12.1 " .....if I only had a brain...".

After Sarah’s return from vacation she was not with the unit for long, having been reassigned to a nearby children’s unit. (OK, who said working with me must have been good practice? Own up, I heard you!) In her last week we concentrated on consolidating the work she had done and spent a lot of time discussing my condition.

The main problem stopping me from walking and the one Cathy’s treatment had not been able to resolve was that due to the shortening of muscles my left foot turned inwards sharply from the ankle which made it difficult to get the sole down on the flat floor. As a consequence my body tightened and confidence ebbed. Lack of confidence made me even more tense. Increased tension tightened the muscles more and worsened the effect. This was Catch 222222. If anybody had been able to say then how long it would be and how much pain I would go through before that problem began to be resolved my determination to overcome it may have collapsed. Sarah managed to convey this without indicating any timescale however. Then we talked about arm and shoulder recovery.

The discussion was very helpful because the more I understood about the problems the better equipped I felt to deal with them. As always with Sarah though, the conversations could get a bit off the wall.

"It’s only in the last few years we have started to get any in depth understanding of the way the brain recovers," she told me and went on to talk of how systems are duplicated so that when an area of tissue is damaged its backup module can kick in. Sometimes this can be almost instant, sometimes it can take years. The subject became quite complex as I learned how, through repetition the nerve pathways between the brain and central nervous system are reconstructed.

"We used to think there was little hope of recovery for patients with Brain Damage but amazing things happen inside people’s heads(21) and science is only just starting to understand them," she said, telling me of the case of a woman born with one side of the brain undeveloped. Nobody knew and the woman functioned perfectly normally until in mid life she had a stroke. There were no backup systems to kick in and when doctors tried to find out why all function had been lost through an illness that should have affected one side they discovered the truth. "We now know there are quite a few people who go through life with only half a brain," the physio said.

"In the business world we’ve always known that, they’re called accountants," I announced sagely, "In fact there are even more people go through life with no brain at all. If you want proof just go into town around eleven on Saturday night." It was giggles time again.

In one of my final sessions with Sarah during which I had been given a really good working over, foot, leg, abdominals and shoulder, she was playing around with my upper arm where there had been no feeling or reaction at all. "Ohh," she went, "ohh that’s exciting." Now women have said things like that to me before but not while squeezing my biceps. "I’d like to do that again, it didn’t hurt did it?"

"gggggNoeeagh." I said, teeth clenched and lips compressed into a thin line. She did it, whatever it was, again.

"Oh Ian, that’s brilliant." It hadn’t felt brilliant, "There are flashes, definitely." This time I had jogging pants on.

"What do you mean, flashes."

"It’s tiny reactions in your muscles and it shows you’re going to get it all back. OOH YES, brilliant." Probably because Sarah understood the significance of what was happening better she was more exited than I could manage to be.

"What’s all? One arm pull ups? Handling tiny things?"

"There will probably always be a weakness down your left side, the younger you are the better the chance of recovery, but I think you’ll walk quite well with a stick or crutch and there will be some use in your left arm and hand. It will take time though, some people are still improving after five, six or seven years. You’ve done brilliantly though and you’re no chicken are you? Cheek! I had been thirty nine for ten years and intended to stay that age a bit longer.

When Sarah left Cathy was only my physio for a week. Other comings and goings among patients and staff had unbalanced the workloads of therapists and I was assigned to Sue’s casebook. Sarah’s goal had been to get me standing and through the milestone of the first few steps, in the process topping up my self belief. Cathy had filled in excellently but did not have time to develop her work with me and now it fell to another attractive female to continue reprogramming me. I could have worked just as well with the male staff but three fit bits was definitely a bonus.

It would not be helpful to digress into my puerile fantasies about physiotherapists now though.

*

12.2 " ....sun shone softly through my window today..."



Sue used to spend a lot of time telling me "the central nervous system likes repetition" and explaining the functions of neurones, synapses and stuff as we worked to rebuild the brain patterns that sent out movement instructions. It was good advice and has worked well but there are newer, more radical approaches in physiotherapy and I was learning of them from the Internet. Superman actor Christopher Reeve, paralysed from the neck down in a riding accident, has spoken of muscle memories when lecturing on his recovery. Without going into too much technical detail and getting it wrong, I think from my own experience that despite what experts may say there is a lot in this theory. As has been said before, there is no point in waiting for somebody to come along with a magic wand. We have to take responsibility for our own recovery. It is a slow, difficult and often painful process and only the person on the sharp end can set the pace. At various stages people with many different skills will be involved. You are the only constant element in the team. Whether you keep a detailed diary or trust memory and sketchy notes as I did, you must make sure all the people you work with are given as much background information as possible. You will need to be your own Project Manager. (Any NHS manager thinking of sending me a snottogram(22) about my attitude to the service should remember that in reply I will be asking why there is no central database to make sure every healthcare service provider has access to complete and current information. And don’t even think of telling me the NHS is too big to do that because I’ll put your ego through the shredder.)

