My short-term memory may be shot to pieces by Multiple Sclerosis and hardly helped by chronic fatigue. Yay, I can blame everything on MS! But my long-term one is crystal clear. I can vividly remember the first time I mentioned the word ‘disabled’ about myself, and it was a fight to get the words out:
Costa Coffee, Leighton Buzzard. 2009 perhaps, two years after diagnosis. Ordered myself a Latte and a Tiffin (that’s rich chocolate and crunched biscuit naughtiness for the uninitiated). And realised as I ordered that I was having a particularly wobbly day. Only half the coffee would reach the table if I carried it. “I’m slightly disabled, do you mind bringing the coffee to my table?” I mumbled… It was a horrible moment for me. So seared into my memory I can recall where I set myself down, the barista who served me (she fancied me, obviously), and the numb sensation as I sat there, realising what I had just admitted publicly. And to myself.
I recall too – perhaps around the same time – receiving the excellent exercise video from the MS Society featuring good ‘ol Mr Motivator. But recoiling at the seated exercisers in the film, and particularly the guy who had to lift his legs to make what looked like the most basic of moves. I couldn’t – or wouldn’t – relate to them in any way. Primeval fear I think. ‘Leg-lifting guy’ is now me.
I remember two group NHS classes in 2008-ish. One about ‘Coping with MS’, one a six-week set of physio lessons. I was polite to, but rather scared of, the ones with distinct hobbles. Or worse, walking sticks – and horrors – a chap in a motorised wheelchair. ‘Cheerful wheelchair chap’ of course, is now me.
There’s a stigma around the ‘disabled’ label. In the media we are either ‘inspiring’ or (more often) something along the lines of ‘sufferers’, ‘scroungers’, and subliminally a moaning blight on society. Rarely something mundane and in between like ‘people’, ‘dad’ or ’employee’. Sensationalism sells, especially in today’s angry society. And there’s an entirely natural fear of becoming disabled. When asked what I wanted to be when I grew up, ‘disabled’ certainly wasn’t on the list alongside secret agent, spaceman or rugby player.
There are lots of definitions of disability. Here’s one I googled: “a physical or mental condition that limits a person’s movements, senses, or activities.” So when did that start being me? 1992, when I experienced intense pins and needles all down one side for three whole days? Nope, probably not… The few years after that when I dipped in and out of embarrassing bladder and bowel issues? Didn’t feel like it at the time. Just intensely awkward for a 20-something bloke living life with a swagger.
1998 then, when every so often, out for a jog I felt like I was running through treacle? Maybe, but this was another symptom that came and went, came and went. Tripping on my left foot in the noughties while traipsing my way unconvincingly round triathlons? And visibly shaking after class when I clambered off my ‘spinning bike’ every week? Getting more ominous here…
What about May 1st 2007, the day I was diagnosed? Well Mr Neuro sent me on my way with no treatment suggestions, so he obviously felt I had ‘MS-lite’. Or he was over budget on expensive medications perhaps? I dunno…
2009 then, back to the barista moment. Yeah, probably. Only a year or so later, I was surrounded by youths as I hobbled my way back to my (blue-badge-parked) car and roundly abused for ten minutes. Almost definitely. Blue badge a bit of a giveaway too..
So 2009 or 2010 I guess I was was properly disabled and grudgingly admitting it. But still rarely engaging with my new, ever-so-scary peers. That was the next necessary step on my journey to acceptance. I’ve raved about them before but the staff, volunteers and MSers at the Chilterns MS Centre, http://Chilternsmscentre.org just ooze positivity and fun. Been visiting them for years now for exercise, physio, oxygen treatments and cake. Yum.
And now I’m in love with the whole bashtastic Wheelchair Rugby thing. Useless at it, but who cares. I’m motivated to exercise every single day to vaguely improve my upper body strength at least. I was just a little over-excited to beat my son at arm-wrestling recently thanks entirely to this new regime. https://youtu.be/NCoInwwlTJw
I’m in a thoroughly happy place now. I am disabled. And proud to be. I didn’t want to be and it is bloody tough. I’m a second-class citizen to many. But I’m also surrounded by wonderful family and friends that get it. And a wider community of disabled people who support me and make me laugh along every step – or fall – or roll of the way. Onwards!