return to life!...
Dr K referred me to see Dr M, an ALS specialist at Beth
Israel hospital who would do the needle EMG, which, as it turns out, is an
uncomfortable test…
I explained my worries about ALS and told him why Dr K had
sent me and he seemed unimpressed. “You’re not that interesting,” he said to
me. His dismissiveness was reassuring, but then I imagined this was part of his
routine to put me at ease…
He was frowning at something on his computer. Then he looked
up said, “There’s nothing wrong with you. The test was completely normal.” I
smiled inadvertently and felt warm inside. Waters rushed into a parched
riverbed. Eagles soared over valleys. Are you sure, I asked? Yeah, he said,
brusquely…
You can find whatever opinion you want on the internet, and
I did. A woman on a discussion board related the story of her husband, who was
convinced something was wrong: he was feeling weaker and weaker, but his EMG
was normal. Six months later he had another EMG and their suspicions were
finally confirmed – he had ALS. Of course, the EMG, like any test, is
operator-dependent and potentially fallible. The medical literature supports
EMG sensitivities of only 60-70% for motor neurone disease. Dr M hadn’t
mentioned this possibility, that one EMG might not be enough…
And so I decided I would live with the ambiguity in a kind
of modified denial. I would not seek out more tests or opinions but rather wait
for the disease to reveal itself – or hopefully not. At least this way, there
was a chance I didn’t have ALS…
By the middle of February, I had started to get muscle
twitches, another of the cardinal features of ALS. They started in my hand. A
muscle would begin twitching for a few minutes and then stop. And then it might
start somewhere else. Sometimes two muscles would be twitching at once. They
would start without warning, tic tic tic, like someone tapping me on the
shoulder to remind me I was going to die [As a medical student I had genuine frequent
multifocal and quite noticeable fasciculations.
I am 65 now]. Then would come a
wave of fear, drawing back a curtain to reveal the mortal reality that I had
successfully hidden from myself. I hid the fasciculations from my wife, but she
figured something was wrong and I finally had to tell her. She thought I was
being ridiculous, and I had to convince her to be worried. I showed her the twitches
and then she did become worried. Then I had to convince her not to worry. I
comforted her. I joked about it. But I felt lousy and weaker as the winter wore
on…
Nothing had prepared me to confront my death. Despite having
taught medical students about it and worked with dying patients, despite having
read about it and done meditation and silent retreats, I quickly realised that
I was lost. I was inadequate to the experience. I had not done any of the kind
of spiritual work that would be required to forestall the panic and dread of
facing my mortality. I didn’t even know what that kind of work would look like.
Leaving my children without a father was the worst of it. In my dreams they
wandered through empty streets calling for me…
In the medical school, I was tasked with writing the death
and dying curriculum for first-year students. It was a cruel coincidence, as
ALS is the exemplary case typically used in medical schools to teach issues
around death and dying. My research on the topic required reading cases of
patients grappling with weighty decisions as they died slowly of the disease,
their spouses wringing their hands…
By the spring I had lost 5kg. My left arm and leg felt like
jelly most of the time and fasciculations travelled over my body throughout the
day. Sensory symptoms are not common in ALS, but can be found early in the
disease. I still wasn’t certain that I had the disease, but in my mind I was
just waiting for it to get worse before I completely gave up hope. The
inconceivable, irreducible, bewildering fact of my mortality was like some
grotesque object that looked different from every angle, a concept that
resisted incorporation into my understanding. It kept occurring to me how
surreal it is that this is how it all turns out: this the resolution to the to
the varied plot lines of my life. This is the punchline. I was not fun to be
around. My wife was supportive and she was patient, but also gently pointed out
the possibility that this whole thing could be all in my mind. Was there any
objective evidence that I had the disease? Did I have any objective weakness?
The answer was no and no…
She [Dr K] examined me and pointed out I had no muscle wasting. My
reflexes were normal and my strength was fine. She couldn’t elicit any
fasciculations and she reminded me that all my studies had been normal. The lab
tests and MRIs and EMG had shown nothing. I really don’t think you have ALS,
she said. Two neurologists have told you this now, and still you’re not
convinced. Maybe you need to change some things about your life. “Yeah I’m sure
I do,” I said, “but could it be early ALS?”
She paused. “I don’t think so,” she managed. But it was
clear that she couldn’t give me a definitive no and I was going to be miserable
until I knew for sure. We both agreed that it could be time that I see the ALS
specialist. And this is how I was referred to Dr HM at Columbia…
“You’ve been to two doctors now who told you that you don’t
have ALS. So it will be hard for me to convince you that you don’t have it, but
I will tell you that I have seen many patients with isolated fasciculations
without any muscle weakness or objective signs and none of them have developed
ALS.” He paused. “This is over many years. None of them.” I nodded. “In fact,”
he continued, “I myself have had fasciculations for 20 years. I’ve thought I
had ALS many times, but I have never developed it either,” he said grinning. This
self-disclosure was an unexpected gift. I nodded, involuntarily and
continuously and let the generosity of this great and learned man fill me up
like oxygen.
“So I don’t have ALS?” I asked. “I really don’t think so,”
he managed. I stopped nodding. And as if reading my mind, he suggested that if
I had any further doubts, that I should get one more EMG, and that if that were
normal, then I should forget about ALS.
I did get that second EMG from Dr M and it was normal. He
confirmed a diagnosis of benign fasciculation disorder, mostly because we
couldn’t think of whatever else this could be…
He shook his head and said that I should just forget about
ALS. “Erase it from your memory and from your life,” he said. His view was that
the more I dwelled on this diagnosis, the more claim it had over me and the
more I would keep manifesting symptoms…
I was initiated, as people my age often are, into an
awareness of the fragility of our being. I realise too that my adventure was a
rehearsal for something else, the reality behind the curtain of youth that
older people politely keep to themselves. Yet I have no interest in dwelling in
the shadow of death’s certainty. As the psychiatrist Irvin Yalom has written,
living in proximity to death is like looking directly at the sun. In the
absence of strong faith, it takes a special kind of spiritual evolution to face
it with equanimity. I don’t have that so I continue to live as before, with the
adolescent’s illusion of eternal life. This is not to say that nothing has
changed. I have seen that life is dear and it is on loan to us. And so
everything just feels more precious.
Courtesy of Doximity]
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