He's the best physician that knows the worthlessness of most medicines.
13.1 "....under pressure, bearing down on me...."
Weeks went by, we kept building patterns, Martin, who had replaced Caroline as my occupational therapist, concentrated on prompting the left arm recovery by asking that I slide a duster around a tabletop. It was a successful therapy if somewhat reminiscent of the education methods of Wackford Squeers, a schoolmaster in Charles Dickensí Nicholas Nickleby.In Squeersí academy the endless cleaning of windows was part of the curriculum. Brenda the recreation organiser worked on making me into her unofficial assistant and, being a former hairdresser, on trying to persuade me to let her cut my hair. All hairdressers love to be let loose on thick wiry hair but Bren had a thing about a George Clooney crop suiting me. And I didnít agree. Very short hair has always made me look ridiculously boyish but the strain of the illness had taken its toll on my features and when I finally did give in the result made me look like a debauched twelve - year - old.
Life went on, the novel was coming along well; I had read dozens of books, tried sketching but quickly became bored and shunned most approved activities. Entertaining all my three physioís I cooked Cajun chicken for Sarahís farewell lunch. It was all an effort to ignore the fact that my condition was still not good.
Even after four months on lots of medication, a low fat (well low food really) diet, no alcohol - not a medical requirement, just the way I felt - and no stress, my blood pressure was still high, not extremely dangerously high but definitely high enough to be a bit iffy. As well as a daily pharmacopoeia of anti - hypertensive drugs (perm any eight from ten) massive doses of Potassium supplements were going down my throat. This was puzzling for somebody whose diet had always included plenty of fruit, vegetables and juices but something in the blood test results was worrying the medical people because they insisted on the supplements and kept sending an armful of blood to the labs every week. The doctor on my case, Richard had often talked about lifestyle and diet. One day he came in and chatted for a while, then asked me directly if I was taking the potassium tablets as I should. We also talked about salt. he explained that my blood potassium level was consistently low in spite of the supplements and there was so much salt in my system I might have swallowed half of Siberia.
It was amazing news. Since childhood salt and salty food have been a pet hate and the advice of numerous government campaigns about avoiding heart disease had encouraged me to become almost paranoid, insisting on mimimal amounts in cooking, steering clear of processed foods and never using the salt cellar at the table. It is not a health thing, I just hate the salt OK? Yeuk, bleah, horrid! I do eat crisps after having a beer or two though.
Talking of salt stirred a memory. Some years earlier, during a visit to a GP he told me I was obese (judge for yourselves, this photo of me showing off my tan was taken around that time Ė it is included for serious medical research purposes and is in no way a cynical marketing ploy aimed at exploiting the "totty factor") drank too much (I never have - well, not really TOOO much) ate too much fat (didnít) must give up smoking immediately (he could not understand why I insisted that was impossible)(23) and should stop putting too much salt on my food. When told I did not put salt on my food he simply repeated the command, "Iím telling you, very seriously, you must stop putting salt on your food." Anybody who has read this far will be able to guess it was not the best approach to take.
"And Iím telling you to take your stethoscope and shove it where the sun donít shine." I stormed out of the surgery and never saw him again.
"Its interesting you should say that," Richard told me, after hearing this story and emptying another fifty gallons of my blood into a container bound for the lab. "You see, Iíve been thinking about your blood problem and vaguely remembered once reading about an endocrine(24) condition that causes this type of imbalance in the blood. Donít worry, itís not the big C, but I think you may have a benign tumour on you adrenal gland. Now it isnít malignant and it is treatable. Please donít worry." At least he did not say "Trust me Iím a doctor."
As Richard explained more of the condition, Connís Syndrome, to me I was just glad we were at least on the track of a possible cause. At last, a problem to solve. I felt a lot happier.
"Sounds about right for you," Jayne said later. "Canít have anything straightforward like gout can you."
"Iíve been reading up this Connís Syndrome," Diane told me the following morning. "The only cure for it is daily enemas." That word always strikes fear into any hospital patient.
She then started preparing me to go for a scan. The endocrinology consultant had agreed with Richardís opinion but needed confirmation of the condition before he could start treatment.
Kathy was kind in a backhanded sort of way. "Youíre just too good a patient to have an ordinary problem. This will take ages to sort out, but we can keep you here ítil youíre cured if you promise to keep cooking and making us laugh."
