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Tuesday, May 26, 2015

Haiku on Dark/ Cold & Hide/ Break/ and Others

Dark

Dancing in the dark
Oh sorry, was that your foot?
Not so good at this

We have had dark times
Together we both survived
And sought out the light

Sitting in the dark
Letting troubled mind wander
Helps retrieve the light

Cold & Hide

Really cold outside
Time to hide under covers
And share some stories

In cold morning light
Peering out from the bird hide
We see some cute chicks

Cold sore on my lip
Really so embarrassing
Hide myself away

Break

Taking a small break
May have to give it all back
People are watching

Happiness strikes me
I have to break into song
Can't remember words

Momentarily
I get to see Mt Fuji
A break in the clouds

Others

Standing on cliff top
Counting lighthouse sweep seconds
Mournful fog horn sounds

You are by my side
Ever constant companion
Sharing air and life

Single lonely pine
Defiant on mountain side
After avalanche

Refrigerator
Solitary side of beef
Awaits the butcher

Sunday, May 24, 2015

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.


Friday, May 22, 2015

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.

Sunday, May 17, 2015

Haiku on Please/ Settle/ Improve/ Bare

Please

If it pleases you
Then it also pleases me
Pleased to continue

The Gods please themselves
That's why it rained on Sun day
And froze on Fry day

Please yourself, he said
Then stood by her, while watching
And learned quite a lot

Settle

Settled on settee
The two of them snuggled up
For 'The Winter's Tale

Feel just like a dog
Go round and round the basket
Before I settle

Sit in quiet space
Let all your thoughts flow and ebb
To settle your mind

Improve

Wanted to improve
Rise above my former self
Conquered the mountain

Improve your baking
Maybe some yeast is wanted
Watch the bread rise

After each sun rise
The light improves such a lot
Just what I wanted

Bare

Bare trees in moonlight
Stark contrast against backdrop
Monochrome image

Bare necessities
Some food, water, and your love
Everything I need

He had a quick shave
And said he would be back soon
The bare faced liar

Tuesday, May 12, 2015

Self-injury and Internet Usage: A research questionnaire we would like you to complete

I have a 4th year psychology student completing an Honours year project with me, at the University of Queensland, as part of the requirements for the Bachelor of Psychological Science program. Her name is Amy Kaukiainen. 
The research focuses on the effects that using Internet message and discussion boards may have on episodes or severity of self-injury.  Amy has recruited several participants via a student participation scheme at the university of Queensland but in order for her questionnaire to reach as many people as possible she is now beginning to approach discussion boards and social media pages dedicated to self-injury. As her supervisor, I am adding the information to my blog.
The survey takes approximately 20 minutes and is completely anonymous.  It is also possible to exit the study at any time.  At the end of the questionnaire we recommend online free published resources which may be helpful. If you are interested in being apart of this research please press the link below, which will take you to the beginning of the survey.  Thank you in advance.

The site is secure, and the questionnaire is totally anonymous.
If you have time to contribute, we would be very grateful.

Self-injury and Internet Usage Survey