Study into how the brain adapts post-amputation

The Nuffield Trust's Oxford Centre for Enablement (OCE) and Researchers at the University of Oxford are involved in a major study which it is hoped will shed new light on how the brain adapts following hand amputation. Key people - Dr Tamar Makin and Dr David Henderson Slater.

I'm fascinated by this as I've had to relearn how to function many times. I've gradually acquired the perception that unless you can easily tangibly do something, at least for a while, you don't really develop an intuitive way of thinking about the thing you could do with it. This really changed my view point of musicianship - did funny things to it. I think I've got round it by playing all sorts of instruments with right and left hand - built up a picture of the lands beyond my limitations by shifting where the limitations are placed.

The study:
http://www.noc.nhs.uk/aboutus/news/article.aspx?id=190

Being able to play - what a relief

Gradually as time goes on I can play more as I want to - it's like the overwhelming drive is to be able to express myself within music through music, to be able to hear something in my mind and produce it through my hands. It's bizarre - I am not me if I cannot make music happen. What a bizarre need - why should shaping sound matter so much? Anyway it does. After just over two years of relearning to play harp from scratch to accomodate my right hand music is really becoming fun again.

I can improvise and think with the harp again. It's magic, like mercury flowing, all connected up. I can sense my links when I watch other players - now I can perform those movements at a similar speed I can feel them when I watch others players. That's very beautiful.

My sense of rhythm while playing has also improved massively. That really is a relief. This time last year I could not play a dance tune to speed to my satisfaction. Now there are some that I can and it doesn't take forever to get new ones to that point. Recently I even got my first freebie - when you suddenly can play a tune that you've never consciously practised, your fingers just know what to do. Magic.

Steph's crazy hand history and how it relates to her learning the harp

I started to play harp in Oct 2000. For about a year I tried playing from both sides and then decided that right hand top made much more sense (I'd played piano before and they have the same melody / accompaniment function). I really fixed that in my mind and got on with it from summer 2002. I started investigating harp teachers and got a very negative, cautious view point - faced with my right hand I had a harp teacher tell me to only play with two fingers (very limited!).

In March 2003 I first went to the Edinburgh Harp Festival. I met and heard loads of fantastic harpers, finally got some lessons from people who didn't write me off and who could see how much I wanted to play. I loved every minute of it and it completely set me up to carry on playing.

About two months later I really started chasing a hospital referral that had been hanging over me for two years - by the end of my first year at uni (summer 2001) it was clear that I had movement problems with my right hand, that the corrective procedures hadn't worked as the doctors had predicted. When I finally got the appointment that I'd been waiting so long for I was told fairly bluntly that corrective surgery on growth deformities (macro dactyly) didn't work, fingers were too complicated.

I was deeply unimpressed by the surgeon I'd been referred to, so started looking for other ways to get treated. I got referred to Royal Orthopaedic in Birmingham via my uni physio therapist - an appointment booked by my then boyfriend's mum for which I am very grateful. I was finally seen by my consultant in March 2004, in June 2004 I had an amputation of my extra large finger. The aim was to improve my overall hand function and specifically remove the mechanical problems I faced with harping.

In 2005 I went back up to Edinburgh, found a harp teacher to go to back south and got on with the job of building up speed and technique. I also started going out gigging where I could. By harp fest 06 I'd realised I'd maxed out my speed in my right hand for tunes and it wasn't enough. I dabbled in swapping hands but didn't fully until harp fest 07 - three x 1.5 hours a day for 5 days was enough to get past the initial pain barrier. I came home and realised that all the gigs that were lined up I was going to have to play left hand top - it was too confusing, seriously hurt my head to swap constantly.

So I stuck it and continued with the hard grind of technical work. Around this point I started sessioning massively and it paid off. However I also started getting soreness in my hands in general - a stiffness in the stump that was left from my middle finger made me almost use my hand in two.

Harp fest 08 saw me pretty depressed. In the months preceeding I'd been starting to build my right hand technique and getting pain and weird feelings. It was during this fest that I realised I needed yet another op - that I just couldn't sustain a wide enough range without being able to bend the middle stump, the hand has to work as a whole in order for the forearm to be relaxed.

So MayDay 08 saw me back at the consultants, after a month of absolute fear that there would be nothing they could do. I finally had a hand op Oct 08. During the summer I'd massively over played, and so banned myself from touching my harp for October. That's pretty much when I started this blog, out of sheer desperation to keep moving forward.

It was really really hard not playing, but going out to sessions kept me going and I started to perceive music in a different way - I'm a much stronger player now because of that enforced break.

