Image Credit: Getty Images/Wenjie Dong

MS in my Future: Would I Have Wanted to Know?

Reading time | 3 mins

People sometimes ask me, ‘If there was a test you could have taken that would have told you one day you’d be diagnosed with MS, would you have taken it?’

The short answer is no.

Living life to the full

When I was 18, embarking on an exhilarating, long-planned life abroad with a handsome Austrian boyfriend, I would certainly not have liked to know that in less than 20 years, I would be diagnosed with MS.

Why would I? At 18, my life was mapped out perfectly: get the exams over and done with, move to Austria and be very, very happy. Easy.

I wore Doc Martin boots, stripy tights, mirror-spangled skirts and felt that I could take on the world, which at that time had U2’s ‘Achtung Baby’ as its soundtrack. And so it was. Long, late nights spent in ‘bierkellers’ (or beer cellars – basically the Austrian answer to the pub) debating the very meaning of life. Long, early mornings in coffee houses recovering and debating ancient philosophers.

Life was ‘sehr, sehr gut’.

Afterwards I took a job offer in New York and spent the following four years traveling the world, translating a load of nonsense into three languages. I was not worrying about MS, despite knowing my father had died of it in 1978.  

In fact, anything up until I was 37 and 10 months old had nothing to do with MS, and for that I am eternally grateful.

I always said I will have lived a happy life if I had achieved three things: given birth, studied at uni, and lived abroad, and I did all that.

When I was holding my new-born son in my arms at the age of 26, I didn’t think about MS, and I didn’t know I was less than 12 years away from a devastating diagnosis. I did not know that my son would have a one in 50 chance of having it too. He was perfect. He is perfect.

When everything changed

And then, in 2011, my world came crashing down as I got the irrevocable diagnosis. But, you know what? I still wouldn’t have wanted advance notice.

Sure, I was in a dead-end job, but it paid the bills and ensured I was local to nursery/primary school emergencies. Sure, I was in a dead-end relationship, but we got along just fine.

That was all set to change.

The day I woke up unable to talk or walk was seismic in its ridiculousness. My main aim was to get out of hospital and get back to my son, so I discharged myself and went to my mum’s, where my son had been dropped off after a weekend in London with his father.

I still couldn’t speak properly (the massive relapse did a lot of damage to the speech part of my brain), but I’d rather hear my son’s brilliant impersonation of me than stay in hospital. He still does it now sometimes, as a party piece.

Returning to hospital the following week for another MRI, I was taken unexpectedly to a bed and told I was having a lumbar puncture. Again, I’m glad I didn’t know. After excruciating pain and no advice not to sit up (which I did), I survived the lumbar puncture and the Lumbar Puncture Headache and went back to work. Like an idiot.

Eleven months later, I received the news. It was bad, and worse than that, my MS was rapidly-evolving (unlike me, LOL!). Even then, would I have wanted to know before?

No. Not at all. I am grateful that I had the chance to explore, often blindly, my way through life. Those experiences, Times Square, Hong Kong harbour, Venezuela, Oslo…

Now that I do know

Since then, that dead-end job has changed, and the dead-end relationship is history.

These days I travel with meaning. In March last year a friend and I took a road-trip over 1,000 miles to Geneva and it was fantastic. (He drove, I did the commentary). A couple of years back, we did the same to Austria, Croatia and Slovenia. That is meaningful.

I may have MS, and I may have slowed down, but I can still sit in the passenger seat and be a back seat driver.

So yes, I am glad I did not know I would have MS. Would you?

UK/MED/19/0024 February 2019