“Why don’t you talk normal?”

My grandson Arthur asked me today, “Why don’t you talk normal?”

I didn’t take as a personal affront because he’s only four. So I explained to him that I’d had a brain attack and so I couldn’t speak properly. He asked: “Does it hurt?”

I answered no.

But then I got thinking about it and yes, Arthur, it does hurt.

Not being able to communicate effectively does hurt – psychologically.

It hurts trying to find the words when you need them. I swear I would struggle trying to find the words HELP if I was under duress.

It hurts trying to find the words to tell someone about emotions I’m experiencing.

It hurts having to search for words. My brain allows only one at time to come out – kind of like a parking lot barrier, keeping words inside until each has been paid for emotionally.

But to answer your next question Arthur, and there is always a next question  –

No, I don’t need a plaster for it.

(also at http://redoable.co.uk)

What’s another word for synonym?

I have confessed before to being a crossword addict.

It started when I was young, watching my father do them, asking the reasoning behind an answer. Later, I did it because I thought it would help me become a writer/author/reporter. I figure if you’re going into a war with words you need all the ammunition you can get, or that’s what told myself.

Truth be told, I enjoyed the mental exercise.

The crosswords I do are simple – find a synonym for a word  – none of those cryptic crosswords like: ‘Marie Curie birthmark. Second born in a litter of otters.’

No, mine are simple synonyms like: strong taste = tang; bode= augur;  offensive = odious. If I don’t get the word right away, chances are some other letters in the crossword will make it clear. It helped when I was writing to come up with the right word.

Then, I was visited by the stroke. And the resulting aphasia, a new word for me.  It means that the ease with which I could command words was frozen in my brain, or least the compartment where words were kept was locked and did not have the key, nor the password, nor even a clue how to free/extricate/disentangle it.

These days there are all kinds of electronic programmes/apps/courses, mostly involving a £300 plus iPad, which help you rescue/resuscitate/ your lost speech. For less than a pound (the cost of a daily paper), I offer a less electronically solution. My speech therapist, Catherine, started me by suggesting finding synonyms out loud.  I immediately thought of crosswords.

If you say the clue and the answer aloud it helps with your diction, and the penmanship helps with residual effects of paralysis, so you get a course of rehab.

Where else can you get a one-stop solution?

And don’t say: I’ve got an app for that.

Aphasia

After month of induced aphasia awareness (as ordered by the US Congress) I’m convinced I am never going to be cured of aphasia.  It leaves me feeling like this Eric Johanssen photo.

thank you facefistcopyright-2011-erik-johansson-all-rights-reserved.jpg

Aphasia: Not with a mouse, not with a fox

June being the month for all people to be aware of the condition known as aphasia (as ordered by the US Congress) I find that I’m getting worse, not better.

I wrote earlier about being exposed to the term asphasia (The Chronicles of Aphasia – How I discovered aphasia when all I had was trouble speaking because of a stroke).

Frankly it’s a big job touting the world for people to understand the term and the condition that has so many variables. The best example is the mantra that aphasia is a loss of language, not a loss of intellect.

I keep telling myself that, yet day by day, I can feel what little communications I have slipping away. I find it harder and harder to pronounce words – to ‘mouth’ words – get my tongue around them and get them out. I used to have problems thinking of the words, but that’s better. Given time I can find the words I need.

I have had three years of practice to build on the fried brain residue, to practice getting better, only to find it’s getting worse. Once again, the experts lied when they said I would improve my speech by putting in the hours of rehab. And yet “scientists” say the brain re-wires itself given time and exercise. Mine, apparently, hasn’t caught up with science.

But still I haven’t given up. Recently I had my grandson Arthur to stay overnight and I found that he was entertained by my reading Green Eggs and Ham, by Dr Seuss.

