Recrudescence – to become raw again


(Please follow me at the new and improved site  http://redoable.co.uk)

 

I haven’t on the blog for awhile because I’ve been on holiday.

Well, if you count 365 plus days of time off as holidays.

Relaxing on remote beach

Truth is, I’ve been lazy.

Every day some topic would enter my mind and I’ve thought: that would make a good blog. Then it would exit my mind just as quickly, like some stray leaves blowing about in the wind and I did not rake them up and deliver them to you.

 

Then this week, there came fluttering into my inbox a personal message from Anu Garg, [wsmith@wordsmith.org] my personal word guru. He said unto me: Recrudescence.

 

And he did not just it leave it for me to look up. No, he explained that it was from Latin recrudescere (to become raw again), from re- (again) + crudescere (to get worse), from crudus (raw).

 

And this wasn’t one those trendy ‘new’ words entering the English language that suddenly is uber cool to use. Nor is it known to Russell Brand to obfuscate you with. No, Abu went on to explain the earliest documented use of recrudescence was in 1665 the year before the Great Fire in London.

 

The word recrudescence is a noun, meaning a renewed activity after period of dormancy.

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What I think Abu was saying is: get off your ass and start writing again, in the nicest way possible way of course.

 

That is what I am doing.

 

I should mention that the effects of my stroke haven’t gone away in the past year. I still can’t talk properly (that’s called aphasia for the new kids on block), still weak on the right side (Left partial anterior circulation stroke – May 2010. It means that the right side of my body was affected ­­­ – I veer to the right when walking. My mouth doesn’t work properly on the right side, my right arm doesn’t have the strength it used to, I can’t lift my right leg far enough to get my trousers on. All this and I still exercise the dogs every day.

And typing. Whereas I used to be able to bang out a 5,000 word story in about  45 minutes, it now takes me 90 minutes to get this far in blogging. And that I’m sure is part of reason I put off blogging, because I felt  ‘re-doable’ wasn’t working for me. All those health professionals at the time of my stroke were saying if you work at rehabilitation you can get your life back – it’s another lie.

To quote Kevin the Teenager: It’s not fair.

But to quote Oscar Brown Jr:

Ooo shhhhiiiii ooow ooow ooow
What? Oh what are you gonna do with me?
Ooo wow uh
But I was cool

https://www.youtube.com/watch?v=dheVr7Wdrro

 

Since when does reality speak a foreign language?


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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.

Guess who had a stroke


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A funny thing happened today – Thursday, 10 January 2013 – BBC’s Andrew Marr had a stroke.

Not funny ha-ha, but strange funny because the news of that stroke set the whole stroke network into a frenzy of action.

Twitter was a-tweat with the news.

The Stroke Association came up with a statement:

The BBC broadcaster Andrew Marr, who presents Radio 4’s Start the Week and the Andrew Marr Show on BBC1 has had a stroke. He was taken ill on Tuesday 9 January and is now in hospital and doctors say he is responding well to treatment.

Joe Korner, Director of Communications at the Stroke Association says;

“We are deeply saddened to hear about Andrew Marr’s stroke and our thoughts are with him and his family at this hard time. Around 150,000 people have a stroke every year in the UK and around a quarter of these are in people of working age. A stroke happens in an instant but the effects can often last a lifetime. However with the right care and support it is possible to make a recovery and return to a life after stroke. If anyone is worried or concerned about stroke please call the stroke Helpline on 0303 3033 100.”

But I was impressed with Kate Allatt’s response. She started Fighting Strokes – Young & Locked in Syndrome charity and blogs on the subject.

With Kate Allat, a stroke survivor, she has news you can use, not statistics.

–          #ANDREWMARR LISTEN TO THE WHOLE STROKE DEBATE ON VANESSA FELTS 10/01/2013 at 22 mins onwards…

 –          Saving #AndrewMarr – My top 8 stroke recovery tips.. 

And the same with Joan Scott (Previously:Teen Agony Aunt for AOLUK. Community Manager and Internet Safety Advisor) who has a daughter who had a stroke and recently had a stroke herself. She, too, offered down to earth stuff in fact she appeared to have the news first – EXCLUSIVE, as the newspapers put it: 

– It’s funny how people make jokes about strokes, but never about cancer. Well, not funny really but you know what I mean.

– I keep telling people I’m a survivor. I refuse to be a victim. It’s taken away enough without that!

– I wonder if Andrew Marr is on the geriatric ward, like 18 year old Sarah was. Not a nice experience, even though we love the #NHS

Me? I offered this:

All of a sudden the morning news is filled with news about stroke. Oh. It’s because we recognise who it got.

Other charities, “celebrities” and just plain people chimed in with support and wishes as Twitter became a fence post for people leave their tributes and wishes for a speedy recovery.

All the emotional effort went in Andrew Marr’s corner, although there was another stroke story on the wires. I tweeted about a BBC death –

“Waiting for another statement on stroke. Nothing about this BBC man, Alasdair Milne and his stroke.”

And there was a stroke-related story about drinking four cups of tea helping to slash the risk of stroke.

Save for one death,  it was a good day for stroke news.

I’ll put the kettle on.

Be careful what you say around the children


My 4-year-old grandson Baxter, with whom I’ve shared many a deep conversation on life, has asked his Nana:

“What’s the matter with Granddad.”

As he learns more about the complexities of language, he finally noticed something was wrong with my stroke-addled speech. And so the last bastion of normal conversation with Baxter, for me at least, had ended.

The effect of a stroke now had one more victim, and then future conversations between us will be tainted with his knowledge that I don’t speak properly.

I have one recourse for continuing unbridled conversation – my other grandson, Arthur, is almost two, and is just forming his first sentences.

