And the voice of the turtle was heard in the land
from The Song of Solomon
15.1 "....and all the roads that lead you there are winding...."
Returning to life outside the hospital was not easy and brought me face to face with some new challenges. The main one was mobility. We lived a fair way out of town, I could not get on and off buses, taxis are expensive and the remnants of our savings were disappearing fast, the local dial - a - ride service was more expensive than taxis. If I was not going to be a prisoner in my home, driving was the only option. There was some medical opposition to this, rules again. Surely what mattered was whether I was capable of driving not my medical history. The consultant who was looking after my adrenal glands, an open minded, approachable sort of guy, tested my reactions and peripheral vision and gave the all clear. The problem I have in dealing with many hospital consultants is they are totally incapable of relating to anybody as arrogant as themselves. Those who behave informally and treat me as an equal quickly find that although quite assertive in pressing a point of view Iím not arrogant at all (well, not much).
It took a few weeks to get the car modified and driving licence amended to show disability restrictions then I was mobile again. Driving was a major milestone on the way back and a big lift after the emotionally exhausting period of readjustment. On becoming mobile again (Teri does not drive) I found there were a few more harsh realities to face, mostly of my own making.
"Do you go to the pub," asked a social worker who came to visit and was surprised to be told no.
"Oh, you must. Donít be embarrassed about it, if people think your wheelchair is in the way thatís their problem."
"Well, thatís fine," I said, "but is going to the pub compulsary?"
"What do you mean?" she answered, "Whereís your local?" Again this professional carer was surprised to be told that "a local" had never been part of my life. I donít know why but it still shocks me to realise that those people who spend most time lecturing us about imposing stereotypes on people are the quickest to impose stereotypes. The last few places I had called for a drink regularly were the Clipper Bar and the Dubliner in Stockholm, The Crown and Treaty in Uxbridge, Laurel and Hardyís in Dagenham, and a wine bar the name of which I cannot remember near Charing Cross in Londonís West End. Hardly accessible on a limited budget. Teri and I are not pub people, we liked eating in Restaurants and seeing shows. No big deal, thatís just the way we are. With so many pubs to choose from do we have to have "a local?" Things like that bring home just how much oneís life has changed.
Apart from the pub problem there was also the fact that I did not, do not and never will like going anywhere in a wheelchair. Maybe this stubbornness had helped drive me to greater efforts in trying to recover but all the same it is bloody stupid. Itís just me, and as Iím quite happy to live a very restricted life for a while longer is not really a problem. Teri still sees her friends, we manage to dine out occasionally though not as extravagantly as before and now steps and uneven pathways are becoming less daunting are hoping to see a couple of shows soon.
If you set out to make a maximum recovery, do remember that all the effort, pain and frustration are for you and your loved ones. It is vital that you make your own choices, donít be told "you must do this" or "you should do that." Many people, a significant number of megatalents among them, lived quite solitary lives with little need of company, others are not happy unless in a crowd. There is no right or wrong way to live.
It would be misleading to suggest I have given up on social activity, it is still good to be in company occasionally. It is more a case of having set aside that aspect of life for a while, unlike my riding and windsurfing which have been let go and filed in the drawer marked funstuff so successfully that I can now enjoy watching people doing these things without any resentment at all. Among things in the "set aside for a while" closet are walking in the hills, driving silly vehicles over muddy ground (something I never had time to do much of anyway) and wandering around city centres for hours. There is something magic about big cities that makesd it as pleasurable to walk their streets as the footpaths of mountain and forest areas.
All those things are possibly get-backable if I am patient.
15.2 "....riding along on a pushbike honey...."
The onset of disability is not the end of productive life, it merely means we have to look for new directions. Our lives move forward constantly toward an inevitable conclusion.. I have thought of it as being like riding a bike, it is the momentum of our progress that keeps us on course.
Do you remember when you first learned? We have to find balance and the more slowly and carefully we try to go, the more difficult it is to stay upright and set off towards our destination. In order to get our balance we must find the confidence to push on the pedals and get ourselves moving along. To continue the analogy we need only look at what happens during a bike ride. As in life it is not steady progress to the end (at least, I hope it isnít, that would make a dull journey.) We have to stop at road junctions and decide which way we want to go. Sometime we might come to an incline too steep or a stretch of road too rough and have to get off and walk for a time. Or perhaps some unexpected event may make us fall off in which case, unless we give up the only thing to do is remount and carry on. Sometimes falls hurt us so badly it is difficult to find our confidence and set off again.
