Forgotten Stroke Survivors

Do you ever feel forgotten? I know I did on many occasions, and still do. After I had my stroke, many people seemed to pull away, I was too needy and too much trouble for them to bother with anymore, or so it seemed.

In my workplace, there were some accommodations made the year I returned to work and especially in the early days, but after that I was just expected to do what everyone else was doing and not complain or try to get an adjustment. It was like I was invisible. Like the stroke had never happened or affected my life. I still limped, I was slow with everything from walking to marking papers. I remember one day in my second year back being handed a duty-roster for the school athletics carnival where I had been placed on all-day year 9 and 10 year group supervision. I approached the sport coordinator (who I had worked with for years) and asked for a different job, one where I did not have to be on my feet all day, where I wasn't in the middle of a noisy oval with 300 screaming year 9 and 10 students. I was told no. The reason? Well, there are people who've had cancer and they can't be expected to be out there with the students. In tears I had to go to the new assistant principal and explain the whole story, from my stroke to the lack of accommodation or empathy. The first thing she said? "People recover from cancer. There's no one on staff currently who has cancer or who've indicated that they need special consideration because they've had cancer. A brain injury never goes away." She was right. There was some fast back-tracking and rearranging of the roster on the part of the sport coordinator. But no apology.

I think people forget you have a disability. They can't see your fatigue. The way loud and busy places make you tired and anxious. The way that parts of your body ache, or don't work the way they used to. It's invisible.

Last week I was approached by the Stroke Foundation to do an interview with the Western Weekender. I don't like big-noting myself (being shy around people) and I hate having my photo taken. But I was done being meek and mild, I can speak out when others can't. And so I agreed. A friend of mine sent me a photo of the interview:

And in my next blog, I'll tell you what this has led to... stay tuned!