New Disability Horizons writer Wolf, who is from New Zealand, is about to embark on a four-month-long adventure as he travels to a number of cities across the world, including Madrid, Sicily, Berlin and New York. But before we hear about his travel triumphs and woes – of which there are always many when you’re disabled – he tells us about his life and becoming disabled after a stroke.
The years before my stroke seem quite distant now. Sure, they were a big part of my life. But nowadays they are just a memory. A pleasant memory!
I grew up in a refugee camp and council housing area, climbing the social ladder as I grew. I became a copywriter, then creative director of an international advertising agency. I also did a stint working in Los Angeles, California before finally setting up my own direct marketing agency in Auckland, New Zealand.
All this came to an abrupt end when I had a stroke in 1990. It was caused by a brain haemorrhage, where a blood vessel in my brain developed an aneurysm, causing a weak spot to balloon. This burst and blood seeped into my brain and skull.
Because it was situated near my brainstem, the doctors ruled an operation out as too dangerous – it could have caused massive nerve damage and paralysis.
But I was excluded from this decision-making process as I was in a coma for 10 days. Once out of the coma, I was unable to speak or move. This is called locked-in-syndrome, a condition where the only muscle that works in the entire body is the eyelid.
In total, I spent four and a half months in hospital. I was moved around – from the clinical care unit to the intensive care unit, then to a single room and finally to an eight-bed ward.
I had a tracheotomy and every test under the sun, including a daily visit from my ‘personal vampire’, as I called the nurse who took my blood in order to determine the Heparin levels for my many injections to stop any more blood clots from forming.
Naturally, I was relieved when I got out off there.
Recovering from the stroke
After getting back home, I thought it was only a matter of time before I resumed my old life. That’s how it works, right? You have something wrong with you, you go to hospital, they fix you, and when you get out, you’re good to go. At least, that’s what I thought. How wrong I was.
Even now, 28 years later, there are quite a few things that aren’t quite right, no matter how hard I tried to correct them as I recovered.
The most visible effect of my stroke is the wheelchair, which I use because I have no, or only very little balance. I also have weakness on just one side of my body (called hemiparesis), sensation issues, and fatigue.
Apart from those, there are too many other annoying leftover issues to list here. You can learn more about the effects of a stroke by watching a talk I did for nursing students.
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