Two weeks before this year’s Victoria marathon I jogged to the Royal Jubilee hospital for an appointment with my neurologist. I was waiting on results from three different tests: two eye exams, and a contrast MRI. That I was jogging to this appointment made me feel like a bit of a tosser; burning up medical money and time. This was my morning run. A shake out. In the afternoon I’d planned for a longer workout. And I felt, if I was healthy enough to be able to run to this appointment, I was healthy enough to not have to be at the hospital at all. It was just a follow up for exam results. Tracking the movement of my multiple sclerosis. Early October with the leaves yellowing and letting go, spiraling unhurriedly to the ground, and getting raked into kid-piles. Sun, uncut grass, throws of center spectrum colours. I breathed deeply, and the cool clean air reminded me: I have lungs.
But sometimes I don't have legs. Sometimes I descend stairs and hold the bannister because my muscles and mind are out of sync. On these occasions I am clumsy and fear falling. Stairs feel dangerous. My legs are unreliable. The MS is kicking up and I need to move cautiously.
Some days I feel foggy and don't have depth of thought. Sometimes my hands and fingers feel thick and have lost dexterity. Try catching a tennis ball while wearing oven mitts. Try closing that mitt around the ball just as the ball reaches your hand. Feel for the ball's texture, feel for the sweet moment it thunks into the deep pocket of your hand. Watch the ball bounce away. This is my MS. Is now the time to start medication? I haven't taken any, but maybe it's time.
In a second floor room at the hospital a resident neurologist with a new hunger sat at ninety degrees to me. Ten years of my reports and results, symptoms and evidence, were piled on the desk in front of him. Have you ever been tested for Sjogren’s? he asked. Have you ever been tested for Lyme disease? He checked my reflexes (no patellar response, good everywhere else). He moved my Hallux up and down, and with my eyes closed I told him the direction, and I was correct. I walked a sobriety test line, and felt balanced and capable and very much sober.
We pulled up my June MRIs and scrolled through the images. “Here’s a lesion”, he told me, and pointed with the cursor to a nebulous whitish area at the base of the choroid plexus. “But this isn’t the shape we’d expect to see with MS. Usually lesions are oval and well defined. This might suggest demyelination, but it isn’t convincing.”
We looked through MRI images of the cervical and thoracic spine. Two spots suggestive of demyelination, but not necessarily representing it, and these were the same two spots that had been captured ten years ago. Seemed to me they were fainter. No progression, and possibly some regeneration. “There’s nothing that concerns me here,” he said. “I’m not convinced you have MS.” And then he left the patients’ room to consult with my usual neurologist.
I thought about calling my mum. Thought about calling M, or my sister. My phone was on the next chair, in airplane mode. A parallelogram of sunlight flared against the north wall. Does the possibility I don't have MS suggest I have something even more disabling? Is it possible I don't have any disease at all?
I was still seated, stony and deep, thinking about who to call and what I would say, when the resident returned with the neurologist in charge of my case. “The thing with MS...” my neurologist began, once they were both settled, and I knew right away she wasn’t going to disagree with the resident.
They sent me downstairs to the lab for more testing. Ten vials of blood. Veins that kept clotting and collapsing, refusing. Four needles in four different spots on my arms. “How are you doing,” the nurse asked, noticing the furrows of my forehead. She was massaging my forearm, pushing blood to the needle tip, coaxing it because it wasn’t running freely. A clock on the wall over her right shoulder ticked seconds; the measured public school classroom staccato of time passing too slowly. “I’m fine,” I said, grateful to have somebody asking.
Every day for the next week a new negative would come in. I’d wait until mid-morning before calling the lab. One morning I reached a nurse who hesitated before giving me the news. “You’re pregnant!” she said, then laughed. “Nah, everything looks great. You’re a healthy boy.”
I had an appointment with my neuro-ophthalmologist to go over some eye exam results. Tests that had been positive in the past were negative. He reviewed my MRIs, too, and without looking up from my file said “I don’t see any signs of disease.”
