Transverse Myelitis and Mindfulness

Just began to read Dr. Norman Doidge’s new book “The Brain’s way of Healing”, having rescued it from my wife, who could not put it down, and kept saying: “Wow, really...?” every few pages. The book has about 80 cases of various illnesses and problems involving brain function, and reflects on a variety of approaches that seemed to provoke sometimes miraculous cure or improvement when many physicians had given up. We also went to listen to Dr. Doidge at the Brisbane Powerhouse, where he was interviewed for radio by Paul Barclay for ABC, in front of a packed audience.

Of course I was reflecting what it all meant for Transverse Myelitis, and how it might help those of us who are chronic sufferers, or who have residual problems. The book is complex, and from the Western medicine point of view does not have much in the way of randomized controlled trials to back up the stories.  But the cases are persuasive, and mention a wide range of perhaps ‘alternative’ therapies – including the use of low dose laser therapy, massage developed by the FeldenKreis school, and a whole lot more. You will have to read the book to make up your own mind.

For me there seemed to be a central underpinning – the power of the mind when we know how to harness it. Calling it mindfulness may be too simplistic, but as I noted in my own book (“Taking Charge: A journey of Recovery”), I learned meditation many years ago, have applied aspects of it to my own illness, and I believe it has been of assistance in a variety of ways.

Let us start with pain. Like many of you, I suffer from a chronic band of neurogenic pain from the centre of my back round under the right should blade and ending up to varying degrees at the sternum. Mostly, it is focused at the side of my chest, and there are two or three spots that are extremely sore. Four things appear to help. First, when I take my afternoon walk (and am not just sitting in my favourite chair pretending to write another book), I return refreshed, tired, often triumphant at having taken a new challenge, AND virtually free of pain. That lasts through the night into the next day, or even longer. Is it the exercise of the walking somehow freeing up my chest? Don’t know. Is it producing endorphins in my brain that make me not feel the pain? Don’t know. It works. I do it.

The second thing that helps has been Acupuncture. I won’t go into meridians and such because I am not an expert, and not totally sure I understand them. However, acupuncture on one or more of the sore spots (and a few others) seems to reduce the pain – often for a couple of days. I have learned a form of amateur acupressure – pressing a finger strongly onto the pain spot for a minute or so. This seems to work almost as well. It doesn’t cost and you can do it surreptitiously. It works. I do it.

The final thing seems to be mindfulness. I often don’t make the opportunity to sit and meditate formally for 20-30 minutes as often as I should. But when I do, it really clears my mind, improves my demeanour, AND relieves my chest pain for some hours. One aspect of mindfulness is to try to focus on the pain spot, and keep trying to find it. I say this, because pain is a ‘slippery little sucker’ and seems to disappear from the spot you focus on, sliding up or down and to the side. Eventually the pain does seem to disappear and I can get relief for up to half a day (depending on what I am doing). Focus works, and or just a general meditation works. I do it (even if I should do it more regularly).

The last thing I know about is massage. My dear wife will give me a 15-20 minute back massage about once a week, mainly focusing on the sore spots in my back. I tend to fall asleep. If it is during the day, I wake after 30-60 minutes with a general ‘buzziness’ (can’t describe it any other way) which can last for 30 minutes or so and happens to be very similar to the ‘buzziness’ I can get from a general meditation. I like it. So when I am particularly sore, it can really help.

But there may be more to this than meets the eye, and more than I have experienced (I think). What Doidge seems to be suggesting is that the brain, and by implication the extensions of the brain (ie the spinal cord) may make positive change as a result of certain techniques. Maybe if we could visualise pathways and blockages in the spinal cord as part of meditation, we could slowly remake or revitalise some of the old connections. Food for thought?

I can hear many of my doctor colleagues saying “What a lot of Crap!”. Well, maybe. But most of us get desperate enough to try all sorts of things. As far as I am concerned, Meditation does not cost me, and definitely does me no harm. Can I prove it has done me any good? Not really. But I do know that I can keep my own pain under fair control. I think it has made me a nicer person. I suspect it keeps my anxiety and depression under control. As an experiment, I am what researchers call ‘N=1’. But I am 5 and a half years down the track, and I am still managing to cope with this bloody disease, even if I do seem to deteriorate a bit from time to time.