THOUGHTS WHILE WATCHING THE GOOD DOCTOR SEASON ONE

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I know of a family who’s daughter bounced out of a coma after massive brain trauma.

She will do somethings a little different now and other things way better then those around her; and to her parents I say not all is lost and much is gained too.

The Good Doctor is a television series about a gifted young surgeon in a hospital who also happens to be autistic. While the surgeon in The Good Doctor is a surgeon way above par, he battles to cope with social skills, obsesses about things and gets visibly upset because the handy man in the building where he lives fixes something that was not on his “to fix list”.

I cheer, laugh out loud and cry while watching The Good Doctor. The producers of the show have captured realities of post brain injury life. The presence of being a bit weird to others, not always having the word you really wanted and knowing that my left hand likes to do the funky without telling me first. On the other hand being so focused and perceptive now that I feel that my photography is enhanced and that the pictures I now take are some of the best and better then before I had my stroke in 2012.

I don’t want other’s pity, I am comfortable in my skin now as I now know the new me and am leaving that somewhat arrogant person in the past; there is no reversing option after coming around after a stroke in a hospital bed. There is no going back after brain injury, you have got what you have now got, like wetting my hospital bed ’cause my muscle control had to be still relearned. With time you realise that you have got more then first realised too. Rather then your pity I always like a bit of space when my brain is ‘rebooting’; often you won’t even realise that I am in pause mode as it only takes about 20 seconds and I am a master at masking when it happens in public.

While in that hospital bed I talked with a doctor doing her rounds “ma’am, people are supposed to die from strokes”. The doctor just said “yes”. A stroke is devastating. As devastating as it has been, my stroke has also proved to me a life changing event too. I live consciously now, every day, each day, I smell, see things as never before and I am stronger in mind and body then ever before.

I am shit awful at religion and in that class I am bad Johnny at the back, but I sense a greater being, I so believe. I believe in a God that let his son die a public death in Palestine and loves me more then any parent loves their child. Belief is different to religion, it’s not like a brittle dead stick, it has flex and it is so strong.

I really like my whole self now with all the quirks and yes my favourite colour is magenta. A friend who knew me pre stroke said that I seem different “you are more tender now, I recognise you as John but you have changed”. My CT scan report includes the following; “A large wedge shaped hypo density involving the grey and white matter is noted in the right frontal region with involvement of the insular region and the right basal ganglia… in keeping with right chronic MCA territory infarct”. I am not medically trained and I do not know what my right frontal region does or does not do now, but I do know about living in my body post stroke. I find other words when the ‘right’ word is not there anymore. Day to day I have slight fine motor skill loss in my left hand, a very slight weakness in my left lower leg and foot. I find that eating with my right hand is easier, riding a bicycle is better then walking long distances and living as though each day is a gift as I could have been already dead as the lady doctor said.

I would not like to back track anymore if it were even possible, I am now accepting of my self and I am a lot more accepting of others too. Though I cope much better when in a congruent situation be that my home office or on a bicycle rush hour traffic and I am so much more perceptive now.

I would not wish a stroke on anyone, but my brain injury has come to me as a bit of a gift in disguise and life is short enough as it is to not take hold of what is. – John Robinson

 

ONE CHALK LINE AT A TIME…

It’s a part of my existence, only having in-the-ball-park words to work with, having to get used to the idea that the fear of stress makes fluid conversation only a partly achievable goal, when once they just rolled off my tongue.

It’s like “I wouldn’t think you had a stroke”; What are we supposed to look like after one? I know what I look like after months of swimming, skipping and push ups… I know that I like my body more now then before. I don’t think a doctor will give me a grant based on the slight drag in my left leg, my core is solid, and my arms and legs are worked without being bulky as that of a body builder and now I don’t have a flabby bum. I wear a size 34/32 inch pair of old Levi 501s now; I once wore a 38/32 generous cut of the same. I don’t use my stick when walking around Durban anymore too.

