Questions asked by Ataxia UK for an article in their magazine. Their questions (in bold), my answers
You’ve done a wonderful job in capturing mind-set as treatment; I wonder if you could write a bit more for us about how having a creative process/hobby might help people with ataxia reach that mindset? Unfortunately not everyone with ataxia can control their worry or fears that come with the condition, so it would be lovely to have something to share that’s worked for you.
In terms of physical symptoms I am lucky compared to some with Ataxia - I limp, I use a stick sometimes but I am not in a wheelchair, I fall sometimes but am not in constant pain. I used to be very fit and run a lot, but I often can walk unaided, I would hate to suggest that anyone can deal with it if they set their mind to it, but whatever you condition, mindset, focus is important.
Each case of ataxia is unique and each person's tale about how they deal with this horrible condition is a different and individual story that deserves complete respect. All I can do is say what works for me. It is very easy to become despairing or turn to alcohol or medication or get frustrated at doctors, or expect a miracle cure or rage at the moon to distract you attention from your Ataxia but making this show- unpicking my thoughts, playing music has for me provided a welcome distraction from dwelling on my Ataxia.
Making this show, practising a musical instrument working on balance and co-ordination and clear speech works on strengthening the things that Ataxia acts to disintegrate. But any hobby, any activity which takes your whole attention has got to be good thing. If you think of Ataxia as a bloodthirsty destructive animal that sees you as prey and wants to pull you into its grip and make you feel like a helpless victim A hobby or activity counteracts this and helps you escape, focuss
You can't deny Ataxia but if you accept it as part of you and then focus on what you can do, physically and mentally you are much better equipped to deal with its debilitating aspects.
· What musical instrument do you play? I sing and play string and keyboard instruments
· How long have you played it for? I played classical guitar when young, bass guitar in rock group when a teenager and then after studying theatre and dance and being a performer and deviser of performance for many years, I got into singing and making music with other dancers and performers in New York and London
· Do you write your own music? I make music! -don't really 'write'music, firstly because for me its always about the physical activity of making sound and listening, and secondly cos I am largely self taught musically. I like working with people hearing their voice hearing what they can do and building things around them. I have composed ('made up? ' music for the bands I have been in and made scores for theatre and dance . Now I make my own songs - I have about 30 of them, I try to remember them all in my head and fingers but when I practice one I'll forget another - that when I really wish I could 'write' music!
· Has ataxia affected your ability to play? Fortunately (touch wood) the ataxia has not affected the touch, movement and sensitivity of my fingers and clarity of my voice although I do need to concentrate harder, but when I was diagnosed, they did not know if it will develop soon or over the next few years. It made me very nervous and scared at first and want to play as much as possible before my motor activity really degenerates
· When were you diagnosed with ataxia, and what type? Did you have any symptoms beforehand? My diagnosis is SCA17, and I was diagnosed after genetic testing in March 2017. I had physical examinations, X rays, electrical nerve tests. PET scans, MRI scans before they finally diagnosed me. I limp, don't like stairs crowds or noisy places and fall over sometimes. I have always been a bit clumsy, easily distracted and had a short attention span, I used to run and be very physically fit and active but then I am not young anymore, so maybe its partly just getting older.
· Tell us about your show: what did you get up to, and how did it make you feel? what topics will this show cover?
It tells the story of my diagnosis and use of a walking stick, riding abike succeeding then falling, gaining confidence, losing it.. its about using the time and energy I have and includes many of my own songs using words, whistles, humming, vocal sound and invented languages. I wonder if I am dramatising just by talking about it, but given the dilemma of either denying it or on one hand or allowing it to depress me, I believe the only path is to be conscious of it and then carry on regardless. I am waiting to hear about funding now. I believe everyone involved in live performanceshould be paid for their work, that includes performers, tech staff, lighting and set designers, costume, and management. we are all professionals, giving expertise and time to making the show happen in front of a paying audience!
· Do you think creating something like you have has helped your mind set and helped you cope with your ataxia diagnosis? Yes it has helped me come to terms with my diagnosis, examine my fears and stopped me plunging into the pit of despair,. Hopefully it has also raised lot of laughs and moved a few hearts. A diagnosis of Ataxia is a frightening thing and can easily draw you into despair. Making this show fights and lightens this, and raises awareness of the condition While I have my faculties ( sounds dramatic!) I want to make something people can remember.