Is life with Friedreich’s Ataxia just one long funeral? or can it bless us with a unique outlook?
Part of having an incurable and progressive condition is accepting you will have a shorter life as a result. This develops from the initial shock, grief and mourning to the significant realisation that life is short, anything can happen, and we must live in the moment. This insight has been reinforced through my experiences, but is it something other people glimpse, but don’t seem to hold on to.
My first experience of death was that of the assassination of John Lennon, Christmas 1980. I was nearly five. Even though I knew him as ‘John Lemon’, I was familiar with all the songs from ‘Imagine’. He held the status of poet and guru for my parents, and someone they had grown up with as a cultural reference point. A hero, a good man, something to be. I remember seeing that they were deeply shocked and asked them to explain what had happened to their hero, where he had gone, and when was he coming back. More than a death, this was a violent murder. I hadn’t thought that bad things were supposed to happen to people that my parents loved. The image of his shattered and twisted spectacles in a pool of blood overstated what was already a terrible loss into a cosmic lesson for a little boy.
There are several experiences that made me feel especially ‘close to death’. These were often moments of intense intervention with medical professionals. I know Doctors are like people, some are good, some are not. They calculate risks and make judgements based on their experience. They can get it wrong. But the institutionalised approach to disability as sickness is very bad for people with disabilities. I avoid medical intervention in my life as a result.
Beginning with my diagnosis of Friedreich’s Ataxia in 1992, I have felt closer to death. Just fifteen, I was told I would be fortunate to survive into my thirties. This was the prevailing wisdom at the time, but I wondered what ‘surviving’ meant. That gave me 20 years of ‘life’ to look forward to. It took me that time to grieve before I worked out the importance of living in the moment. Deep in denial, I was able to go to University, get married and work without major reminders of my disability and my own mortality – until 2008, when my Wife and I made the decision to become parents. I talk about having to confront my own mortality in my blog about choosing to become a parent. Our wonderful children were born in 2009 and 2014.
Another unwelcome reminder came in 2011, when I took Medical Retirement. [I talk about my work experience in a later post – Working with a Disability] I was struggling with tiredness and went to see the Council Doctor. I began the process expecting to return to work on reduced hours, but he said simply, “You should’ve retired years ago.” This process required reports and examinations. Reports from my GP and Neurologist, another appointment with the Council Doctor, forms signed by myself and my Manager, further evidence from my medical notes, a medical examination and final review by an independent doctor and a final decision by the Pension Company’s Doctor. To my surprise, my colleagues had been concerned for my health for some time and were relieved at the news I was retiring. Such was the seriousness of the medical retirement process, by the end of it, I was convinced that I had a few months left to live.
Co-signing a 30-year mortgage with my Wife in 2013 reminded me that I would not live to make the final payment at the age of 67. My assessment for PIP (Personal independence Payment) has been hanging over me since this time too. There is nothing like an impending state review into your disability to make you continuously and painfully aware of your own mortality. For the few weeks at the end of 2021, I knew I was being awarded my MBE but could not tell anyone, I really did not want to die. As the investitures stopped for the Pandemic, I hoped I would live to have my day at the Palace.
Feeling close to death is not unusual. Disabled people have found themselves in an increasingly hostile environment since 2010. In November 2018, Professor Philip Alston, United Nations Special Rapporteur on extreme poverty and human rights, reported that “great misery has also been inflicted unnecessarily (by the State), … on people with disabilities who are already marginalized …”
Death is a recurring character in my world. I first met him in Terry Pratchett’s excellent Discworld books, a quiet giant, wrapped in a cowl and carrying a scythe. We met again in Neil Gaiman’s Sandman. This time in the guise of an ageless, precocious teenage girl, just trying to help people move on – whether they are ready or not. I like the way these deaths are benign caretakers, somehow kind and gentle – like old friends. This is the death who comes for those who accept it and are not afraid. This is the death that will come for me.
What shapes our understanding of death? Ourselves and our traditions and rituals. In his 2020 book: No Time like the Present, Michael J Fox talks about the passing of his Father-in-Law as a positive experience. “A letting go, unforced and natural”. “…the prevailing mood and spirit around Stephen, gratitude, was the very essence of the man…” He had carefully prepared his friends and family to accept his death by the way he lived his life.
I find funerals difficult because they are purposefully laden with moments that trigger extreme emotional responses and is a concentrated and dramatic copy of this journey through loss to acceptance. All in ninety minutes! We are brought as close to death as possible with the arrival of the coffin, only to welcome the understanding that our lives are short, and our loved ones will live on in our memories and actions. Then we sing a hymn in celebration and go home. A great example of this process is captured in a favourite story of mine; Charles Dickens’ A Christmas Carol. Scrooge comes to such a revelation after he is brought close to his own death. He is changed forever and finds redemption in bringing joy to others and living in the moment. As someone that has taken the same short-cut, I identify strongly with that ‘reconstructed’ Scrooge.
We can’t all live our lives with direction, clarity and gratitude, or by bringing joy to others. Why doesn’t everyone who has been touched by grief go forwards with a new understanding of the shortness of life and the importance of living in the moment? I think that Death is best to answer this. “mortal life just doesn’t let you stop for long enough to look around. And when you do, it’s too late.”
As a disabled person who has had a chance to look around and has constantly had to face their own mortality, I have no choice but to live in the present and try to be grateful for what I can – and that is fine with me.
August 2019 (updated August 2021)