On Transverse Myelitis: Accepting your New Self and Direction

Most of us would think that life travels in a sort of straight line, with occasional deviations. Many of us would believe we have rights as human beings. Most of us would think that we are in charge of our lives, and that if things don’t go our way, then it is unfair. None of that is really true. Life is a series of forks in the road, and the direction we take is often related more to chance than to our design. We are not in charge, however much we want to be. We can take some control, each in our own little corner of the world, but as individuals we don’t have much in the way of decisions about war, crop failures and famines, epidemic diseases, cyclones, tidal waves or earth quakes. We do the best we can under the circumstances.

When I reflect on my life and career, I am so aware of some of the forks in my own road so far. At 14 I was somewhat forced by my parents to go to ballroom dancing classes because it would ‘be good for my social future’. I thought it was a stupid idea. On the first occasion, this perfectly proportioned beautiful blond walked through the door with her sister. I was smitten, could not get her out of my mind, and started going to a junior drama club to enable me to be close to her. Well, as of last week we have been married 49 great years.

At the young age of 12, I had an ingrowing toenail removed by my local doctor, and demanded to watch, despite his protestations. I was intrigued how he knew just where to place the local anaesthetic: “You learn that at medical school”. With no doctors in the family, no prior personal experience of medicine, I decided I wanted to be a doctor. Despite having been through a clear episode of depression at 13, and becoming somewhat lazy at school, at the tender age of 16 I found myself in front of 5 eminent doctors being interviewed from a place at King’s College Hospital medical school. I must have been incredibly naive in my answers about school life, my life in general, my average sporting ability. My answer to one question they asked me may have made the difference: “What books have you been reading lately?” One of the books I raved about (at 16!) was Freud’s ‘Psychopathology of Everyday Life’ a brilliant every-day-language exploration of slips of the tongue, mis-remembering, and dreams. It had been lent to me by an older friend at school, by chance. I gained a place at Med School; later I became a psychiatrist.

In 1973, Jan and I went to a conference on psychotherapy in Norway, as you do. Well, it looked interesting, we had never been to Norway, and we needed a tax-deductible break from being in a busy general practice. We had such hilarious times with a group of Australians, and they raved so much about psychiatric training and opportunity in Australia, that we emigrated in late 1974.

There is so much chance in all of this. You never quite know where it will all lead, and what other disasters may follow as a result of that fork in the road (but that is all another story). The point I am making is that you take decisions for what appear to be sound reasons at the time, even if the ideas were planted by accident. All of that is a long preamble to Transverse Myelitis.

It happens swiftly, often for no apparent reason, and usually with no known cause (as far as we know at this juncture). You are paralysed, each slightly differently depending on the spinal level and the extent, and whether a doctor recognises this rare syndrome quickly enough to put you on steroids – which appear to have some impact in reducing the long-term problems. There is little you can do in those early days. You accept that the doctors, nurses, physios all know best. Some of us get depressed, and just want to disappear down a worm-hole until it is better. Others of us get angry, want to get even, and rail against the whole damned thing. Sometimes, this is useful in driving us to overcome disability and do our damnedest to get back to the old person, and the previous life.

The truth is that this Transverse Myelitis is a fork in the road. We don’t have any right to a total cure. We don’t necessarily have much in the way of control over how we progress. Somehow we have to come to terms with ‘the new me’. Somehow we have to accept this, and work out what we can do with ‘the new me’.

I am lucky. Four years down the track, and I am still walking (sort of, and not very far). I occasionally lose balance if I turn too quickly or get distracted. I am wobbly on my feet, and walking down a corridor I must look like a ship at sea sometimes. I have lost considerable bulk and power in my calves, thighs and buttocks despite striving to continue to walk, climbing stairs several times a day, and getting on an indoor bike once or twice a week for 30 minutes. I have residual urgency and hesitancy with waterworks, which makes travel difficult. I have a slow bowel, which gets irritable from time to time and ruins my carefully set routines. I pass wind occasionally in public, which has made me slightly agoraphobic; I don’t very much like being in public places.  I have chronic right-sided chest pain, which I can mostly ignore, meditate away, or for which I take a couple of paracetamol tablets. I used to be a 2^nd Dan Karate teacher; now I am not.

I can still supervise staff and students, and they accept that I may have to rush off to sort myself out. I continue to consult as a child and family psychiatrist, and seem to be effective; I am certainly busy in the couple of days a week I can manage before I get exhausted. But I am not me as I planned to complete my professional career. I have taken a new pathway, and being angry or distressed about all of this does not help. I just have to get on with it.

I chose last year to stop doing all sorts of things I could no longer really manage. I used to rush around the country, sitting on committees and pretending to be important; I don’t do that any more. I used to attend numerous conferences every year; I don’t do that any more. I was always flying somewhere; I don’t do that any more. I used to be on boards and committees, chairing this and that and the other; I don’t do that any more. I used to give up to 50 presentations a year, often to community groups, and often after hours; I don’t do that any more. I used to try to influence media by talking on television and radio, and writing for newspapers and magazines; I don’t do that any more.

The bonus has been that last year in conjunction with various research groups, I completed and published about 20 professional journal articles, and 6 books. I just manage a few undergraduate and graduate students, a few residual pieces of research, and a few colleagues I mentor. I have had time to play on Facebook, Twitter, and this blog. And, I have had more time with my beloved Jan.

Am I the same person? Of course not, but ‘Yes’. Am I happy? I still get distressed about my symptoms, and work hard at trying to reduce their impact. But, ‘Yes’, I am happy and constructive and satisfied. I am not the lucky medical student, or the much-loved family doctor, or the striving psychiatrist, or the ‘national’ expert in youth suicide prevention, or the media tart. I am choosing to do what I see could be important for my family life, my life, my body, my mind, and my integrity. I have embraced this new pathway; unexpected as it was. I am a slightly different me. And that is ‘OK’.