I caught the tail-end of a programme the other day in which a man with a prosthetic foot was being interviewed. He was asked if, should a miracle cure become available, would he take it?
He was vociferous in his rejection of this – he was perfectly happy and his ‘disability’ had made him who he was.
Powerful stuff. Mulling it over, I came to a surprising conclusion. MS has shaped and moulded me in completely unexpected and positive ways and given me courage where previously I had very little.
When I was younger I was in a terrible, near-fatal car crash. I vowed to change my life forever if I recovered, and I would never take anything for granted again.
A year later, the scars had almost healed, I could walk properly and I was back to normal. Did I carry that message and always remember how fragile life was? Did I heck. But with something like MS, there is no end point, no point at which you can forget, so we really do need to change our lives and keep changing them, whilst appreciating every small victory and achievement.
I used to hate MS, until I realised that by hating it, I was hating a fundamental part of myself and this was essentially self-loathing. MS is me and I am MS. It is not a separate entity. I went through a dark, lonely, terrifying grieving process and hit rock bottom not just once but repeatedly.
When a chink of light appeared, I was on the up again. I frequently joke that when you get diagnosed with MS, anything else is immaterial. You can cope with pretty much everything life has to throw at you. And I think that is true and a powerful lesson to learn at my age, rather than as a wistful pensioner looking back over a life less-lived.
MS has given me a kick up the backside. It has made me speak up for myself, it has made me more confident and less willing to accept shabby behaviour. My stumbling, my tingling, and dodgy hands are now part of me. I stumble, therefore I am…….
But…… if you had the chance not to have MS would you take it?!? It’s changed who you are (yes, for the better) but you can still wish for your life to have taken a slightly different path.
The TV guy said that he was happy… he didn’t say he would prefer not to have his disability – there is a big difference. He’s in a place now where I guess he can’t see life without his disability but it doesn’t mean he cant wish for it not to exist! x
Hi Allyson!
Very, very good point – thanks for pulling me up on it! Would I wish never to have had MS? Definitely. Miracle cure? I guess in a way I have taken it – Alemtuzumab. So I know I speak from a privileged position. I am lucky, more than lucky. I took it so I could see my son safely to university, after that, who knows. I also took it because my dad didn’t have the chance and he died of MS complications at the age of 35.
I guess what I meant to say, without it being in bad taste, was that MS, in its own way, gave me a karmic kick up the backside and I have to make the best of it.
Horribly, amazingly it has also made my life better. I know this isn’t a popular idea, but it works for me – it HAS to otherwise I would slide under.
I know not everyone will agree with my post and it took me a while to write it. I hope I don’t demean anyone else with worse MS than me. I’m not saying, ‘yay, MS is fab!!’, it was more, ‘ok, I have this and madly, it has changed my life in unexpected ways’.
I hope I’m making sense…
X
Oh no… please don’t think i was pulling you up for anything!!! Just curious…
I don’t think there is an MS’er anywhere that would say it’s ‘fab’ – but i suppose there are some people that would say (when symptoms are not flooring them!) that they don’t really mind having it as it doesn’t bother them. However ask the same person the same question when they can’t walk and their answer will be very different!
Loving your blog – you really make me stop and think about things…. thanks x
Hey Allyson,
Not at all! In fact, after I pressed’publish’ I thought, oops, I haven’t answered my own question, lol, so your comment was very good!
That’s the lovely thing about a blog. MS can make us awfully introspective, so when I write a blog post and gets different comments, it makes me take my head out of the sand and go, ‘oh, that’s a point I hadn’t thought about before’.
Thank you so much for the lovely comment about my blog – means a lot to me (and the darned cat…)
X
Hello,
I love that picture!!
Do you know, it’s funny, whist I was doing my housework jigging to music I came across a feeling similar. Very strange. I like rock and it was a song by POD called Alive. The words of the chorus go along the lines of, I feel so alive, for the very first time, I can’t deny you, I feel so alive.
