A New Year Haiku

We exit this year
Hoping the world will improve
Two thousand and twelve!!

May there be world peace, a stable world economy, and genuine dialogues and understanding no matter what our race, our colour, our language or our religion.

Finding the Self

In dark I find you
In light I find I like you
I find I like me

Canadian guitarist steals show at Woodford Festival Day One

Its been a long time since I've heard guitar work like this - absolutely finger-picking good. Reminiscent of Robert Johnson, and sounding like a twelve string at times, Matt Andersen showed his virtuosity, but also some moving songs (like his tribute to Coal Miners) and brilliantly funny ones (like his song about getting rid of the girlfriend from hell and wishing her on Satan). This was an hour of pure bliss. Thanks for making the journey from Canada, Matt. I will buy the records. But please come back again.

Colin Hay at Woodford Festival

Colin Hay was superb at Woodford Festival this year. Funny, reflective, droll, and later backed by his achingly beautiful wife Cecilia Noël (what a mover!). The unaccompanied guitar work was crisp, for the old Men at Work songs (like 'Down Under'), and for the later works - every one a highlight. One extraordinary and novel piece of accompaniment from Cecilia at the end was her pretending to play a flute, voicing the notes in perfect pitch. The whole hour went too quickly, but left me with an urge to buy Colin's later CDs. Thank you guys - you made my Woodfordia Day.

Renee Geyer at Woodford Festival

The one event I really wanted to see at this year's Woodford Festival's opening day was Renee Geyer. And what a sad performance from an Aussie Fem music icon. She came on stage saying: "I am really over this..." (or words to that effect) then moaned about the heat and the timing (3pm: I guess she would have preferred an evening). The body and the voice have sagged, and she often looked as if she was wracked by a stomachache as she bent over. She had enormous trouble removing shoes and stockinettes, trouble replacing the dark glasses, trouble avoiding obstacles on stage, and overall gave the impression of being substance affected.
She ruined several old favourites including 'Moon River' and 'Funny Valentine' (which as it headlined the bass player it was sad she could not remember his name - he looked crestfallen but played brilliantly). The set came to a somewhat abrupt ending, as if she had just had enough. The band tried to cover for the problems, but overall I felt their pain, and that of the audience who began to leave really early on.
I fear this special lady may need some help.

A Christmas Haiku

My wish for you all
Is that peace sneaks its way in
To your hearts and minds

A Haiku on the Cure for Depression

Complex music swells
Deep Brain Stimulation
The Phoenix rises

A Haiku On Diagnosis

That DSM book
Pathologises our lives
Suggests we're all ill

Haiku on Delusion

I know I love you
You think it's all delusion
But I know I'm right
LOL

Seeking Solutions to Self-injury

One copy of our new booklet 'Seeking Solutions to Self-injury; a Guide for School Staff' has been sent to principals at all catholic and private schools in Queensland, free of charge. We have had some surprising and really lovely feedback. This really quirky thing has happened, and I wanted to share it with you. Two schools have asked for 100 copies and are willing to pay the small price ($2.00 each +pp) !!!. Woo-hoo....
Within a day or so you should be able to download a copy from http://www.suicidepreventionstudies.org/index.html

Taking Charge - serialized

I have been discussing bits of the book with all sorts of people. One of the main problems in serialising is that chapter 16 appears first! Well, you could just work backwards....
Or, of course, you could read random chapters...
If you want to get the story straight, just go to the side bar on the left, go to November 2010, find Chapter 1 'A Bad Day', and work from there.

A Haiku on Acceptance

Row, row, row your boat
Gently, gently down the stream
Life is just a dream

Taking Charge
Sixteen
Learnings

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.

