by Stephen Taylor
Stephen Taylor is 44, had two strokes in 2014 and 2015, and has decided to leave it at that. He spent years as a carer for disabled people, as an acrobat and as a hanger on in the music industry. He is now retired on grounds of ill behaviour.
You’re bombarded with kind and useful information when you get home after a stroke. It would take weeks just to digest half of it. What follows are the five pieces of advice I would have given myself, if I didn’t know that it was completely futile.
It’s going to be OK. A different sort of OK. Your brain is an amazing, if slightly squished thing, and every stroke professional you talk to will give you a different answer as to how long an adult brain takes to recover, as well as how long it keeps on readjusting to make life in your new world easier (look up neuroplasticity, it’s fascinating, and I can’t do it justice). After getting on for three years I still make sure to notice and acknowledge the (smaller these days) improvements as they happen. I was told by a wonderful occupational health assessor that all my recovery would take place in six months, then that was it. Truly inspirational. Another, whose husband was five years post-stroke told me they were still noticing improvements every day. You are a unique, special, and ever so slightly melty snowflake.
Say yes to every bit of help.
Things you never expected to need are, all of a sudden, hugely important to you. Don’t need a physio? Who’s to say you weren’t always a bit wonky? That psychologist you don’t need might have a billion tips on being less of a grumpy screw-up. Besides which, what else would you be doing? From personal experience, I know that daytime television repeats itself after about 6 months, so every episode of Homes Under The Hammer you don’t watch is a present to you future self (in more ways than one). As I write this, new stroke patients have just 12 weeks of community therapy. I wish I’d made better use of mine.
You know all those preachy health campaigns, urging you to give up smoking, pies and laziness. Yeah, do that. There’s nothing scarier that a stroke, and nothing more humbling than a second. Do everything you can to avoid it.
Dignity might have to wait.
Before things get better, as they most assuredly might, they’re going to get icky. It’s amazing when stroke survivors tell each other stories just how many finish with “…and of course by then I’d shat myself” or very similar. When I was in hospital during my first stroke my trousers fell down, Grampa Simpson style, in front of a group of terribly prim looking Asian women. I was, at the time, trying to exude an aura of friendliness and normality, which I now realise might have appeared a TINY bit terrifyingly grotesque. They didn’t stone me or reach for pitchforks, and neither will anyone else. These things will pass leaving you with nothing a knot in your gut, and hopefully some good war stories to share.
Keep your friends close, and flick the Vs to your enemies.
This stuff is as scary for everyone else as it is for you. Family will cope, colleagues will cope, life’s way too short for anyone without your best interests at heart, but your friends tend to be people your own age, and people with a very fixed idea of who you have. Their own mythology is likely to be bound up with yours. Epic nights out, adventures, gambles, weddings, funerals. Milestones. And now here you stand (lean), an example of their own generation and an actual shambling horror to boot. If your friend is poorly remember – It’s not just you. Everyone feels the fear and horror – mourning for the loss of their friend as they knew them, as well as facing up to their own mortality. At the same time remember – It’s not just you! Lesser friends than you will run in the face of adversity, of freeze, unsure how to readjust to the new normal. Don’t be one of them.