Monday, September 30, 2013
Transverse Myelitis: Learnings
This is one of the later chapters from my book: "Taking Charge: a journey of recovery". You can purchase the whole catastrophe at http://www.familyconcernpublishing.com.au for A$13 plus post and packaging, or download the pdf for A$10.
Any comments are welcome...
Having been to my 14-month medical status review, I have been reflecting on progress to date. More than that, on the one hand I found it both a relief that the consultant was prepared to sign a form for a 5-year handicapped sticker for the car, but on the other hand somewhat confronting – am I really going to be like this for another five years. Am I going to be like this forever? Is there nothing I can do to take me back to where I was in November 2009? At the very least is there nothing I can do to create substantial improvement? In a nutshell, there is on the one hand between a rage that I have been struck down like this, versus an acceptance that life is what life is, and what we have to do is to bear our sorrows and difficulties with fortitude and humility.
So, having explored in the previous chapter some of the daily dilemmas created by this inner conflict, I have been trying to think through what I might have learned over this testing time. I don’t mean just about medical conditions and how to manage some recovery, not just about medical systems and how to survive them, but about me. Have I changed and, if so, has it been for the better?
I am aware that I have always strived to be, and do, the best that I can. This relates to what is an ongoing joke in the family about what might be called my ‘pathology’. I have never quite been sure that I am good enough, so I continually wear myself out trying to improve. In the family we now call this my ‘4% syndrome’, and in part it relates to an early memory of mine from when I was about 12 years old. It was the end of the first high school year - which I had mostly enjoyed. I was called into the Maths Master’s office after school, and told: “Graham, I just wanted to congratulate you. You have done very well this year. Not only did you excel in Mathematics, but your behaviour has been exemplary” Mr Jacobsen (or Jake as he was known) had a slight lisp which made pronouncing the word ‘exemplary’ somewhat of a trial, but that did not stop him. “Now as you know, I give marks for good behaviour during the year. So if we add those to your actual score, in total you have 104%. So now we have a bit of a problem... Even the Headmaster, who is merely an English scholar, will know that there is no such quantity as 104%. So I have made a decision. I will remove that 4% and a further 4% from your overall mark, which leaves 96%. You will still be top of the class, and will be presented with the prize for Mathematics on Speech Day. Does that sound OK to you?” So what do you say? I was glowing about being top of the class, and glowing about winning the prize, and slightly overwhelmed to be invited to Jake’s office and asked about what I thought. Being treated as an equal somehow did not go with being a 12 year old in a somewhat strict English grammar school. “Yes, Mr. Jacobsen, thankyou very much sir.” “Good. It shall be so” was the reply.
I was over the moon, and sat with a silly grin on my face all the way home on the two buses I had to catch to get there. I raced from the bus stop, crashed through the back door, and confronted my father with: “Dad, dad, I got 96% for maths…” to which the response was “So, what happened to the other 4%?”, and he went back to listening to the radio. No further discussion allowed. I was crushed, totally crestfallen, and my silly grin was wiped from my face. What do you do? Retracing your steps, and going into a long rigmarole about the whole story somehow was just not possible. I wished I had started at the beginning of the whole story, but it had all just gushed out in my excitement. I climbed the stairs miserably up to my room wondering just what I had to do to please this (as I saw it) angry, dictatorial, distant, and sometimes physically violent man. Many years later, I now know his story, and how he became like he was, but it took almost 40 years before that became clear.
If you are psychoanalytically oriented you will recognise this memory fragment as a ‘screen memory’. That is, it is a memory that encapsulates a load of other stories. My father was in the Royal Air Force and was posted to Egypt when I was 10 months, not returning (even for leave, in those post-war years of turmoil in the middle east) until I was 4 years old. I can imagine now that I was seriously in the way of a man who had not seen his wife for over three years, and whom I barely knew. On one occasion he commanded me to do something (I have no memory of what), and I am reported to have turned to my mother with “Do I have to do what that man says?” I guess the clash of wills was ‘on’ from that point. I could never please him however hard I tried. As I grew older, I got involved in all sorts of activities outside the family - choir twice a week and twice on Sundays, cubs (and later, scouts) once a week, visiting friends, riding my bike down to the beach, and later developed a passion for drama). With hindsight I can imagine that I was staying out of his way. Whether or not it occurred, and I did not hear it, I cannot remember any praise for anything I achieved. It got worse with age, even though I tried harder and harder to please. With time, this ‘driver’, this forceful ‘superego’ voice never acknowledging success, got stuck inside my head.