Haiku on Teaching

I am a teacher
I have the experience
Of learning each day

Taking Charge
Fifteen
Dilemmas
We just had a gag at home that made both of us ‘fall about’ (not literally, I hasten to add). I had just finished putting some stuff in the dishwasher and said: “Well, I’ll just beetle upstairs and get on with some writing”, to which Jan responded: “I would love to see that”, and we both laughed. “Right” I said (still laughing) and literally marched across to the stairs with more stability than I usually have. “I could try taking the stairs two at a time; I haven’t done that in ages” (fourteen months), and proceeded to somewhat carefully try the right leg first (holding on to the banister as I usually do). I did it, but Jan’s comment was “Whoops” as I struggled with stability. “OK let’s try the good” (left leg – on the grounds of the ‘good go to heaven’). Mmm, not much better. We both laughed, “I’ll just have to beetle slowly then”, and promptly decided it would be a good exercise to work on to strengthen the legs, over and above my three times a week 40 minutes on the exercise bike.
But, though it was funny, there is a serious edge. First, the last month has not been all that good in terms of stability. I have done less exercise due to end of year work stuff, and Christmas celebrations and family time. It has been raining solidly for weeks, so I have been unable to get in the pool (more of that later). So I have been a bit depressed that perhaps my spinal cord is not improving, and this bloody process is still active, not resolving. So to acknowledge that when I set out in my semi-beetle stance walking with more determination, I walked with more stability, has a central lesson in it – do more, recover more – a lesson I have known for a good year now. But there is more. To even think about taking stairs two at a time is a triumph; well perhaps many of you would see it as bravado or perhaps outrageously stupid. But it suggests that somewhere in me I know I am nearly there, but also needed to test it out to urge myself to work harder.
The other issue is the one of due care. As I note, I use the banister every time I go upstairs and every time I come downstairs. But, I have noticed that my grip is lighter, and that on several occasions I have consciously focused on how my legs are working and less on the death grip to ensure safety. I can now carry quite heavy or awkward things in the non-banister hand. Again, progress. So trying to take two stairs at a time, I was back in safety mode, with the old death grip – quite sensibly. I have no wish to fall and really set myself back. So on the one hand there is care, and on the other challenge. Somewhere in the middle is an issue of habit.
I am increasingly aware that, when walking, I hold onto railings and touch walls and the surface of furniture, when I am doing it almost like a talisman rather than taking any weight, or ensuring in reality I don’t fall. OK at night getting out of bed, I am wobbly in the process of standing up in the dark (or semi-dark of moonlit nights). On a couple of occasions I have sat back on the bed with a thump, and on one occasion did sink (crumple?) to the floor quite lacking in grace (well how many ex rugby players do you know who are graceful anyway?). No damage, but my legs were at funny angles under me and for days I was testing myself out to make sure I was not bruised or had not torn something. I got up, held on to a chair for a moment, then a chest of drawers, and then so on round the bed to the bathroom, slightly shaken.
OK I can hear you thinking: “Why doesn’t the fool use a night light? And use a stick to support his weight?” To which the answer is ‘pride’ (which as we all know ‘comes before a fall’). I am struggling with how I should behave at this time. Am I a person with a few handicaps, just getting on with it? Or am I actually a cripple being stupid about the need for assistance, personal aids, and a large number of concessions? Is it better for me to note the positive improvements and discount the little bits of retrograde progress, or should I be accepting that at some stage in the future I will be back in a wheelchair? And how long have I got before I have to start saving to purchase one of these quite expensive bits of machinery? This dilemma is the central theme of this chapter of ‘Taking Charge’.
The dilemma cropped up the other day when I was on Facebook. One of my recent additions to friends, had offered at some stage to help me with some fundraising, and had laid out a tentative plan. The generosity left me slightly uncomfortable. I do not know the guy well, have not met him face to face, and don’t know why he would offer such a thing. And in an academic environment you get used to doing things on your own and fighting for every cent you can get. People in a competitive atmosphere don’t just offer out of the blue. The other side of this, of course, is that I am normally reticent to ask for such help. Not sure where that comes from, but it has been life-long – a belief that you have to stand on your own two feet, and nobody is going to help you. Jan finds all of that frustrating, and sometimes deeply annoying when I obviously need assistance, but won’t take the proffered hand.
Anyway, the truth is that we have been running a preliminary research program on a new group short-term therapy for self-injuring young people. This has been on a shoestring from our own pockets – ‘private funding’. You know the issue; you can’t really apply for a grant to prove that something works well, until you have done some preliminary trials to prove that it is likely to work. We have almost completed three small trials, begin another in April 2011 for ten weeks, and this may be the last one before the funds dry up. So, I took my courage and pseudo self-reliance in both hands and dropped this Facebook friend a note asking for his help. He is one of those people who seems to be always on Facebook, has thousands of friends, and communicates frequently with all sorts of people.
I had started a Facebook group called Random Acts of Kindness, and my friend had obviously liked this and the ideas in the group, and had offered to circulate his friends. Within weeks we went from about 600 on the group to nearly 900. So he must be all right. He responded that evening, very positive and following his original plan – so we will wait and see. In the meantime, I noted a couple of posts referring to photos, and so I went to look at his photos. My friend is in a wheelchair.
So much fell into place. I reckon he has been following my journey of the last year, and feels some kinship maybe. I don’t know what he has been through, but I could speculate that his journey may also have influenced his humanity, and the fact that he is such a gregarious and helpful person. So I wrote to him acknowledging that at some stage I might need his help in teaching me about the finer points of using a chair.
That pulled me up short. The thought has been hovering at the back of my mind, and the last month has brought it to the fore more frequently. But it may be the truth. However hard I exercise and work at getting well, however positive and solution focused I stay, it may happen at some point as I age, and other forces come to bear on my spinal problems. Mmmm. So, do I let that intrude? Should I just give up now, relax, stop fussing and buy the best wheelchair I can find? Let other people push me around (pun intended), and not worry about their potential for back problems. Well, no bloody way!
But it does come back to those questions: “Am I a cripple pretending to act as if nothing has happened? Or am I just me, with some physical problems I can change and keep under some sort of control?”
“Should I stop the habit, the ‘talisman’, of holding onto things?” Now there’s a good question. When do I really need the security? How do I walk that fine line (pun intended) between being just that bit more careful, against finding myself doing all sorts of small things that begin to define me as a cripple?
Having begun to address all of this, I began some immediate changes (proud bastard that I am…). Every time I find myself touching a wall to give me the impression of secure balance, I stop myself. I am working hard on reducing the death grip going up and down stairs, and just lightly hold the banister. Maybe I could begin to go upstairs without the need for the banister? Well, let’s give it a go… If I practice the two stairs at a time trick, perhaps slowly over time I will be more confident to just go upstairs as I always did in the past. Not sure I will get to the point of being able to chase my grandson upstairs as I would have done in the past. Hey, I am 66.
The rain stopped for a couple of days, and the pool temperature rose. As I described in a previous chapter it has been a right rigmarole to get in and out of the pool. Put down a cushion from the swinging hammock close to the edge of the pool near the steps. Cover this with a towel for later. Place a garden chair just behind all of this. Sit to remove top and joggers and glasses. Place glasses in joggers so you know where they are. Slowly, using all that I learned from the physios at the spinal unit, grasping the seat of the chair lower myself down onto the cushion with one knee and then to the point where I am seated. Edge round, swinging my legs into the pool. Edge forward until you can take the weight on the first and then the second of the steps. Holding onto the side of the pool with one hand and lower down a step to the floor of the pool. Woo-hoo! (and on cold days as the water closes over the groin, ‘God that’s cold; why am I doing this?). In the past, Jan has steadied the chair while I manoeuvred, but apparently she is secure in the knowledge I can manage (as long as she is around).
I was watching Jan as she gracefully took a step down into the pool, only holding onto the skimmer net to remove leaves and flies. Question: “If I practice my two steps at a time trick, why could I not just step gracefully down into the pool?” Mmmm, maybe. Perhaps next week. Question: “But what if you fell?” to which my rational side said: “We are talking about getting into a pool, here. If you fall, you are going to get wet. Duh.” And then it added: “What about several weeks ago when you were feeling a bit cocky, and stood towards the deep end and jumped into the pool?”
Oh yes. I had calculated that the water would partially take my weight, and that if I kept my knees slightly bent on entry, then as I hit the bottom of the pool (if I hit the bottom of the pool) I would be able to manage. Well, there was a slight shock (but no damage), and I emerged with a grin. “So what stops you doing that again?” To be honest with all the rain and the passage of time I had forgotten. I will try it again when my grandson is up for the weekend; that should provide a surprise.
Having thought about my entering and leaving the pool, within days there was the need to do something. I have not yet had the courage to just use the steps of the pool. Why not? They are just steps, even if they are a little deeper than a standard step. There is no bannister. Do you need a bannister? This week “Yes!”
But we have been trying to leave the pool without the rigmarole of sitting, swivelling etc. So on good days when I am not too tired, I stand on the second step and dry myself off, then step to the first step, and then poolside. On one occasion I lost my balance and knew I was going to fall backwards into the pool – it felt as if it were slow motion. I managed to throw the towel at the chair, while falling. Spluttering, I surfaced, and started the whole process again. You have to laugh.
On the early occasions Jan held my hands as I stepped up – just to steady me. A couple of times since, I have stepped up but kept my hands on the side of the pool to steady myself. Then I can stand up straight legged when I am sure I have my balance. Gee, it feels good. Next step (literally) is to just take a step out of the pool like any other person. “Can I do this?” I think so.
“Doesn’t all this thinking through and worrying about it all drive you crazy?” Well, no, not exactly. But I do get very tired from time to time, and I need a good sleep every night to keep me on top of the game of working out every step of the journey. I am still, I fear, at a stage where one slip of concentration and I will be gone. “But then is that not part of all this dilemma thing?” This week, no! Next week, maybe!
There have been some other things that I have noticed. At mealtimes I tend to arrive after I have been summoned, the meal being on the table. Sometimes slightly before I arrive to get drinks for everyone. During the meal, and at the end of the meal, it has been Jan who fetches and carries plates and glasses (or other members of the family at weekends when they are there). In the old days I would have been much more active, and much more helpful. But you get into a set of habits. Given you are slower, and sometimes wobbly, and others are quicker, it is so much easier to leave it up to them. But as I recover, this is neither good nor fair. I can begin to help more, so I will. I have been making a conscious effort to get off my backside (you don’t know how nice it is to be able to say that) and help. Just small things, you understand. I fill the dishwasher, or perhaps wash some of the pots and pans, or make the coffee. Not every day, but certainly on good days.
The extension to this is that there are many jobs round the house that have languished. Lights that need to be replaced, things that need to be screwed back into place, a study that has quietly turned into a garbage tip while my body has been focused elsewhere. Jan just says she needs her ‘Mister Fixit’ back! OK, I am (mostly) here; what can I do? “Well…”, and there follows rather a long list.
The other morning I climbed a ladder, and replaced some fluoro bulbs in a couple of ceiling lights. I used a full size, if lightweight folding ladder which I could put over my shoulder to bring in from the garage. No problem so far; you just have to be careful when walking to not approach objects (like the dining room table) too fast to allow for corrections. OK, ladder placed carefully next to a rigid bench to break any fall, I opened it up and used the cross bar to secure each side to the other. Then some careful thinking around using pockets for the loosened heads of the screws that hold the glass plate to the base attached to the ceiling…. Thoughts about taking a new starter motor with me in my pocket, I opened the pack to place the new lamp in an easily accessed position on the bench, and room to put the dead one down….
So, there we go. Using the golden rule of ‘the good go to heaven’ (thanks Tina the physio!), I put my left foot (marginally stronger leg) on the first rung and pulled up carefully leaning my weight into the ladder. Then I broke the rule and put the right leg on the next rung and pulled carefully up. No problem so far. I was now just under the ceiling and, again making sure I leaned into the ladder, I reached up with one hand to support the glass face plate, and one by one unscrewed two of the screws putting them carefully into my right pocket with the new starter motor. OK, now releasing the clips holding the circular neon tube, I lowered it, and slowly and carefully removed the old starter motor - which I placed in my left pocket. Then pulling the starter motor frame from the tube, one freed up tube got placed on the breakfast bar bench. Not having to reach to far, I picked up the new tube, holding it in place while I fitted the frame, and then the new starter motor. Together, I placed it in the clips. Good. Now reaching down slowly I retrieved the faceplate, tipped out the old flies and dust, and tuck it under the two remaining screw heads/nuts on the ceiling with my left hand. I then got one of the nuts and begin to screw onto the thread at the side of the faceplate. All done, I got out the next nut, and carefully found the thread and then screwed that on. Checking all four screws for tightness, I released the faceplate. Done. Short breather, and then again remembering to lean into the ladder, I lower the right foot to the next rung down, and then slowly the left to the floor. The legs actually felt slightly shaky! I was a bit sweaty! Good we needed some exercise.
The whole process was laboriously repeated with the other ceiling fluoro light, and then I carefully, but nonchalantly, released the cross bar, folded the ladder, and put it over my left shoulder, returning it to the garage without scratching, table, walls or one of the cars.
Now why would I describe this in such a detailed way? Partly, it was triumph to get back to being a handyman, not having to wait for others, or pay a commercial handyman. Partly, because that is how every piece of action occurs in my life at the moment. You have to plan very carefully, and have some strategy for where each bit goes before you actually do anything. Nothing is automatic. You have to be careful, making sure not to carry too much weight or bump into objects. And if you are up a ladder, you really would not want to drop anything small onto the floor. So why didn’t I wait for someone to come home from shopping. Because I am proud, I take risks, and I am fed up with not contributing to the household chores. And what I did was a very small everyday thing for a fit bloke, but a bloody miracle for someone who, a few months ago thought they would spend the rest of their life in a wheelchair. So again, it acknowledges the basic dilemma. I am handicapped, I do have to be careful, but as long as I take it slowly, plan each step carefully, I can achieve things. I can rebuild my confidence. I can get back some of what I had though I had lost.