I remember reading the story to my daughter Katie (long ago, Before Stroke) and she loved it when I went fast, increasing the frustration and mild anger through the words to the ever-present question posed by Sam-I-Am:

I do not like them in a box.
I do not like them with a fox
I do not like them in a house
I do not like them with a mouse
I do not like them here or there.
I do not like them anywhere.
I do not like green eggs and ham.
I do not like them, Sam-I-am.

(And I maintain that I’ve not lost my intellect.)

I sailed through the words, Post Stroke. In fact I was so enamoured by my voice during the chorus, I got louder and louder (I was really getting into the method acting), that Amoret shushed me from the patio lest the neighbours the other side of the brick wall think we were arguing.

The neighbours, Mr and Mrs Homo Neanderthalensis, never let on that I would not have it with mouse or a fox, nor Amoret’s strange recipes.

Truthfully, I was knocked back by the admonition.

I was really feeling the power of my voice. For the first time I felt free of the tyranny of aphasia.

Thinking about that reading again, it wasn’t that the pronunciation was all that clear (I have aphasia remember), but the timbre, pitch (psychoacoustics) and cadence gave me freedom to wildly express myself much the same as Brian Blessed.

And Arthur was impressed.

I plan to read more Seuss, aloud, much the same way I did when began this rehabilitation. I hope to get that feeling of freedom of communication back – and who cares what the neighbours think.

Frozen in mid-word – how the cold weather works against you when you have aphasia

 

We’re getting the last blast of winter on the second day of spring. Snow storms, high winds and sub-zero temperatures, which isn’t good for my aphasia.

How does the weather affect your ability to speak? Frozen lips, that’s how.

Since my stroke almost three years ago destroyed a part of my brain, the communication part, leaving me similar to sounding as if I’m trying to talk with a mouthful of porridge while being strangled. Call it aphasia – everybody with a scientific mind does.

To talk, I find that I have to get my lips around the beginning sound of a word, completing one word, and the next one until I have a sentence. That’s normal for me with this aphasia gagging me. It’s even more frustrating because sometimes I have to stop to search my vocabulary for the right word, but then I find that I fall back on a synonym because it’s easier.

Inside my brain there’s a mis-connection

Well this kind of weather means my lips get frozen which makes it harder to find even the beginning of a word.

The reason I come out in this blizzard? Me and the dogs.

Amoret, some of dogs, and me (photographer)

I have to take my dogs on a daily walk – me too, to stay in shape. It’s rehabilitation.

Since when does reality speak a foreign language?

Since having a stroke 2 ½ years ago I find I am constantly reminding myself of reality.

You know, the real reality, not just what you think it is.

Take the other day: I turned on the TV to catch up on the news, and what my brain-damaged mind heard was pure gobbeldy-gook. I could not make sense of what they were saying, things like: Penawdau newyddion a’r tywydd.

I wondered whether I was having another stroke.

But the real reality was I had mis-dialled the number on the remote and came up with S4C Welsh television.

Not long after that, I saw this from the BBC:
“Stroke sees Englishman wake up speaking Welsh – An 81-year-old man from Somerset who had a stroke woke up speaking Welsh”

Not everyone understands this reality of strokes.

Read about this picture at: http://www.ancient-hebrew.org/19_gonewrong.html

Redoable – 2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 9,200 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 15 years to get that many views.

Click here to see the complete report.

Now I can explain in words what this thing in my brain does. They call it aphasia.

If you’ve ever wondered  what it’s  like to live with aphasia, I’ve found the words that explain it best to me. And it’s compiled by just stacking six books. Stan Carey, at Sentence First, you are a wonder.

Forest of symbols

The forest of symbols,
The eye beguiled:
Tree of smoke

Through the language glass,
Everything you know
Lost in translation.

That’s worth keeping in my never-ending jar of unforgettables.

And to think Mrs Doubtfire tried to correct my aphasia

Self-doubt creeps in

I saw this during the week and I forgot to write down where it came from. I’m sorry, I’m using it without attribution, but it perfectly illustrates my mind at this point in time. Comment to me and the glory is yours for such an image!