I have always wanted to excel, and (again in retrospect) I can understand that this must have been very difficult, over many years, for those that loved me – given it often intruded into marital and family life. In those early teenage years, I did not excel, and my marks at school went steadily downhill from first year until I was forced to work very hard to get into University to study Medicine. Even then, my final advanced level marks were not spectacular, just sufficient. Once there, much of what must have been a low-grade depression, perhaps a ‘dysthymia’, cleared as I became more and more enthralled with the fascinations of learning to become a doctor.
I was never satisfied with coming second. I trained very hard over time at rugby, and was mortified that I could only ever achieve playing in the second team for King’s College Hospital. I began to enjoy beer, and over 3 years found may way to the fifth team – the drinking side. I did excel at squash, played for King’s and was secretary for the club. I excelled at bridge, and ended up playing at inter-University level and was then mortified again when we went down to East Dulwich bridge club to demonstrate our skill and were soundly beaten by chain-smoking grannies with purple rinsed hair.
I learned how to play poker at med. school, and became quite good at that, chancy business that it is. In my fourth year, one afternoon, I actually won a 100 pounds. That might not sound too much these days, but in 1966, my quarterly grant for living expenses was only 96 pounds. So the winnings were a major excitement, and Jan and I had a wonderful holiday down in the West Country for a week. During that week, I made a concrete decision never to play poker again; I had no wish to ever have someone win back that windfall! I have kept to that pledge, even though more recently from time to time I watch one of the international poker games on TV and dream…
I wrote a series of articles with some bits of (bad) poetry for the School of Medicine student magazine, but was resentful that the editor was both firmly esconced, and excellent at what he did. I joined the drama society, and ended up co-directing two very successful end of year Christmas pantomimes, and directing a one act play (Pinter’s The Lover) which won the University Drama Festival cup. I won the Medicine and the Psychiatry prizes for my final year.
Well you can see the emerging pattern. I am a somewhat restless ‘can do’ person, I am always very active (and often overcommitted), I like to contribute, and I like to be the best I can. It is a very personal issue. Back in the late 1970s I did try sixteen months of twice weekly psycho-analysis to see whether that would help me get rid of my 4% syndrome, and the recurrent depressions that occurred when I could not be first, could not win. Psychoanalysis was unfortunately both tedious and useless; it really did not suit me. I am sure my analyst would reflect on all that time and note that I was ‘resistant’. I would have to accept the label.
Outside of the immense family support I have always received since my marriage, three things have been helpful. First, when I was in private practice in the 80s, (in part licking my perceived wounds from coming second out of two applicants for the director of psychiatry job at a local hospital), I went to an art class for three precious hours in the middle of a extremely busy weeks over a four year period. It was an oasis of difference, and working on the right side of the brain soothed my ego, allowed me to get off my own case, and become a whole person for a while.
The second thing that helped was a series of conversations I had had with a social worker from Perth I had met at a family therapy conference several years before. I must have been quite low in spirits at the time. She kept coming up with strategies for me to try to lift my mood and get me going again. Eventually, and totally out of the blue, she sent me a gift – a framed gold-lettered 4% sign, under which she had written “Graham, here is your 4% - Peace unto your being”. For many years that allowed me to feel whole.
But having said that, that same year I was also sailing a catamaran at Henley Beach every weekend – yes, you guessed it, competitively. I always wanted to be the best, would gnash my teeth when I missed a mark, or a wire snapped, or pushed the boat too hard and made an error that led to a capsize. In 1984 I was club champion; but only for that year, of course. LOL.
