Welcome to the city of Stroke-ville – where more times are bad than good

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’veapologised“.

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.


5 responses to “Welcome to the city of Stroke-ville – where more times are bad than good

  1. Excellent post… If anybody is writing or talking about a stroke, s/he is subject to a level of rigorous scrutiny not unlike combat diaries. Any honest reader finds real diaries as diverse as the people who tell them. Indeed, stories told to do anything other than tell the truth will stink with inauthenticity. The truth may be agonizing, humorous, surprising, illuminating, or as inaccessible to a man born blind to color. Such truth can be many things, or one severely inexplicable thing. What is real will nonetheless be redolent with reality. No stroke of any severity can easily be described by a few nouns or qualified by a few adjectives. The story line of one’s stroke intermittently changes course, fizzles out, accelerates with anguish, confuses and even mesmerizes one as perception shifts, loses oneself as time sense is muddled, illuminates heretofore undiscovered insights, endures spasticity and/or non-recognition of one’s limbs, and every bit as quickly, loses thoughts and memories, falls in and out of smiles and tears, and, in general, wreaks havoc with one’s mind and body. One may as well perform a play in the dark.

  2. I can’t talk about the Stroke Association but in the USA the National Stroke Association and American Stroke Association are only for medical persons. The WSO – World Stroke Organization has no use for survivors. A completely new organization needs to be created, run by and for survivors. Its the only way to get something done.

  3. I’m a Stroke Survivor from Salford NW England, Stroke capital of the region! 19 months ago my world was turned upside down, never been ill, never been in hospital. The Stroke Association were there for me whilst in hospital (6 weeks) and ever since. Funded primarily through the NHS and Local Government, they are at the mercy of “bean counters” who care little for need. So if they struggle to reach all Stroke Survivors, it’s not for the want of trying. If more educated people than I, used their writing talents to inform the politicians rather than slag off the very people that are trying to make a difference. Then their experience might just be a more positive one.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s