Just before Christmas our house cleaners resigned. They had been coming for nearly 10 years, and were always cheery, and always left the place spotless. We decided we would see what we could do, whether we could manage. So on Mondays we spend half a day cleaning parts of the house. On the first occasion, I offered to vacuum the top floor. We have a cute little modern machine with an anti-allergy filter – nowhere near the size and weight of the brute we had 15 years ago. So lengthy extension cord plugged in, special tools to the fore, I began in a bathroom, moved to the bedroom, vacuumed the corridor and, needed a rest. It had been fun, especially being careful with all the little tops of skirting boards and nooks and crannies that seemed to have collected a bit too much fluff and dust over time. I had completed about a third of the job, and I was tired, sweating, and my lower legs had developed that (by now well-known) feeling of reduced sensation within a woollen stocking. I rested, had a cold drink and started up again, this time more slowly. I was determined to finish the other bedrooms and the TV lounge. Achieved…. And I was cactus.
A week later I tackled the downstairs, and managed slightly better, getting that lovely sense of achievement of a job well done, and a house that was passably clean; I was cactus…again. Two weeks later, I vacuumed the whole house from top to bottom, and really felt there was less impact on my legs, or my general wellbeing. Another Monday morning again tomorrow, and I will see how I go. My expectation is that this is manageable – one more piece of being a human being recovered. And the long-term benefits seem worthwhile – the exercise is contributing to my physiotherapy program. Ain’t life quaint?
My professional life continues, and I have applied for a further 5-year contract. Such arrogance…or is it? Despite my residual physical problems, in many ways I am at the peak of my profession, doing good quality clinical work, teaching lots, gaining good research grants, advising honours, masters and PHD students, publishing lots each year, and increasingly being cited by other colleagues. I try only to drive into Brisbane on three days a week, and spend Mondays and Wednesdays at home, writing (and sometimes doing the vacuuming). In at work, I am often able to forget physical problems. I see clients or staff members for 50 minutes or so, and it is not until I go to stand up that I need to do that careful thinking and planning thing to make sure I can stand, stretch and then walk. I plan to keep the pattern going for as long as I can. I used to get very tired in the early days, but overall, my work is invigorating and enthralling, and recently I seem to be coping increasingly well.
Are there dilemmas in all this? Of course! As I am walking down a corridor (the corridor of ‘big bums’!) to attend a team meeting, I may be quite ataxic and look slightly under the influence of drugs or alcohol. I have a slightly wide-based gait, occasionally putting in a little stagger (although I trip far less than I used to) and people sometimes look at me strangely (perhaps with concern or pity) – and give me a wide berth. In lifts, I often get odd appraising looks, and (I swear) people do move physically away. Once at the meeting and seated, I am treated just like anyone else, my voice is heard if necessary, and no stigma is perceivable. Should I just quietly retreat to an office and write more books? Nice idea, but no bloody way! I have a job to continue.
Part of being an academic means presenting at conferences; which means travel. I have been able to do this since about 4 months after my paralysis, successfully travelling with Jan’s help (and crutches) down to Tasmania (mentioned in a previous chapter) to consult on a strategy. We have done some travel since then, and the problems seem to be less and/or more manageable (and the crutches are absent). So I have sent in an abstract to a European Child Psychiatry conference. If this is accepted, we will travel to the UK to see family members and consult on another book I am writing, then travel to a second smaller conference on self-injury, in the US. Conferences in my trade are part of self-definition. I research, I write, I present our work.
The dilemmas are about the facts of travel. Are there long distances to walk? Are toilets accessible? Will strange food upset my neurogenic tummy problems (now under better control)? Can I keep up with fluid intake without needing to go to the bathroom every 10 minutes? But one major dilemma relates to systems, and was mentioned in chapter 14. If there is a delay, for instance from being searched or checked for bomb-making materials, will I have an accident? Should I carry a placard stating I have a handicap? Is there a more subtle way of doing this? Should I tell anyone who stops me that I may have an accident? If I am stopped and they don’t care, should I pee on their shoes? Mmm, hope not. But seriously should I tell the airlines, when booking travel, that I may be in need of assistance? Do I ask for a wheelchair at Singapore airport where the corridors go on for miles? I think so. I have to swallow my pride, and accept my limitations, and do the sensible thing. Will that acceptance define who I am? Maybe. Do I care? Yes…and…no. The idea is to achieve the objectives of going, surviving, having fun, presenting our work, and getting home safe and sound. I can deal with my arrogance and my ego later.
One last little note of stunning importance to someone who needs to take charge. Jan and I returned to Karate the week before last (yes, she trains too). On the first occasion I was very careful, stood back from the main line of training, rested when I felt I needed a break, and avoided anything I thought would upset my balance. Shihan, and some students I knew well, were obviously please to see my return. The teacher flagged when I should take a couple of breaks because of the exercise he was about to teach. So, I could manage all of the Kihon punches and blocks, though my retained technique needs polishing a lot. I could manage most of the stances, though much more slowly and with great care to avoid going off balance. I could manage one of the senior Kata, which is controlled and not too wild. I still have considerable trouble lifting each of my knees up to waist height, right worse than left; so I have a long way to go till I am kicking – even if it actually was never my strong suit. After an hour we left early, and as I bowed at the door, my Shihan paid me a mark of great respect. He stopped the class, made them turn towards the door and asked them to bow. I was overwhelmed; yes, I am a Nidan black belt, had been a teacher for many years, and had trained many of the juniors, but my efforts were a bit pathetic. Apparently that meant nothing, and my rank was acknowledged. No-one saw the tears as we went to the car. For the next two days we took delight in our sore legs and back muscles. We had returned; we had done it.
We returned this Friday, and managed 90 minutes. Stances seemed easier and under more control, and my body was remembering the old technique; rusty but there. Again I was in for a shock. At the 60-minute mark we were just about to do one of the basic Katas. The class was divided by experience into groups, and my Shihan invited me to take a group through Kata Gekesai-ichi. Me, who had not done the Kata for 15 months. There is no refusal in Karate. You say “Hai!” and do it. I did. Remembering some of the Japanese commands (but nevertheless confusing a couple) I took charge, and worked around what I could not demonstrate – ie the kicks. Apparently I am still a second Dan Karateka, still valued by the club, still expected to have the knowledge, and still expected to use my teaching skills. I guess I am hooked, recommitted. Are the muscles sore? You bet. Do I care? No, because these two half sessions have contributed an immense amount to my ongoing need for physio. Will I be there next week? You bet.

