Jim Sweeney, actor, writer and comedian, is probably best known to American audiences as a frequent competitor on the original British improv show Whose Line Is It Anyway?, alongside many of his friends from London’s Comedy Store Players. If you’re a fan of British comedy, you may also have seen him in Blackadder the Third as Samuel Taylor Coleridge.
Jim, an atheist, has had multiple sclerosis for 25 years. It’s ceased his ability to continue performing on stage, but he continues to entertain on Twitter and YouTube, displaying a spirit not even close to being broken by his illness. He was very gracious to write this lovely post for Newly Nerfed about his experiences, the advice he will and won’t give newly diagnosed patients, and the link between MS and increased chocolate consumption.
OK.
You have just been diagnosed with Multiple Sclerosis. Welcome to the Fellowship of the Scarred Up Nerve. You’ll find a wide variety of members ranging from those with Benign MS (or “MS Lite”, as I prefer to call it) to those of us with more hard-core taste who have chosen to skip the entrees and cut straight to the main course; Primary Progressive MS. (or “MS Special Brew”, as I prefer to call it.)
Where to begin?
Well, my eyesight became blurred in the autumn of 1985. At that time, I wore contact lenses (the Devil’s spectacles) and had just been given a new pair. My vision seemed to blur at the same time so I assumed the optician had messed up my prescription.
He had not.
Anyway, the next five years passed by in a blur (all puns intended) of consultants, tests, scans, urine samples, blood samples, tear samples (I had to sniff ammonia rather than just watch “Titanic” which would have triggered a steady flow of tears of boredom) and, the original Spinal Tap, the lumbar puncture; so good that I had two.
Finally, when there was nothing left to prod or poke, I was told that it might be MS.
The initial shock subsided rapidly as I realised that I had actually no idea what MS meant. My neurologist had said it in a way that suggested that I should feel shocked so I looked shocked. After all, it would have been rude to behave otherwise.
It might seem incredible that I didn’t even ask him exactly what having MS would mean to my life. In those far off days there was no Internet to Google or Wikipedia to misinform you. Books? Blurred vision. Anyway, he had recommended that I got a second opinion from the specialist at Moorfields Eye Hospital.
The second diagnosis? It wasn’t MS but a rogue virus that had attacked the optic nerve. Fair enough, I thought to myself (who else would have I thought it to?) and I carried on with my life.
Over the following years as various bits of me stopped working, I realised that it probably was MS, although I still did not have any real understanding of MS. Had not read anything about it, had not sought advice, had not visited the doctor and had proved Mr. Pocock to be right; I was not academically minded.
Basically, I wasn’t in denial, I was in blissful ignorance.
However, MS decided to make its presence felt and lovely leg spasms arrived on the scene to encourage me to visit a doctor or increase the medicinal marijuana. After a few weeks of serious medicinal marijuanaing and its inevitable byproduct heavy chocolate abuse, I waved the white flag, picked out the Mars bar wrappers and tried to remember a) Who I was b) Where I was c) What it was I was going to do next.
Eventually, I made it to the doctor’s surgery and was welcomed as the prodigal patient. They didn’t sacrifice the fattened calf or throw a great banquet in celebration but they did throw open the medicine cabinet.
They also offered me Botox. Quite how walking around with a dead forehead was going to kill my MS, I didn’t know but if it’s good enough for Ann Robinson…
It turned out that they wanted to inject Botox into my legs: numb the nerve, stop the spasm. It worked for a few months but gradually the effects diminished. Also, it was disturbing because my legs looked younger than the rest of my body but were incapable of displaying any emotion. Back to the medicine cabinet and its anti-spasm tablets.
…and today? My eyesight is still blurred but the MS put its foot down and raced through the rest of my body so that my days are spent being hoisted from bed to wheelchair to commode to bathroom to bed etc. It took a quarter of a century but now I am a fully paid-up member of the housebound brigade with my trusty team of carers.
Advice? You will be swamped by a tidal wave of advice so I’m not going to pass on any pearls of wisdom. Diets? Drugs? Meditation? Surgery? Whatever works for you although marijuana does relieve leg spasms, helps me sleep and has opened my eyes to a world of luxury chocolate that has to be explored.
Actually, there is a piece of advice that I pass on to anyone and everyone but it certainly keeps me afloat. I’ll leave it with you now as well as reminding you that MS is an unwelcome houseguest but it is your house. If it wants to take over the running of the house, make it work for it.
Anyway, (drum roll) here’s my well considered piece of advice:
Each and every day, grab life by the ears and French kiss it to the ground.
Works for me.
(Photographs by Andy Hollingworth and Andrew Crowley)
