“You’re so inspiring!”
Forever in Lockdown. Kinda’…
6 October 2020
I still shoot from the hip. But now I wee from the ankle. Bladder news.
9 December 2020
An inspiring person, yesterday
There are plenty of despairing ‘Things not to say to a disabled person’ lists if you google them.
A couple of lead contenders appearing on the majority of these:
– ‘You look so well!’ Actually, we know we don’t by ‘normal’ standards, but I have some sympathy with this. It is meant in good faith, and to me at least as a Brit, not unlike talking about the weather. Might rain later.
– ‘Yeah, I know how you feel’. ‘Yeah, I get tired too’. These ones are tough to respond to. No, you don’t. You may, at times get the briefest of glimpses and insights into snippets of our life. But you are likely to see light at the end of the tunnel. With a chronic illness, you just don’t. It’s relentless. Even others with Multiple Sclerosis can’t fully understand: their MS experience is guaranteed to be different to mine, mine to theirs. But they get that we get it. Make sense? Probably not! Moving on.
– ‘My cousin’s friend’s brother has MS and swears by [standing on their head every Bank Holiday] [licking raw Brussel sprouts] [drinking the blood of young virgin ants]. Have you tried it?’ I don’t fight this one. I smile politely and change the subject. And get on with trying to live my life the best I can. Exercise, sleep, (mostly) healthy eating, medication for my symptoms. No eating of free-range squirrels for me thank-you, no smothering myself in ketchup.
A man trying alternative therapy, yesterday
And another classic, “You’re so inspiring”. The late Stella Young, ‘journalist, comedian, feminist and fierce disability activist’, delivered a fabulous Ted Talk on the subject: https://youtu.be/8K9Gg164Bsw
Stella Young, sadly not yesterday. RIP
I’d love you to watch it. Laugh-out loud stuff on a serious topic. But a rough summary, also straight from Stella:“My everyday life in which I do exactly the same things as everyone else should not inspire people, and yet I am constantly congratulated by strangers for simply existing.”
I agree with what she says – and wish I could deliver a Ted Talk half as powerful. There’s a phrase that was coined somewhere: ‘inspiration porn’. Let’s roll out the disabled person in a nice pic to make us feel better about ourselves!
It is indeed strange being called ‘inspiring’ essentially because I still enjoy life. I love my family, I love my friends. I love the purpose that MS has given me. So I am genuinely bemused when I’m seen as an object of pity, and simultaneously ‘inspire’ people just because I still smile.
BUT BUT BUT, I do try so very hard to make others pause and think for a moment or three. And I realise that can take us smoothly into inspiration territory.
My biggest ‘target’, I think is other MSers, other disabled people. It is very easy to give in, to accept a welcoming bed. To have another nap. To retire. To hide. To accept our allotted role as second-class, weird citizens. A bit like Frodo, Bilbo and Gandalf heading into the West at the end of Lord of the Rings. I’m just not ready yet to fade away, thank-you. I accept certain limitations. I even begrudgingly realise I’ll never play rugby for England. But I’m going after my alternative reality big time!
Now not everyone has to do daft things all the time like me. They don’t *have* to do anything. But I would rather be stared at because of my funky wheelchair. Because I’m flopping out of a plane. Because I’m steering a Quadbike very very badly. Because of my embarrassing – and rather liberating – choice of clothes and hairstyles. And not because I’m a freak. Or a scrounger, as the lovely Daily Mail might have you believe.
A tree and a very well-dressed person, yesterday. Not pyjamas at all, no sir!
So if I can persuade one disabled person to take up knitting, or writing, or healthier eating, or mindfulness, or Wheelchair Rugby, I’m happy. And as for you healthy people, I’m wanting to raise awareness of my own disability, Multiple Sclerosis. And of every other flavour of disability. And onwards to talking about all things diversity. There’s a lot to do and I have so much to say.
