I had a major stroke on the 6th of September 2007. I was 35 and living in Japan. In a second, my life changed forever. I lost almost all function in the left side of my body along with my ability to speak. After 5½ tortuous months of rehab in a Japanese hospital I learnt to walk again after a fashion and regained my speech. My arm and hand are still pretty much ornamental. So with my "strokeaversary" coming up, what have I learnt in my decade as a young(ish) stroke survivor? It seems close to impossible to sum up 10 years in 800 words but, let's take a deep breath and give it a try -
1: I'm way stronger than I thought
I'm so much tougher and more resilient than I ever imagined. After a stroke your whole life changes totally. It's a profoundly strange, debilitating experience but I dragged myself through. You're grieving for the life you lost but at the same time you've got to find a way to live the new one you've been given. You've got to try to build something beautiful in the rubble. There's no closure. What I'm not is: "brave". "Brave" is a fire-fighter at Grenfell Tower. I just had some stupid bad luck and then didn't give up.
2: Everything takes way longer than it should
Physical improvements, decisions from the DWP, hospital appointments, waiting lists for adapted flats, emotional recovery. Everything seems to take forever. Even a decade after the stroke I'm still learning, growing and changing. Things move glacially. The trick is not to stop completely.
3: I've found new ways to judge myself
I lost a wife, a job and a life I loved in a foreign country. My body betrayed me. I had to go back and live with my folks again, which is not a great look in your late 30's. Quite enough stuff to decimate your self-esteem. And it did. But gradually I found ways to respect myself again. I studied and wrote a book. Volunteered supporting adult learners. Campaigned for things I care about. I made some new friends and got fit again. I hope I'm a better friend than I was 10 years ago. My life is very different from nearly everyone I know but I think I'm making a pretty decent fist of it.
4: People are kind
Unfortunately, that kindness often shows itself in clumsy, patronising or infantilising ways. Some people really don't know how to act around disabilities. I can't blame them. I certainly didn't until I started spending every day with one. Pro tip: Don't help me unless I ask. I worked so hard to regain my independence. Don't steal it from me again. A special shout out to the guy who bravely leapt into the traffic and held it up so I could safely cross the road. The road right outside my flat that I cross by myself several times day...
Be like kids. Kids don't care. They'll ask you anything. I love it when random kids ask me supposedly inappropriate questions in the street."Have you got a poorly in your leg?", asked one the other day. Mum looked mortified but there's no point ignoring the big, hobbly elephant in the room. We had a nice, little chat and hopefully a barrier was broken down before it was built.
5: Don't be scared to ask for help
For all that big talk in the last paragraph, I do need a lot of help and it's sometimes hard to ask for it, however graciously you know it'll be given. People like helping and it's humbling to think about how much I've received from so many people - the NHS, my family and friends, Headway - the brain injury association, my PA, Enrych and my counsellor just for a start. People help because they care about you and because you're important. They don't care that you face-planted getting on the bus that morning or you only have £14.73 in your bank account.
I live in a world I could never have imagined before I moved here. Often in the first few years, I couldn't see any way to make it habitable but, so, so slowly the sun came up. So far, it's been wonderful, terrifying, life-affirming, exhausting and funny. And it's only just begun.
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