A Haiku on Anxiety

I freely admit
Agoraphobic symptoms
Totally normal

Taking Charge
Fourteen
Cleanliness
In the acute phase of my being ill, while people were trying to sort out just what I had wrong with me (or not), I ended up spending rather a lot of time in Radiography. Overall, I had
• one chest Xray (routine front on and, as noted elsewhere, curiously not in anyway related to the pain I had in my chest),
• a stomach Xray to look at whether I had a blockage in my bowels to account for the fact that I had gone a whole 7 days with out passing anything; and possibly to estimate the date on which I would burst),
• 2 CT scans (one aimed at my head, and one aimed at my lumbar spine but curiously not aimed at the chest or thoracic spine)
• 4 MRIs (one on admission as a kind of baseline, one to track progress after a few days, one with contrast medium to try to define the damage in my thoracic spinal cord a bit more exactly, and one of my brain (to reassure everyone that I do not have a demyelinating problem like multiple sclerosis)
• one guided lumbar puncture under fluoroscopy to get a sample of my cerebrospinal fluid (the stuff that bathes the brain and spinal cord), after 2 failed attempts using the standard method.
So I came to know the waiting area of the radiography department rather well, and also began to learn how to get on and off various tables when you don’t have any power and coordination in your lower limbs, and people ask if you can bear weight on your legs (having not been informed, nor read the notes). Several things fascinated me.
The first was that the coordination area where all the computers were, was a raised island. There were a couple of steps up to gain access to this walled eyrie, and that of course excluded anyone lying on a trolley, or sitting in a wheelchair. That is, the patients were sort of part of the hoi polloi while if you were staff then you were somehow raised above everyone else. So the staff would gather and giggle in this conning tower able to survey the world in comparative safety away from the rest of us poor mortals. This was made more obvious by the fact that it was Christmas, so this island of staff sanity was carefully decorated with all sorts of goodies including a desktop Christmas tree, while the rest of the department was a bit spartan in décor. There were no decorations in patient areas. Talk about them and us, and the process of dehumanization.
The bit that was even more interesting was the behaviour when a staff member actually had to approach a patient. Just by the steps into the eyrie, was a wash basin, and a whole range of boxes with protective aprons and various sizes of rubber gloves. So on exit from on high, the staff would quickly don an apron, and a pair of rubber gloves, then call out the first name (you note only the first name as if speaking to a child) of the patient they needed to speak down to. They would then walk across and grab the trolley or wheelie, and wheel someone off to a darkened room somewhere. They would return, strip of the gloves and the protective apron and throw them in a bin, wash their hands diligently, and then escape to the eyrie before taking a deep breath of the clear upper air. This ritual was repeated whether or not they actually touched the patient, or just picked up the notes (which of course had been handled by the patient), or just pushed the trolley. What a psychiatrist’s dream (or nightmare depending on which way you look at it)…. a whole department full of obsessive compulsive disorder, with compulsive hand washing. I began to have fantasies about adapting a group work program of desensitization to assist them with their anxieties as they came down the steps from the mountain.
This is a system gone mad. When I grow up I want to own a rubber glove manufacturing business, or a plastic mackintosh production company or a liquid soap distribution business. Whatever were these people up to? They were no longer conscious of the behaviour; it had all become a routine way of life. They must have gone through thousands of pairs of gloves in a year just to avoid touching a patient. And I particularly felt sorry for any of them who might suffer from sensitive chapped hands from all that hand washing. One middle-aged women did inspect her hands carefully after ripping the gloves off, then washed them very gently, and applied hand cream which was gently rubbed in with the expertise that comes of repeated practice. I guess her hands had some time to recover between shifts, but it made me wonder how such potentially damaging rituals evolve.
There was one wonderful episode where the staff member was a bit irritated – after all he had only just settled in the eyrie, and started to share stories with a couple of young women at computer screens. He stomped down the stairs, grabbed his fresh plastic mac and proceeded to put the neckpiece over his head somewhat roughly. It split, and he had to remove it and start the whole ritual again with a fresh mac, adding considerably to his irritation. I wanted to guffaw out loud, but managed to restrain myself. You never know what gets written into the notes later.
OK, I have heard of infection control, I understand about the need in some cases for isolation of people with infection, and I have read about the extremely nasty bugs like MRSA and VRE that can rapidly create havoc in a hospital system, transferring from patient to patient, and ending up eating your very flesh. So is this the system being ultra careful with our health? Perhaps, in which case I am truly grateful. But I also fear that this is just another routine system that has developed, now entrenched and lacking in thought, but complying with some tickabox process developed by the army of bureaucrats who run hospitals (who now exceed the number of doctors according a to a recent report from the Australian Medical Association).
If I knew that I was working with a patient who had a high risk of infection, I would want to take the same necessary precautions. If I knew I was working all day with nasty human products like poo and wee and snot, all of which can transfer infection from human to human via the host of a wheelchair or a handshake, I too would want to take sensible precautions. But the system has gone mad. The cost must be astronomical. I would suggest the whole pattern detracts from what is central in medical care – the patient/professional relationship, that therapeutic alliance so necessary in any branch of health care if people are to get better. If patients and professionals are not partners in the process of care, then medicine becomes something that doctors or nurses or others do to patients. How can you possibly begin to feel part of a therapeutic team (and take some responsibility for your own future health) if you notice that staff stations are 2 steps up in a rarified atmosphere, or that every time someone approaches you they symbolically gown up as if you are a nasty infective organism yourself rather than the centre of the care process.
Some other processes were equally ritualised, and when you really examined them it suggested that the original intent had been lost. Several days after I had been on the Neuro ward, a female orderly came in an rather efficiently flicked a duster at various surfaces. So a shelf over the sink had various objects removed, the duster was used speedily, and the objects were replaced. So, this was not an antiseptic wipe, carefully cleansing the surface and reducing the opportunity for bugs to grow in dust, it was a bit of a sham. Other surfaces followed – the window sills, a shelf behind the bed had all the cards and precious gifts and pots of flowers moved to accommodate the duster. The visitors’ chairs were given a special flick – after all, you never know what visitors bring in from the outside world. Was it a special antistatic, antiseptic cloth? I don’t believe so – it looked just like a duster you might have at home.
Later the floors were given a good mop. This was usually done with vigour and practiced technique by a wardie. The slightly grubby looking mop was dipped in the bucket partially squeezed, then whisked from side to side very efficiently. I suspect there may have been some antiseptic in the bucket – I sure hope so. On two occasions, the vigour of the flick exceeded what was needed, and I was in the firing line; a small spray landed – on one occasion on my cheek, and on another occasion on my arm. I hope there was antiseptic – after all I have personally experience of what finds itself on the floor (not including the grape). I guess I sympathise with the workers doing repetitive jobs, probably under some time pressure, but always wanting to get done in a hurry. So the original meaning of the process gets subsumed to ritual. Does it matter? No probably not. I am sure much greater care is taken when there are nasty infections around. And the bonus for someone stuck in a bed and paralysed is that at least you have something to watch, and ponder, but also you have company and someone to talk to.
When I first arrived in the Spinal Unit, I went off to have a shower. I say ‘went off’ but it wasn’t quite that simple. In the previous place I had come to learn how to shower on my own in the shower wheelie; I was really proud of my independence (Mmm, a bit arrogant perhaps, or just plain pig-headed). The OTs had not yet been formally assessed my physical capabilities regarding routines of daily living. In fact there was a sentence flagging this assessment on the white board by my bed. So the expectation of the nurses was that I would be placed in a shower chair, and that they would tend to my needs. Would I please buzz for them when I had finished on the toilet. I was expressly forbidden to ‘transfer’ to the shower seat without observation and support (I was reminded I had not been assessed yet!). They left my toiletries, but waltzed off with my carefully prepared pile of clean clothes which had been balanced precariously on my lap while being wheeled to the bathroom. I felt stripped and infantilised. Ah well, “Take charge!”
Leaving to one side the fact that it was almost impossible to get through the sides of the wheelchair to clean my undercarriage properly, I did what I could, and then manoeuvred the wheelchair over to the sink to get shampoo and soap in preparation for my shower. I then realised I had left my soap at the other hospital prior to transfer. So I buzzed one of the nurses, and asked if she could please find me some soap. “How did you get over there?” I wheeled myself. “Right… (slightly miffed) Well, we don’t use soap here. We use this all-purpose special antiseptic cream that squirts out of a bottle on the wall when you press this slightly recessed button. We put it on these special sanitized disposable paper wipes that come in boxes of 100.” Well she didn’t quite put it like that, and she did actually go off and find me a small bar of soap from somewhere, for which I was grateful.
Showering when you are partially paralysed is a trial. I have described some of the rigmarole in the first weeks of being in hospital, but with the changes in my physical ability, I did not want to sit in a shower chair. I wanted to stand up and shower like any other human being. Now just hold it right there, son; one step at a time. Do things sensible and slowly. Take time to get it right.
I could not stand without support at this time. So the first step is to make sure that the things to stay dry are left by the sink for later. I had lost my clothes, but I needed one of my towels to stay dry for later. The other towel I placed on the back of the wheelchair. Then I manoeuvred the wheelie across the bathroom floor (the tiles can make this trickey) almost to the end of a seat fixed to the wall. Get too close and the wheelchair gets wet when you turn the shower on. OK, now I needed to angle the chair so that I could lift my body across to the seat as easily as possible. What next? Lock the wheels. Always get the front wheels pointing forward so you don’t tip, and lock the main wheels so that the chair does not move. Place the soap and the shampoo on the seat, leaving space for me. No PAT slide, and no slippery cloth, but I can do this. One outstretched hand on the seat, the other on the seat of the chair, lift and move. So glad my arms are still strong. Now lift and move, making sure I am securely on the seat. Now lift and move three short hops; good now I can reach the shower handle. Angle the shower head so as not to wet the chair, and away we go. Bliss and triumph mixed. No-one can see me weep in the shower. I can do this. Hope I haven’t left any small messages on the shower seat; must remember to clean it down once I am dressed and back in the chair, and before I leave. Ah, problem, no clothes! OK cover the essentials with a towel, put pride in the non-existent pocket, and press the buzzer. Not surprisingly I was told off – again. “Don’t do things until you are allowed to do them!” But I was being extremely careful… “That’s not the point. Its our job to see you are safe. What if something had happened? Who do you think would get into trouble? And it could slow your progress….” OK (suitably chastened) (but still triumphant) (OK and still pig-headed…).