"My cooking makes you laugh? Thanks."
"Youíre so sharp youíll cut yourself one day."
Sharp? Unfortunately it was all bravado. Despite the reassurances I was scared of what the scan might find and spent a few nervous days awaiting the results. The relief was indescribable when the consultant said the adrenal glands were enlarged but there was no tumour and I would not need an operation. (The thought of being cut open really turned my stomach, I must be the worldís most squeamish person. Kathy once told me I might have made a good nurse when I was trying to convince her that nursing requires special skills - like low self-esteem, a perverse attraction to other peopleís body fluids and being so dedicated they donít need to be paid. She was way off track. Show me a bedpan and Iíd run a mile, even if it had not been used. Apart from that I have a long - standing grudge against the profession. The only woman ever to stand me up was a nurse. A man remembers things like that.
13.2 "....and I say to myself...."
Adrenal glands, I now know, look like nasty little fat worms and sit on the kidneys secreting stuff and doing other absolutely vile but very necessary things. When any part of the body is worked constantly it gets bigger and stronger. Anybody who has tried body building will be aware of what exercise does to muscles. Anybody who has been a heavy drinker will know what breaking down all that alcohol does to a liver. Years of stress, overwork and possibly other things had given me adrenal glands the size of pythons that pumped hormones faster than a gusher pumps crude oil. Overproduction of one of these hormones, Aldosterone, was causing me to hold onto salt like a Pit Bull holds onto a postmanís leg while getting rid of Potassium like an NHS trust wastes money (sorry, that was a really bad attack of metaphors, itís one of my symptoms.)
The consultant said the condition was easily controlled by a the drug Spironolactone. There were some side effects with this treatment but the alternatives were not appealing.
The turnaround was magic. Within days the blood pressure readings were scraping into the acceptable range and I started to feel better, stronger and more energetic.
October had been well advanced when Richard made the first tentative diagnosis. By the end of November things were really moving in the right direction medically. Progress was rapid in other areas too. Daily walks were up to twenty or thirty yards now and possible three or four times each day. Sue worked on building "good" patterns in my nervous system (sheís a bit of an Anarchist like me so we got on well, talking about the revolution as we repeated small, simple movements.) and Martin whom I got on with because of his surreal sense of humour, had given up on trying to get me to take the prescribed Occupational Therapy exercises seriously was doing extra physio on my arm and shoulder. This was urgent because my determination to walk and regain a little mobility had led to neglect of the upper body, shoulder muscles were wasted (sub - something or othered the physios said) and my shoulder flopped around like a dishcloth on a flagpole. Reduction of blood pressure meant that we could risk working a little harder of course so progress was accelerated.
My walk at that time was bizarre and more Long - John - Silverish than ever. Because I was favouring my right side and really only using the left leg as a prop Sue had introduced a therapy that involves using an overlong stick, the Bobath technique The theory is that making it difficult for the patient to put a lot of weight on the stick encourages proper use of the disabled limbs. WRONG! I balanced between left leg and stick because there was not enough in my left hip to hold me up. If it had shifted weight onto it as Sue was asking, my body would have fallen right through the joint. True, my walk was very bad, when Sarah put me through those first steps I had not been ready and that was still the case but mentally it was more important to be progressing. Policy however dictated that the staff could not help me achieve an adapted walk. It had to be perfect or nothing. I doubt whether any of us ever walk perfectly. Many times I tried to explain to Sue why the Bobath technique could not possibly work for very good mechanical reasons. It is typical of the Health Service that policy dictates more value must be placed on the opinion of some academic pratt who had read a book about recovering from a stroke than on the evidence of people who have recovered or are living the life.
(Most people involved in the Stroke Survivors charity "Different Strokes" have been told at some time "you will not recover much" and senior hospital staff can never admit they were wrong so we must all be deluding ourselves. When I reminded a doctor he had said a year before "you have reached the full extent of you recovery now and will not improve any more" he responded " well you were probably not as bad as we originally thought." )
Using the technique was very unsafe and after a few steps I was in danger of falling but quickly learned to hoist up the right shoulder and push enough weight down through the that arm to get me around safely. Unfortunately, over the space of a year the muscle structure became distorted and I would hit a wall at about a hundred yards, making myself sore and virtually immobile again. But as with any problem it just needed thinking through.
