Chained to My Desk

Chained to My Desk

john connor

The tinkling laughter of tiny children filters through the windows of my bedroom.

It’s a sunny Sunday afternoon. In years past, I would be sitting in the garden watching my grandnieces play. Undoubtedly with a large jug of Pimm’s that I would have concocted for the assembled adults. We’re close enough to The All England Lawn Tennis and Croquet Club to have the same rain clouds as the Wimbledon Championships, so this is an entirely fitting cocktail.

My grandnieces do pop up for the requisite visit. It’s good to expose children to disability; they at least will now go through life accepting the abnormal as normal. I may be surrounded by a plethora of very odd equipment, but it heartens me that my out-of-kilter humor confuses them far more than my inability to gambol with them.

Usually, this exile is depressing, but this week, it’s been incredibly positive.

A confluence of illness and work has created a mighty river of chores that would have been beyond even my past able-bodied self. Sure, I stop and watch a bit of telly or play FreeCell and listen to “Pod Save America” for a break. But I’m not gallivanting outside, enjoying myself. Instead, MS chaining me to my desk has been the only way I’ve gotten through it. It’s weirdly gratifying.

When I finished my undergraduate degree 40 years ago, I felt elated that I had no more essays to do. No more deadlines. This lasted a few days, then I began to miss it. Luckily, after a brief “finding myself” hitchhike across the entirety of the Trans-Canada Highway, I returned to the United Kingdom and somehow eked out a living as a freelance journalist. I’ve had to hit deadlines of some sort (mostly self-inflicted) ever since.

I hate bureaucracy with a vengeance. My recent relapse has meant I’ve had to research a new vehicle. After much consternation, I settled on WAV (a wheelchair-accessible vehicle). It’s a van with a built-in lift with many adaptions so that I can get into it and transfer into the driving seat. My family is already referring to it as the A-Team Van. I put the deposit down this week. It sounds easy but has been as convoluted as can be. Everyone involved has been lovely, but the intricacies involved have been near endless. Ticked: done.

Also, have had to change my Access to Work grant: It’s a way the U.K. government aids the disabled to stay at, or go to, work. I can no longer use mini-cabs and have to use black London taxis — those can take me in my wheelchair. But these cost more. Despite being on the scheme for years, you basically have to start again. It’s been a month of phone calls, forms, and email torture to sort out. Ticked: done.

Every four months, I cast four months of my gang (six comedians) weekly comedy show “The Cutting Edge” at London’s Comedy Store. After 27 years, you’d have thought I’d have gotten used to it, but to be fair, it’s the sort of thing that even today’s supercomputers (and quite possibly the quantum computers of the future) can’t manage. From what I’ve read, they can’t even work out a wedding seating plan, as the variables are just too complex. Now, add in the vagaries of performers’ egos, and no computer will ever stand a chance. Ticked: done.

Phew. What a relief.

The only trouble is that I still can’t leave my desk.

I suppose I could write another novel that nobody else will ever read.

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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.

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