My other target is me. Being ‘out there‘ helps my brittle self-esteem too. I have just had a suprapubic catheter inserted so am feeling particularly sorry for myself this week. I’ll take all the ‘legendary’, ‘amazing’ and ‘magnificent‘ comments I can get! My CEO at Shift.ms even called me ‘cool’. Hmmm…
This final point isn’t gonna work, I know. It hardly rolls off the tongue or the keyboard. But it would be lovely to be told one day, ”You’re so thought-provoking”.
22 Comments
Hey Mark, Love this. I get the inspiring one a lot. You put it better than I can. I am not inspiring just trying to stay a float!
All the best
Adam.
Thanks Adam!
I think ‘staying afloat’ is exactly what we are doing. I’m just splashing around more loudly than others…
Honestly I could have written this. The number of times I’ve heard these things particularly the ‘you’re so inspiring one’. My answer? I have two choices in my life I either do or I don’t. I can choose to get up every morning into my wheelchair and get on with my life or I can choose to stay in bed, feeling sorry for myself and having no life at all. It’s a no-brainer for me. I can smile or I can cry. I can be positive or negative, and so it goes on. Yes, I have limited choices as against healthy people, but I do have choices. I’m not trying to ‘inspire’ people, I’m just trying to live my life like every other person.
A lot is lost when you have MS, but the one thing that remains is choice, however limited.
Sorry you feel down after the SP catheter. I got so fed up I eventually had a urostomy, best thing I ever did.
Thanks Belinda.
Yup, we roll on!
It’s early days with the SPC. Just feeling a little fragile and over-scared. A positive already is to be able to stay fully hydrated. Surely a healthier upturn…
Just one thing. How can you tell if an ant is a virgin?
Do you need a specialist vet or something?
After you’ve slept with a few, I find you kinda get the difference…
I need some mind bleach.
Apologies. The ants definitely enjoy it.
Well Mark, can I, with all due respect , beg to differ? I’m afraid you are inspiring, and not because you are living a “normal life”.
You (and your family) are inspiring (at least to me), because:
– you flop our of airplanes and skydive at frankly frightening regularity (something I have never and will never have the guts to do with or without MS).
– you write well enough to move me to tears and gaffaws in the the same paragraph (and trust me I’m a tough crowd).
– you spent lock-down raising money for charity with absolutely no decorum worth talking about, whilst most of us were surfing the couch watching Netflix.
– you are refreshingly authentic (abused cliche word I know, but in your case absolutely true).
– you and you family face challenges with humour and determination (and I’m not saying other people’s kids don’t have accidents, but your family has had some doozies)
I’m pretty sure you guys are far from “perfect” (well except Jo), but your fabulously funny banter, your glass half full attitude and your ballsy rhetoric have inspired me to actually do some stuff that perhaps I wouldn’t have otherwise.
And that, my friend, is what inspiring is. So no matter how “politically incorrect” saying you’re inspiring is just because you have MS , I will keep saying it! So there.
Wowza Jaki, that is a lovely response. Meeting Jo was such a leg-up in terms of wanting to be the very best version of myself that I could. Nearly 21 years into our marriage I still love and fancy her sooo much.
I must get on with finishing my bloody book…
You’re so thought provoking, Mark.
?
Where do you source squirrel ??
Plenty where I live (should I fancy it!). Way too cute in my books…
Here’s another one “a guy I used to work with had ms and he’s bed bound now” or this cracker recently, on hearing of my ms diagnosis “dear dear why do all the shitty things happen to good people when there’s murderers in perfect health” talk about Job’s bloody comforter !!!!! Lolerz
One of the very first comments I got was, ‘oh, My mum had MS and she died’. Cheers!
Great blog, pretty sure ive called you inspirational. Sorry about that. I do think you are bloody courageous though and very funny. You’ve really raised awareness of what its like living with MS with new audiences such as those on linkedin. Hopefully that will translate into better understanding and treatment of those living with MS day to day. All the best to you and your family x
Thanks Laura! You’re very kind and I will keep pushing. Weird how LinkedIn is proving so powerful. No complaints though!
There is certainly a lot to find out about this issue. I love all the points you made. Carlita Salvador Derwood
Thank you! It is indeed rather complex…
You produce quality content, congratulations on this
Thanks!