“No thought has much meaning until it is written or spoken” – Harry Reasoner, CBS & ABC News anchorman

Reasoner was one of my writing heroes (along with Charles Kuralt). Harry and I had a glass of wine or two together in the basement in the building of where ABC News was broadcast from New York City in the early 70’s. He wasn’t as erudite at this meeting as I remember; he was supposed to be talking me into working for ABC News. But this quote from some stage of his long career rang true: I could think all I wanted about this Stroke Association project that I had created in my mind, but until I wrote something it wouldn’t have real meaning. ‘Spoken for meaning’ was not an option due to the stroke erasing my brain-to-tongue function. I think they call it aphasia.

Which brings us to the situation at hand: still no word from The Stroke Association about them using my extensive media career to its advantage.

One research project is now out suggesting there is a good chance people who have had strokes also have resulting depression. “Researchers defined depression as among other things: loss of interest and pleasure in doing things; feelings of sadness, helplessness and hopelessness…”

Well, I have the interest, but I’m feeling helpless at not getting the attention of The Stroke Association and that is leading to hopelessness.

This is really getting me down.

Maybe I am past my sell-by date, over-the-hill, or, dare I mention it, disabled by the stroke.

I re-sent the emails. As Del Boy said: “You know it makes sense.”

At last a way back – I could help The Stroke Association with this creativity creeping back in my blood

Courtesy: New York Public Library

Now I felt I was ready. I could conjure up words, mostly. Occasionally I got stuck on remembering the odd word, or spelling, but this is when my crosswords habit came into play – I could think of a synonym for the lost word. My speech therapy resulted in me finally be able to write. I felt the creativity back in my blood. Welcome back. Put me in coach, I’m ready to play.

Now my client was The Stroke Association. The editor of the Stroke magazine Zoe Beer came to a local Stroke Association meeting and asked what we’d like to see in the pages. I’m sure she didn’t expect it but I would give her the full treatment, falling back on my reporter/photographer days, and public relations days and work up a whole media campaign.

It’s what I felt I needed after the stroke swept the foundation from my life. It would give me a purpose. It would give me a way back. I still could not speak properly, but I could write.

I thought what I could do. I cold interviews and write them up albeit slowly. I could take photographs (I wasn’t using my high-spec wedding photographers kit, another casualty of the stroke)

I thought that the celebrity factor would help them out. As much as I hate the whole celebrity culture (do we really care that Cheryl Cole visits poor people in Africa while the BBC films it for Comic Relief/Children In Need? She goes back to her 10-star hotel every night and puts up her 8 inch Jimmy Choos Safari Boots™) but they have a way of getting people’s attention; getting people to listen.

More than that some celebrities have had a stroke

 – the character Jim Branning in EastEnders (Dot’s husband) had a stroke in real life and it was made a part of the story.

The author, Jilly Cooper has done interviews about her TIA.

The singer Jesse J had a stroke at 18.

Now I’m from the old school. My initial thought is celebrities are not experts, so why would you ask them anything than the facile dross they are adept at, performance, luxury lifestlyes and fashion. But research shows they reach audiences. There’s this article by Weh Yeoh arguing for non-disabled people to front campaigns because they reach people.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead.

“We want to change the world, but we rarely talk about how best to do it. Courtesy of a recent study cited in New Scientist, here is one way in which we can better advocate for equal rights in disability – have more non-disabled people as the face of disability advocacy. This might come as a surprise to you and may even provoke reactions of defensiveness. How on earth could I be suggesting that it should be non-disabled people, rather than people with disabilities, as the visible advocates for equal rights? Primarily, it is because research suggests that it is the messenger who is crucial in creating change, perhaps even more so than the message itself. ” Full article

So I drafted an email to Zoe telling her what I thought I could do. Just to be safe I copied in the all-purpose address at The Stroke Association and sat back and waited.

I had some ideas that I thought could help.

Put me in coach.