13.3 "....heffalumps and woozles.Ö"
Every month patients were asked to attend a meeting to review their progress. The purpose was to provide a forum at which we could discuss treatment and raise any concerns and issues. The reality was that Diane as my Primary Nurse and the therapists reported on progress, I would be asked for my views and then the consultant would tell me what I really thought. If the objective was to involve patients in the management of their treatment these meetings were a waste of time. If, as I suspect however, the point was to let certain people feel important they were probably very effective. At the end of November hospital life was really getting to me and my only contribution was to suggest discharge at Christmas would be a good idea.
Some people thought differently.
It was blood pressure time later that day. Kathy came in and caught me watching a Winnie the Pooh cartoon. I did not actually watch childrenís programmes(24), using TV as electric wallpaper when reading or typing on the computer but on that day I was actually watching Pooh. It was a story that had been a favourite of my children. Tigger and Roo had left their picnic hamper on the ground while they climbed a tree, but they were stuck. When Pooh and Piglet came along they could not think of a rescue plan until they had eaten all the sandwiches. Blood Pressure was forgotten as the Senior Sister sat on the bed and started watching. " Pooh was my favourite when I was little," she said.
"Yeah, mine too. Got any sandwiches?"
We watched the tale unfold and suddenly Kathy said to me "You remind me of Winnie the Pooh."
"What? A bear of little brain. Well Iím small and cuddly."
"No, Pooh is a very intelligent bear actually. He sees a problem and does what needs to be done to solve it. Iíve noticed you are like that. If other people have a problem they make a big thing of it, get other people involved, everyone starts generating paperwork, there have to be meetings and committees and in the end nothing gets done because everybody forgets what they set out to do. You just get things sorted."
"Yeah, and tread on about three million toes in the process."
It struck me Kathy could have been talking about herself. "We should get married," I said.
"Donít you think our partners may object."
"Not if we leave it to the next life. Just start believing in reincarnation. If you come back a few inches shorter Iíll try to be a bit taller."
"OK, Iíll meet you at five feet nine."
"Itís a date."
That was the start of a charm offensive and illustrates the kind of relationship I had built with most of the nurses and therapists. The banter, the humour, innuendo and letís be honest, the sexual frisson with some of the staff helped to build a creative atmosphere that promoted my recovery. Health organisations can suffer from a surfeit of egoís and an acute shortage of professionalism. (Some people think professionalism means following rules. WRONG. Professionalism means doing what is necessary to achieve a goal and changing the rules afterwards if necessary, adapting to each otherís idiosyncrasies and working as a team and supporting each other. A team without a shared sense of humour is a collection of individuals. Iíve always been a motivator and though I was not particularly trying to build my own team in Rehab the response to me was putting noses out of joint among the "control - freak" faction of management. Though the rehab staff wanted to keep me around a while longer I knew it was time to think about going.
13.4 " ....they are waiting for me when I feel that I just canít go on...."
Next day it was Sueís turn. She took me outside the building to a ramp made for physiotherapy use and asked me to get out of the wheelchair and walk up the slope, turn round and return. We did that three times then returned to my room, ostensibly to work on the shoulder. Really what happened was a brainwashing session.
"You have done brilliantly Ian and we are so near to getting you walking really well. Just give us another month Iím sure we will make progress." (I canít quite remember but she might have added "Trust me Iím a physiotherapist.")
Jayne, who was leaving to take up an appointment nearer home (travelling forty miles a day on nurses salary is no joke,) told me that in all her time in rehab I was her star patient, she knew it was difficult being in care for a long time and could I not please give it a little longer, after all it was a month of my life against many years of near to full mobility. I have always liked a bet.
Next Diane tried, telling me that having progressed so much in so short a time I would be silly to let the opportunity to do more slip by.
After that Cathy joined Sue for a special physiotherapy session and they talked of how much I had recovered, at the time of my arrival most people had thought there was little chance of a great improvement but the staff were impressed with my humour and bravery........
What a load of flannel.
I was adamant it was time to leave. All the staff had been brilliant but none understood how much the of recovery at that stage was front. In refusing to give in to disability I had simply refused to behave as somebody with serious problems. In not thinking about how bad the problems were I had prevented them from becoming bad. The decision to request discharge was prompted by a feeling that it was the right time to face the real world. One can appear to do well in hospital but it is an artificial environment. After arguing my case I thought I had won the team round when Sue said she would arrange for a home visit and recommend a few adaptations to the house. I was wrong.