Every day you learn a new trick. So its easier to have the soap and the shampoo in the soap dish on the wall; it does not then get in the way of you moving along the seat. So you manoeuvre the chair to do this before you get into the angled position at the seat. Take three towels into the bathroom on the chair (even if you have to save one from the day before). One for the hook on the wall to ensure it stays dry, the other within reach on the back of the wheelchair, the third over at the sink in case the others get sodden.
As my strength improved, I found I could do this daily ritual with increasing confidence, and a bit more speed. Overall the bathroom ritual used about an hour a day initially, but I got this down to 40 minutes in time.
Then came the day when my dear tummy decided it wanted to work while I was sitting having a shower. Mmmm, well, I could dry myself, move back onto the chair, and move across to the toilet. Mmmm, let’s try something different. There were rails all around this part of the bathroom. It looked to me like I could stand and take some small steps, carefully edging my way around the wall to the toilet. I had been practicing standing and walking in the gym, why not try? I stood. Then careful sideways step after careful step, I reached the toilet and sat with relief and a big smile. Job done, I stood, and moved back to complete the sitting shower. It dawned on me eventually that I could stand for my shower, so every day after that I did, holding on to rails. Triumph and tears. I am taking a shower like a normal human being.
The bathroom became such an important place. I still had some tummy troubles, so a couple of times a day I needed to stop whatever I was doing and get there as quickly as possible. I became quite phobic about the initial passing of wind (totally out of my control, and really embarrassing), because it always meant I had only two or three minutes to get to a bathroom. During the day of course this could be problematic, simply because bathrooms were in use. Luckily the unit had lots; you just had to find one. Bathrooms were allocated to rooms and numbered accordingly. This makes sense in the management of a large number of showers first thing in the morning. So our bathroom was number 4. At a pinch we could use bathroom 5, but there were dark looks if you used the wrong one when one of the staff wanted to wheel in a bed bath. Watching the routines in my ward, I worked out that the first assisted shower was at about 6 am. So if I woke at 5 am and went straightaway to the allocated bathroom, I would not get in the way of staff, and would be left long enough without interruption to manage what I had to do. I was trying to cooperate…
At night there was a different story. Bathrooms 4 and 5 became storage for all the shower chairs, mainly to get them off the corridors and out of the way; very sensible. Mmm. Bathroom 5 was always full of lined up shower chairs, though occasionally you could find a tortuous route through to the toilet if you were lucky. Bathroom 4 seemed to be used only occasionally. You might find 3 or 4 bathroom wheelies in there but, even from sitting in a wheelchair, these could be moved around to allow access. It was frustrating. I guess the system seemed to be OK, because at night everyone was nicely bedded down. If anyone needed help, they just called a nurse. I was increasingly mobile in the wheelchair, and if I needed a wee at night, I transferred from bed to chair (being very careful and measuring all the moves), wheeled down the ward to the toilet, transferred, and got on with it. But if your assigned bathroom is a store-room, what do you do? Well, use the next one. And if that is a store-room? Just move things around, or go and find another one.
It became irritating, particularly as there was often an urgency to get to the toilet. So I talked it through with a charge nurse who said she could solve it. She designed a beautiful A4 page with a picture of a wheelchair, and a statement suggesting the bathroom was left clear of chairs at night because there were mobile patients needing to use it. The notice was stuck to the door. Bless her.
I slept well that night until I needed to get up for a visit. The notice was still there. And so were all the stacked up shower chairs. Damn; no pathway. Go next door… Damn, at least 5 chairs. So, being me, and from a wheelchair, I grabbed a chair, worked my way backward out of the door like a train in reverse, and then gave the shower chair a push down the corridor. Back into the bathroom, grabbing another chair, back up in tandem, through the door, and another push. Clear pathway. Lock the wheelchair, stand with the help of the rail, do the job, clean up manoeuvre back into the chair and back to bed.
A nurse eventually peered through my curtain: “Are you alright?” Yes, I just needed a wee, and could not get into a bathroom. So I shifted a couple of shower chairs to create a pathway. “I thought something was going on; I saw these chairs rolling down the corridor, and thought there was a ghost about. Glad it was only you”. No recriminations… The bathroom on occasion was clear, but most of the time our nice nurse’s attempt to help was just ignored. Guess they had always done it that way…
When you are handicapped, cleanliness can become an obsession. As I am sure you will know, blokes are never the best at toileting, and they have a core belief that any little messes are always someone else’s problem. Their mother always did it; OK she grumbled a bit, but she was always there. Later their wife or partner did it; OK she grumbled a bit, but she was always there. It’s a sort of narcissism, probably not even noticing that you have made a mess, or if you have seen it, believing its not your job to clean toilets. I remember when I was a med student, living in a shared house with three other males, there were always little niggles about whose job it was to clean up, or about who was the last person to use the toilet to ensure it was their job. Another solution was to have a girlfriend to stay over. No, I won’t go there…
Hey, I know how complex it can be to clean up after yourself, and it is even worse when you are in a wheelchair. So what do you do if the previous occupant has been a typical ‘It’s not my problem’? You can get offended or angry, and call a nurse to come clean up before you use this particular toilet. Mmm, are nurses employed to clean toilets? You can storm off on your wheelchair and find another toilet that is cleaner, and leave the other one for the next lucky person to find and clean up. Or you can take charge, and just fix it. I have now become an expert toilet cleaner, and I take great pride in cleaning the toilet before I use it, and then great pride in cleaning up afterwards to ensure that the next person does not have to do a thing.
I am told that in Japan the profession of toilet cleaner is an honourable one, and great pride is taken in sanitary procedures. So beside the lessons I have learned from Karate, I now claim to be a member of the honourable all-Japan society of toilet cleaners. Professor of Child Psychiatry with an OAM as well as an MHa-JSTC.
Seriously, I have been put into service at home, and have a particular use when we have visitors – especially small children, - especially small male children whose direction finding is not yet fully formed. At work we have loads of students attending seminars in the Department of Psychiatry, and I am put to good use after one of these. The ratio of young males is not that high, but even though they may be future professionals (or perhaps because they may be future professionals), they seem to think they have a God-given right to mess up the one male toilet in the department. I do sympathise a bit at exam time when everyone can be a bit anxious. Bit actually that is no excuse, and us males can all take on the job of cleaning after our own little messes.
It is not just the toilet. Surely at home when you wash your hands, you clean the sink a bit afterward, put the soap back in the dish, and put the towel back on the rack. The public version of this might be to clean up after the wall-mounted soap dispenser dribbles on the bench (which it does – probably has male origins), make sure that your throw of the paper towel actually achieves its objective and finds its way into the waste bin, and if the tap splashes all over the place, dry up the area. I am not actually on guard, you understand. I don’t actually mill around outside the toilet trying to guess who thinks their mother or their girlfriend will clean up after them. But, unfortunately I use the toilet several times a day, always having some urgency, and that agoraphobic fear of letting myself down in public. So, I notice these things. Am I being obsessive? Maybe…
Whenever we drive to places, I have to try and get there a little early to ensure I can use the toilet and have some certainty about myself for the next hour or so. Its all getting better, but I am still struggling with it. Flying interstate or internationally is a trial in part for these reasons. So we use the valet parking if we can – just so I am nearer and don’t have to walk too far. I try to pre-book seats, so that we can go to the metal detector and frisk area as soon as we can. A delay here, and I can get into trouble. Those irritating people inspecting my bag and ensuring I am not carrying bomb-making material, or have not been near a quarantined farm can interrupt the process and cause problems. Once in Sydney, the delay (“Have you ever had this done before, sir? Sorry for the delay; I just need to put this little piece of paper in my special machine. Won’t be a moment.”) caused me to have a small leak before achieving the Qantas Club. Damn. Stupid officialdom…
OK. One final story. I also, of course, have to go to the toilet after a meeting, before going on to the next one, or before going home. I am a member of a state committee to do with Child Services, and they meet on the 17th floor of a skyscraper in the middle of the city. Toilets are just past the lifts and down the corridor a few yards. Good. I went after the last meeting, and it always takes time to be sure I am OK. As I entered the bathroom, the light came on as I went past a sensor. Clever idea, saving money. So I sat, and after 15 minutes the light went off! Pitch black; I could have been down a mine. The bathroom, being in the centre of the building has no window, so no natural lighting. OK, don’t panic, I am sure someone will come into the bathroom in a minute… No…. OK, how do I clean up when I can’t even see where the toilet paper is? This is not just gloom, to which the eyes can recover; it’s really dark. So, my iPhone has a light. Easy. Well, not easy, because it keeps going out every 15 seconds, and I really need three hands. Ah well, I managed. How do I check the toilet to be sure I meet my own standards? I can’t. I grope for the door latch, work out how it opens, and step through gingerly. I then walk carefully the 10 steps or so toward where I remember the sink to be. Miracle happens; I have obviously triggered the sensor, and a blinding light appears. I smile, and check myself out in the mirror while I wash my hands. Now, I really should go back and just check the toilet. Nah! On this occasion (perhaps a little angrily), I decide to leave it for the building’s MHa-JSTC. I am sure they have one.
I am due to go back to the building for another meeting tomorrow. Must remember to take the iPhone with me; I just downloaded the Night Light App. I am sure that lasts longer than 15 seconds.

