Let me introduce you to my wife, Jane, by cheekily lifting the title “Be My Wife” from possibly the only accessible track off Bowie’s seminal ’70s album, “Low.” Through these weekly columns I’ve mentioned her often enough, but I’ve never formally introduced her. Mea culpa.
I didn’t have my first brush into the fun, fun, fun world of sclerosis till I was 48 — we’d been married for 14 years. In that time we’d had a son, concomitantly set up then run a business together, and somehow, with no time and intense stress, muddled through.
My MS was imperceptible at first. Despite feeling a bit weird, I went off to play a scheduled doubles tennis match. Jane thought it was a bad idea, considering my tingly symptoms. I scoffed and barreled on as usual. What could be wrong? I even won my serve easily — now that was unusual! Then I had to retrieve a drop shot. I got there and found myself in an uncontrolled fall. I hit the ground before I comprehended that I was no longer upright.
It caused such a severely dislocated shoulder that it would take two operations and three years to deal with. The pain was so intense that the sclerosis I was then diagnosed with (and then two years later, MS) was a secondary consideration.
No one able-bodied sets out to become disabled; though if you’re into extreme sports, I suppose there’s more of a chance. I was a minor creative living in the suburbs. I’d passed my British scuba diving course but had never gotten around to doing my two open water dives to qualify — too busy for danger!
Equally, unless you form a relationship with an already disabled person, no one sets out to be a caregiver. But it gets lumped onto you. I’ve read a lot about and met quite a few MSers whose relationships ended when they got diagnosed. It’s a lot to take on! Somewhere, there was a shift in which my wife became my caregiver. The indignities of this condition can bring me to tears. There have been times when I couldn’t move, and poo has had to be dealt with! I’m a 16-stone baby (“Boy, he’s a big one!”). It’s de rigueur to wear nappies — I’m wearing them now. Ohh, attractive!
There was a distinct change to our marriage when we started working together — it wasn’t planned, it was necessary. Jane was a successful TV casting director, and I was a house husband with his own part-time live comedy show. She was made redundant six months after having a baby.
Jane had a raft of shows she took with her, and we brought the operation in-house, literally. I’d always been a freelance something or other, so this was second nature to me. And one of the few benefits of having an economics degree was the ability to keep costs down. It was also handy that I’d previously been a theater and comedy critic, so had the relevant performer knowledge.
It was hard working and living together. It was rocky.
Maybe, though, it has helped in our current predicament. As my body fell apart, the financial crash happened — a nice allegory. We’re still working things out. I don’t know how people deal with this disease on their own; even with immense family support it overwhelms me.
Last Thursday, I managed to get downstairs on my own for the first time in weeks, and struggled to the memorial of Kim Kinnie who had introduced us. It was a gathering of the ’80s comedy clan, suitably at the London Comedy Store — it was in an earlier version of the venue where my wife and I met. Kim was the artistic director at the time. Jane went onstage and pointed out that Kim “never could see what she saw in me.”
I was really glad before the MS started that she saw something. Now, her perseverance humbles me.
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