But in 2004 I couldn’t walk properly for a month. My nerve conduction speeds were half that of a normal adult’s. I had headaches and night sweats, and a migrating hypersensitivity to superficial touch (yet a hyposensitivity to heat and cold and deep pressure). My vision blurred, especially in my right eye. Five years later when the symptoms returned, four different neurologists studied my MRIs and other exam results, and all of them concluded I have MS. There was no doubt.
And now the three neurologists I saw over the past month think I probably don’t have MS, and may not have any disease. Nothing. A healthy boy.
Clearly something has been going on. How can the experts be certain of a diagnosis, and a decade later be uncertain? The measuring instruments haven’t changed. Our methods for diagnosing Multiple Sclerosis haven’t changed. Even most of the professional minds behind my original diagnosis are the same. What’s happening here?
But I don’t have any answers. Explanations. Possible reasons for why this could have looked like MS for ten years, and now it doesn’t. Maybe I didn’t ever have it. Maybe I had it and have regenerated. Maybe I only ever had stress reactions to emotions, viruses, though surely the neurologists wouldn’t offer a graver diagnosis for the troubles I’ve had. Surely they’d have started at the surface before digging.
I feel as though I have a good team around me. They're doing the best they can. When asked if I am angry about the possibility of a misdiagnosis, I realize I am not. But would I be angry if I’d taken medication for something I don’t have? What about if I had stopped running, closed myself in a box, stopped living my life? Would I then be angry? At whom could I direct this anger?
Only at myself. All that lost time. All the things I could have done and didn’t, because of fear. Because of self-pity, or some sad and misguided attempt to collect attention and pity from others. If I had stopped running, stopped travelling, stopped laughing, not only would I be regretting how I lived the past decade, but there’s a very real chance I’d still be suffering.
This isn’t to say I changed nothing. I found ways to lower my stress levels. I slept when my body wanted sleep, and created a lifestyle in which I didn’t need a morning alarm clock. I drank more green tea and maccha, more red wine. Ate more chocolate, but the good stuff, the tickle-your-cells-and-don’t-poison-them stuff. Bonnat and Friis Holm chocolates, more like the whisper of a lover than the shout of a matador. I now am more aligned with a Paleo diet than ever. Thank you Cindy and Dave, thank you Heather. More fats, too. Avocados, olive oil, coconut oil, nuts and nut butters. I eat the best quality foods I can afford. I spend a lot of money on food.
Some of what was going on is still going on. I don’t think I am fully healed, but whatever it is isn’t limiting me. I still get numb fingers and toes if I eat too much ice cream or sugar. The right side of my torso sometimes burns flinchingly hot when a cold glass is pressed against it, while the left side responds by feeling drably cold. But these symptoms could be the resultant of any number of causes. I feel healthier than I’ve felt in six years. This is what’s most important.
When I am ravaged, physically or emotionally, I look after the things I can control. Small things. The stuff right in front of me like the food I eat, or my sleep. I don't always fall asleep, but I'll lie down. I'll breathe through my nose, narrowing my attention, counting the breaths like formless sheep. I slow down, become more deliberate. I move like someone afraid of falling and breaking a bone. It doesn't sound like any way to live, but it's temporary. Just through this acute phase. The diagnosis. Heartbreak.
Soon my convalescence starts to take hold. My strength returns. I expand. Better, I breathe into this expansion, pushing outwards, becoming more than I was. Like an artful competitor in a game of Risk.
I am expanding. Since March I've felt as though things are no longer shutting down. My system isn't shutting down, my hopes aren't shutting down. This began months before the neurologists questioned their original diagnosis. My heart feels bigger. I have a 142 pound frame and a ribcage knitted tightly enough to contain Tinker Bell, so I know my heart isn't actually bigger, but it feels like it is. It feels unbounded. The apogee of what I thought was possible is still up ahead. And isn't this the key; to continue pushing as we move through life, so that our possibilities remain an arm's length in the future.