A Haiku on Change

A new day has dawned
It's extraordinary
How often it does

Taking Charge
Thirteen
Six Months
Jan and I went to the cinema, sneaking off from an early work finish at 1.30 on a Friday, and joining about 10 other dedicated souls to see ‘Animal Kingdom’ a very powerful movie about a three generation family gang in Melbourne, one of the Australian centres of Wild West shootouts between gangland and the police. We parked down a side road, paid the ‘Pay and Park’, and walked about 500 metres to the cinema. We decided it did not particularly matter what we saw; it was just important to do it. We found the lift to the first floor, paid for the tickets and went into Cinema Four, finding the nearest seats on the gangway. We held hands all the way – along the footpath, across the pedestrian crossing, in the lift, and all the way through the film.
So what is missing here? Well, for a start, there were no crutches. I still have a Canadian crutch in the car, but really have not used it for about 2 months. My walking is still a bit funny; I am still ataxic with my feet wandering in a slight semi-circle when taking a step. But I feel much more secure; I can walk 500 metres really easily now without getting too fatigued, my right foot does not catch on the big toe (so my slight foot drop seems to have improved), I have relearned to loosen the knees and swing the foot through; I no longer walk as if my legs are wooden with blocks on the end. One surprisingly delightful thing that has happened over the past 3 weeks is that I can now feel individual toes. I have been feeling the changes bit by bit, as my nerves (or at least my perception) first reconnected with my feet, but then my sensation became more precise, almost toe by toe. Amazing! It does vary day by day. So, I seem to be very sensitive to salty food, which means some soups, Chinese food, Thai food, and salt on my fish and chips; the day after, my feet feel like the pads are all lumpy, full up, fat. Then gradually over the next 36 hours that changes back to the now familiar and delightful pins and needles. I guess I don’t worry so much about the negative changes, now; I have much more confidence that I am still making progress, and that within days it will show itself.
One other thing is missing. We got to the cinema and just went in, sitting for about an hour and a half. I did not rush off to the loo to empty my bladder before going in; I just had the confidence that I had been as we left work about 30 minutes before. I have been quite paranoid about all this, not wanting to have an accident, and needing to respond to bladder irritability and apparent fullness. So the first time we went to the theatre we saw a modern version of Hamlet. By the end of the second act I was almost weeping with a need to go, and the anxiety I might wet myself in company. I had thought I might have to leave part way through, walking down a couple of stairs and along the edge of the stage, stomping my (at that stage) two crutches and disturbing the actors. I didn’t, but the anxiety made the whole thing a trial. About a month later we went to see Nigel Kennedy and his band (yes, not the orchestra this time!). I was on a wheelie provided by the theatre, and for the performance transferred to two crutches for the last 15 metres. Again, staff had kindly placed me on the end of a row, and I had to go to the loo moments before sitting down, and then race off as soon as the interval arrived. I managed, did not have an accident, yet from time to time I would check on my status, and make sure I was OK; so it does interfere with enjoyment and that sense of getting totally lost in the performance.
But yesterday was different. I actually gave it no thought before or during. I did not think to check; there was no anxiety. This is such a profound change in a few months and marks the overall changes that have occurred, for which I am truly relieved and grateful. The irritability now only occurs from time to time, and I put this down to a religious pattern of taking Cranberry capsules every morning – said to be good for maintaining bladder cleanliness and asepsis, but also of course terrific for Vitamin C levels. The other thing seems to be an increase in capacity so that I can manage longer, but also drink fluids more often and in greater quantity. To be truthful, over the last few months I have been restricting fluids a bit – first thing in the morning before the 90-minute drive to work, during the day when I am back to back with sessions, and when I know I may not be able quickly to find a loo. I know this is not good practice, especially in our hot climate where you need several litres a day for kidney health, but paranoia about leakage wins out over logic, and a persuasive dietitian wife.
So today, the 3rd of July, marks exactly six calendar months from my sudden paralysis, and I know I am still improving.
I went to see the consultant at the spinal unit a couple of weeks ago, and he watched me walk without crutches; at the follow-up appointment 3 months prior, I had been using one crutch. He took lots of history, and was clearly surprised and pleased by my progress; does not want to see me for a year. For me the real triumph was to drive the car from work to the spinal unit, park in a disabled spot, walk the uneven surfaces, slopes and corridors I had wheeled down five months before, walk up steps, take the lift standing up, and find the consulting room with no help. It was like a reworking, an ‘undoing’, of all the pain and struggle.
An uncle of a friend of my son’s had reportedly had a similar episode to mine about 5 weeks prior and was now a resident in the unit. I had been asked if I would see him and reflect on things. I checked with the consultant to make sure I would not cause more trouble than I usually do. So, after my review, and with permission, I walked down the corridors of the spinal unit. No-one recognised me, no-one challenged me. I simply went up to the nurses’ station and asked for the patient’s room number. No checks, no drill! The nurses may have all changed since my (admittedly brief one month) stay, but I did recognise about three. No-one gave me a second glance; I was just a visitor. I spoke with Colin and his wife for about 30 minutes; I stood leaning against a cupboard, Colin in his wheelie, his wife on the side of the bed. His spinal injury was at a lower level to mine (T11 compared to T7), but he had been fitted with a new wheelchair, and had just begun the familiar physio program I remembered so well. We talked about his story and the sudden onset, how he had arrived at the hospital by ambulance, being totally paralysed from the waist down, bladder and bowel problems – the parallels were creepy. We talked about managing food, sleep and exercises, particularly the latter. I talked about my ideas of challenging your self every day, and pushing to do just that bit more than the physios prescribed each session. I guess for them (and I have subsequently heard the feedback indirectly), it was good to see someone standing, someone who was still struggling but determined to do the best that could be done, almost living a ‘normal life’, whatever that is. I don’t think they realized their gift to me, and its importance. In talking through such a similar process but in someone else, it re-worked my own process and began to distance it somewhat. Writing about it now, I am emotional about the ‘undoing’ process, the unravelling and reworking. I can see just how far I have come, and by comparison, I am really pretty normal.
Most of the time, the average person in the street might not notice my funny walk, or my slight tentativeness, my need for awareness of possible supports if I stumble. I can now go shopping for an hour or so, and not get too fatigued. I have been doing the odd chore at home, including going a couple of steps up a ladder to change batteries in the smoke alarm! I can help change the bed linen. I can get in and out of the spa bath using a rail; the really exciting bit is that I can lift my leg over the side of the bath. I go up and down stairs several times a day, though I still hold the handrail.
I am at work three days a week. We leave home at about 7.30am to get to Brisbane by 9ish. I work an extended half day occasional punctuated by trips to the osteopath, acupuncturist, physio, or some other medical process thing. I have a couple of honours students I see every couple of weeks, some PHD students (some of whom I see weekly, some monthly depending on their stage), and a couple of new research assistants for projects we have just started. I attend consultation liaison meetings and planning meetings. I am actually back seeing patients and their families, some of them follow-ups, and one or two new ones coming out of my work with the Burns Unit. I think the new patients would be aware of little of my history or residual problems; they might assume I have had an accident in the past. When at home, I write, do email, connect on Facebook (and my ‘Random Acts of Kindness’ group and ‘Sensual Haiku’ group); I Twitter, think, plot and plan. I have been more academically active in the last two months than for a very long time, completing reports, writing papers and beginning to complete this book (after all, human gestation takes nine months, so as of today I only have only three months left in which to finalise and birth this baby).
I am not yet back at Karate, which causes me pain. On the one hand, I like having my Tuesday and Friday evenings to do bits of email, think, write, or just watch Rugby on the television. But I miss the camaraderie, I miss the sheer effort and sweatiness of a couple of hours of full-on exercise, and I miss being able to teach. We did go back on three occasions, and gradually extended the time we were able to exercise, but after bowing in, we went to the side and worked alongside the newies and oldies (yeah I know I am an oldie, but I admit it rarely). Once stabilised in a stance, I could certainly do punches, blocks and anything above the waist. I could not lift one of my knees above waist height, and when it was there I could not really kick with any force in any direction. I could do the close stances (Haikudachi and Sanchin but not Nekoashidachi (Cat Stance’), but did not have the balance to do the long stances (Zenkutsudachi, Kibadachi or Shikadachi). So clearly I need much more leg strength and stability before trying again.
We are doing some bits in the mornings at home. One day we choose blocks and punches, another day we do stretches, and another we do stances and kicks. I can see improvement, and I am retaining quite a lot of technique, but I am not yet ready to give up my evenings. I actually told my Sensei (my son), that I probably will not go back. I am too old, my vision is still double at times, and my asthma still needs very careful control to give me the aerobic ability I need.
And then there are some residual problems. I still have pain in my ribs on the right side. Very little at the back now in the site of the original problem whatever it was. Little referred to the side now; just some residual numbness in the front of the right lower ribs, and an area of acid-y superficial burning pain below that on my tummy, stopping at the midline. The area is hypersensitive. You must understand that the pain is very variable. There are some days and even a recent week, when I had very little. Then something starts it off. Sometimes I think it is from sitting down writing in a fixed position, which harks back to my original thoughts about why I got paralysed in the first place. Sometimes tension sets it off – so if I am driving into work and the traffic is crazy to the point of constant vigilance I seem to be worse off than if it is an easy run. Sometimes it seems set off by Karate exercises, as if the working of the muscles round the rib cage is a problem. Sometimes I sneeze or cough, and that suggests perhaps a partially pinched nerve. I don’t know. It is just something to be endured. I have tried using paracetamol to control the pain, but don’t like to take them at all really, and certainly don’t want to get into a habit. When I had my neurology review, the neurologist suggested some painkillers that are good for neurogenic pain, but I refused them. I don’t need to get addicted to some rubbish; I will endure it rather than do that. When my son does acupuncture on the area in a variety of patterns, it certainly has an impact. Last week I was pain free for 36 hours afterward, and it was bliss to have a pain free night. But I can’t keep asking him for help; he is busy earning a living and looking after his wife and children. So, I will endure it. Meditation has been helpful in the past, but who gets time to meditate these days.
Another problem relates to the neurogenic bowel. It is just slow and erratic. I seem to be settled on my regular high fibre high bulking diet, and take 4-5 dried apricots twice a day. I stopped using Coloxyl and Senna regularly after the neurologist suggested there may be long-term problems from continued use. When I need to about once a week I take a dose. Mostly I go three times a week, and it is normal. But if I eat something that upsets me, then I may have trouble for several days. Again, this is a matter of confidence partly. I cannot yet distinguish really between the need for passing wind or the need to pass solids, so any sense of pressure makes me head for the nearest loo. Better to be safe than sorry. I am anxious about a possible accident in public, so I go to the loo more often than I need, and often spend longer in there than I need. Cleaning up is also a problem, because you are never quite sure when things are finished. Seeing as the bowel is slow, it seems to go on a bit. And I am anxious about possible leakage, so I try to stay until I am absolutely sure. One thing that some may find embarrassing is that I use women’s sanitary pads from time to time when I am in public. I just feel more confidence. Funny old life… Anyway, one more reason for not being quite ready to go back to Karate.
Back to the positives. In addition to the little bits of exercise on mornings we can fit it in before leaving for work, I also try to do specific exercises suggested by the physio to work on individual muscle groups. In the past it was leg flexors to get them lifting my feet higher and stronger, then it was everters because I could not do straight leg raising to the side, more recently it is adductors and gluteals to get balance right and improve my ability to balance on one leg and kick. As with everything in this life journey, if the physio says “Why don’t you do 10 each side and then…”, I do 12 or 15 depending on how good I feel. But, I always do more than they ask or suggest.
I have been working on an exercise bike about twice a week; wish I could do it more often, but there is just not the time, there are always so many things to achieve. The physio at the spinal unit started me off on a bike; I can remember the effort of keeping my strapped-on feet moving round and round. She had said I should do about 10 minutes; I kept it up for 15 minutes. After we got home we bought an exercise bike, and I emailed the physio to get a recommendation. She suggested I go on every day, and keep at the easiest level of difficulty and resistance, but gradually build up to about 40 minutes. Well, I have yet to achieve this. I can manage 35 minutes tops, which is marvellous because it allows me to listen to all three movements of a cello concerto (currently listening again and again to the Elgar). But I can do it, and I will eventually build up until I can manage 50 minutes. Then I plan to go to the next level of difficulty for some of that time, and gradually build up the resistance. Then perhaps I could try on my real bike on a real road… Wouldn’t that be something? Can I do it with my current level of proprioceptive loss? Don’t know. If you are riding, and suddenly have to stop and put both feet on the ground, is that possible for a paraplegic? Don’t know. Supposing I fall? Mmm... Supposing I do.
Which takes me to the last bit of this chapter. I have just had a conversation with a psychologist colleague I know, and he asked whether I thought my improvement is more about the physical progress, or more about the mind and how you think. You can’t really say that something is absolutely 100% anything, but ‘mind’ was my instant response. If for some reason I am tired or dispirited, it takes my mind off my need to focus on what I am doing. I might fall against a wall, or trip on a stair or some other potential minor disaster. I then get cross with myself, and a downward spiral begins – physically as well as mentally. Going back to bed may sound a bit drastic, but I have done that. Stopping and meditating can make a phenomenal difference to how you think and feel, which then in turn improves movement. I am sure this story is the right way round. Of course I am pleased by all the little physical changes. But at this point, my proprioception is not changing that much. Close my eyes for a few seconds, and my balance goes off, and then I am in danger of falling, no matter how good my muscle control. Overall I am probably doing very much better than I really have a right to be doing. I am sure this is largely because of my attitude of taking charge of my progress back to health. Equally I know that I must not get cocky. So far I have not had a fall of any significance; I want to keep it that way! So, I need constant vigilance, and I need to plan things toward the larger objectives, but I also need to plan each step (sometimes literally). And for that I need my mind to be the very best it can be - clear, positive, happy, thoughtful, goal-oriented, and in healing mode.
I suppose I should finish the chapter by telling you about the last couple of hours. It’s simple stuff… Jan and I and my 90 year old father, parked the car at Sylvan Beach car park, and walked about a kilometre along the bike path beside the sea to a small café on Pumicestone Passage. It has been a brilliant, sunny day. The first stretch of walking was laboured, and my control over my right hip was not 100%, so there was a little catch in my rather stiff walk. I felt ataxic and would have wandered all over the path if my ever faithful Jan had not held my hand and assisted corrections. My dad was definitely walking more freely than I was despite his recent bronchitis. We sat in the sunshine at the café, and had an ordinary little lunch watching kids and their families, the pelicans and seagulls expecting to find some food after we had left, and the bike-riders riding the path on which we had walked (I want so much to get back on my bike – soon… soon…).
Then we walked back. It was so much easier; the control was back. There was a flow. My knees were much less tightly held, and the follow through gave a flow I have been trying to achieve for a while. I could feel each of my toes being much more relaxed and providing a small platform from which to push off at the end of my stride. I felt a bit like I was flowing. Why? I don’t know. The practice I had gained on the kilometre going - a good warm up? Having lunch in the sun and relaxing, perhaps? The fact that my father paid for lunch? I certainly was happier, more content after lunch. I had certainly given up being so hard on myself. Such a nice afternoon… Without aids… (if you exclude Jan’s hand). Feel a bit like a snooze now. Probably be cactus tomorrow!

