Ataxia and personal identity
In a routine visit to the practice nurse for a blood test this morning, not ataxia related, it occurred to me that our society and our health systems push us towards embracing disability rather than fighting to stay fit.
The nurse had worked in the neuro department and knew what ataxia is! She admired my new chariot, an expensive wheelchair called a trekinetic, a multi terrain chair that allows me back into the new forest to share walks with my wife. Unlike my previous scooter, once I was in it I was in it, this one despite having electric motors also allows me to put it in manual mode and push it myself. So I push it to the gym, do my workout, and ride home. I also do 30 minutes of yoga every morning before breakfast. The nurse commented on how well I was doing and then it dawned on me that in a caring society we are encouraged to take the easiest option of submitting to our condition and allowing that to define us.
I’m very lucky that my career included time as an holistic therapist, yoga teacher and psychotherapist. I have the knowledge and tools to understand and combat the effects of ataxia. There have been days when I felt like giving up, and I expect there will be more yet. But most days I have things to look forward to and jobs or hobbies to do.
I have recently employed the disability card to get some speech therapy through my surgery. Having a therapist work with me reminded me of how soothing and comforting that can be. Something I used to do with my clients. With just a few sessions and her expertise I have been able to reclaim myself by being encouraged to tell jokes. (Something I was known for) and to break out of the straight jacket of embarrassed silence, caused by my poor diction. Most of my jokes require some sort of accent, from American to Italian via Welsh and Irish. I highly recommend trying to speak in unfamiliar accents as a fun way to practise using your voice. Requires a lot of concentration.
Our caring society has given me a blue badge, a disabled card, even attendance allowance. But I don’t need to repay this by being more disabled than I am. By not doing my best to keep fit and healthy. By relying heavily on my wife and other kind people to do everything for me.
I have sca6, which the head of Southampton neuro department said is the one to choose, as it’s late onset and slow to act. I realise other forms of ataxia are much harder to bear and understand how hard it is to be saddled with a condition later in life. Disabled children cope with life much better than disabled adults, though there’s examples of both coping well. Having lived most of my life as an independent person it is hard to give up and allow others to do things I always did easily for myself. Yet asking for help is twice blessed, blessing him who gives as well as he who receives. It feels good to help others, so don’t deny them that good feeling!
To summarise:- Do as much as you can manage, knowing this will be more some days than others.
Ask for help from those who love you and from complete strangers (Covid safe!)
Look for bits of you that have become lost under the burden of ataxia and work out how to recapture them.
Use the system of our caring society to make your life easier.
Laugh every day, search online for jokes or on YouTube for comedians or funny films. Find humour in everyday acts. Smile a lot, it encourages your brain to release endorphins, seratonin and other useful internal chemicals.
Be polite and always say please and thank you.
If you need to rant do it here, where we understand and will commiserate.
Share your good days and small wins with us too.
All people are valuable and that includes you specifically.
Today is one of my good days, and tomorrow is my wedding anniversary, 38 years of marriage, but only 26 with this wife! As I love her to bits I hope she is with me to the end.
Nigel
Husband with cerebella ataxia
Cerebella ataxia
unknown ataxia