He needs someone to talk to.

And so do I.

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Connected reading:

The Chronicles of Aphasia (How I discovered aphasia when all I had was trouble speaking because of a stroke)


Aphasia apologies to: Erik Johansson All rights reserved Copyright 2011

It was several months after my stroke before I first heard the term “aphasia,” and I rejected it as a science-speak for “I have trouble speaking because I’ve had a stroke.” Other people too find it a £10 word when a simple “penny” explanation is needed.

In my previous incarnation as a journalist/PR, you learn to say it simple so that you can communicate with the most people. The card I was given by The Stroke Association to show people why I speak funny,

I would add a line: My speech is faulty, not the intellectual capacity

(see, they did do something for me!) in fact doesn’t even mention aphasia. You aren’t going to educate the entire population by teaching them the scientific name for your affliction – most people don’t say: I’ve got singultus when they mean hiccups; don’t say carcinoma for cancer; myocardial infarction for heart attack.

I can’t remember the first time I heard “aphasia” – probably it was thrown into conversations (one-way) by some doctor explaining what I had, and it was immediately thrown out by my mind as a £10 word. It didn’t mean anything to me. I first referred to it as sounding like a character from a CS Lewis novel The Chronicles of Narnia.

Then I met Catherine, my speech therapist, and I don’t remember her bringing the word to my distorted conversations.

The first time aphasia reared its ugly head was in a meeting several of us stroke survivors were invited to by a regional health authority who wanted our input to their new and improved Stroke Handbook for people who just had a stroke and their carers. I gave them the best advice I could – stay away from using aphasia on first reference, and call it what it really is.

Speaking in my drawn-out, crossword fuelled vocabulary, but brain damaged way, I took too long. I remember being extremely agitated the rest of the meeting trying to say more and not being able to get a word in edge wise. But then you would expect them to know that. Even the Stroke Association card I carry says: “I find it difficult to speak and your patience would be appreciated.”

I wasn’t fighting learning a new word – I’ve spent most of my life collecting them as a writer. I was standing up for clarity and communication – aphasia doesn’t convey what’s happened to your mind and speech (unless you’re in a room full of doctors, and how many times can that happen).

Let’s look at the word aphasia. It comes from the Greek for “not speak,” a + phanis, or aphatos, speechless, and means “inability (or impaired ability) to understand or produce speech, as a result of brain damage.” (Oxford English Dictionary)

Aphasia is a difficulty in understanding and using spoken or written language. It is, if effect, an absence of language. While it is more serious than dysphasia the two terms are often used interchangeably. Aphasia is not a disease but a symptom of brain damage. What kind of brain damage? Let us count the ways.

Broca’s aphasia is effortful, distorted speech and difficulty forming grammatical sentences, but relatively normal comprehension and it’s the kind I have.

Then, there’s Wernicke’s aphasia where the person is fluent and well-articulated but it all comes out as meaningless speech with poor comprehension.

Agnosia is the ability to recognise objects using the senses even though the senses remain undamaged. The term is derived from the Greek meaning ‘lack of knowledge’.

Agraphia is the inability to write properly.

Alexia is an acquired impairment in the ability to comprehend written words. The disorder is often quite specific in that sufferers do not have impairment of vision and can identify spoken words normally.

Anomia is the inability to name objects

Aphemia is the loss of the power of speaking, while retaining the power of writing.

Aphonia is the inability to naturally produce speech sounds that require the use of the larynx that is not due to a lesion in the central nervous system.

Apoplexy is a sudden loss of consciousness resulting when the rupture or occlusion of a blood vessel leads to oxygen lack in the brain. It is generally used interchangeably with terms stroke, cerebrovascular accident and brain attack.

Apraxia (or dyspraxia) is a motor planning disability It is the inability to do complex tasks when requested even though there is no paralysis of the muscles. It may affect almost any voluntary movements, including those for proper eye gaze, walking, speaking or writing.

Perseveration: continued repetition of a word or phrase. I sometimes have this as well.

Anomic – difficulty naming objects. I sometimes have this too.

I could go on through the Greek dictionary, listing every known -xia. No wonder I call a stroke a designer disease – it’s bespoke, made just for you. It just depends on which way the blood doesn’t flow.

Aphasia is a loss of language, not intellect, which is why I’m more accepting of the word aphasia.

But still I tell people I’ve just met: “I have trouble speaking because I’ve had a stroke.”

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.

“Strange how some charities find it hard to let service users in.”


It still just sticks in my mind like a bad dream, or toffee that gets stuck in your fillings.

“Unfortunately, not everyone can become a media volunteer because of the sheer volume people.”

All I asked for was a chance to contribute my talents to The Stroke Association – free! I wasn’t asking for pay or commission. I was just glad that my brain was functioning again (almost) although my hands were not. I wanted to contribute to the organisation that was set up to make people aware of strokes. Possibly I could contribute. If only they would talk to me.

Yet she said: “As you have not used our services.” But I had, and paid £2 for the service, and the editor came to us to ask what should be in their magazine.

She added: “due to the demand, I regret we are not able to take your request further.” Did she even read my email? Well, better yet, did she understand it?

She added: “Unfortunately, not everyone can become a media volunteer because of the sheer volume people.”

I didn’t ask to be a volunteer. I wanted to contribute.

Jo, a speech therapist who follows me, recognises something in my writing. She wrote: “Reading these blogs is the closest you can get to understanding aphasia from the inside.”

A former work colleague, Jane, who follows my writing said: “Strange how some charities find it hard to let service users in.”

Then, I found this unattributed quote:

“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”

Now I’ve got find a 150 watt bulb.