A Sensual Haiku

Female form floating
Buoyed by bubbles in the bath
Lightness of being

Sensual Haiku on Facebook

Taking Charge
Twelve
Sex
OK, this is another topic that you probably don’t talk much about in society, but it becomes a major problem when you have a spinal injury, and for us blokes it becomes an obsession.
You may or may not be able to imagine the relief that occurs when you have your first erection after a spinal injury. It may only be a pale memory of what you could achieve before, something about the size of a large thumb (alright a large thumb on a medium to large man), and you may not have sensed it directly. So you don’t wake up thinking “Ooh wow, that’s an erection”. There is an odd, vague, unfamiliar feeling down there, and you reach down to rearrange your PJs and almost by accident discover this thing that you otherwise can barely feel. You smile (actually several times…), and check it again (actually several times…). Of course it fades, but you still smile at the memory. Then of course you have a problem; actually several problems… Supposing it doesn’t happen again? Do you tell anyone? So, do you get all excited and tell your spouse that all will be well in that department after you leave hospital, and perhaps raise expectations that may not be fulfilled? Do you tell your mates (without of course revealing the size of the thing)? Do you tell your doctors? “I seem to have better control over my waterworks and, just in passing, I seem to have had a small erection”. Are your doctors likely to be interested in such things? Well of course they are, because it is a sign of recovery of the automatic pathways; a sign that spinal shock may be passing. I must admit I waited several weeks before telling anyone… Partly because I wasn’t sure I hadn’t dreamt it, partly because no-one asked directly and also because, well, it’s a private matter, isn’t it?
The first thing to say is that the erection may be of two possible origins. It may just be the outcome of a spinal reflex. That is you were sleeping on your tummy to avoid bedsores, and your pyjama pants got twisted and rubbed in the right (or wrong) place and the friction led to a small tumescence (what a great word). It is good news. It may flag that you will be able to have intercourse in the future, although it does not yet say much about enjoyment, orgasm or ejaculation.
The second origin of the erection is that you may have been having a dream with some fantasies of physical or sexual contact. If this is true, then it is very good news. What it may tell you is that the thoughts were translated into impulses in your brain that were able to get down through the pathways in the spinal cord, and influence the nerves in the much lower level spinal reflex. Think of it as a long spoon reaching down through your spinal cord to stir the sediment at the bottom of the glass. What this may mean is that ultimately you will get more enjoyment from sexual activity, you may be able to orgasm more freely, and you may reach the point of ejaculation more easily. Of course the thinking bit can be a two-edged sword. If your thoughts are distracted, if you are tired or worried, if you are having emotional problems with your partner, then the psychological impact may inhibit any spinal reflex and reduce the likelihood of a sustained and satisfying erection during love-making.
Anyway, I wasn’t sure whether I had been dreaming or what the content may have been. I was really pleased it had occurred, but I reflected that I was extra pleased it had not occurred while I had an indwelling catheter for my bladder; that might have been very uncomfortable. I was also happy it did not happen when nursing staff were changing the catheters; that would have been embarrassing for them and for me. I was also interested that nothing had occurred for about the first five weeks (for four of which I had had a catheter in place, and the next few days had been struggling to get some control over my waterworks after the catheter had been removed).
Anyway, I kept quiet, and waited. About a week later I had a second morning erection almost twice the size of the first. I still could not actually feel it; there was just a fullness to the point of discomfort in my PJs. When I touched it initially there was no touch sensation in the shaft except, strangely, I could feel the warmth from my hand. There was no local excitement, and no apparent need for release. It was just there. It lasted about 10 minutes or so without any further contact or encouragement. I suppose as a male I was delighted and extra relieved (because it was some proof that my body might recover, and I have always enjoyed my sexuality), but as a doctor I was observing in an almost clinical way (I just wanted to see what happened, what the process was). Either way I smiled again (and again). I was pretty sure I had not been dreaming, and certain I had not been fantasising (I was too bloody depressed about my paralysed legs to do much of that). So I reasoned that this was a reflex erection – good sign but not yet the best of signs. I could be optimistic, but not ecstatic, about the future with Jan.
Shortly after this I was transferred to the specialist spinal injuries unit, and of course prior to transfer had several examinations of sensation (light touch, pin prick, temperature, joint position sense, and vibration sense), to help develop a discharge report. No-one asked about erections, so I kept quiet. After arrival at the spinal injuries unit, I had a further (and overall the most thorough) appraisal of both sensation and power. This contributed to an ASIA scaling (something I had not previously come across (or had discussed with me) in the general hospital). The American Spinal Injury Assessment (which can be downloaded as a .pdf file ) examines every muscle group, and every dermatome (an area of skin supplied by a set of nerves from one spinal cord level), and then charts the whole thing on a single piece of paper.
In some ways, the most uncomfortable bit of this was testing sensation around the anus and scrotum - with a piece of cotton wool or a blunt object to get the light touch, or a needle to get the pin prick. Apart from general embarrassment, and also worrying that I might pass wind or something else during the examination, I had been suffering some hypersensitivity to touch, a sort of burning feeling when touched. This translated to an over-reaction to the pin prick – very painful, even when carefully done (which it was). Anyway the examination was completed without windy mishap, and the chart provided a very complete picture of my handicaps. It helped me overall to know specifically what I had to work on to try to improve power, balance and sensation. It also provided a very gratifying contrast when it was repeated four weeks later just before my discharge from the spinal unit; I could actually see on the chart where I had improved, but also see where there was still a lot of work to do.
As part of my belief about taking charge, I asked for copies of my ASIA assessments to take home, and from time to time (especially when I am having a down day, I can look at the charts to see visible proof of my improvements. It has also been helpful to have copies to give to professionals involved in my care in the community since my discharge. You can never quite trust that these communications occur, even with the best of intentions from hospital based professionals. Get as much paperwork as you can, and make copies yourself to take along for interviews and assessments.
Actually I discovered a strange anomaly when I asked for copies. Not only did I get the two assessment charts from the spinal unit, but a third chart appeared – a much earlier one from about 3-4 weeks after admission to the general hospital. No-one had discussed this with me, and I certainly never saw copies while in hospital. Strangely, I cannot remember the supposedly very detailed examination that preceded completion of this early chart. I am, however, utterly certain that no-one tested sensation around my scrotum and anus. I can also say that in retrospect, much of the chart was not quite right, and exaggerated my improvements (I am sure not deliberately) so it then looked like I had deteriorated between the hospital and the spinal unit – which of course was not true. I guess someone had done a lot of guesstimating…
In all of these assessments there was no specific questioning to do with sexuality and, on reflection, this is a bit strange given the importance of the topic, and the need for reassurance. Yet, there is also an ASIA scale for sexuality (and again you can download this if you are interested ). I guess other professionals may be just as embarrassed as I had been. Certainly, my physio who did the follow-up assessment was somewhat embarrassed. She was extremely careful and thorough, but when she got to the nether region bit, she muttered something about it being the job of the doctors.
So it came as a shock one night just before discharge from the spinal unit to have my self-proclaimed special nurse turn up at the bedside and, after a light social chat, dive into ‘questions that had not been asked’. She began with detailed questions about waterworks and bowels before moving on. This helped the initial embarrassment on both sides, I suppose. OK, she is a nurse and therefore professional, but I had never discussed sexuality with anyone from the point of view of being a patient. In particular I had never discussed my sexuality in graphic detail with an attractive young woman at 10 o’clock at night in the semi-gloom, knowing that my three room-mates might well be listening. I did not know whether they had been through this type of conversation, and was not absolutely sure it was standard practice; I just had to accept it was. “Had I experienced an erection in the last few weeks since the spinal damage?” Well yes, on about three occasions. “Could I describe what they were like?” So I did – in graphic detail. “Had I actually reached orgasm?” Well, no, I actually had not tried; to tell you the truth there was not much to work with (brief laughter), and very little skin sensation. “Had I had a nocturnal emission?” (what a wonderful phrase). Well, no I did not appear to have had any leakage, and had certainly not ejaculated (mores the pity!). “Had there been problems prior to the spinal whatever it was?” Well certainly from time to time there had been (shall we say) a certain reluctance to get totally awake. But I had decided this might in part be the result of waning of the male hormone testosterone that occurs naturally with aging.
