On the mystery of Easter, my life goes on

Mar 30, 2024
Tablet with diagnosis ataxia and stethoscope.

Here I write as a 62-year-old person, formulating the persistent issues of my life by giving my ongoing attention to Friedreich’s Ataxia. I can hardly avoid doing this because it has so shaped my entire life since it’s onset when I was 14 – that means I have had to deal with it for nearly half a century – I never once dreamt or had nightmares that this condition would be partnering me so closely on life’s journey.

Only being discovered approximately 200 years ago, before then it was seen as Multiple Sclerosis; but I suppose the question is why was it not recognised by its distinctive symptoms? That becomes a question fit for long-term study. But if I were to start to explain my experience of Friedreich’s Ataxia, I would have to begin with what has the most impact upon me right now.

Two aspects of my experience readily come to mind: my very troubling hallucinations and my problems with communication. Hallucinations are something I have written about in a previous article, and I have also concentrated on writing and communicating about my declining vision and dysarthria, my impaired speech. Believe me: I have worked extremely hard to understand my complicated condition.

My communication (dysarthria) issues intensified when problems with normal vision first emerged when I was 50 years old. They actually became a condition called nystagmus, in which the eyes shake and vibrate frequently and uncontrollably. So, I have had to hear what the eye specialist had to say, and he explained that eventually my eyes were shaking so much that the cells allowing me to visualise were impaired and as time went on, sight completely departed from my eyes, causing blindness.

The communication issues I have lived with, and dysarthria are to some degree surmountable problems. For some years I coped but the impact of such a condition increases with time and my lack of verbal communication should not be seen in isolation. Now, however, it is but one in every hundred people who can understand a sentence I have tried to speak; the possibility of being understood has also decreased rapidly.

Add to that, my ability to move around has also decreased at an alarming rate, entwined now with every movement I may want to make. When it began, in my teens, my mobility impairments interfered with my coordination in a minor way. But now, looking back over the problem I have had to deal with, makes me realize that my initial problems with coordination also have had severe consequences. I tended to live “above” them as irritations. I thought: Why spend so much time on them? Why not just “get on with it”?

So, I have lived through different mobility phases in my “partnership” (as I have called it) with Friedreich’s Ataxia. So, there were the slight mobility problems when I was 14 years old, to then “graduate” to using a wheelchair by the time I was 23. But the thing that impresses itself upon me is this: these days there are many more people living with Friedreich’s Ataxia early on in life, so the demand for physiotherapy exercises to enhance coordination from early on, and also speech exercises to deal with dysarthria, are so vital for their lives. I am glad that such support is now much more available, and it is much more in demand. Without such exercises undertaken with the early onset of Friedreich’s Ataxia there will be increased pressure for the person later on in life. And so that’s also why I am writing to draw attention to the need for such support for those who need it.

There are other things, many more things, that need to be taken into account. When I was 23 years old, I was in hospital where I fell in love with a beautiful young nurse. To cut a long story short, we lived together for about a year. These were the most joyful times of my life; these memories have always brought and can still bring a smile to my face. After six months, we decided to get engaged but after another six months it all ended: I tended to blame that break-up on my disability.

And so now, I can look back on my own experience and recognise the great importance of early intervention for younger sufferers if they are to live, say, as long as I have done. And as I offer my support, while recalling that beautiful relationship I cannot help wondering: “If only …”. Could the break-up have been avoided?

One intervention that is not one particularly in high demand, and which I have experienced, is an operation to deal with scoliosis. The scoliosis operation does not have many good outcomes, but it does stop the right side of the chest from bending over and squeezing the heart, fatally squashing it. The Scoliosis looks worse because of my cardiomyopathy, which makes my heart look large and deformed. From what I am told, the cardiomyopathy may well eventually kill me.

So, I had that operation, and I am still around today, but my back still creates seemingly untreatable issues that are not going away.
Am I just to “get on with it”?

However, despite it all, and here I am now, 62 years old, with my Friedreich’s Ataxia and hallucinations “partnering me” in life’s journey. Some could call this a “living death.” How can I not rethink life’s journey? How is it that I have been able to “get on with it”?

And at the end of this story – I’m still here! My life goes on! I’ve been wondering if it has something to do with my strong Christian belief. Of course I have been wondering about euthanasia. How is it possible not to consider euthanasia when living within a condition some would call a “living death”? And I do not deny that this has been something that I have had a lot of trouble thinking about.

I have confronted my ghost-writer with this. This final paragraph is about this darn problem we have discussed ever since we first met over 30 years ago. So, I wondered what he would say to help me complete my story. I confronted him about this, as I did, some time ago, when I asked him about euthanasia. He tells me that for some time I have reminded him and his wife Val of the mystery of Easter? Me? What could they mean by that? Easter is about the Risen Christ presenting Himself to His disciples. They had run away from the terror of His crucifixion, but after that experience they lived on, and they did so, somehow, without their former fear of death, or dying. My ghost writer suggests by “getting on with it”, I remind him of Easter. Even if I have had to deal with what seems to be a “living death”, then somehow, I have been living with a hope that counters Friedreich’s Ataxia and ensures it is not the end. What he says is that I have passed on the value of living with hope that one day Friedreich’s Ataxia will be over, just as one day soon his days and my days will be complete. I have lived on, by getting on with living within what has fallen on me. I write in the hope that, with all the troubles the world is facing these days, those living with Friedreich’s Ataxia – sufferers, family, carers – may gain some measure of hope from my own story for “getting on with it”. And, after all, if healthy people are encouraged to “get on with it” with respect for those who have deep issues, then when Easter rolls around the mystery of God Himself suffering with us might inspire many to view their own lives and the world with compassion, from the perspective of those who suffer.

Dietrich Bonhoeffer wrote to his friend in a letter from prison. 1944. He was in prison because he was open in his opposition to Hitler:

“I am still discovering, right up to this moment, that it is only by living completely in this world that one learns to have faith… I mean living unreservedly in life’s duties, problems, successes and failures, experiences, and perplexities. In so doing we throw ourselves completely into the arms of God, taking seriously, not our own sufferings, but those of God in the world – watching with Christ in Gethsemane. That I think, is faith; that is metanoia; and that is how one becomes a human being, a Christian.”

I would like to pay special thanks to my ghost writer Bruce Wearne, as he has been there for me and I would also like to pay thanks to my special team of academic support workers Amanda, Daniella, Lina and Sarah.


Read more from Peter Gibilisco

Hallucinations and the endurance of unbearable torture


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