Be My Wife

Be My Wife

john connor
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.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

6 comments

  1. Mardi Niles says:

    I was not diagnosed until I was in my forties. Unfortunately I went for decades with this disease before anyone understood MS. All my medical records from early childhood (6 years old) until I was diagnosed were overflowing with symptoms all related to MS. I fell all the time, they said I was clumsy and uncoordinated. Then from the age of 6 I had terribel electric shocks hit me randomly through my head and arm. I hid in closets when this happened, afraid I was dying. Numbness, spasticity, hard to swallow, I choked when I was 8. Of course it was said that I did not chew my food properly. Constipation was a problem and my Mom tried everything. There are so many other records that point directly to MS. No one knew, I will never blame anyone. We all did the best we could. I got married at 19 and had three children by 24. Would do it all over again. Being pregnant was wonderful, I felt great.
    Well, to make this long story short, MS cost me my marriage after 26 years. During those 26 years I was unable to participate all the time in activities with my family and was in pain most of the time. Vanquish was my go to for headaches and painful body aches. I did not blame my husband for being disappointed. He believed I was just not interested in things he was. Part of that was true. I love him very much, but his happiness was gone and I could not fix it. This was before my MS diag. I left my husband because he looked and seemed so very unhappy. He is remarried to a wonderful lady that can do anything with him when he wants. That is a little, no a lot, bittersweet. If you have someone who has MS, be patient, and if you are a beautiful soul with MS, be patient. We wait forever…it is something we all do. MS or not.
    Thank you

  2. Judy Sumlin says:

    I’ve been diagnosed almost 34 years and I’m now 65 years young. My husband and I just celebrated our 45th anniversary and I can’t express the gratitude I feel each and every day. I have been blessed beyond my comprehension!

  3. Dr Mark Hughes says:

    My wife left after less than three years, although she was fully aware of my MS history and the relatively minor limitations it imposed. However, the main point of my comment is to state that it is not true to say that ‘Be My Wife’ is the onle accessible track on Bowie’s Low, What about ‘Sound And Vision’, ‘Always Crashing In The Same Car’ and ‘Breaking Glass’ to name but three? And the second side, albeit more influenced by Eno, is masterful!!

  4. Gonny says:

    Bless your wife! I have to admit that my own relationship is also very much at risk, partly because of this silly disease. Time will tell whether our relationship will survive.

Leave a Comment

Your email address will not be published. Required fields are marked *

Pin It on Pinterest

Share This