Frustrated Writer

(Image by geralt from Pixabay)

This is a rather self-indulgent blog. So, bear with me and hopefully, my story might echo your experience. If not, then please tell me and I’ll try to do better next time. I’ve recently been diagnosed with a syndrome called Multiple System Atrophy (MSA) a close family member to Parkinson’s disease. It’s taken about five years to get a definitive diagnosis.

A diagnosis is a two-edged sword. On the one hand it accounts for a number of things – mostly bike crashes. I’ve lost count of the number of times I’ve been riding on a warm, clear, dry day one minute. The next finding myself sprawled on the ground while my companions pick me up and make jokes about drunken cyclists. My last major fall was two years ago when I crashed on my bike and broke both my ankles. Thankfully I was riding with a friend. Dialling 999 got me the worrying message that an ambulance would come to my aid. In about three hours! Thankfully my wife was at home with a car and between us we got to A&E before night. Had I been by myself, I wonder about the possible oncome.

I called a diagnosis “a double-edged sword”. So it is. Until that point, I could see my accidents as random events with the universe going about its business in its usual random way. Puzzling and painful but random. Once one gets a diagnosis, we’re in the realm of the known. With all the implications thereof. Duration. Prognosis. Outcomes and complications. The enemy now has a name – MSA

It took a long time and a diagnosis of MSA to explain how I could crash so badly as an experienced rider with a good bike. MSA attacks one’s balance. So, bang goes my career as tightrope walker. Or as a professional cyclist. (Neither of which was on the cards. But it’s nice to have a choice in things.) It also means that gardening is much more difficult since I can no longer balance on a fork or spade to turn the soil. (Any tips would be most welcome. I miss my garden.) Much the same goes for walking. I hobble around the house balancing on my walking stick. If I’m going to the shops, I use my trusty walker. That helps. As does my mobility scooter.

If the physical limitations are annoying, so too are the emotional ones. Anxiety and depression are common side effects. I burst into tears far too easily these days and expend a lot of energy on mood management. I have to consciously “pull myself together” lest a low mood dictate terms for the rest of the day. And that’s not fair on my longsuffering wife who is heroic.

Another attribute of MSA is how it shapes my perception of myself. It’s an emotional equivalent of “is my glass half full or half empty?” Am I chronically disabled or just mildly inconvenienced? One benefit is free parking anywhere. A nod towards my disability. And I get to ride my mobility scooter anywhere. On the pavements or in the shopping precinct. I find this a mixed benefit as increasing numbers of pedestrians do not look where they – or I – are going. Paying attention to their mobiles, not me! (I have learned how to shout “Behind You” in five major European languages. But still I’m ignored. My next step might well be a pair of shotguns mounted on my handlebars. Shooting blanks of course!)

So that’s my short story. A few hundred words about MSA. I’m aware of how many people are much more damaged than me and who face many more challenges than me. And life – for me at least, goes on. For which we give grateful thanks. And raise a glass to life.

L’Chaim, I salute you.