Follow Graham on Twitter

Friday, April 18, 2014

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 2nd 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’.


  1. Thanks for the link on the FB page. Ugh, I put that Angry TMr question out there because every TM page or Post Polio page I visit is so bogged down with inspirational quotes and fuzzy pictures, sometimes I feel like I must be in the land of Oz! I have always been resilient, I am not even sure where it all came from. I am the oldest of 5 and wanted to be a nurse( as was my mother) for as long as I can remember. Funny too, like you, I remember looking at pictures of children with Leprosy in my mothers nursing books. All of those lesions, damaged tissue and they all had those black boxes over their eyes in the photographs. The pictures didn't sicken me, they made me sad and I could picture myself helping them. Well I never did get to the Lepar colony but did eventually finish my nursing education. I met TM in my freshman year. T6 down, recovered the ability to walk again and put up with all the CNS damage happily vs paralysis. And yes I was driven, spent my career treating patients and others "as I would like to be treated" probably something in the DSM about that I bet. Had a job that I loved and was great at, I was the clinical rep for KCI's Wound VAC in Boston MA for 15 years. So yes I could deal with the neurogenic B&B, neuropathic skin, thermal dysregulation, occ dysreflexia , You get the picture. As of 2 years ago I have had to leave my job due to fatigue that is impossible to sleep off, pain in my skin, muscles, tendons, ligaments, bones and joints. Sometimes it's hard to tell which is which. I have acupuncture, PROLOTHERAPY which has been a God send for my joint pain but is temporary, chiropractic visits, massage therapy, an inversion table. I'm not getting better. Of course this is all TM related. I know it, I've always known it. Symptomatic treatments are not a cure but have helped a little. I refuse to take a narcotic and be shown the door. So I have now become the dreaded chronic pain patient. In my own unscientific observational study, I believe that the human brain becomes saturated when listening to complaints at approx 3.5 seconds. That is not likely the case for a new patient presenting with a new mystery illness to investigate and solve. That is the fun and challenging part of medicine of course. I am currently taking low dose naltrexone. I had never heard of LDN before but I have had 2 years to recline on my bed with iPad in hand to try to solve my own mystery. I'm still in pain but I can tell you that my neurogenic bladder is better than it has been in > 30 years! And you still sound like an over achiever to me, even in your new part time schedule. I miss making patients laugh the most. I have kind of a quirky sense of humor but I could get them going sometimes, and that was fulfilling . I am grateful for all that I have been given, believe me, and I have had even more taken away. I just want some straight answers, I have all the sx in the post polio diagnosis - the polio. I am tired of seeking treatment after treatment with optimism. And if this is the new me, then maybe that will be ok. I don't really know, chronic pain and QOL ? IDK, I guess some people figure it out, we'll see. Thanks for the free psychotherapy session
    Best, Alicia Roy Smith

    1. Thanks Alicia. I agree that there is so much out there that is pat, or superficial, and probably does little to help others. Not sure whether my stories and comments about TM do either.... LOL But you have to try. I do believe there is a time for anger. There is a time for sadness. But then you have to accept what you have become and do the best you can with what you've got - whatever that is. That's life....