It was a very difficult time because very close friends with whom I played a lot were suddenly cut off from me. A lot of our sense of closeness actually came from our playing - it's very intimate - and suddenly I'd completely backed off from it.

Oct - Dec was full of physio. During this time I also started sorting out my technique problems. I knew I had been setting myself up for a fall but the previous summer had been so mad - just head down, blinkers on. Now I started assessing and changing habits - sessioning less for a start. That's a bit of a sadness but not too bad - there is a balance in everything and if you aren't having fun doing something there's no point doing it to excess.

Dec 08 saw me meet a harper called Dominique Dodge. She's great - quick, accurate, loads of Scots repertoire and tunes, beautiful voice and sense for the Gaelic song. She pointed out one technical thing - where your carpal tunnel is most open - and just liked what I did. She gave me my confidence back. She also passed on the contacts for a chiropractor specialising in soft tissue overuse injuries. That has also been a major turning point.

So, for the past six months, I've been playing less, playing more slowly, but my overall speed ability has been going up. Wicked. It's finally finally coming together. I still have hand problems, I suspect I always will, but they feel managed and I'm calmer, not panicking. It's such a relief to be able to play how I want and there is still more to come. So the motto: be patient, be kind to yourself, be confident and keep looking for solutions: you'll get there in the end.

Hand update

Well it's four months on from the operation I had on my hand. My finger joint is way better, I have active movement to 90 degrees and passive to a little more. This has exceeded the aim of the operation. I have a stronger grip and I can get into playing the way I want too.

I still have to manage the workload on both my hands. While one hand was mildly disabled, the other hand had to compensate. Both were closer to their maximum workload. Even now I'm still building up stamina and rest and recovery time is very important. That said it's really positive and I can see loads of routes through any problems. I'm using mental practise a lot more and the best thing is... you can practise warm and cosy in bed!

Sabbatical

This period of enforced time off has been much easier to deal with if I consider it a sabbatical.

Wikipedia says....
"In the modern sense, one takes a sabbatical typically to merely take a break from work or to fulfill some goal, e.g., writing a book or traveling."

My goal was to gain the movement back in my hand. Initially it felt like I had no choice, I had to do this operation. I dislike the experience of an op intensely so I was pretty unhappy about this. However if I look on it as a choice then it becomes much less onerous.

This time off also provided a break, a stop. This gave me thinking time - this blog came out - and a chance to re-evaluate. It's made me change my musical practises, my musical practise. I have much more music in my head not just my hands now. It's the first time I've really felt positive about an operation recovery experience.

Operation recovery

Part of why I started this blog is to distract myself while I get well after a recent hand op. One of my finger joints had ceased up so the docs did what they could to release it and the rest is down to me.

Recovery goes:
wound heals (done)
start working passive movement
active movement
control
strength
passive movt - I can move the stump with my left hand
active movt - my right hand can pull the stump in
control - fine movt achieved
strength - weights, lifting, carrying at odd angles

All while being as relaxed and getting as much sensory feed back as poss

There's still a fair way to go,b ut it gets easier to live with at each stage. I can't say that overall it's less painful yet but the feeling is still changing and as long as it does that's ok.

While music is stopped via my hands it's coming out all the place elsewhere... like a river at a dam. It's fascinating.

Being a musician... with a deformed hand

I hadn't planned to mention this on my blog, but I realised that I couldn't write anymore without mentioning my hand.

I was born with a deformed right hand (giant middle finger and deformed ring finger) and have had several operations for corrective surgery. I rarely draw attention to it, certainly never when I'm performing. I want any audience to listen to me and judge me on how I play and sing, not what my hands are like.

In general I just get on with life and don't pay much attention to having different hands. In terms of musicianship I don't think it matters: I just have a different tool kit. As long as I can get what I want from that toolkit, then it's ok. Music is pretty forgiving of disability - it's all about what you can bring to the sound and what you do with what you've got.

I am more conscious of my hand more when I'm teaching because I am demonstrating. That said once I know a pupil it doesn't matter, we just get on with communicating. As I have one hand that functions normally that is my model for others. I've learnt to play twice, once RH melody, once LH melody (I play LH melody, in trad harp that has 60-80% of the work).

Sometimes doing a job which is so dependant on my (deformed) hands still strikes me low. I don't know any other disabled musicians personally, though they clearly exist. I feel it odd that my vocation is at such odds with my body but then I remember that there are also disabled athletes and dancers and I feel much better.

Future Link - musicians with disabilities
CandoCo Dance Company - is a contemporary dance company of disabled and non-disabled dancers.