Four races this year, different enough I could be trying to discover where my talent lies. If we convert my races into a track 10 000m based on percentage away from the world record, here’s what I’ve run, in chronological order: January 8km road (25’47” / WR 21’51”): 31’01” February half marathon road (1h09’27” / WR 58’23”): 31’16” March 5km road (16’24” / WR 12’59”): 33’12” March Beer Mile track (5’18” / WR 4’56”): 28’12”
Sure the conversion isn’t robust (can we compare James Hansen to Zersenay Tadese?), but if event talent is the question, the conclusion is stark. And so I’ve accepted an invitation to compete in the Beer Mile World Classic in San Francisco in August.
But I don’t want to be a beer mile specialist.
I want to see if I can get back down into the 1h07’ range for a half-marathon, and if I feel like I’m getting close I’ll head to Portugal in September for the Porto and Lisbon half marathons, not necessarily to run fast but rather because if you’re fit and you race half marathons, who wouldn’t want to race along the Douro river early morning when the fishermen are casting their lines, before the port cellars of Gaia open for the day. Plus it’s close to Italy and there’s a month between races; not necessarily a greater seduction, but an attraction nonetheless.
In the meantime back at the MS clinic I’m being tested for peripheral neuropathies. Yet another new doctor. With the nascent uncertainty about my diagnosis we’re now looking at possibilities other than MS. This new doctor is checking my peripheral nerve conduction speeds. He attaches a sensor to the proximal part of my femur, one of the muscles, then jams a needle into its distal counterpart. He tells me to contract the muscle. To resist his pressure as he pushes against my leg. But I’m a runner and for thirty years I’ve learned to block certain pain and to be finely tuned to other pain. There’s a certain type of pain I’ve trained myself to move with rather than fight. When he tells me to contract and resist I am feeble. He pushes my leg and my leg flops back to the bed.
He concludes I have (or had, and am stable but have permanent nerve damage from) Guillain-Barré. This was the original diagnosis from 11 years ago, back when MRIs revealed only one lesion and so they couldn’t classify it as Multiple Sclerosis. After these tests, after going through my chart and reviewing my 2014 MRI, he says he’s pretty sure this is all it ever was. Guillain-Barré. He’s not ruling out MS, but he says it’s unlikely.
But what about my 2009 symptoms, I ask? And the 2009 MRIs? Those scans were worse than the 2004 ones and were used to make the diagnosis. Stress, he suggests, for my subsequent flare ups, and he didn’t compare 2014 MRIs to older ones. He didn’t look at them. He said the most recent ones were the only ones that matter here. If it is MS, these scans would show the most damage. They would tell him all he needs to know.
But what if there was an improvement? And what about my eye exams that were abnormal and now aren’t?
He clocks my disappointment. Jim, this is good news, he tells me. But to me this is non-news. I know I’m stable. I was hoping for something a little more miraculous. I wanted him to be confused and to tell me what I had has disappeared, and to not have an explanation. I’d hoped to be told I’m getting healthier, not that I’m permanently damaged but not getting worse. Plus it doesn’t clear up the question of MS. I still don’t know if I have it and am managing the symptoms, or if I had it and have somehow recovered, or never had it at all. I’m asking too much of the medical system, I realize. The answers to these questions may never arrive. Maybe the answers aren't what matter and what's important is refining our former selves. Still, I can’t help but want certainty.
And so on Wednesday morning, April Fool’s day, I arrive for an appointment with my regular neurologist. A nurse takes my blood pressure. She takes me into the hall and says she’s going to time me to walk 25m as fast as I can without losing control. My heart rate spikes. I’m going to kick this walk’s ass. She says Go! On my second step my adidas Samba’s gum rubber sole sticks to the linoleum when my heel touches; it grabs the floor and tries to stop me dead but my momentum is crashing forward. I reach for the wall to stop from falling but my hands are slick from adrenaline and they slip. In life I run more than I walk, and if I have to do anything for speed it’s never walking. The low arc of a walker’s gait, I try to explain to the nurse, from the floor. She stops her stopwatch. Let’s try again, she says.
The nurse finishes her preliminary examination and my neurologist replaces her. We run through a familiar gamut of tests. She reads the report from the doctor who said it’s likely Guillain-Barré. I biked here on tired legs. My helmet is on the adjacent chair. I have a bit of a chill from the ride and the thin layer of sweat now cooling. For five years we’ve had the same routine. I lie on the table. She pokes my feet with a toothpick and I say yes when she asks me if I can feel it. My muscles resist her pressure. I touch my nose and then her finger. Nose, then finger. I track her finger with my eyes as she moves it across my range of vision. Good, she says.
There are things Guillain-Barré can’t explain, she tells me. The abnormal eye exams. Lesions on the spine, on the brain. Not many spots, she says, but here and here, and she pulls up my MRI scans on her computer. The lesions are faint. They aren’t the bright flares one sees when MS is certain. She’s sure this isn’t only Guillain-Barré. There’s an auto-immune component, an inflammatory component. It may still be MS, but it’s mild and whatever this is, I’m managing the symptoms.
What confounds me is she doesn’t ask me how I’m managing things. I’ve seen seven neurologists and all of them agree I’m doing well. I seem to be healthy. They tell me to keep doing what I'm doing. This what they actually say: Keep doing what you're doing. Yet in 11 years not once have I been asked What are you doing? Presumably these specialists became neurologists in order to understand disorders of the nervous system. How is it possible I could have MS, and then not? What did I do between 2004 and 2015 to go from being unable to walk to racing half-marathons? Maybe I don’t have MS and so the answer isn’t germane. But the neurologists also all agree something has been going on. I’ve had symptoms. I’ve been in a wheelchair because walking was too difficult, and I have abnormal test results related to my nervous system, and it looks like I have permanent nerve damage. The neurologists all know I’m not taking any medication, and still nobody has asked what I’ve been doing to be able to not only live a healthy life, but race marathons and half-marathons and beer miles. I don’t think I’ve done anything special and I certainly haven’t been obsessive with how I’ve lived. Still. How are they not curious? How have they not been curious when all of them, for the better part of 11 years, have gone from believing I have MS to believing I don't?
At the end of our 90 minute appointment my neurologist sits down across her desk from me and closes my file. She tells me I look healthy. She tells me I sound healthy. There’s really nothing more they can do for me. My file will remain active but there’s no need to book another appointment. If anything changes I’ll see my GP and he and I can decide the next step, but for now I’m being discharged from the MS clinic.