I have had to reassess my relationship with hope and my whole identity after a wonderful development that could change everything.
Reata, an American Pharmaceutical Company, announced earlier this month that had promising results in a study of patients with my condition. Initial results from a 48-week trial of the drug Omaveloxolone (Omav) show that it not only slows the progression of Friedreich’s Ataxia, but can also reverse it. It shows that for the first time, there is real movement towards a treatment or cure.
Following my diagnosis, hope was always something that I knew was dangerous and false. It was wishful and naïve to hope for a cure. When I was 17, I had a of a black ring of barbed wire tattooed around my right bicep. It symbolised the ugly and permanent condition I was doomed to live with for the rest of my life and the surrender of my own hope. My hopeless position strengthened as I learned that finding a ‘cure’ was the aim of a society that viewed disabled people as less than human. In a way, it helped me form my identity and live a successful life in the present, instead of the distant future.
I suppose I at least recognised the importance of hope. I think deep down I believed that somehow a miracle might happen. As a new Board Member of AtaxiaUK in 2012, the Board and I committed the Charity to find a treatment or cure for one or all of the Ataxias by 2020. Many people, myself included, were sceptical about making such a bold promise. But we knew how important hope is for our Friends, especially parents.
Every year for the last six, I help run the ‘All About Ataxia’ workshop in which runs the day before National Conference. It is intended for people who have recently had a diagnosis of Ataxia themselves or family member and is very intense. Over a whole day, we present a series of videos by medical professionals explaining ataxia and some of the therapies that can help. In between these, I share my stories and try to give an overall positive message. That life doesn’t stop with a diagnosis but is the beginning of a new struggle. I see the attendees arriving deeply in shock without much hope and throughout the day I can see it slowly returning to some of them. Doing this every year is emotionally draining, because beyond giving tips on managing to live with your ataxia, I know I have no real hope to give. I feel like a fake prophet; preaching hope but having none myself.
Now, hope is returning, and I find myself imagining not being in a wheelchair (as I have been last 20 years) and reversing the condition I have been living with for 27. For the first time, I playfully wonder out loud what it would be like to learn to walk again and eventually have to go back to work in my fifties. It also raises troublesome thoughts. Society’s answer to disability is to ‘cure’ it, but I don’t know if I’d welcome that. I’ve learned that the real value in life is the things we do. Would it mean that the struggle that has made me who I am, everything I have worked so hard to do, has all been for nothing? I know it wouldn’t make me ‘whole’ again, but I would be very pleased if my condition could be stabilised.
It is an uncomfortable question, but the exciting thing is that I have never been able to even consider it. My condition has always been incurable, an inescapable death sentence. I have never allowed myself to dream what would life be like if I was free of my condition. Of course, there is still a lot that can happen between now and a treatment ever becoming available and an indeterminate length of time to wait. But now there is something to hope for.
So, what is hope? Hope is a most human idea and has been felt and used to manipulate throughout human development. Wanting to know more, I Googled ‘hope’ and found a comprehensive Wikipedia entry and thousands of quotes. All very profound, said by mostly inspirational people and against a picture of a sunset or a dove or a green shoot in a desert. This included quotes from heroes of mine who are no longer with us: John Lennon, Martin Luther King Jr, Jim Henson, David Bowie, Robin Williams, Malcolm X, Christopher Reeve and Norman Wisdom. They all talked about what hope meant to them. I couldn’t find a quote that fitted exactly with my feelings, so I’m going to have a go myself. Here goes;
“When we are sure Hope has gone, it is waiting for us around the bend.” – Richard Brown
There it is. I know I’m not dead yet and its probably been said before. Just hopefully not by Adolf Hitler, Margaret Thatcher or Robert Mugabe. I haven’t Googled it just in case!
On becoming Co-Chair of Trustees for Ataxia UK just before Reata’s announcement, I accepted that I would have to tell our membership next year that AtaxiaUK had tried its very best and come close to meeting our vision but is still without a treatment or cure. I would explain that by their very nature, visions are our aspirations, our hopes and dreams. Now, I will ask them to join me in building an exciting new reality. I can finally pass on the fragile new hope that I feel.