I did a lot of reading about strokes since one landed uninvited on my doorstep.
My daughter T gave me a book for that first Christmas following my stroke: Stroke Survivor, A Personal Guide to Recovery, by Andy McCann, and there’s a tone in it that everything is wonderful. Oh, there are tough times, Andy says, but he barely mentions any.
(I stopped reading about halfway through for fear the additional sugar overload would affect my diabetes)
There is no writing about the destruction of ego when what has always been with you departs; no frustration as you try to re-grip the old reality; try to get some purchase on trying to grab the phantom that is your old way of life; no writing of the emptiness of soul as you contemplate life without speech and limited mobility. You cannot see a tunnel, much less a light at the end it.
No, everything is hunky-dory with “positive thinking” the way Andy sees stroke survival.
And because he’s a Chuck Norris kind of man – martial arts and all that.
Because he survived and made a business of survival by saying positive things to people for large sums of money.
Maybe that’s the way The Stroke Association sees things – in its own sphere around which its version of the world revolves, the centre of which is The Stroke Association. Sure there are inspirational stories, but you’ve got take the bad times with the good. It’s called objectivity. And, objectively, I can say there more bad times than good in the city of Stroke-ville.
Then, in reply to my outraged emails I got a shovel-full of “apologies” and “unreserved apologies at any distress it may have caused me.” There was even an invitation to contact their media person to see how I might contribute. I thought I had explained that. There’s even a comment to this blog saying they apologise for ignoring me and try contacting their new editor (she’s “keen to hear from you” – that’s why they gave me a generic email rather her personal account).
I certainly didn’t expect to get involved in a dispute with The Stroke Association when I had a stroke. I thought they would be on my side. Now they’ve “apologised“.
Still, I can’t forget the line: “As you have not used our services and due to the demand, I regret we are not able to take your request further.”
I remember Kate Allatt, who came back from Locked-in Syndrome, re-telling of her feelings of total worthlessness, worthiness, helplessness, indignity, her complete reliance on family members and the guilt that consequently created, fear, the nightmares, the torments, the insomnia, the leg cramps and insufficient turning in her bed, the frustration… She could go on.
And so could I.
In fact, fellow stroke blogger Mindpop said it best:
“Mindpop has made me famous. This past weekend, I was invited to Salt Lake City to speak for the Utah Stroke Symposium, thanks to a Mindpop reader.
I told the doctor and therapist audience to be encouraging to their patients. I haven’t always had encouraging care. Watch out, heartless medical staff, your patients are speaking.”
Watch out too charities. Those affected have a voice.