One day, shortly before the assessment meeting was due, Sue, Kathy, Diane and Jayne ganged up on me. It was only a few days before Jayne was due to leave and so can be classed as emotional blackmail. Sue flattered, Jayne cajoled, Diane used her impish humour and the cute smile that showed her dimples and Kathy, well Kathy had used Red Kryptonite to give me strength but her eyes must have contained Green Kryptonite because by this time I went weak at the knees whenever she looked at me. Resistance was futile and I agreed to return after Christmas for an extra month.
13.5 " ....this old heart of mine ...."
The new drug regime had worked wonders but that gave us a few new problems to deal with. While full of salt my blood had been quite thick (Iím guessing now) and the necessity of having to pump something with the consistency of Tomato Ketchup around arteries narrowed by stress caused my heart to beat quickly, in the eighties or nineties perhaps. One of the drugs, a beta blocker, had helped by slowing me down. Doctors claim that the speed of the pulse has little effect on blood pressure. Nonsense. When the speed of any mechanical pump is increased the pressure of liquid in pipes attached to it goes up. As the most famous engineer in the universe once said "ye cannae change the laws of physics Jim." (This is an oversimplification but Iíll be happy to explain to any doctor who wants to contact me why beta blockers are ineffective in my case, The drug is still prescribed though so I take the tablets faithfully - that sentence was supplied by the Pigs Might Fly department)(25) Once the chemical balance was restored the blood regained a quite watery texture. With a much easier task to perform my heart muscle was over - regulated and dropped the pulse to around thirty beats per minute, way too slow. To remedy this I was taken off the beta blocker. Having been restrained for so long the whatever - controls - your - heartrate started to behave like a border collie let off the lead. Up went my pulse, fifty, seventy, ninety and on to a hundred and twenty and rising, taking my blood pressure up with it. It was worrying. Perhaps the last thing I would ever hear was going to be a guy with three darts in his hand shouting ONE HUNDRED AND EIGHTY. I was panicking, hoping for one of the cool calm professionals to explain that there was nothing at all to worry about. They were panicking too.
The full dose of the drug was restored and my pulse rate plummeted. Within twenty four hours it had gone from 120 to 40ish. That was a bit slow for comfort, apparently (I think) if a heart is beating slowly it can forget what it is doing. I suppose they think "hey, whatís going on? Over a second and no request for a contraction. Must be break time, I should think so too after forty nine years without even stopping for a brew. Thatís it, Iím off to lunch!" And kaput! Well it probably isnít quite like that, but you wouldnít want me to get a doctor in to explain would you? They just start using big words that donít mean anything.
The slowdown was no worry to me at that point but had everybody else in more of a flap than the speed up had. There was even talk of not allowing me home that weekend. The experts wanted to see my pulse pick up or a least level off.
"Rubbish," I said. "My heart will be fine. If you opened me up and took a look it would have VOLVO embossed on it. It will still be going long after the rest of me has packed in." Nobody was convinced. Actually I wasnít either but we had a Christmas shopping trip planned. Departure time drew near and I was still gradually slowing down but my guardian angel, though busy with other things herself rescued me for the umpteenth time.
A very pretty agency nurse called Angie came into my room. "Kathy says the ambulance will be here in a few minutes," she announced, "so Iíll just have one last check on this pulse and if its showing any signs of picking up weíll ask the doctor to let you go home." Then standing behind me and leaning forward so that a rather unangelic part of her anatomy pressed against my shoulder she reached over to take hold of my wrist. I was on a big dose of the beta blocker but my heart managed to respond a little.
"It worked then," said Kathy as I made my way to the waiting vehicle.
"Just about, but that was straight out of the dirty tricks section in the nursesí handbook. Course if you had done it my pulse would have been about two hundred."
"Yes but then you would have had another stroke and spent the weekend in intensive care, now bugger off before you ruin my reputation completely. Oh, and just take half a tablet over the weekend and weíll sort it on Monday," she said, "but donít tell anybody I said that."
13.6 " ....got my eyes, got my nose...."
