As the introduction I wrote:
"This is a book about recovery from Transverse Myelitis, a spinal condition that can lead to permanent paralysis. But in this case it is about being a doctor as the patient for the first time, and the problems coming to terms with illness and the medical system seen from the inside.
You begin with jottings about funny things that make you
giggle (when your life is in tatters, and really nothing to laugh about), then
you add all sorts of notes about happenings that make you really angry, and
then you begin to realise that writing each day helps. It puts the personal
chaos of being in hospital into some sort of perspective, it settles you to
rest a bit more, it reminds you to tell visitors the latest bizarre chapter, it
helps you to plan what may be necessary for your recovery. So these jottings
(some would call it journaling, but that is becoming as hackneyed a word as
‘journey’) reflect my own process of coming to terms with a new me during the
last three years.
A core issue in this whole thing has been the experience of
being a trained psychiatrist coming face to face with personal illness and the
realities of hospital medicine. You begin by letting go and putting yourself
utterly in the hands of others whom you believe will sort the problems out.
Thinking through your own history, putting together some sort of diagnosis and
working out best approaches to therapy and recovery become just too hard in
those early days. You want someone else to do all that. It is not only the
spine that goes into shock; your mind wants to shut down – that process of
‘conservation withdrawal’ so important in the early stages of recovery.
Then you begin to sense that others don’t know how to
approach you, or expect you to know more than in reality you do. And later
there is more irritation when you realise that hospital and medical staff may
be groping toward answers themselves, and are perplexed about the extensive
list of possible causes, and unsure how to recommend therapy in a condition
that is complex and for which there is little clear research to back
judgment. Finally you realise that you
have to play an active part in your own recovery, seeking answers from anyone
who will discuss issues reasonably, trying things for which there may be
limited western medical research, and pushing to do much more than any
professional is likely to demand of you.
Seeing the health and hospital system, not from the
perspective of a respected clinician walking into a ward to provide a specified
expert service, but rather from the perspective of ‘a patient’ (particularly
someone who initially can do very little for themselves) you very quickly
become an object – in my case ‘the spinal in bed 56’. You become a pulse, a
blood pressure, a set of reflexes, a case of clonus, a pair of eyes to be looked
into – but not to perceive the soul, only to check whether the pupils respond.
This objectification quickly becomes irksome, and you begin
to battle to maintain dignity, self-control, or just ‘self’. You note how the
routine of meeting bureaucratic expectations affects every clinician’s
practice. Watching people struggling to meet the pressures which derive from a
system that is primarily risk averse, and being swamped by repetitive
procedures which do nothing for patient care and everything to ensure that all
the boxes are ticked, is traumatising. You change rapidly from a narcissistic
“How can I improve the care I am being given?" to “How is any patient in
this place, without medical training or perhaps without interpersonal skill,
and without the privileges I have come to expect as essential, ever going to
survive this process?”
I wrote this book simply to tell my story in as
light-hearted way as I could. I did not set out to abuse people who tried to
care for me, nor did I ever consider I would find myself so critical of a
health system in which I work."
I did a search to find out what else is there to help you when you are struggling with TM, and found several other books which may be of help to you. If you need help to understand and manage this bloody illness, try my own book
Taking Charge; a journey of recovery (if they have accepted it.... LOL)
or one of these:
Getting Better: My Journey through Transverse Myelitis and Lessons for Health Care Professionals, Patients and.. by Claire Bloom and Keith Launchbury (Jan 3, 2011) - Kindle eBook ( $9.99 Kindle Edition)
Transverse Myelitis: Our Stories
by Kevin D. Weilacher (Sep 14, 2011) - Kindle eBook ($9.95 Kindle Edition)
Living With Transverse Myelitis by Darren Jewell (Oct 27, 2012) - Kindle eBook ($2.99 Kindle Purchase)
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