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Sunday, October 20, 2013

Transverse Myelitis and Grief

I have had TM now for nearly 4 years, and I am aware just how much I have lost. Of course with loss, comes grief.

This is an odd thing to talk about in this way, perhaps. Normally we associate grief with loss of other loved ones. But having lost parents, aunts, cousins and a child, I have come to understand the process of grief, and I think the process is very much the same - whether we lose another person, or a part of ourselves.
Elizabeth Kübler-Ross in her 1969 book 'On Death and Dying' suggested a model with five stages of grief: denial, anger, bargaining, depression and acceptance.
I know I can remember the denial in the first few minutes and again over the hours to come as my paralysis spread: "I don't believe this is happening to me". "I am so fit for my age, I am a black belt in Karate, I was teaching last night". "This cannot be happening, I just don't believe what I am sensing in my body". I think the steroids given to me over the first few days helped this process: "If I just lay her and have a rest, it will all come good; my powers of recovery have always ben so good". I can remember talking with friends and family about "When I am better..." and "After this is over..."
In fact there was almost a sort of euphoria, laughing at myself when I could not do something - like turning over in bed - mixed with a determination to do what I had to and maintain 'my standards' - personal hygiene, family position and relationships, friends in reality and online  - and keep doing what I saw as 'my commitment to child and adolescent psychiatry and suicide prevention' and 'my research students' at all levels.
Probably there were left overs from my childhood (as I have described in my book ‘Taking Charge: a journey of recovery’ ). For instance, my father instilling in me the message: “There is no such word as “Can’t!”
I am aware that I have been recurrently angry about my paralysis. In the initial stages, I was angry with myself for getting to a point of exhaustion trying to write an editorial for a journal I edit. I was angry with myself for the previous night’s karate session, where I had been demonstrating takedowns with the young people, who got really excited and kept queuing up for another turn. Could I have injured myself? It didn’t feel like it, but who knows what goes on inside the spine, when an old man pretending to be a karate teacher twists once too often.
Then I found myself increasingly frustrated and angry with emergency staff who seemed incompetent and uncaring, and later some of this transferred to the system of care in the hospital I was eventually admitted to. It was nobody’s fault that it was nearly Christmas and people wanted to take leave. Mostly, I was just angry that my body was letting me down, with paralysed legs, and bowels and waterworks over which I had no control. And so on. Waves of resentment that I had given so much of my life to medicine and helping others, and nobody could really tell me what had happened and what I could do about it...
Then you begin to bargain with yourself. Perhaps if I was a better person, I would get better more quickly. Perhaps if I really worked harder or longer at the physiotherapy it would all return to normal. If I stopped being so resentful would it help my recovery? You search through parts of your life to see whether there is something that you did wrong, for which you could make amends. If only I had meditated more regularly, then my health would have been better; OK so from here on in I will meditate every day to restore my health. Was I being punished by some higher power for my arrogance or meanness, or laziness. Well then, if I improved those things would the universe help me recover to go on with my life’s work. Should it not be MY life’s work, but rather God’s design? What would I have to do to make amends?
And then recurrently you get depressed. I have always told my patients that one way of getting over depressed feelings is to do something; don’t just sit there. But if you can’t walk far, get exhausted from physiotherapy exercises or swimming, can no longer help much around the house, get exhausted from driving, and then from part-time work, how do you DO things? So every little backward step, every perceived failure, or deficiency, makes you depressed. You feel useless, incompetent and in the way. Yes, in the way! I am slow in moving, and so often find myself in someone’s way. I need to get support from kitchen bench tops when helping out, but it is always THAT cupboard that someone needs to get to. Bowels are slow, so your appetite fades, and you really don’t feel up to eating much at home. You don’t want to be in company, that ‘lesser’ me, so you don’t want to go to restaurants or galleries or shows. In any case, you have to plan for all the toilet stops everywhere you go, so you spend more time in there than anywhere else, and public toiles are the pits. And on and on... What is the point?

And then there are good days. You have a small personal triumph, and that improves your view of yourself. Over time you get used to walking awkwardly and slowly (“there are, after all, others worse off than you”). You get used to planning the loo stops. You adapt, and from time to time accept that you are doing the best that you can for and with the new me. You begin to do all those things you wanted to do, but never had the time because you were jetting all round the country pretending to be an important speaker at conferences. You begin to accept that the handicaps are part of the aging process, and it is OK to stop pretending to be full of youthful vigour.

What interests me about transverse myelitis is that this cycle of shocked numbness that you have reached a plateau, followed by rage that you should be doing so much better, followed by more bargaining about “well if you did this, would you improve”, and then more ‘depression’, just goes on and on... It is watered down, and eventually there is more acceptance of your new reality, and an attitude of ‘just get on with it’. But the rates of acceptance are different for all of us...

My own opinion is just that this is all OK. We have to not only grieve and eventually accept the physical losses and the resultant new expectations, but we have to accept that it is OK to be angry and resentful from time to time, and depressed from time to time, as long as it does not get out of hand. If that happens we have to accept that we may need help from others. Sometimes people, grieving the loss of a close person, believe that it is such a ‘normal’ process in life that we ‘should’ be able to just deal with it. That is just not true, and from time we all need help. That is OK, guys. Well, this strange disease has led to losses – physical and emotional. We cannot be expected to smile and be wonderfully accepting all the time.

If you are feeling really awful, please pocket your pride, and seek help from friends, community resources, or professionals with the skills to help.


  1. Thank you Graham, that was an awesomely helpful read. Best wishes, Tracey Kay

  2. Hi Graham, it's Megan (Tones). I used to work for you at an RA on the ANCD Young People and Drugs Project back in 2004. Tracey told me about your blog, and I am very sorry to read about your diagnosis. I don't believe I ever told you when I worked for you, but I am an adult survivor of congenital heart disease. Since I left UQ, I have had some complications from this and had more surgery in 2008. I am now stable but with congestive heart failure. At the moment I am still working but have many of the feelings you describe (right down to the public toilet issue due to diuretic therapy - it's annoying huh)? I have found online support groups to be a great help and comfort. I love this post and am so glad to see that you have kept your sense of humour and can't wait to find your book! Take care - and thank you for giving me my first real job - I have many fond memories from that time in my life!

  3. Thank you Graham, Your words strike a familiar cord with me too.
    I have struggled with feeling very let down by a health system i
    work in. It is so hard to feel so let down by not only your body,
    but also the very system that you have dedicated your life to. Having
    to accept being treated in a manner that you yourself would never do.
    Doesn't seem right somehow, but here we are. Best wishes.

  4. I posted this on my daughters TM recovery FB page so that friends and family can try to understand how her diagnosis affects her, she was 10 at onset. I hope they can understand your words even though they seem to not understand or accept mine. Thanks so much!