No Surprise Here: Reflections and Ruminations on Living With MS
Columnist John Connor recalls his 'sanguine' reaction to news of his diagnosis
There are moments in life that have surprising effects on us.
I’ve had two.
The first was when I was about 9, and my mother informed me that my headmaster had been told I’d disappeared after school. Fair enough in hindsight. I presume she’d phoned the police as well, but was given short shrift. She kept that one to herself.
Turns out I’d gone off to play with a classmate at his home. That place, for a 9-year-old, seemed like a magical farm hidden away in our suburban environs, but it was probably just a smallholding, which is a sort of micro-farm surrounding an ordinary house, common in the U.K. But to me, it felt like Texas.
I’d lost track of time. It was perhaps just a couple of hours. Phoning home was impossible as they didn’t have a landline — it was the ‘60s. I think I fainted (or perhaps more properly swooned like the Victorian ladies seemed to do constantly in TV costume dramas of the time) at the news that my headmaster had been told I was missing. My dive was similar to present-day Premier League footballers who pretend to be seriously injured after committing an appallingly dangerous foul in a lame effort to avoid getting the inevitable red card (and being sent off).
The second surprising moment was getting married. As I looked into my nearly wife’s eyes, a moment of vertigo gripped me. It seemed for a brief few seconds that I was swirling into some sort of tunnel. Which, in a real way, I was. Maybe the tunnel of love really does exist?
By contrast, I was remarkably sanguine about my multiple sclerosis (MS) diagnosis. It had taken me months to see a neurologist to prove I had it. I’d lived with one sclerosis for three years, so I knew the signs that I’d had another. I described this farrago in one of my early columns.
Fortunately, I actually knew a neurologist. She’d saved my best friend’s life from a horrendous earlier sclerosis. And I ended up sitting next to her at his celebratory wedding breakfast.
She saw me within the space of a couple of weeks.
Among the many fellow MSers I meet online via my role as co-moderator of our MS News Today Forums (which you can peruse, nay, join, with the link here or at the very right-hand top of this page), there are many stories of delay. There are even more stories to convince a doctor that these MSers actually had MS.
Within some 20 minutes, my personal doctor worked out that I had a neurological disorder, probably a sclerosis. I saw his notes later, and he was spot on. I was immediately dispatched to the hospital for a week. After being given every test imaginable, I finally got to see a kindly neurologist — kindly, no doubt, as he was about to impart bad news. As he put it, I’d had a solo sclerosis. It’s more formally known as clinically isolated syndrome.
That was in 2006. He told me it was possible that I might only get this one. All my neurologists offer hope, though my present one doesn’t so much recently. Perhaps that’s because I frankly told him that I’d happily risk death at a 2% chance (at least it was then) to try hematopoietic stem cell transplantation. As he’d recently lost a patient this way, he was none too keen on the idea.
It was far too late for me anyway, both medically and indeed by how much MS had ravaged my brain by then. The secret is to embark on this therapy as early as possible after diagnosis. If it works, it holds you at the point you were at, with perhaps some extra recovery. In 2009, it didn’t exist — or if it did, it was still highly experimental.
My diagnosis was in 2009 — 13 years ago. MS has changed my life into what now feels like somebody else’s. It was a psychological schism. I’m now living a second life.
MS is something that can’t be conquered. It can only be endured.
My first love had been journalism. I had no idea why, and still don’t. As MS and COVID-19 have pincered my horizons to first my house, then eventually only to the ground floor, writing copy seems at least a perfect escape.
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