The weekend passed without any mishaps and the following week led us up to the Christmas break. Its probably a good time for a review. From the top then, there did not seem to be any problems in my head, if it was missing the bit of brain that died, nobody seemed to have noticed. Perhaps it had been the bit that was supposed to understand Pythagorasí theorem. Most of my left fingers were moving although I could not grip much. The arm would lift a few inches away from my side but waved around involuntarily as there was no control from the shoulder where the muscles had really wasted, leaving a really weird, bony, floppy, useless lump. Despite losing weight on hospital food (I would have been skeletal but for the snacks Teri brought) my waist had actually spread. One of those lucky people who has managed to retain good muscle tone into middle age without having to exercise constantly, I always kept a firm, if not exactly flat stomach. Now on the left side, with feeling and ability to scrunch my six pack gone the whole thing was saggy. It was odd, the other side was still quite firm through having to work extra hard to hold me up. What I had was possibly a three pack?
Walking was still difficult, being a process that involves many muscles working together. The problem was only about a quarter of them were talking to my brain and none were talking to each other. Sarah had talked of using my hamstrings instead of "gloots." Sue now started to tell me I was using hamstrings instead of quads. Hooray for hamstrings I say. The "quads" are muscles at the front of the knee that make the leg lift. As far as I can see it ought to be impossible for hamstrings to contribute to this movement so I guess my foot was lifting back and I gained the forward swing by twisting my body with the right side. Sue knew this as well, but also knew I needed to be moving around on my back legs rather than wheels. All the physios who worked with me warned that the chosen course would involve a lot of pain when feeling started to return. If what I was experiencing at that stage was not a lot of pain the future was to be dreaded. Some people might say that it takes bravery to travel such a road to its end. Perhaps it is bravery, perhaps stupidity, certainly in my case bloody - mindedness. Having realised recovery was there to be had I would pursue it to exhaustion.
Mentally the initial problems had dispersed. While not being able to think of disability for life I had accepted it as a temporary condition and though never discussing the possibility of anything less than a full recovery had made myself understand it was something that one day I might have to face up to.
13.7 "....and the bells were ringing out...."
We had a Christmas party on the last day. Snogging under the mistletoe was on the agenda and I found some of the nurses were far more fond of me than I imagined. Diane was not in, Jayne had been copiously kissed when she left and Kathy - she sensibly kept out of the way. The unit had a polaroid camera; we could have found ourselves on the front of the Currant Bun. (Actually we exchanged a chaste peck on the cheek.) It seemed from comments made that my enthusiasm had infected a few other patients as well as the staff. Not all of them had great prospects of recovery but as Iíve said its about making the most of what you have, nobody is giving marks.
At the beginning I said that there is no set of tools for recovery. I lied. The only tool we need is our own mind. Admit defeat and progress will be slow and small. Approach your recovery with passion, whether you think an almost compete reinstatement of your former powers is possible or will be content just to be able fill you time constructively and get something out of life, commit yourself to getting where you want to be. In the recovery process we have an opportunity that few of people truly experience throughout their adult lives. We may feel imprisoned by our disabilities or by the prejudice and ignorance of the world but actually we are free to define the parameters of our own lives, to reinvent ourselves. Any freedom is not without hazard and it is necessary to be sure we are reinvented as somebody we can live with. Some changes of attitude may be necessary of course. Few pastimes lend themselves so well to physical disability as writing, but not everybody wants to write. Men may have to make most compromises though. Passive occupations are often considered "girlie" but can be very therapeutic and rewarding, ( you wonít catch me doing embroidery though.) do not dismiss any options. Education offers limitless possibilities, the Prime Minister has spoken of "learning for life" but we do not have to be restricted to academic learning. Break the rules. Learn for yourself, for the satisfaction it gives, for the friendships it makes possible, for the conversational opportunities it opens up. Computers are great; play games, learn to write programs, master a flight simulator. Canít get round the golf course. There are a dozen brilliant simulations so a twenty four handicapper can play the championship courses. If you have access to a PC with a scanner put your family photo album on disk. You can edit out that miserable old Uncle who used to give you two tangerines and a few nuts at Christmas. Think about what you can do, not what you canít. Come ON! Get off your butt. I WANT YOU TO GET BETTER AND SO DO ALL THE PEOPLE WHO HELPED ME PUBLISH THIS BOOK!
If a little passion and commitment has rubbed off as you read this, that is the biggest gift I can give you, Christmas or anytime.