Diagnosed with MS at twenty-seven, I revisited the classics for a way forward
Diagnosed with MS, I revisited the classics for a way forward
In other brain-picture news, my neurologist recently told me that this year’s MRI was “[weighty pause] not too bad” whereas last year’s was “rather concerning.” “If you have another attack,” he said, “call our office immediately. In a case like yours, I’ll want to see you right away and put you on something stronger. Aubagio is an easy medication, and it’s easily tolerated, but it’s not the most powerful option.”
Then he paused and added, as a kindly afterthought, “But of course, hopefully, that doesn’t happen.”
I got the feeling he thought it would happen one day. In a case like mine, whatever that means.
Four years ago, if you had asked me about my case, I would have said I had none. I had extracted myself from a PHD program in classics that was feeling increasingly untenable; moved back to Toronto from Cincinnati, where I’d been studying; and made just enough peace with the fact that I would not be spending the rest of my life studying Greek literature that I could finally sleep at night without panicked second-guessing. I’d started a job and found an apartment with a friend from high school. I had moved out of my parents’ basement. I had all these things, a whole edifice of certainty around me. No more starting thoughts with if: “if I pass these exams,” “if I complete my dissertation,” “if I get a job, if I go on leave,” “if I decide not to go back.” I’d settled it, enough for me, at least. My life felt solid, full of statements. When I go to work. When I pay my rent. When I see my friends this Thursday. Then one day, I couldn’t see.
I should clarify: I couldn’t see properly. The centre of my vision was missing, sort of, and whenever I looked straight at something, it would dissolve, but I could see well enough around the periphery. This wasn’t new to me; it seemed like the aura I typically experience before a migraine. Usually, I’d take an Advil and resign myself to thirty minutes of being slightly spacey before the aura would lift and the migraine would arrive. Only the aura didn’t lift, and the migraine didn’t come.
After a couple of days, I was frustrated but still sanguine about this curious development. A couple more days and I was panicked, wondering what was happening. I saw my family doctor, who referred me to an ophthalmologist, who ruled out glaucoma and referred me to a neurologist. This appointment was months away; after about two weeks, my vision slowly returned to normal, and I slowly stopped worrying. By the time I saw the neurologist I was studiously blasé, wondering out loud if I should have cancelled the appointment. He wasn’t too concerned, either, and thought that it was something he termed a “complicated migraine,” which is to say: a migraine that didn’t quite work properly. “But there’s a tiny chance,” he continued, “that you’ve had a stroke, so I’ll schedule an MRI to make sure we can rule that out.”
Then he added, “Of course, if anything else happens, give my office a call.”
Nothing else happened. One night, three months later, I slid into an MRI machine, a little excited, a little bored, a little anxious. My primary fear was that I had some hidden and unknown piece of metal in me that the magnets in the machine would excite out of my body in a painful discovery. The machine switched on, nothing happened, and I exhaled. Nothing hidden, nothing mysterious. I settled in and lay as still as I could for the next forty-five minutes while the MRI clanged, whirred, and clicked. To give myself something to think about, I recited poetry in my head. In what may be the best example of dramatic irony I will experience in my life, a poem by William Butler Yeats came to mind: “I have drunk ale from the Country of the Young / And weep because I know all things now...”
Yeats’s speaker has gained prophetic vision through sharing in the drink of the Country of the Young — the land of the immortals, in Irish myth. The speaker is undone by this knowledge of what is, and what is not, to come. He seems paradoxically shrunken, his life condensed to one miserable fact: that he will never be with the woman he loves. Knowledge of what is to come, Yeats suggests, will not spare you from the necessity of experience.
