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Female MS patient applying for a PhD course on her laptop.

What MS Took From Me – and What it Gave Back

Reading time | 4 mins
“I could now do everything I was too afraid to pursue before,” says Barbara Stensland.

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I’ve been living with multiple sclerosis (MS) for ten years. 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 time to 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. Still, 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. I could usually 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 a fascinating, confounding and challenging job which could not be more suited to me.

Construction? Yes!

My "building clothes" mean no need to decide which office clothes to wear every day - plus heavy boots are perfect for balance and cotton-wool feet. 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 excellent for my Vitamin D levels), and I can take a break when I need one. If I wake up and know it will 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 now do everything I was too afraid to pursue before. It was an enticing proposition that came decades before most of us encounter a serious diagnosis.

I had started blogging about MS and parenting a growing teenager back in 2012. I loved it; it gave me 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 an "Ivory Towers" type. I threw myself, often quite literally, into construction. A PhD? Don't be silly.

But I witnessed my fellow Master's students begin their PhDs and felt envious. As they chatted through their writings, I could feel the stirrings of an idea. I signed up... and that stirring promptly turned to nausea.

Turns out the nausea was just nerves, as I have no regrets. 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 - not necessarily one laid down by the bigger society.

Being "disabled" often means being shunted into a side-room, away from the "normal" community. If that happens, why not let your imagination run riot? What have you always wanted to do but were too afraid to explore any further?

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.

NPS-IE-NP-00669 January 2023