After I gave up sailing, and having moved back into public service in 1985, I began doing Corporate Cup to keep fit. This was a once a week running competition between teams of four from various business – we called ourselves ‘The Elf Service’. It was a great idea because although you were contributing to the team, essentially you were trying to better your own time each week over four and a half kilometres; it was this personal improvement that made the contribution. Of course, over time, running gradually became more and more serious, until I was running three times a week (with a dog that wouldn’t let me go for a walk or a run without her), and on Sundays with the South Australian Road Runners. I ran my first and last marathon in 1989. Had to give it up. The obvious reason was that it did not suit my physique – I was just too heavy. The truth (deep down inside) was probably that I knew I would never win, would not even come close to being in the top 4%.
And after sailing, and running, I began a twenty year career in Karate, eventually becoming a black belt after 10 years, becoming a teacher, and eventually grading in Japan in 2008. You see the story repeats itself. Always striving, always needing to do better, always wanting to become the best.
I have always needed to be the best. So for the last 14 months, I have been crippled by some problem that is still to be totally clarified. It was always going to be the case that I would bring to this my need to be the best that I can. Failure, I knew, would lead to depression – not even to be considered. So I have been doing exactly what I have done in almost every circumstance of my life. I have worked hard to improve, to recover, to be the best that I can. Every single day I am aware of which bits work well and which bits don’t. I am constantly thinking of ways to improve the things that don’t work well. It is not yet an obsession, but it is a constant underlying theme. If I go back to Karate, however awful my style is after all this time, will it improve my stability, reduce my ataxia, give me more certainty? If I can manage to step up two stairs at a time, will it improve my ability to, first of all, lift my knees up higher, which will allow me to do some semblance of a front kick?
You will remember from one of the earlier chapters the email I wrote to friends and colleagues a few days after I was crippled, in which I closed with: “Anyone for wheelchair Karate?” Knowing me as you now do, you will realise I was serious. In fact, during the weeks that followed I got on to several leads to find out whether wheelchair Karate was possible; it is.
So am I different? Have I learned anything? I have known my self and my failings for many years. I do know what drives me. I described it above as a pathological problem. Actually I now doubt that. It is just who I am. I am restless, always interested in different aspects of life, always needing novelty, something new to take on – and I always want it to be the best I can possibly attain – even if it is only icing the Christmas cake. If I take on an issue for others, I still want to do the very best that I can for them.
I do take on causes. In a general sense this has always been the Mental Health of young people, which continues to be poorly funded despite the fact that young people grow into adults and then old people. Everyone knows that. The rhetoric at all levels acknowledges the need for Early Intervention, and for Mental Health Promotion, but the funds for prevention continue to be inadequate. At this point, having been involved in suicide prevention over many years, the focus of the last five years concerns young people who self-injure. I am intrigued by it, have struggled to understand how it might lead to suicidal behaviour if not treated, have been outraged that so many sufferers tell stories of having been treated poorly by health systems and some professionals. So we are now involved in basic research to find causes and contributors, but also involved in clinical research around new therapies to better meet the needs of this group.
Again there has been the need to strive, to succeed. We now have several PHD students and honours students who have joined the team, and many sufferers who have contributed their time and knowledge. We have gained national grants to assist the whole process, and we have published our work in international journals. Am I satisfied with all this. Well, I will allow you to come to a conclusion; I am sure you will guess correctly.
Earlier I said that there was a third thing (outside of phenomenal immediate family support) that may have contributed to change. As I note in an earlier chapter, we learned to meditate as a family sometime in the mid to late 1980s. I am not sure how this came about really. We are of a generation that had an interest in things Eastern, and were intrigued by the Beatles gaining so much from Maharishi Mahesh Yogi. I came across some scientific studies which suggested that transcendental meditation could make you feel better but, in addition, lower blood pressure, increase physical resistance to disease and combat the stresses of modern life in many ways. Anyway, we found a meditation centre, and went for a course of lessons.
I have meditated on and off ever since, especially at times of high stress, or on airplanes. Of course recently there have been some superb studies on the effects of meditation on the minds of Buddhist monks. His Holiness the Dalai Lama has brought together a group of scientists who have met over many years to work collaboratively on the science of meditation and its impacts, mindfulness has been incorporated into an increasingly wide range of therapeutic approaches, and a swag of books have emerged about the plasticity of the brain and how this can be achieved.
