After about a month or so, The Stroke Association returned my email. Joanna filled me in.
Zoe, the editor of the newsletter had left her job and they just realised I was trying to get in touch (I also sent email copies to info and mediateam which should have been picked up). But, what really made me angry; what was enough to send Ghandi to anger management was Joanna’s wording:
“Unfortunately, not everyone can become a media volunteer because of the sheer volume people. As you have not used our services and due to the demand, I regret we are not able to take your request further.”
Well that told me.
But I didn’t ask to be ‘a media volunteer.’ I was asked by one of their employees at the time, at a Stroke Association meeting, to suggest stories for the quarterly newsletter. I composed my email making a cogent, professional pitch that took me over an hour for typing and editing because of stroke-induced limitations.
Without knowing anything about me and what I have to offer, (reading my emails would have given them a clue which included among other things 45 years in journalism and public relations, EMMY™ award for television writing, professional photographer), I’m thrown on the local volunteer’s heap and told not to bother the ‘professionals’.
Well, I resent their unprofessional tone.
I got the names of the ‘professionals’, figured out their emails addresses, and sent them an obscenity-free (but strongly and emotional worded) email telling them that. I included some quotations from the National Aphasia Association bill of rights (it’s an American group, but the effects of stroke are global) explaining how I felt; that because my “difficulty communicating, people with aphasia may experience great isolation and frustration in their daily lives.”
Then I added The Stroke Association promise: “will help thousands of people affected by stroke to rebuild their lives… improve the quality of life of those who become disabled.” It’s on their website.
One other thing. As part of its service, The Stroke Association offers grants to help people get on with their lives. I had applied for a grant to get re-tested for driving, which involved Amoret and I meeting with a local woman and divulging all our financial shortcomings and was told she’d let us know the outcome in a couple of weeks. That was three months ago.
I’ve noticed there’s a pattern here with The Stroke Association – they ignore you.
That’s when I decided to write a blog. The inside story of what a stroke is really like. None of this sugar-coated stuff. Sure, I was glad to be alive, but it is frustrating what you have put up with.
“Writing is really cathartic. You have all this stuff rattling around in your brain and you need to put those thoughts down on paper, or the computer. Then you share them with the world and a community comments and says, ‘I’ve been thinking about that too’. Your thoughts create this larger audience of conversations.”