Multiple sclerosis is a neurodegenerative disease where the myelin sheath, a fatty insulating layer on one’s neurons, is damaged. Think of myelin like the rubber casing on an electrical cord: it shields the wire inside from damage and thus also protects the current that the wire carries. Spots of damaged myelin can allow the electrical pulses that run through our nerves to become scrambled, resulting in loss of motor skills, tingling, tremors, loss of sensation in limbs, and vision problems. The spots where demyelination happens become lesions, or sclerae, from the Greek word for hard. Multiple sclerosis is a brain covered in these little scars.
In one type of the disease, relapsingremitting multiple sclerosis, a sufferer experiences attacks, or flare-ups, when demyelinating activity in the brain causes a sudden neurological symptom to manifest — such as, say, being unable to see properly for two weeks. When the attack subsides, the symptoms will also subside, though lesions will be left behind and the damage may not be completely reversible. Over time, a person with MS can accumulate small disabilities that build toward major ones, such as impaired mobility and limited vision. Other symptoms are more insidious but still debilitating: fatigue, memory loss, reduced cognitive ability. An estimated 100,000 Canadians have MS, making Canada a country with one of the highest occurrences of the disease in the world.
Jean-martin Charcot, a nineteenth-century French neurologist, first identified the disease in 1868, though the lesions on the brain and spinal cord caused by demyelination had been observed in the decades prior. When Charcot created his set of diagnostic criteria, lesions could only be observed through dissection, and he relied on the outward manifestations of MS for a diagnosis. But now, medical technology allows us to peer into the recesses of our bodies that have never been opened to the light. On MRIS of the brain, lesions show up as little spots of white. And as much as it is peering into the dark recesses it is also peering into the future, because it turns out that not every lesion necessarily causes a neurological symptom — they may simply foretell a likelihood.
In my case, the good and expected news was that my first MRI came back with no sign of stroke; the bad and unexpected news was that my brain was covered in demyelinated patches. “Something lit up,” as the neurologist told me. My sparkling brain. Two more MRIS followed, spaced six months apart each time to allow my brain to change — if indeed it was going to change, which it did. It kept changing; doctors remarked with carefully masked surprise on the number of lesions they found each time compared with the fact that I had experienced only one attack. Finally, seventeen months later, I heard the physician at the MS clinic I had been referred to say, with the awkwardness with which one delivers bad news, “At this point, we consider the diagnosis to have been made” while flipping through MRI images of my brain, covered in pale dots. I was one of those 100,000 Canadians now. After over a year of waiting, it seemed the moment of diagnosis passed by almost without notice. If I get diagnosed bleeding seamlessly into when I got diagnosed.
It turns out that being diagnosed with a chronic disease does not chart out a clear path to the future, it only highlights the risks in a way that is both useful and useless at once. I take medication to reduce the rate of demyelination, an act that lowers the risk of an attack while bringing its own set of attendant complications with it. (“In case of heart related death,” the patient information tells me, “stop taking the medication and see your doctor immediately.” Noted.) But I cannot know with certainty what is coming next any more than I knew three years ago, or five years ago, or yesterday.
There are still days — like, say, when Ivisit the neurologist and he looks at my most recent scans anxiously and reminds me once again to call the clinic if anything happens — when the ifs and whens start to blur in my head, when the threat of catastrophic thinking comes barrelling toward me, sirens wailing, and at these times, it seems best to retreat to what I know and do best with my troublesome brain — to wit, looking up the etymologies of words — and observe that, in Greek, “diagnosis” means “distinguishing, discernment; medical diagnosis,” but it also means, in legal writing, “resolution, decision.”
Resolution! Decision! That sounds like a level of certainty, of when-ness, that I suspect many people with medical diagnoses wish they could achieve. Will it happen again? Will the little scars in my brain make themselves obvious once more? What ought I to do? How can I decide the best course of action?
The -gnosis part of “diagnosis” comes from a Greek root, -gno, which means “to know.” If you’ve read a bit of Plato you might have come across another famous
I’ve wondered, struggling through a bout of fatigue, if the fog in my brain and the weight in my limbs might never lift, and if this meant I had to give up my ambitions.