I think that, as a long-term meditator of nearly 25 years– albeit with somewhat erratic practice – there has been some change in my inner self. I am generally calmer, slower to anger, less critical, more accepting of the failings of systems, religions, politicians and colleagues. I don’t think this is just part of the ageing process, because often age leads to a world-weariness or a bitterness, neither of which I feel. I talked at the beginning of this chapter about ‘rage’. What is interesting is that I feel a sense that perhaps I should be enraged by many things that have happened over the last fifteen months or so, but I am not. I guess I have reached a position of being able to say: “They are all part of life’s rich pattern”. There are no guarantees or entitlements about how long you will live, what sort of health you will have, how people should treat you. Life is neither fair nor unfair. It is just life, your life, and you try to live it in the best way you know how.
Oh dear, have I learned ‘Humility’? No, I don’t think so. I am still arrogant, still pushy, still have high expectations of myself, and still trying to contribute something to the world, and I will do my best to achieve some of those things in which I have decided to invest energy before I die. I do things because I can. I have achieved things because I have tried and succeeded. I have been thinking that really I have had an extraordinary life, I have been gifted in so many ways, and I have tried to use those gifts to help those people with whom I come in contact. I have been honoured for some of that, and pilloried for some other things, ignored with regard to other issues about which I have felt strongly and said and written strong statements. You can only play the cards the way you see your hand. Actually someone wrote a song about that. LOL.
So have I learned some sort of ‘Acceptance’? Yes, and no… I have to accept that I am who I am, others are who they are, and life is what life is. I think I have had some level of acceptance for many years. Back in the late 70s we lost a three year old daughter who drowned in our then home swimming pool. You perhaps can imagine the horror, the grief, the shredding of who you think you are, all the ‘if only’s’ and ‘why me’s’, the utter wretchedness, emptiness, guilt, anguish - and so on. It took many years to come to terms with the loss of a small piece of perfection. At one level you never forget, never feel that any of your other children are safe into the future. The body remembers, and every year about the time of both her birthday and the date of her death, we grieve – even now, all these years later. It just happens; you can’t imagine why you are feeling slowed down, incompetent, distracted – and then you remember… You come to understand that while we believe as humans that we have a certain control over our lives and the lives of those we love, it just ain’t true, folks.
We can do our best. I have strived to be the best father I possibly could. I was, and am, always there for them. I love them and their families to distraction. They have been there for me during the last fifteen months. But there are no guarantees. The only thing you can do is treasure each moment, do the very best you can, encourage and love and support them, and make sure you don’t hurt them or leave some negative legacy. Grasp every opportunity to help them to reach for happiness.
Do I accept my current physical status? Yes, and no… LOL. I do have to accept that I need to be more aware of my surroundings, and possible dangers, I move more slowly than I would like, and certainly more slowly than others. If I move too fast, I have a tendency to trip – so steady as she goes. I cannot turn too fast because I am just that bit unsteady. I walk without aids at present, am more confident in my walking, but accept that at some stage I may well need a stick or crutches, or even a wheelchair as I age. We will see…
Acceptance is not ‘giving up’. Acceptance is about working out where you are at, where you think you might be able to get to, then working towards a series of small goals which may help you reach the overall objective. So I am still having regular acupuncture; I know that this is helping my body to manage the stresses and strains. I have a strong exercise regime, which includes an exercise bike three times a week for 40 minutes. I have returned to Karate, and been accepted back. They know I have major limitations, but they do not appear to be concerned by that. The message is: “Do what you can”. I will. I know that it will improve my core strength, my balance, my control over my feet, my general fitness, my awareness, my strength, and my sense of self. And it is a place full of friends. We all sweat and bleed together. We have been through much, and are happy to keep on going – each in our own way.
I am aware I need to plan work and rest carefully. I get tired easily, and need to pace myself. That’s OK; I can do that. I am still working, I am still productive, I still have the privilege of supervising and teaching therapists of the future. I still have good clinical and research ideas, I am still seeking grants to try things out, and I still attend high level planning meetings about issues like prevention and early intervention in mental health. I still have the opportunity to offer my couple of cents worth. I am still publishing, even if the world is gradually moving beyond reading books. I still believe in humanity.