A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Tuesday 14 February 2017

The boxer

I’m celebrating Valentine's Day with a faintly embarrassing outpouring of affection, and here it is: I love my body.

There, I’ve said it. I do.

Don’t misunderstand me: I don’t stand in front of the mirror every morning and evening talking outloud to it and affirming its loveliness, I am British for goodness sake.

I’m also not saying it’s picture perfect even in the kindest of subdued lighting. But on the whole, I think it’s great.

And the reason I think it’s great, the reason I don’t hate it despite all the limitations it has or has the potential to have, is this: my body is not letting me down. A disease is letting me down.

In my mind, they are two very, very different things.

I see my body as an increasingly knackered team member that is still managing to turn out for my side.
In the words of those irritating Prescott botherers Chumbawumba, it’s got knocked down, but it gets up again.

Because even if, as the widely held theory suggests, MS is an auto-immune disease and my body is attacking itself, then I still prefer to think it’s simply a bit bewildered rather than just plain mean.

It can’t help the random spasms, it can’t help the skewed temperature sensations, it can’t help the stabbing face pain and it can’t help the thoughts-in-a-spin-cycle.
It is not my body’s fault.

And while it fails and falters, it also tries its very, very hardest to help.

So far, it’s managed to heal claw its way back from a number of pretty hefty relapses. Alright, it may never have been a 100 per cent recovery and alright, it might hold part of the damage back and unleash it again when I’m too tired/too cold/have a virus/sat in a hot bath for too long.

But generally, it’s on my side and it’s fighting very hard to stay there.

However, I am fully aware that this state of affairs is subject to change and at some point, my body is likely to stop healing quite as well as it has done to date.

There’s only a certain amount of times myelin can repair to an acceptable level before the damage really starts to hit and more significant and permanent disability develops. 

So far I have been lucky, I have repaired to a reasonable degree. Even if each relapse has left a lingering mucky footprint on my balance, pain, sensation, cognition or vision.

I don't know how much longer this ability to mostly repair will last. And honestly, it's best not to dwell.

So while it’s sometimes been on the losing side in the skirmishes, while it can’t always make me completely better, I would officially like to thank my body for repeatedly lacing up its gloves and stepping into the ring.





Wednesday 8 February 2017

Instinct

When I was a child I wanted Action Man scars.
No, honestly, I really, really did.

I thought they’d make me look cool and brave and stoic in the face of suffering. That they’d make me look interesting with a glamorous air of survival and mystery.

I can’t remember if I thought about actually wanting to have experienced the pain that would have been required to gain them, although I wonder if I might have accepted I couldn’t have one without the other.

As a teenager I remember seeing the now defunct MS Society poster with the ripped out spine and it making quite an impression in a way other health campaigning didn’t.
It might have been because it was around the time I was diagnosed with scoliosis of the spine – a closely named but completely different condition.

During my university years, I was pretty sure something unpleasant was looming for me in my health. It never overtook my life, but it was always a niggling sensation and I'm sure one that is common to tens of thousands of people.

By the end of my first proper job, when I’d really had enough and had started to question what it was I was doing, I came to dread the working day so much that I would wish for an accident or illness that wasn’t fatal, but was serious enough to excuse me for a while.

And then, one very special day, it all really did come true. I got my scars. But they were all internal. Laced with delicate devastation through my brain and spinal cord.

I have a sinking feeling that lurking in my psyche somewhere is a horrible desire to be the centre of medical attention. A sort of misfiring Munchausen which actually resulted in a genuine illness.

So in my darker moments I do wonder if I have brought this state of affairs on myself.
I know rationally this is ludicrous and it’s far more likely to be some as-yet-unresolved combination of genetics + geography + teenage trigger illness + crappy luck, but it does make me think.

But then I also wonder that if I can bring it on myself, can I get rid of it too? What really is the strength of connection between our bodies and our minds? It’s a fascinating subject and has been the topic of much speculation – some utterly bonkers, some giving false hope, some genuine research.

There’s an Institute of Noetic Sciences which explores the role of consciousness and healing and is carrying out research into how the inner wisdom of both patients and health care providers could be combined with scientific and technological advances for the promotion of health and well-being.

Whether or not there’s really anything in this, I think it raises an interesting question: do we always know somewhere deep down if something is amiss? And if we do, then somewhere buried equally as deep, is there the answer to fix it?