He marched them up to the top of the hill and he marched them down again
14.1 ....If you land upon your head then you'll be Slayed....
Almost three weeks at home over the Christmas holiday really made me feel good. At that time I was sleeping in a bed that had been brought downstairs so it was not a full return to normality but close enough. Although weekends at home had been going on for several months the fact of not having to return on Monday morning was really liberating. Getting through the final month while I was prepared for living at home would be no problem, the light at the end of the tunnel was real and not an express train rushing towards me.
The first home visit, with Sue, my physio, and Martin, the OT had been to assess what difficulties I would have. The big thing was to prepare for using stairs.
A second home visit took place during the first week of the New Year, we met a Community - based Occupational Therapist, Dorothy, who would be responsible for getting the recommended adaptations carried out. Built on a hillside our house had steps front and back, inside there was a modern staircase, quite long because the house was a large Edwardian terraced. All in all there were not too many problems. Dorothy made up a work order as Sue and Martin took me back to the slammer to be prepared for my release.
Physio had changed. They still put me through the mill every day but we were working on getting ready for life on the outside. Walking around the unit with its carpeted floors, wide, easily opening doors and strategically placed support rails was fine but the real world held fresh challenges, cracked paving stones, kerbs, uneven ground. And I was still quite wobbly. At first my sense of balance had gone into hiding. Gradually over the months it had returned to some extent. Sitting, it was possible to lean back, forward and to the side and right myself when close to the limit. Standing was different. Feedback from nerves in the left side to my brain were very limited and of poor signal quality. I simply did not know where my foot, knee or hip were. Balancing would have been easy had the machine known where to put weight. As it was I could not feel a thing and had to look down at my body and guess.
The left foot also was a problem. All efforts to loosen the muscles were unsuccessful, muscles are really awkward buggers with mind of their own. I asked about some kind of brace or splint to hold it but was told it was "policy" to let things return on their own. This meant because of the care needed to get that foot down safely I could never hope to walk well until something changed, spending three or four times as long as I should on my right leg caused all sorts of co-ordination problems. That was something to be dealt with in the future, for now we had to get up and down stairs.
The physiotherapy department had a dummy staircase, four steps up, four down. Sue placed me at the bottom and coached me through climbing the first four. No problem! Two steps took me across a platform to the top of my down flight. Just four steps looked very high and I did not stand very steadily at the best of times. The fourteen at home would be positively vertiginous (ooh! showing off again) We decided it would perhaps serve better in the short term if I learned to get down backwards.
Throughout the ensuing weeks I mounted and descended those steps many times, some days until my leg was ready to drop off. From going through so much pain I began to learn something that would be very important later.
14.2"....tell me what you want, what you really, really want...."
The bane of my life (and everybody elseís) during those last few weeks was a woman who was rather bewildered after a bang on the head. She told us all (many times) this was sustained in a fall. She had woken up in the early hours one morning and instead of counting sheep or picking her nose like any reasonable person would, she decided to get up in the dark and have a cigarette. She did not know how she fell. This lady, Iíll call her Ethel after a Soap Opera character, was a really nice person. An annoyingly, gratingly nice person, and she took a shine to me, deciding I needed bringing out of myself. One of her problems was short term memory loss so when she decided to wander into my room for a chat she would wander in every half hour and weíd have the same conversation. One evening Ethel had decided to tell me about her gynaecological problems tell me about her gynaecological problems tell me about her gynaecological problems. Eventually I took refuge in the nursesí office, chatting to the people on duty.
"What brings you here," staff nurse Alison asked, youíre usually glued to that computer in the evening."
"Tonight would be the same," I said "but if I hear about that bloody womanís internal plumbing once more Iíll scream." There was no need to say which woman.
"Listen," said the auxiliary Jean, a really earthy woman in her fifties who had a great sense of humour, "if sheís after a shag just tell her its staff first." Honestly, fancy saying that to a shy and sensitive person like me. I didnít know where to look.
At a distance Ethel was brilliant. On finding out Brenda was a hairdresser she insisted on a shampoo and set twice a week. By her third week in residence she even asked for a manicure, complaining on being refused that it was a pretty lousy sort of service Brenda provided. One night her husband was collecting her to go to a restaurant. At about four thirty she ambushed me and said" Heís not coming ítil eight and I havenít ordered tea. Do you think theyíll get me a sandwich because its a long time to wait?" A few minutes later her bleeper sounded to summon assistance and I heard her tell one of the male nurses to get her some sandwiches and a cup of tea.
"This is a medical unit Ethel," he said "we donít do room service."
One evening Ethel brought her sister and brother - in - law to see me. They were pleasant people but as confused as I was, especially when the one they were visiting wandered off to the conservatory, the only place where smoking was allowed, for a cigarette.
"This bang on the head has done a lot of harm," her sister confided, "but she's never had much contact with reality."
