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Friday, November 1, 2013

Transverse Myelitis and Self-help Books on Kindle

I have just taken the plunge to put my book about Transverse Myelitis: 'Taking Charge: a journey of recovery' ( up on Kindle eBooks as a digital download You may be able to buy it for download as of tomorrow....
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:

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)
by Angela Algiere (May 18, 2013) - Kindle eBook ($12.97 Kindle Purchase)

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