That was a poorly timed Monty Python joke of a title if you weren’t sure… RIP the spamtastic Terry Jones. And he’s not even in this picture. Oops.
I so wish I wasn’t disabled. I wish to the depth of my spasms I didn’t have Multiple Sclerosis. It hurts on so many levels, it’s relentless and it is utterly, mind-bogglingly exhausting. But do I wish life were different? Nope. I am delightedly, delightfully, deliciously, dottily married. We have two stupendous children. A lovely extended family. I am knicker-droppingly gorgeous. Obviously. If balding, ageing and sometimes smelly. What more could I want? (Crème brûlée more often possibly, if I am being picky?).
I was prompted to think this through when I saw a few of my MS friends wobbling on twitter recently. And indeed I joined them briefly but out of the blue as we hit 2020… I had missed a New Year’s Eve party – and a warm-up panto on the same day. Because of a bloody bladder infection. Oh yes I did!
What a great start to the decade that was. So the not-chiming-of-Big-Ben and the annual, fleeting opportunity of a snog with Mrs W was spent in bed. Alone. Reflecting just that bit too much on my next ten years of progressive, incurable illness.
So what positives could I find, hidden behind my mobility aids, my boxes of catheters and my overflowing box of medications? Well, this may have taken a while, but lots actually.
1. Special, amazing friends.
Don’t get me wrong. I have lost, no, WE have lost more friends than we have gained. In the ebb and flow of life’s ‘journey’, people drift away and others appear. That’s natural. But when one of you has a disability , and worse a progressive one, well they evaporate just that bit faster. And forever.
I miss being the outrageous one and drinking until the early hours. I miss holding court. I miss busy, noisy parties which are now beyond my brain capacity and energy levels. I lose track in conversations. Forget faces. Words. MS complications mean I cancel at the last-minute. Or I just can’t reach places because they are inaccessible.
Too many people, too many ‘friends-lite’ can’t be bothered with any of that. Others just can’t deal with a disabled person. Don’t know what to say. (How about nothing? Or something? Or everything? I really don’t mind.)…
But the ones that have stayed, and the ones that have turned up along the way and seen through my wheelchair, my tired mumblings or my awkward cancellations… Well they are just a wonderful group of special, indulgent human beings. I feel so blessed.
Which brings me to…
I never understood or really contemplated the world of the disabled, the poor, the homeless, minorities, the war-torn. All that was comfortably distant, and easily dealt with through some money in a fundraising jar at Christmas. Or a sponsored something at school.
I like to think I would have grown gradually into my senses and eventually been supportive of anyone going through any trauma, big or small, long or short.
But what I do know, abso-bloody-lutely, is that having my own daily, unforgiving challenges – and knowing there is no end in sight – has helped me look up from my own grim adventures, and see the world around me. It doesn’t make me any sadder. Quite the opposite. I see hope, beauty and resilience. I see courage, potential. And big, brazen balls in the face of hardship and struggles.
I am in awe of humanity – an awful lot of it at least – and hope I now dole out more empathy and love than I receive.
… which brings me in a nice, cuddly way to:
3. Support Network.
I have already singled out friends. And of course I have a whole new gang of buddies through the MS and wider disabled community. People who get it. People who strive every day to live their life in whatever way ‘normal’ looks like for them. Campaigners, carers, charity workers and volunteers who dedicate their time and energy and love to making life a better place for us and for the next generation.
Colleagues, friends, family and an online community whom I can turn to at the drop of a coffee mug or the hint of a wobble.Team-mates who can get me, a sack of potatoes, up and over a Tough Mudder Course. Or make up for my failings and snail-like qualities on the Wheelchair Rugby pitch…
A short film of the aforementioned sack of potatoes, yesterday: https://youtu.be/zZgLesbUd7A
… Trundling me slowly onto:
I’ve been diagnosed with a cruel and chronic disease I had no understanding of. Once upon a time we lost everything we own in a fire. My beloved sister passed away far too young. Our oldest son came through relatively unscathed on being walloped by a car two years ago. And other stuff…
So guess what? We don’t sweat the details. Life is for living, loving, giving, appreciating. I don’t give a monkey’s if a vase breaks, a day is rainy or Kate Winslet fails to call. Again.
Instead, everywhere I look, there are:
5. New Opportunities.
OK, so I know I look 27, but actually, as I write this, I am 51. And a quarter. Had I not been disabled, there’s no way I would have been playing a contact sport of any kind. Golf perhaps? Tennis? Squash? Bowls? Nah. Gimme Wheelchair Rugby any day.
And Tough Mudder. And jumping out of planes, sailing tall ships, seated ski-ing. Meanwhile working for an amazing, edgy charity, https://shift.ms/
And gratefully I have found:
6. Even more purpose in life.
Well, I’ve always had purpose. But rather meaningless in the scheme of things. Chasing the next drink. Rugby-playing, morphing seamlessly into rugby-watching. Chasing the next girl. Morphing seamlessly into chasing my wife. And with Mrs W and our two children that followed, I did finally start to grow up. A bit.
Wanting the best for your loved ones, especially mine, could be plenty in life for lots of us. But now I want more. I am determined to make the world a better place. And it gets me out of bed every day. If I can give people one good thought, change one opinion, inspire one more bonkers fundraising scheme, I’ll remain the happy chappie in a wheelchair. And get out of bed tomorrow.
Ummm. Not sure how I fit this one in. I’ll just leave it here on the side.
I work for a pharma company and this reminds me why I do what I do. Congratulations. This is an inspirational read.
Thanks! Keep doing what you do. If not yet a cure, there’s definitely better meds just round the corner…
I’m wobbly enough without the tequila
Hmm, yes. Have had a few ‘adventures’ on tequila. A couple of glasses and what’s left of any leg strength is just gone. Way before I can get drunk in the traditional sense…
Greetings! Very helpful advice in this particular post!
It’s the little changes that will make the biggest changes.
Thanks for sharing!
My pleasure! I enjoyed writing this one…
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