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Saturday, May 23, 2015

Transverse Myelitis and Mindfulness (2)

In a previous post, I suggested that mindfulness might be useful in TM. I want to explore that a bit more from my strictly personal perspective. I realise we all have different levels of TM, different physical problems, and different experiences; but I am hoping you will get something out of my thinking.
I cannot totally feel my feet and lower legs. They feel like they have thick woollen socks on, like the school socks I can remember from being a small boy. I need to get up in the middle of the night and go to the toilet 2-3 times (partly TM, and partly being an old man – no evidence of infection, and not letting anyone near my prostate). I cannot feel my feet. I am paranoid about tripping, given a couple of times in the past this has led to falls. So, waking, I sit briefly on the side of the bed and focus on my feet, wiggling the toes as much as I can, and stretching at the joints, including my ankles. Just a few seconds worth. I stand and get my balance and some night vision mixed with some light from my iPhone. When confident, I step round the bed and take the 24 steps to the toilet, consciously lifting my toes to ensure I don’t trip, and using the corners of a chest of drawers to be certain.
This is all mindfulness. I am slowing down the process of ‘rushing to the toilet’ taking into account my handicaps. I cannot rush. I think about each step, am aware of the corners of the bed, and sometimes use door frames just to give me some security when I lurch.
Some might just call this ‘being careful’, and of course it is – but when you are being careful, you are being mindful.
There is sometimes a lot of preparation in ‘being careful’. So when we went to The Powerhouse the other night (to hear Norman Doidge), I literally visualised the process of getting there, the parking, the darkness which usually surrounds the place, the choice over taking a lift versus using the stairs, how to manage crowds (slow, stand steady and wait for them to do their thing, use a wide gait with one foot about 9inches behind the other (what is known in Karate as a ‘Sanchin’ stance) for the time when someone nudges you, make it obvious that you are handicapped by using a walking stick). Sometimes the planning process can be tiring, but it gives you so much confidence as each step of the journey unfolds without a problem. Talking of steps, I have previously written about trying to walk every day, but what I have come to learn is that I only have a certain number of steps in me for any given day. So the mindful way to approach the evening was to ‘save’ most of my steps until we went out. I am sure I enjoyed the evening much more – especially as there were no serious problems and everything went to plan. And I was far less exhausted than expected the next day – and able to do a full days work at or clinic.
As I gently ease into retirement, I find myself with much more time to think about meals and eating (except of course on our two consulting days a week, when it is a bit back-to-back). So a couple of interesting things are beginning to occur. I find I eat a bit more slowly than others, and certainly more slowly than my earlier days. The result is that I am enjoying the food more, I am aware of different tastes, and really enjoying the textures I find in a meal. I have always been prone to indigestion, mainly because I rushed meals. And I often had problems with acid reflux. As a doctor I knew what was causing it, but I just took antacids, and got on with the day. Don’t do that any more...
I guess the other bit of mindfulness is that I write (obviously, duh!). More than that, I mull over what I might want to say. Never had time to do that in the past. I was always under pressure to write some letter or editorial, and could feel my shoulders rising as the hours stretched out at my keyboard. In my book ‘Taking Charge’, I noted that I was writing as I was developing the earliest symptoms of TM, and I always wondered whether the stress caused some defect in my spine. Now I find that I am writing relatively stress free.
But it is more than that. Some of you will know that that I write 2 or 3 little Haiku every day, and put them up on Twitter with a link to my Facebook pages. The process begins with a prompt word provided by someone else (on a list called #haikuchallenge). I spend some time mulling over the word and its associations or meaning to me. Sometimes Jan and I discuss the prompt word over breakfast, and we use her associations. What follows is the rigour of then forming a three line 17 syllable poem that reflects an event from our past, or a wish we have for humanity, or just a comment on the day. This process is creative and sometimes beautiful, and very peace-giving. Sometimes we wonder where the ideas come from; it feels almost as if you are channelling the thoughts from somewhere else. Probably one in three of the Haiku are about reflection, about mindfulness. But the process of reflection and writing is mindful. It sets me up for the day.
How could we apply this to TM? How could we influence the process of TM? Not sure I know. But what I do know, is that I am much better despite my TM, when I am mindful, rested, happy. My TM irritates the hell out of me when I am stressed or grumpy. And yes, it is that way round. I am far less anxious, or depressed, when I can give time to mindful activities. Is it changing my long term prognosis? Don’t know.
I would really like some discussion on this topic, and will publish what you have to say.

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