Mark Desa is a co-founder of Hope For Ataxia and has a rare form of Ataxia known as ARCA1. Check out his story below.
Hi. My name is Mark.
Ataxia wasn’t even on my mind until around the time of my diagnosis. Growing up, I was always a little clumsy. I never learned how to ride a bike and generally avoided it.
I was a bit ashamed of the fact that I just couldn’t get it while my sister got it rather easily. But when I got into my teens, I played little league and practiced karate. Although acquiring new skills seemed to come faster to others. I am blessed to have been disciplined, however. This meant I took my time learning and getting better. This was truer of karate. I was there 6 days a week, 2-3 hours a day for almost all of high school. I loved it. For an introverted kid who was perfectly content being alone, karate was amazing. It truly gave me confidence and taught me that I could do anything I wanted to if I put my mind to it.
Fast forward a few years. In my 20s, I went to college, studied advertising. Martial arts slowly drifted out of my life. Rather, I should say that I let it go. Big mistake. I could have been miles ahead of where I am now if I focused on that one thing, but that’s not really what I wish for. It’s just a thought. If I didn’t end up where I am now, I wouldn’t know the other Ataxians I do now and I would have missed out on something special.
This tangent that I went on from my 20s to mid-30s saw me drinking, partying, over-eating, and generally being lazy more and more. Pornography and sex with questionable women became commonplace. I tried marijuana, but never anything beyond that. It just didn’t appeal to me. Thankfully! Given my addictive personality, I would have been royally screwed.
I drank and drove on a handful of occasions. I ate way too much even when I wasn’t hungry. It drastically increased after my late 20s as I was now in a high-stress job.
Towards the end of my tenure at my last job (mid-late 30s), catastrophic occurrences increased.
I actually got caught speeding and got given a hefty fine for doing almost double the speed limit! Looking back, I think I may have fallen asleep or something. Thank God I didn’t hurt anyone. But I was particularly angry at the time and sometimes drove a little fast. Anger and depression were ever-present. This was accompanied by some dark thoughts. Never of harming others. But I guess some of my actions would have put others at risk.
Another time, I was driving back from Ottawa early in the morning in a cargo van. I parked it inside the warehouse at work. Or at least I thought I put it in park. I proceeded to get out and quickly realized I had put the van in reverse! I tried to get back in, but I was too slow. The van’s front tire rolled over the lower part of my leg. The van was about a ton and a half. I found out later that it had broken my metatarsal (pinky toe).
I think I made the choices I did back then because (a) they were a way of self-medicating or escaping a life I was dissatisfied with (b) my particular diagnosis seems to be one that messes with my head resulting in confusion and poor decision-making.
But please, I don’t want you to think of the above as excuses. I simply didn’t understand as I do now.
All of this was going on and slurred speech and clumsiness added on top made the situation un-ignorable. Some colleagues at work prompted me to get checked out. I am grateful for that.
After some preliminary testing, I was advised to see a neurologist. At the neurologist’s office, he did some balance/coordination test and sent me for an MRI. Based on those results, he determined I have Ataxia. I wouldn’t say there was much of an impact as I didn’t quite know what that meant.
Later on, my blood was sent to the University of Chicago where it was determined I have ARCA1 (Autosomal Recessive Cerebellar Ataxia, type 1). ARCA1 is pretty rare and seems to be more cerebellar dominant than SCA or other Ataxias. Click here to watch a recent interview we did with the discoverer of ARCA1!
My neurologist gave me a page or two of information, but I didn’t quite get the full picture, so I proceeded to learn more about Ataxia and other brain conditions. I almost cried, and I was depressed for a while.
But my world slowly started to open. In my effort to understand Ataxia, I had joined many Ataxia groups on Facebook. I also started reading a lot. Knowledge is power. I am blessed that my mom instilled a love of reading in me early on. I invested my time in watching TED talks and listening to inspiring stories of people overcoming disease/disability.
I also came to realize something. Here was this doctor telling me that he couldn’t do anything for me – and by implication, I couldn’t do anything about it. Yet, I was taught by my martial arts teachers that I could do anything I put my mind to. Both of these ideas did not reconcile. And so, I chose the latter. I think I can get better. A diagnosis does not factor in my soul, my heart, my passion.
After I established this, it was back to martial arts. Muay thai and boxing mostly. Eventually, I was able to volunteer as a coach for the above plus savate. Now that I rediscovered my passion for fitness and the martial arts, I went out and got my personal training certificate.
My perspective has changed along my journey in a few ways.
I’ve come to the understanding that Ataxia isn’t the problem. I am the problem. I’ve learned that my behaviour is not necessarily a reflection of the pain I may be in, but a reaction to the perception of my pain.
My thinking of Ataxia as good or bad determines how I act. This diagnosis may be more of a blessing than it is a curse and more of a strength than a weakness. Sure, there are bad days, but maybe they’re there to teach me how to deal with bad days. Maybe they’re there to help me discover my true strength.
If I am grateful for anything, I must be grateful for everything. Too often I found myself saying that ‘life is good, but…’ or ‘if only…’ or ‘life would be better if…’. The truth is that I’d never be satisfied. There’s always something. I continue to practice and workout. Try to eat better, but I find it difficult sometimes. I want to get better. Obviously, I have a lot to learn still. But I do not intend to give up.
Often in life, we make attempts to escape discomfort, suffering, and pain. Maybe, in this case, I should embrace it and find out what it has to teach me.
My intention is to inspire/motivate others and give them hope. I have no idea how I’ll do that, but that’s part of the fun. I’ll leave you with one of my favourite poems that sums up my feeling about my journey.
IF by Rudyard Kipling
If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you
But make allowance for their doubting too,
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:
If you can dream–and not make dreams your master,
If you can think–and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ‘em up with worn-out tools:
If you can make one heap of all your winnings
And risk it all on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: “Hold on!”
If you can talk with crowds and keep your virtue,
Or walk with kings–nor lose the common touch,
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much,
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And–which is more–you’ll be a Man, my son!
Thank you Mark Desa for sharing your very personal story.
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