I’ve been living with MS for nine years, and it has brought with it, among numerous things: an incurable illness, a body that refuses to do what I ask it to, and a fogged brain.
But what did it ever give back?
Strangely, MS gave me the chance to throw caution to the wind and live the life I always wanted to.
But it took time. When MS first hit, I was divorced and raising my 11-year-old son on my own, in a dead-end job and an equally terminal relationship. It was life, and I was doing my best.
Then MS swept everything away until it was just me, my son and my MS. It was sink or swim, so I grabbed some water-wings and floated around until I found what I was looking for. Like anyone learning to swim, it wasn’t easy, but gradually I lost the wings and began to navigate the choppy waters on my own.
I tried to adapt my life to MS
First things first: work – I had bills to pay and a roof to keep over our heads. After a traumatic legal case where I was dismissed for having MS, I applied everywhere I could. Ticking the ‘disability’ box however, soon put paid to that.
Years before, I’d helped my best friend set up his own construction company and could be found hanging out at the weekends with him, learning the mysterious art of SDS drills, joist-hangers and resin bolts. He offered me a job. Eight years on, I’m still there, enjoying every minute of an interesting, confounding and challenging job which could not be more suited to me.
Building clothes means no need to decide which office clothes to wear every day, heavy boots are perfect for balance and cotton-wool feet, and there is an endless supply of cooling mud and lots of interaction with customers. Breaking free from the office has given me confidence and a joy I never thought I would find in a workplace again. I am in the fresh air more often than not (which is great for my Vitamin D levels), I can take a break when I need one and if I wake up and know it’s going to be a bad MS day, I call my friend and tell him. No recrimination.
In the meantime, my body morphed into something I didn’t understand. Something different to the norm I was used to. It wouldn’t put my feet where I wanted them to go. It wouldn’t rest at the usual times and wanted to sleep when it shouldn’t. Nerves jangled, prickling and burning with an intense sensation. My brain filled with fuzziness, reading became difficult and I stumbled through the days.
Lying in my bed, I knew that life had completely turned around – everything I thought I would do, I wouldn’t. My life could be over in my 30s.
Unleashing my potential
So by my reckoning then, I could do everything I always wanted to but was too afraid to. It was an enticing proposition, decades before most of us encounter a serious diagnosis.
I had started blogging about MS and life with a growing Teenager back in 2012. I loved it, a chance for me to offload. Could I write about anything else? I doubted it but signed up for a Master’s in Creative Writing. Despite a rocky beginning, involving a terrible short story about a dead mouse, I got the hang of it. I walked shakily across the stage and graduated.
I took a year out of academia, stunned at my success. I know that sounds weird, but I never considered myself as belonging to those Ivory Towers. I threw myself, often quite literally, into construction. A PhD? Don’t be silly.
But an idea took hold and I tentatively applied.
I witnessed my fellow Masters students begin their PhDs and felt envious. As they chatted through their writings, I felt the stirrings of an idea. So, I signed up and promptly felt sick.
I’m now in the second year of my part-time course, as work has to take precedence. The beauty of a slower pace is evident – it highlights the entirely bizarre way MS can deliver the most unexpected gifts.
Now I follow my own path
I feel that when your own body attacks you, it really doesn’t matter when other people do. So now I follow my own path, and not perhaps one laid down by the bigger society.
Being ‘disabled’ often means being shunted into a side-room, away from the normal activity and society. If that happens, why not let your imagination run riot. What have you always wanted to do but were too afraid to pursue?
If you feel written off by society, do that thing. When you think your opinion is meaningless, make some noise. Take that loosening of societal bonds and run with it.
The worst anyone can say is, ‘ah, they’re disabled’ and pat you on the head.
UK/MED/20/0011 Jan 2020