It’s like “He didn’t get out of bed in the morning.” And it was the faeries who did the laundry for six and cooking and cleaning for the same… Yes I do go into neutral sometimes, it’s worse when I have to corral too many butterflies at any one time. I also have to pace myself more now then I did before that morning in the darkroom while at university when everything changed. When I am in neutral it’s my brain working through a detour. A stroke just damages a part of the brain; it then works out another way through like a track through the bush alongside what was once a flowing highway, this can take time, I don’t stay in neutral for long, it’s just long enough to get sorted out again. Yes I do get very tired but after a nap of about a hour I am normally good!

I don’t have a full time job, so I am doing 3 pro Deo murals for a local church in south Durban and it’s been a long and slow process. Starting with the scale sketches which have to be in end-colour and approved by the client, the boards have to be whitened in preparation for a yellow chalk grid that aids the outlines for the mural it’s self… I procrastinate with my e mails before carrying on with the job at hand, it seems just to much for me… But one chalk line is finished at a time; and with some lunch in me I get all the chalk work done. I was just in neutral, I was tired, but I now know the signs and know that I can still push through though maybe a bit slower at times then before but now with much more eye to detail which is also a slide over from the stroke too. Oops, there is another in-the-ball-park word that works quite well too…

 

COMING UP FOR BREATH

I pull my body through the sharp bright winter’s water,  I count down today’s 40 circuits of the swimming pool. As I come up for breath, I think over all the ‘already has beens’ and paranoid thought that float around in my head. My almost daily swims in the cold winter water have been as much a time for intense thought as it is for strengthening a post stroke body, I guess I can’t change what people may or may not think.

I can live my life as best as I can on a daily basis, I can get up again when ever I fail and I know that truth always comes out in the end. I am a little brain by design, God is my creator, he has the big brain, he knows all things by his own design; because of my perspective I cannot see all things all the time.

As I swim the pool, the water’s cold horizon dips and sways, my eyes sting from the same and I battle to know if I have done 38 or 39 circuits. I know that I am pushing through, one day at a time, through the stinging blur I come up to the edge of the pool; I have another 40 circuits to my credit with many more to come.

 

 

I AM NOW STATINLESS FOR SURE…

I went ‘cold turkey’ on my statins, I have given statins the boot for ever.

In one sentence, statins are a group of drugs used for cholesterol control, I have been on a daily dose of 20 mg statins since my stroke in 2012 till about 6 weeks ago.

I went for a Cranio Sacral session with Felicity Fernandes RCST she got me reading up about the side effects of statins that I was on at the time. It seems to me that these are ‘bad for me’ drugs; while on statins I am anxious, cannot focus on the task at hand, when in a crisis I can not remember what I had said or did just the day before, I was also confused at times.  The added gastric problems and aches and pain were the least of my troubles, I have to declare too though that while on statins my cholesterol levels did come down to more acceptable levels.

My cholesterol levels are down to around 5.3, my homeopath Dr Bryan Long is now happy with the decision that I took on my own. Dr Long has put me on some ‘alternative’ cholesterol control measures, tissue salts, cardio aspirins and the like and we will review my situation as time goes by.

I feel more alive now then any time since when I emerged from Northdale Hospital into what I believe became a 3 year statin induced stupor. Satins should only be prescribed when dietary measures have not worked.

Off statins I feel more clear headed, I am a lot less anxious, can now remember those events from the day before, I dream again and I can remember them in the morning too, I am coping better in confrontations too.

I don’t want a life walking around in a stupor, I would rather be dead. I am hopeful regarding Dr Long’s control measures, plus passing through the bright white light via a stroke would not that bad to go in the end…

I have always been a little off the edge and I guess I will now always be.

LOUIS – MY AREA, JOHANNESBURG BIENNALE 1995

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Louis, at the time was nine years old, he has Spinal Muscular Atrophy. A debilitating disease which causes progressive degeneration of the muscles.

6 photographs and 6 captions;

• Louis lives with his mother and sister at their home in Johannesburg, South Africa.

• Louis’ sister stands and models her new underclothes while he is confined to his wheelchair.

• Children with a variety of disabilaties play together at Hope School.

• Louis is nine years old, he has Spinal Muscular Atrophy.

• Louis looks on as a friend jumps off a wall at Hope School in Johannesburg, South Africa.

• A disabled child walks with the aid of crutches down the passages of Hope School a school for the disabled.