Getting Curious about Aging with Ullrich Muscular Dystrophy

G’day, friends, and welcome to another week and another blog post!

Would you believe I turn 24 in only a week? It’s honestly wild to think I am almost halfway to 30! Aging is something we all go through; it’s just an unavoidable part of life; the grey hair, crow’s feet, bags under the eyes that won’t go away, sun spots, wrinkles, and the ever-increasing desire to be in bed by 7 pm. Some of us embrace aging, but it can be a terrifying concept for others, especially when you have a disability that continues to deteriorate as you age.

In many ways, having Muscular Dystrophy, you age much faster physically as the muscles weaken. I was having a conversation with a good mate of mine the other week who happens to have Duchenne MD, and he told me that he is slowing down in his old age. He is only 32. For someone with Duchenne, 32 is the ‘non-disabled 82’. Where 99% (I did not fact-check this, so don’t quote me) of the population is only starting to live life, getting married, starting a family, see the world, climb the corporate ladder; those with severe types of MD are perhaps not doing all of those things, and are indeed slowing down more as fatigue and muscle wasting increases. It is a terrifying concept.

For me, aging is something I think about pretty regularly. It doesn’t completely consume me, but there are moments, like birthdays or friends’ funerals, where you stop and evaluate your life and realise you are getting older. Have I done or am I doing everything I want to do? Am I living or just surviving?

Having a disability that impacts your lifespan is a paralysing concept that you must process and get used to at such a young age. Growing up, the thought of ageing terrified me, especially when I learnt more about my condition and what it meant in the long run. It plagued my thoughts every single day, to the point I would get incredibly worked up and anxious about it. Some people even say it’s almost unfair for people not having the choice but to contemplate the end before you have even begun to live life. I immediately get angry and sad when I think about the other little kids being diagnosed and knowing they will eventually discover this grim fact. However, for my own life, I don’t feel its unfair for me to have thoughts about getting older, and what that means at my age. And I often wonder why that is; is it because I am in my twenties and still tracking okay, or have I just got used to the idea enough that it doesn’t consume me anymore? I’m not sure, but I do know that there are still times where it does frighten me, especially when I have a bad strength day.

Getting older for anyone brings on a whole host of new physical ‘problems’. I just happen to experience that a lot sooner than everyone else. There are days when I feel my disability more than others; my arms feel weaker, the lower back pain is more intense, and my legs feel heavier. Sometimes I feel like I should be in my 60s instead of in my early 20s. Feeling your body not at its best can easily send you down a path of murky thoughts of getting older and what that means and what that looks like. You feel mortal and suddenly very unsafe; the desire to be a complete homebody and wrap yourself up in bubble wrap is almost too tempting to ignore.

Those murky thoughts also make you question if there is any point in trying to achieve the things you want to accomplish because your disability may be getting worse, which then leads to you thinking that may no longer be here in another 40 or so years.

However, when I linger on that thought of 40 or so odd years, my mindset can’t help but flip on its axis. When I was diagnosed, my prognosis was 19. My current prognosis is much later (as long as my lungs hold up), thanks to better research and science, and just how my condition has played out so far. So why would I contemplate not trying to make new memories, go on new adventures, try different things, get married, start a family, enter the workforce, and leaving my mark on the world? Especially when you stop to remember that getting old happens to everyone; for some, it goes quicker than others.

But if there is one thing about contemplating aging and getting older, I have learnt: life is always happening for us and not to us; it is ours to explore and live the way we want to live it. Disabled or not, life is one giant maze full of twists and turns. And that includes getting older.

So as I approach my middle 20s, how do I really feel about aging? despite the fact that yes sometimes it does frighten me, I am more excited to get older because that means I get to travel, learn, grow, and experience more. My disability has given me a unique lens through which I view the world and view getting older. It simply means that I always strive to do new things and get as much out of life as possible because there is honestly nothing worse than having regrets and wishing you did the things you wanted to do, and didn’t because of that annoying unhelpful (at times) voice inside your head. I don’t know about you, but I don’t want any regrets. So for now, I will keep Living Abled my way because, at the moment, life is pretty good!

Till next week,


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