Ethel decided to discharge herself after being repeatedly told off for smoking in her room. One day she joined another stroke survivor, Topsy (Teresa), and myself at the lunch table. "Theyíre hopeless in here," she said "I ordered bacon and egg this morning and all I got was cornflakes. What sort of way is that to run a residential place."
Topsy and I tried to explain that cooked breakfast had to be requested in advance, we could not get out of bed and order on a whim.
"Ha! order. Talk to this lot? Theyíre a waste of time. And that tall blonde one with the pony tail. The one youíre always talking to Ian, oh yes Iíve noticed. Sheís useless, and a right bossy bugger. I donít know why they keep her on."
Sometimes I donít think things through.
"Now Ethel, I will not have a bad word said about Kathy, sheís my girlfriend, (I winked at Topsy who was hiding her mouth) weíre getting engaged when I get out of here."
Even though my wife visited every day and Kathyís married status was proclaimed on her ID badge the story flew round the place. Several patients congratulated me, most of the staff saw the funny side but a few took the chance to lecture me.
14.3 "....Iím coming home, iíve done my time...."
Another home visit to check the safety rails, have a trial run up and downstairs, get in and out of the shower and I was ready to go. A couple of long chats with Malcolm, the resident social worker, made Teri and I aware of all the help we were entitled to. Then I was ready to go out and sink or swim.
Discharge day arrived quickly. There were some more attempts to persuade me that I might benefit from staying longer but I had burned my boats. Apart from the general oppression of hospital life some of the standard treatments were in my opinion not the best available and I wanted to pursue my own theories. I hope no physiotherapist will take this as criticism of their profession, all the people who worked with me were dedicated, intelligent and more than competent. They are all aware that theory is OK up to a point but with six billion people in the world, six billion theories are needed. Bureaucracy of course stifles the individual creativity that allows physios in private medicine to tailor treatment to individual needs, but a "one size fits all" approach to therapy is by its nature doomed to fail everybody to some extent.
Once Kathy had pointed me in the right direction it had not taken long to work out that the recovery process would have two threads. The physical conquest of disabilities was one. The other, and perhaps the more difficult for most people concerns finding the intellectual stimulus to keep the process of life moving forward. A lot has been written on the physical aspects of stroke recovery and I am not particularly well qualified to write more. That aside, there will be plenty of dedicated professionals around you give you advice and explain things. All I would recommend is that you read "The Hitchhiker's Guide to the Galaxy and thus learn or remind yourself that if you want the right answer you first have to ask the right question. What I have tried to do is take you through the emotional side of recovery. No expert can ever do that. In keeping the style familiar and informal I wanted to make you feel that we are sitting in the common room of your ward chatting through things.
Physically there were signs that eventually my condition would easily pass the initial prognosis. My approach to problems has always been rather confrontational so one of the lessons to be learned is that where it may be possible to knock down a solid wall by repeatedly flinging oneís body at it such an approach is futile if half of the body does not want to join in. When faced with an obstacle that willpower and determination are not enough to overcome, it is difficult (but sensible) for somebody of my nature to back off and walk round. But I was learning.
For people of a more placid disposition, a little throwing oneself at brick walls is very necessary. Nothing can be gained without a price and to push ourselves physically is the only way to maintain progress at times, even if it hurts. Neither I nor your therapists and doctors can help you decide how much pain you are willing to bear. I will warn you though, if you want to get things back it will hurt, (but the payoff is worth the pain.)
Intellectually it is harder to deal with the after effects of a stroke or serious illness and impossible to advise an individual on how they might cope. I could have ended at my discharge from rehab, but there were still problems to overcome.
On the day I said sentimental goodbyes to everybody, especially Diane, Sue and Brenda, told the ambulance crew to be patient, I had said on the day of arrival that I would walk out or be carried feet first in a box. I walked. As the doors swung closed behind me I looked back, thought of all the good friends I had made among the staff and fellow patients and said......
Kathy? She was in a conference all day so we had said a sentimental goodbye the night before. No Iím not telling you about it. All through so far I have painted her as the scarlet woman but this has been for comic effect. Kathy is a brilliant nurse, but far more than that she is a truly good person. Yes, we did flirt but it was in fun. The laughter and "can do" atmosphere we created did more good in those few months than the strictures of the po-faced, calvinistic, rules and regulations brigade will do throughout eternity. Hospitals should be about people not rules. Flexibility is the keyword. It has been said that I do not understand, I am an outsider. Before the stroke hit me I had done a pretty good job at top level in one of the biggest, most advanced hospitals in the world. Iíll make the government an offer. Put me in charge of the NHS, give me a hundred Kathys and the power to sack anyone who ever says "canít" and Iíll turn the service round in two years (with much wailing and gnashing of teeth from existing managers). Ballís in your court Mr Prime Minister.
Anyway back to Kathy. We were drawn to each other of course and once talked about what might have happened in a different world if we had both been young and single. To be completely honest I might have overlooked the fact she is six inches taller but really, seriously, could never ever fancy a girl with big feet. (this sentence courtesy of the Pigs Might Fly dept.)
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