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’.
