Howzit guys,
As some of you will know, when I was first diagnosed with this stupid thing, some of the doctors we spoke to were really ambiguous about timelines because twenty-five years ago not a lot was known about this brand of muscular dystrophy. Zooming closer in, like all our different brands it manifests differently in each lucky beneficiary. So, time of onset, time before finally giving in to using the wheels, general time of its progression to play out in our bodies, and of course the severity of symptoms can vary pretty drastically. So, I have been kicking the elusive can full of timelines down the road for the majority of my life. More pronounced in my twenties but even when I realised I wasn’t about to kick the proverbial bucket anytime soon, I always had something sitting on my shoulder telling me that my life was over. I think because little parts of our bodies are dying all the time, it’s been hard not to buy into the narrative I had been given and had built up in my screwed-up mind. Also, Dr Google was equally ambitious as I, helping me to read about the end stages of people’s lives and some crazy case studies of guys who couldn’t breathe because their scoliosis was so pronounced it was crushing their lungs. But even with all this sloshing around my head, I still had a drive within me to try to give back, to help my disabled community and make my life worthwhile, leaving my imprint on life. In the beginning I didn’t really know what to expect, but I did know if I was idle for too long my mind would explode.
Gym has always been really important to me, not only for the incredibly beneficial physical aspects of it but also because it gave me something to do, something to put my mind on. I made friends with the trainers, and together we polished the fine art of talking kak. I was always an extremely skinny kid, not only because of the wonky muscles but also because my old man had been just as skinny when he was a kid. So, I was always thinking about eating as much as possible to try to put some weight on, not entirely because I wanted to improve my condition but also because I wanted to enlarge my guns to impress the ladies. But I still wanted to give back. I wasn’t studying anything, which I have many regrets about now, but I also know myself and I probably would have stuffed around and not finished, like with a lot of stuff in my life. But I detested myself for just sitting on my butt and not doing anything. I did a basic counselling course and a weekend workshop over three months, started talking to some of you guys at the Muscular Dystrophy Foundation, and belonged to the Ataxia South Africa community. Okay, it was basically a chat group for us ataxians, and I used what I had learned there to empathise with them. I also volunteered a few days a week at the office of the MDF, basically licking and sticking stamps on the physical magazine they sent out back in the day. I also made a database for everyone’s addresses and helped for a few years with the Ithuba proposals for funding. I had a few jobs over the years and also did the South African banking for my brother-in-law’s business up in Botswana. Even though I was trying to keep busy with bits and pieces, I can remember large chunks of the younger me being really bored and having a sense of not fulfilling my potential or following my purpose. At around this time I read The Alchemist, a novel by Paulo Coelho, which tells of a young man who goes on a journey to find his purpose. I had no idea what my purpose was though. I thought it could involve talking with other people with similar problems, and this was hugely liberating, but I slowly learned I didn’t have a lot to talk about. I have since learned that one of the biggest parts of counselling people is just letting them tell you their story. People just want to be heard, and very often it helps so much just to talk to someone in a similar position with challenges you can relate to.
After I stopped driving, I still wanted to tell people my story, tell people what it has felt like as my muscles have slowly stopped working, and explain my emotions and feelings at the time. I had been encouraged by a few people to write a memoir, and after a few years of trying here and there, I met Andrew Miller (also with MD), and he held my hand and guided me through the writing and publication process. I got so much phenomenal feedback, not only from friends and family but also from many people around the globe, and this made me feel like I was finding my purpose to a certain extent. I told you guys about the video project I am currently setting my mind to. It’s still in the post, but as with everything in my life, it is happening painfully slowly. I’ve run into a few brick walls, but things are moving again, so please continue watching this space – hopefully something pretty cool will evolve next year. Maybe I will revitalise something I was going to start when Covid foiled my plans. What I am saying is I have had and found quite a bit of stuff to give me meaning and a sense of purpose throughout my time here, but in between I have felt that I’ve been stumbling around and not amounting to anything or fulfilling my potential. What I want to tell you is that just by being you and living your life, you are putting yourself out into the world and are changing the perspective of not only your friends and family but also the random guy at the shops. If you had told me this when I was younger, I’d have wanted to punch you in your ear because I thought I was going to accomplish something titanic. But I realise now the power that lies in just being able to change the perspective of another small dude in the shops about his own life. I am encouraging you just to keep yourself busy doing small things for yourself or to help your family. If you set your mind to doing stuff that way, you won’t drive yourself bonkers thinking about scenarios that might have been possible or can never be a reality. I wish someone had told me this when I was first diagnosed.
The attitude I’ve advocated gives you less time to ruminate about the ‘could-have’, ‘would-have’, ‘should-have’ stuff. I have seen both sides of this, when I was younger and more so in the past few years. Time has been a weird concept throughout my life – and I’m pretty sure the same goes for a lot of you guys too.