MS Auckland’s Ambassador is many things, but to us he is our very own Funnyman. Here he shares his story of MS.
I was diagnosed with MS in July 2015. At the time, I thought my whole world would turn upside down. I thought I would follow in the slow-plodding footsteps of my Papa. He was diagnosed with MS a few years before I was born. He had a cool walking stick with a bell on it, and an even cooler sense of humour. He would tell my Granny that maggots had got into the pasta, when really he had sprinkled the bubbling pot with a handful of rice. He eventually traded in his walking stick for a wheelchair, and then passed away in 2008.
And here I was, just 7 years later, with a one-month-old newborn to care for, when I myself had about as much control of my hands as he did. I didn’t know at the time, but my paternity leave from my job as a dentist would lead to me leaving the profession – and I hadn’t even paid off my bloody student loan!
I’ll be honest – I was kinda looking forward to the walking stick with a bell on it. But alas! It turns out modern medication would steal my ambulatory aid from me. Curses! While I was treated with natalizumab infusions, and then later a convenient twice-daily Tecfidera pill, my Papa had been treated with a shrug and crossed fingers. But from then on I knew things were going to be a bit easier than what I had witnessed my grandfather go through.
But now here I am, 7 years on from my diagnosis, and life couldn’t be better. I take my medicine, forgetting only occasionally which makes my wife mad. I now make a living through comedy and writing, and I don’t have to remind twenty people a day that they need to floss.
Summer’s tough, but my heat management skills have become second nature. I bought a cool electric fan that makes me feel like I’m in an 80s music video. The fuzziness in my hands and legs is still there, but only when I think about it. I used to be cripplingly ticklish, but the constant paraesthesia has kinda built up my tolerance. I can sit through my 6- and 3-year old’s tickle attacks like a stoic legend.
Vision loss is my main symptom. I am legally blind, but according to my ophthalmologist I am at the level just below being able to drive so I’m pretty good. I have about 25% vision in my left eye, and 75%ish in my right. I said that to a friend once who point ed out that those numbers add to 100% so I’m all good. Not too bad. I can function pretty damn well. Sure, I’ve swigged some apple juice that turned out to be olive oil. Sure, I put some chewing gum in my mouth that turned out to be Bluetak. The worst one was when I ate a raisin that turned out to be a dead fly. But hey, that’s protein.
MS is special because it affects a lot of people, but everyone in their own unique way. The world still doesn’t know what it is, and sure we should spread awareness – but maybe not so quickly. At the moment we have a surefire excuse to get out of anything. Ever want to go home early from work? “Sorry, gotta go, my MS is playing up”. You’ll be out of there in a flash. “Can’t come in next Wednesday, I’ve got a scan of some sort or something”. It’s great. Take advantage of it. Highly recommended.
So if you have MS, or know someone with MS, talk to them about MS. It’s good to talk. If you don’t know anyone with MS – talk to the people at MS Auckland, talk to me! @ReelBigSmith on Twitter and Instagram. I would say find me on Facebook but my name is Sam Smith and there are 3.4 million of us. You’ll never find me.
Having MS sucks, but once you’re in the gang there’s no point moping around. You might as well enjoy it. There ain’t no party like an MS Club party. Adjust your goals, meet some lovely new people, and most of all – remember to floss.