Friday, 30 November 2018

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.

Falling off my bike/ 'Risk Assessment'

I fell off my bike a couple of days ago and cut and bruised myself. What has has me falling off my bike got to do with risk assessment?
I was full of physical confidence  to get over my Ataxia so I wore  tracksuit trousers and sweatshirt and thought 'cycle to park and get strong' None of this physical and mental safetyfirst timidity and so I got on bike. I was stationary at a junction with busy road, waiting for aspace in the traffic near Balcombe Street and fell sideways inexplicably and lay in road for a few seconds, I tried to get up, thinking I haven't hurt myself really and I tried to stand up from road but couldn't get up, my brain sent message to my arms and legs to get up, but they didn't respond a nearby pedestrian ran over to me as a number82 bus avoided me, and helped me to my feet, I felt a little silly and thanked but assured him I was ok, but as I walked on I thought I had better get checked over. I locked my bike up- I wasn't going to cycle again and went to an nearby co-op supermarket and asked to use their first aid kit.  I rolled up my trouser leg to reveal a very bloody knee -the fall had knocked  off a scab from my previous fall. I was cleaned and bandaged up by the bloke in the supermarket. I felt well lookedafter and limped out of the shop, confidence severely dented.
I haven't dared to get on the bike since. That was 3 days ago and have been thinking about how to get confidence  back but without physical risk.
Many achievements come from just going for it and ignoring worry and caution. I have found that when I  list dangers the sensible option seems to be don't try anything. How do you draw the line between a debilitating worry and a genuine risk?
Maybe I can get fit and strong without the 'risk' of cycling. But  a voice in the back of my head cries 'wuss' at me,  but it is always possible to be out of you comfort zone, extend your possiblities without risking fragile flesh on tarmac. Brute reality: flesh is softer than tarmac. I am mostly fine but unpredictably lose all coordination and balance.
so much as though I love hurtling along carefree on a bike, cycling for me is off the menu, but I hope I don't become too timid.
Hmm maybe I should go into risk assessment - "Assessing risk for a big company is easy. Its like falling off your bike ....'

Thursday, 8 November 2018


 So... I get to the Festival Hall to queue for Michelle Obama tx at 8 am.Tickets were going on sale at 10. Plenty of time I thought. My daughter really wanted to see Michelle in person, but  unbeknownst to moi, so did 30,000 other people, online on phone and in person. It was chilly as I joined the queue at the bottom of Hungerford Bridge. They hadn't opened the doors yet and the crowd snaked round the building. Commuters hurried, staring past the queue, uncomprehending, making their way from Waterloo across the bridge to work in West End. Here  was a graphic representation of class and race in Britain (if ya wanna go that way) most people in the queue were black, most of the commuters were white. I must have stuck out like a sore thumb in the queue. At 9.05 a cheer erupted from the front of the queue, round the corner and about 40 yards and 120 people away. The cheer was for opening the doors: we could carry on queuing in the warm now. We moved inside, the queue snaked around the foyer, the box office terminals were still off. I, nursing wounds from trying to get on a bike yesterday and falling off,  gratefully found a chair and sat for fifteen minutes before the queue  moved forward a few  feet
At just gone 11am I didn't know what to do, we were nearing the front of the queue but  the ushers told us there were no more tickets. People were beginning to get annoyed and looking anxiously into their phones connecting to the South Bank website 'Welcome to the queue' it said. Back to the real world. I stopped peering into my neighbours phone and look at the scene in front of me -  still no tickets. The ushers, while trying to deal with the queue, were doing their best dealing with an uncertain situation and swiftly changing information in their earpieces,. I checked my phone, it was dead, out of juice, so I borrowed a phone and called Jasmeet to warn her. I had to open the shop at 12  and there was a customer waiting, she said.  I might be late opening the shop I said.
'Sold out' they announced at 11.20. I left the queue and hurried to make my way to the shop by 12. I got to shop at 1202 and called again to let the shop know that I  had arrived. ‘Oh that customer is not coming ‘ I needn’t have rushed. I was obviously flustered I don't know if I heard clearly but I think she said "you will rise nicely" quelling my seething, perturbed spirit. Yes life goes on, we rise above these little traumas. Yes but I would like my daughter to have seen Michelle. But then later when I text her to let her know of queuing in the early morning  cold for non existent tickets she texts me ‘it’s chil dw’[‘don’t worry’], oblivious to my efforts. Hmm, I decided not to educate my unhearing daughter on the finer points of the difference between needless anxiety and heartfelt concern. On we go ... 3 hours in the cold though ... on we go