I have never had a formal test, but had some other signs that this might be true (softening of facial hair, loss of body hair, a certain tiredness). Doctors rarely do things properly, so please don’t do what I did! I would advise anyone who wants to follow my path to do it properly and go and see a specialist. Being me (slightly arrogant to others’ perceptions probably) I read extensively, and checked out the Internet (of course). I discovered that you could access one of the chemicals known to be a building block for testosterone (the testosterone precursor, di-hydro-epi-androsterone or DHEA). It was almost an accident. Doing Karate very actively into my 60s, I have always tried to be aware of just how far to push my body, but equally I have always been anxious to avoid joint problems. I came across several articles, and then a video, extolling the virtue of DHEA for aging athletes – improving energy, and specifically protecting muscles and joints – in part through assisting the creation of testosterone which is active in these areas. I tried it for that reason, but also hoped it might stop me flagging at crucial moments. I would say it has helped. So, I told our nurse some of this, and that I had continued to take DHEA during my admission. She was unfazed.
We went on to discuss various tablets known to assist in developing strong erections. Again, I let her know that I had tried using these on occasion with some side-effects from one of them, but a generally positive result. I had been on the Net, and found information supporting their use in spinal patients. I expressed some anxiety about a rare syndrome occurring in some, where because of the disruption of autonomic nerves, the normal balance between parasympathetic (soothing) and sympathetic (fright, flight or fight) can be disrupted. This can lead to rapid pulse, facial flushing, dizziness and other more serious things, with occasional fatal consequences. She reassured me this was rare, but then rightly went on to check for any possible symptoms I had had. I was reassured that in due course I might trial some chemical assistance if need arose. All of this was a bit speculative, because I was not sure how the next few weeks would pan out. For a start, when I got home I would continue to sleep downstairs until I could physically get upstairs safely to try sleeping in the marital bed.
The very next day a young female registrar came to test those bits of my anatomy not included in the discharge ASIA test. I did warn her that she might be in the firing line for my lack of control over wind. Dismissively, she said it was all part of the job, and undeterred stuck pins in very private places. My hyperaesthesia (overactive nerves) fired off. Ow! Thanks for dobbing me in to the doctors, nursie! But then again, the result went some way to reassure me that down the track my manhood would be recovered.
Further reassurance occurred during my first few days of being home, with a further ‘stirring’ – not in response to anything particular, just one of those early morning happenings. I smiled, and later shared the story thus far with Jan. She smiled. Neither of us got very excited.
At last I made it upstairs, and that is another whole story in itself. Needless to say I had been working hard at the physiotherapy exercises to improve my thigh muscles. And having spent the first week at home also practicing walking with a stick, one afternoon, I clenched the bannisters in a death grip with my left hand and used my forearm to lean for security. Doing as I had been trained, and quietly determined, I lifted my left ‘good’ foot (the ‘good go to heaven’), and using one crutch on my right for support, I dragged the other foot up to meet it. Then the next step – left first and the right to meet it – until I had completed all 17 steps. I was watching a cricket match on TV when Jan arrived upstairs; “What are you doing up here; you were supposed only to do that under supervision” (a broad smile). That night I slept in my own bed.
There is so much relief and also anxiety in getting back to sleeping with your partner after 9 weeks. The bedroom had changed subtly and somehow looked more feminine, and on several mornings Jan stretched languidly across the whole bed; after all it had been all hers. The fact that my legs didn’t move very fast in retreat was an embarrassment to both of us. But it is so nice to get back to privacy, the familiar surrounds and smells of a shared retreat, the joy of watching a woman undress to come to bed. I was in heaven. And the triumph of getting upstairs left me once again teary. At that point I had no other expectations. I did have anxieties. How good was my bowel control? Could I manage to avoid soiling the marital bed? I worked at it, went back to wearing underwear to bed, and pads to assist if I thought there was the slightest risk of an accident. There was never to be one, not even a little leak, and for this I am very grateful, although it took many months before I was convinced enough to leave off the pads and the underwear occasionally (historically I have always slept raw). In contrast though, I did have to put up with the embarrassment of passing wind on several occasions; it just seems to sneak out. Apologies never seem to be enough to assuage the feelings, though Jan has been very accepting, and promises me that I never did smell very much anyway! (I never knew that!) What about urine? Well, I did have a couple of accidents, but they were not in bed; rather they were as I approached the toilet as if I was settled and ready to let go when in fact I was not. Very soon though I was convinced that, despite having to get up at least twice a night to thump off round the end of the bed to the bathroom with my single crutch, I would never leak.
With all the little anxieties it is not surprising that there was no action below, even one the size of a thumb. I was just beginning to despair a bit when one morning it happened. It was early, and I was anxious both to wake Jan, but also not to wake her. She deserved every minute of her sleep considering the pressures she had been under and the anxieties she had coped with. On the other hand… How would we be able to make love? Would ‘it’ be big enough to achieve anything? What would it be like to make love again? What would I feel (given my ASIA scores on lack of (or altered) sensation)? What would Jan feel, and could I make it a good experience for her?
I began to caress her, and she responded. My little happening began to get more enthusiastic. One of the problems with a spinal injury, of course, is that the muscles in legs and behind just disappear over the first weeks in hospital. Although there had been some improvement, all the physiotherapy and other exercise I had had to date just had not yet brought all the muscle back; so manoeuvring was a real giggle, and I needed considerable help to get into the right position. Embarrassingly, I then had to ask whether I was actually ‘in’! The only bit of feeling was around the ‘corona’ of the glans penis, and surprisingly that was almost painful – perhaps akin to the hyperaesthesia I was feeling in legs and feet. The more I moved, the more painful it got. Did I care? Absolutely not; I was ‘home’. There was no sensation in the shaft, or at the base of the penis, so the pain was all I had. I managed to get some movement going, and both Jan and I felt immense relief, even if I did not ejaculate. That would come later with rather a lot of hard work. Was it all worth the effort? You bet.
The second effort some days later was probably related more to wishful thinking than an erection to start the process off. I certainly was able to make Jan feel good, which was an important start. However, when things did not get going well, I thought it might be a good idea to use some Cialis, and tried half a tablet. Two hours later there just was no result; could not raise the dead! Disappointment and anxiety set in. However, several days later the erection was there, and suitably enhanced by Cialis, allowed us to have some fun – and feel sort of normal. I guess I got to learn that the psychological urge just could not get through the nerve damage on its own. You just have to wait for the reflex activity, and then capitalise. Everyone is different of course, but apparently you just can’t force these things.
Since those first efforts, there have been improvements. My musculature is improving from the exercise program. Nerve sensation is improving; the hyperaesthesia in the glans has reduced, I can feel warmth and the beginnings of touch in the shaft and at the base of the penis. So overall my confidence is better, even though reaching orgasm is still a trial.
I suppose the postscript is that we had our follow-up meeting with the Medical Director of the spinal unit yesterday and (shock, horror) late in the interview he actually asked about sexual function, the first doctor to do so. We went into great detail, at the end of which he was able to reassure us that we are on track, and there is likely to continue to be some improvement, even if no-one can tell us how much.
Has my spinal problem affected our marriage? Strange to tell, I think we have an improved relationship. The level of intimacy is better than ever, and we are able to talk about such detail without discomfort. So far we are managing well. Which is good, because at this point I am not sure I could manage without my wife, driver, companion, carer, and …. lover.