Back to Superman.

In Christopher Reeve’s case, as far as I understand it, the main nerves in the spinal cord were severed and contact lost between his brain and all the muscles in his body and limbs. Experts' opinion was that such damage is irreversible but with help from progressive therapists who carried out ground breaking work with him some movement has been regained. Reeve attributes this to what he has called "muscle memories," the body’s remembering what to do without much help from the brain. Think back to people with no brain. It seems there are actually some people in whom the brain organ does not develop. They often get by very well and the problem is usually only discovered by accident. What are they thinking with? What is driving their movements? Perhaps when Christopher talks of muscle memories, what actually happens is that the muscles know what to do in response to a message from the brain. Maybe the racial memories (not as in European, Asian etc. but Human race - the kind of genetic memories that enable a kitten to know how to be a cat or a baby to know how to crawl.) are distributed throughout our bodies. In my experience what has happened in the time since those conversations with Sarah is that in forcing muscles to move I awaken them. After a long period of being dormant they then return very quickly (overnight sometimes) to the shape they should be, remember what they are supposed to do, hurt like hell for a few days then settle down. The movement is not perfect at first but the intention is good and muscles only seem to come back one at a time, often not in the expected order. It is a long process however because we seem to have far more muscles than we think. If that process was controllable life would have been a lot more simple. As it was something would always decide to wake up at the wrong time.

When things were coming back quickly it led to tiredness. I suppose this is logical because there is a lot of energy being used. It also seemed to make me very hungry.

*

12.3 " ....feed me, feed me...."

Even in the adapted kitchen of the unit, cooking was difficult and exhausting. Despite that and encouraged by the success of my first effort I was soon ready to try again. It was the only way to get a decent lunch.

"How would you like to have lunch sometime darling?" I asked Kathy in my best ageing roué voice.

"You are going to get me talked about." she protested, giving in after being reminded that, as Oscar Wilde said, "There is only one thing worse than being talked about and that is not being talked about." We had a date.

"Not lost your charm then." Teri remarked when I asked her to get ingredients. "Isn’t she a bit tall for you?"

"That’s the beauty of being in a wheelchair." I replied. "my short legs aren’t noticeable."

Caroline and I decided as it was only my second effort at serious cooking with one hand I should stick to something simple, pork and shallots with tagliatelli and an Italian style sauce. Caroline, who would be supervising the session and did not think that sounded simple at all suggested an early start as some of the tasks would be quite difficult. Preparations started at 11:00 for a 12:30 lunch. The Occupational Therapist was right. Even though we had chosen a menu that avoided a lot of fiddly jobs time was still very tight but eventually we were cooking. As the smell of garlic, onions, oregano and basil simmering in the tomato sauce and pork frying with garlic, ginger and chilli in olive oil permeated the corridors, gangs of hungry nurses started to hang around like Bisto Kids (nurses are always hungry!) and had to be given a taste of the food and chased away. It was probably very unfair to other patients who were lunching on more usual hospital fare but hey, come on: it’s not my fault that life’s a bitch.

Kathy amazed me when she said that it was the first time a man had ever cooked anything for her, I thought everybody’s Dad used to get up on Sunday and make a full fry - up, bacon egg sausage, tomato, mushrooms etc. Both mine and Teri’s had. Anyway my guest enjoyed the meal and we did get talked about (it was just envy).

That was the first of a few cooking adventures. After doing meals for other nurses on my care team, the physios and occupational therapists, the projects got bigger. With Brenda as a confederate, we catered for all the patients. Our greatest triumph was making a huge Apple Strudel for Steph, a single woman who suffered impaired vision as well as mobility problems and had been feeling very down about being discharged to a nursing home. Naturally we found a way to beat the alcohol ban and soak the raisins in brandy.

The final effort on the night before my eventual departure was a traditional northern potato pie supper. I wanted to go out with a bang. (No, no. I didn’t mean.... The trouble with you lot is you have all watched too many Carry On films.)

The management response to such wild adventures in recreational therapy was curmudgeonly as anticipated. "The manager says your cooking is too expensive, we have a limited budget for these things." I was told one day.

"Go back and tell the manager she knows damn well I pay for everything used and ask for no more resource than would be needed to make sodding Raspberry Buns, now if she has anything further to say ask her to please be gracious enough to come out and discuss it with me herself," the message bearer was told. To have to be like that with an innocent party was unfair and embarrassing for us both but if NHS managers are skilled at anything it is hiding behind their undeserved titles.

Lots of people suffer memory loss to some extent after brain trauma and the attitude to adventurous cooking was surprising. Smell is after all said to be the sense of memory so reminding somebody of a holiday abroad or a celebratory meal could not have done any harm could it?

*

Next Chapter