With the forthcoming MS Awareness Week and World MS Day looming large, I’m put in mind of the first time I was out collecting on the street with a roll of MS Society stickers and a collection box.
I did it with great reluctance as I never was and have never been a natural tin rattler. But the girl I was with at the time had other ideas and not without good reason.
"I wanted to hide myself away"
This was the 80s; an age of mullets, shell suits and, as someone recently diagnosed with MS, extreme self-absorbed selfishness. Why on earth would I want to put myself out there? I had multiple sclerosis, which meant I had far more important things to think about; ME!
As far as it went, as I remember it, her idea was to drag me away from my own self-indulgent lethargy. And yes, I was very good at self-pitying because ‘poor me’ had MS. And besides, I wanted to hide myself away because I just wasn’t coping.
But she had other ideas. After all, in every relationship where one party has MS, you both have to deal with the consequences of living with the illness. She thought this would help and I very reluctantly gave in which was just par for the course for me, MS or no MS.
This was the 80s. An age of mullets, shell suits and, as someone recently diagnosed with MS, extreme self-absorbed selfishness
A hostage to MS fortune
I have a very clear recollection of that day which, as I write, makes me feel quite ashamed of my behaviour. Not to put too fine a point on it my attitude was - well, it stunk. I was there on the High Street feeling like an exhibit, a hostage to MS fortune every time a passer-by added more coins to the box in return for a sticker.
Although I continued to behave petulantly for most of the morning, it took until somebody I vaguely knew from school to slide a folded £20 note through the slit in the collection box for me to begin to get the point. He said that his younger brother had multiple sclerosis too. I never knew, but there again why should I have?
The first step in my journey to accepting my MS
Nevertheless, that was the moment where everything changed. That was when the penny dropped as fast as it fell to the bottom of the box. Although MS Day was meant for people like me it was then I realised that it wasn’t only about me. Even though I had an aunt who had MS, that was different. Of course it was. She wasn’t a contemporary of mine. She wasn’t my generation. She wasn’t someone to whom I could relate.
I’d be lying if I said from that moment on my life changed positively for the better because it didn’t. Not then. That would take time. I’d only just been diagnosed and it was going to take many years more for me to come to terms with what I had. But rattling the tin for the MS Society that day was something I can honestly say was the first step in my journey of acceptance for having MS.
Martin is a writer and literary consultant. You can find out more about his work at martinbaum.co.uk.