Now, I was dancing and singing, throwing my arms out to the side in an accepting way. Accepting of what is happening. I feel the same in so many ways.
I would take a cure, sure, but I am finding things out about myself and definitely of others.
Sam x
Thanks Sam!
I know exactly what you mean. Acceptance is really important. I’ve been thinking a lot today, re.cure and acceptance. I figure, we all have to face something at some point in our lives. There’s very few people who get to 100 without something going physically wrong. Mine just happened a lot earlier. But in a way, it’s given me a chance to re-evaluate everything in my life and that has to be a good thing.
This post was just written about something that was on my mind. It’s not set in stone and I might feel completely different tomorrow, lol. Am I in denial? Possibly.
All I know is that I was in a pretty grim place during the diagnosis period. Two friends helped me through it. One is the builder, who has been amazing. The other, well, let’s just say I took her into my confidence, she witnessed me at my very lowest ebb and then she betrayed me in an unbelievably terrible way. You certainly find out who your friends are!
X
Thought-provoking post, SIF! About a month after I was diagnosed, I had a terrible relapse that left me unable to use my right leg or my right hand (walking or holding anything in that hand became impossible). During that time, in between the sobbing, I thought: “This is it; I may never walk again.” Thank goodness it went away, and I vowed to never take walking for granted again. That’s proven easier said than done. We take *so* much for granted, even when given a preview of what it would be like to not have the ability to, say, walk. Coincidentally, I was in the parking lot of a big shopping center yesterday and had decided to park far away and walk to the stores. On my way back to the car, having bought far too much crap and laden down with heavy bags and a giant unwieldy wreath for the front door, I was annoyed and cursing my earlier decision to park/walk. But then I thought (really, I did), “Be glad you CAN walk; you do not know when that might change.” And, although I was annoyed that my hands were filled with bags/unwieldy wreath and I couldn’t push up my glasses, which had slipped midway down my nose, I didn’t think complaining thoughts about the walking anymore.
p.s. sorry about your former friend. Rotten.
Hiya CrankyPants!
A wreath????? A Valentine’s wreath? Easter? But I know what you mean, no matter how difficult things get, they’re not yet impossible. Unless you count trying to get The Teenager to wash his face.
And that friend, that’s a looooong story and quite a nasty one but thankfully life is so much better now and I only surround myself with nice, lovely people.
X
It’s a fantastic combination wreath I can leave up year ’round: cavorting bunnies for Easter, hearts for V.Day, elves & snowmen for Christmas, flags for July 4, leprechauns for St. Patrick’s Day, pumpkins for Halloween, and a huge turkey head(in the middle, natch) for Thanksgiving. It was on clearance, if you can believe it, and I got it for an incredible 75% off.
Okay, I’m kidding. It’s a tasteful (really!) spring-y wreath. We have some crocuses blooming in the yard, so I got a bit of spring fever yesterday.
I got all excited then – thought it was some amazing American invention that had yet to hit our shores….
A springy wreath sounds lovely. I have a little wooden thing to hang on door saying ‘every bunny welcome’. Made me laugh. Still does. I don’t get out much.
X
I’ve lived with MS since 1979, officially diagnosed in 1995 and had to stop work in Jan 2012.
I would love not to have MS but it has been a part of my life for so long that I cannot imagine life without it. I hope that isn’t an oxymoron
What I would like is for MS to stop its progression. Its removing my life bit by bit. Not quite the man I once was. That’s what really hurts
Hi Patrick,
Thank you so much for your comment. It’s not an oxymoron, I know what you mean, although of course I am at the start of the whole MS journey and I am careful not to tread on people’s toes who have lived with it for much longer.
It’s a cruel disease, there’s no two ways about it. It steals from you, bit by bit. And I think it is the ‘unknown-ness’ of it – if and when progression happens. It’s random. Like waking up one day and not being able to speak – completely out of the blue.
X