I Was Diagnosed with Multiple Sclerosis at 27—Here’s What I Learned About Myself

The good news: there was no sign of a stroke. The bad: my brain was covered in lesions. I was newly diagnosed with MS, and facing a very different future than the one I had planned.

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Meredith WhitePhoto: May Truong

The Day I Couldn't See

After a weighty pause, my neurologist told me that this year’s MRI was “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.”

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, things were a lot less uncertain. I had extracted myself from a Ph.D. program in classics that was feeling increasingly untenable and moved from Cincinnati, where I’d been studying, back to Toronto.

I 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 all these things, a whole edifice of definitiveness, around me. No more starting thoughts with “if”: “if I pass these exams,” “if I complete my dissertation.” 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.

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Woman in MRI machinePhoto: Shutterstock

Mysterious Symptoms

I should clarify: I couldn’t see properly. The centre of my vision was sort of missing, and whenever I looked straight at something, it would dissolve. 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 30 minutes of being slightly spacey before the aura would lift and the migraine would arrive. Only the aura didn’t lift, and the migraine never arrived.

After two 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 eventually 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 a “complicated migraine,” which is to say, a migraine that didn’t 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 and lay as still as I could, a little fascinated, a little bored, a little anxious. To give myself something to think about, I recited a William Butler Yeats poem that came to mind: “I have drunk ale from the Country of the Young / And weep because I know all things now...” In it, the speaker has gained prophetic vision but is miserable because he learns 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.

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Brain scansPhoto: Shutterstock

The Truth About Multiple Sclerosis

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, vision problems and loss of sensation in limbs. The spots where demyelination happens become lesions. Multiple sclerosis is a brain covered in these little scars.

In one type of the disease, relapsing-remitting 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.

Jean-Martin Charcot, a 19th-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.

Seventeen months later, after observation and two more MRIs, I heard the physician at the MS clinic 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 now one of the estimated 100,000 Canadians with MS. After more than a year of waiting, it seemed the moment of diagnosis passed by almost without notice. “If I get diagnosed” bled seamlessly into “when I got diagnosed.”

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Multiple sclerosis ribbonPhoto: Shutterstock

Learning to Live with Multiple Sclerosis

It turns out that learning one has a chronic disease does not chart a clear path to the future; it only highlights the risks in a way that is both useful and useless. 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, from hair thinning to cardiac failure. But I cannot know with certainty what is coming next any more than I could three years ago, or yesterday.

There are still days—like when the neurologist looks at my most recent scans and reminds me once again to call the clinic if anything happens— when the ifs and whens start to blur in my head and catastrophic thinking causes me to retreat to what I do best with my troublesome brain: look up the etymologies of words. I observe that, in Greek, “diagnosis” means “distinguishing, discernment; medical diagnosis.” But it also means, in legal writing, “resolution, decision”—which sounds like a level of certainty that I suspect many people with medical diagnoses wish they could achieve.

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 gnothi seauton, “know thyself,” the maxim written at the temple where ancient Greeks visited the Oracle of Delphi to learn about the future.

If I really knew myself—physically, rather than the way that Socrates meant it—perhaps I would know what the future has in store for me. Instead, my diagnosis has had the effect of reminding me just how mysterious our bodies can be. For months, I was obsessed by the fact that there were things happening in me that I couldn’t sense even if I wanted to. The scope of my life shrunk down to this diagnosis; nothing else was relevant.

In the face of knowledge, what to do? Despite my fears a few years ago, my life has not been permanently unsettled: I have a more interesting job; I have my own apartment; the sky didn’t fall. I manage through periods of fatigue caused by the disease—a whole-body tiredness unlike anything I had experienced before—but still, I wake up every morning and take a pale blue pill that, through its own unseen magic, slows down the rate of demyelination and mostly keeps the symptoms of MS at bay. If I didn’t know, none of this care to safeguard my future would be possible.

The vision in my right eye never fully returned. With both eyes open, I don’t notice this, but if I squint or wink or cover over my left eye, I am reminded that I carry this small neurological scar and that one day I might have more. I’ve wondered, struggling through a bout of debilitating fatigue, if the fog in my brain and the weight in my limbs might never lift and if this would mean I have to give up my ambition to do, to see, to write, to accomplish anything.

I try to look straight at the future, but it dissolves, in my flawed vision, into a continuing mystery with a slight possibility, now, of bad things. A life can feel so small. But there is a contingency plan, phone numbers of the clinic to call if I need to. I take a deep breath. I remind myself that there are many things beyond myself that are worth investigating in the meantime. There are so many activities worth doing with a belief in their certainty. When I go to work. When I see my friends tonight. When I finish this essay. When, when, when.

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Originally Published in Reader's Digest Canada