Becoming disabled due to serious illness is such a fall and inevitably people will say to themselves "ooh, that hurt," and give up, deciding to stay where they are. But life is unforgiving and only rewards those who confront it. In some people, perhaps because of their genetic make up or perhaps because of social conditioning, fear will always gain the upper hand and hold them back. We all know people like that. They try to make themselves very small and still and seem to hope only that life will pass by without noticing them. If you have read this far it is very unlikely you are of that type. On the other hand, there are the noisy and brash people who are constantly standing on the tallest object they can find, waving their arms in the air and shouting "look at me everybody." Most of us fall in between the two and lean towards one side or the other according to our circumstances at a particular time. What we must never do (and I am not just talking about disabled people now) is let fear of the unknown convince us that we have nothing to offer and are doomed to failure in all but the most mundane endeavours. How often have you heard, "oh, I canít do that, Iím not clever enough" or "Iím just an ordinary person?" Many people have told me I am very clever but theyíre wrong, Iím simply good with words. Add that to self confidence and you have a good communicator. Kathy once said she would never have been clever enough to do my job, yet she is a good communicator, can motivate people and is not afraid to make decisions which it is mostly what its about. Iíve already admitted not having what it takes to be a doctor or nurse, in fact it is fortunate Iím not a diabetic. I could slip into a coma while dithering about trying to delay injecting myself. We all have something to offer and have a duty to try find out what it is and how we can make use of it. It is a matter of getting to know ourselves and choosing what is right for us. This is more difficult for people who are born or become disabled because of course we have to come to terms with what we cannot do before considering what we can. Add to that ignorance and prejudice and we are really swimming against the tide.
In my own case the search for what I could do was easy. I had always wanted to write but a successful career got in the way for many years. Had the ambition not been waiting for the opportunity to fulfil itself I may have considered painting, become involved in local politics, an authority on Ancient Egypt or Greece, accepted an unpaid role with a club or charity. Now, during the long wait between publishers saying they like my work and actually making it to the bookshelves there is always the possibility of working with computers. Iím not keen though, twenty plus years is enough. One thing I would not, could not ever do is sit back and watch the clock go round.
15.3 "....a little bit of Monica in my life...."
After three months at home, during which I mainly worked on the now well advanced novel, an appointment was made for physiotherapy in the local hospital. Before leaving rehab I had worked with Sue on developing a personal exercise program to maintain progress and did the exercises every day. More feeling was returning to my left side but little movement. Continued use of the long stick made walking difficult but with nobody around to stop me pushing it to the limit, the muscle pattern was becoming very distorted. This did not make things easier.
All through the summer physiotherapy was intermittent, people left the local community team or went on long term sick. In the case of passive physiotherapy a trained practitioner can read up case notes and work on anybody for an isolated session, but in a case like mine teamwork is essential. It takes a few sessions to get to know each other so odd sessions with a different physio each time served little purpose other than to get me out of the house.
Eventually I did get a regular physio, Geraldine, who was dubious about the benefits of the long stick, but decided not to disrupt the treatment. We decided to concentrate on the problems caused by the inward turn of my left foot and seemed to be making a little progress when an administrative "restructuring exercise" decreed that the least needy patients, i.e. those who were making most progress, should have their treatment terminated in order to meet budgetary requirements - another couple of physios could be sacked and an accountant hired. Do you see what I mean about taking responsibility for yourself - you have to; nobody else will. At the time my therapy came to an abrupt end we had been talking about putting some kind of brace or splint on the left ankle to prevent the inward turn. It never happened.
The autumn rolled on towards Christmas, Iím zooming through time like Doctor Who in a Ferrari now, recovery was boring and the interesting things that happened are nothing to do with this story. Iíd finished my novel, spell checked it, read it through and removed any obvious libel and sent the first chapters to several literary agents. I was about to start learning that getting a novel published is as long and difficult a process as recovering from a stroke.
A lot of feeling had returned along with much more movement in my hand and arm. The shoulder was still wasted and had little control though. In walking, all those gloots, quads etc. were not talking to each other, my abdominals were still saggy on the left and although I could get along well in a very distorted walk, still with the shoulder hoisted up to get some weight on the stick, I would hit a wall at about a hundred yards. Pushing myself further caused a lot of problems. There seemed little I could do except tough it out.
The big setback in second half of that year and the early part of 1999 though was drugs related.