I’m starting to blog again, two years after a fall and a rare neurological condition changed my life. Here’s what happened, and why I’m more grateful than ever to be alive. I’ve returned to my voluntary work with Atheist Ireland, and I’ll be writing here and on SubStack, about happiness, humour, reason, atheism, and secular liberal politics.
The day that everything changed
Two years ago today, I fell while running for a bus. I smashed my head on the pavement, knocked myself out, and broke my wrist and shoulder. My friend Jane hailed a passing taxi to bring us to hospital. ‘I heard your head bounce off the ground,’ the driver said. ‘I thought you were dead.’ I spent a week in hospital, and they put a plate in my wrist on my birthday.
Back home, I developed persistent pain in my back and legs. I rapidly lost three stone in weight, and I hunched over on daily walks to the local coffee shop. Eventually, I became housebound. Jane brought me to hospital, where my legs gave up halfway down a sterile corridor. Staff wheeled me the rest of the way and admitted me.
The seeming finality of an early death
Consultants suspected the fatal motor neurone disease. Other conditions have similar symptoms, but this was their focus. I spent nights awake, studying the disease on my iPad. I faced the finality of an early death, and the approach of nothingness. I would simply not exist, just as I did not exist before I was conceived.
I recalled how my late wife Anne coped with her terminal cancer, and I believed I could cope too. I resolved to take measures to avoid unnecessary suffering. I inevitably considered that this would raise the profile of our campaign for assisted dying. Still, I hoped the diagnosis was wrong.
Medical tests and the return of hope
Medics conducted a full-body MRI, a CT scan, several ECGs, a muscle biopsy, and more. During a spinal tap operation, I suffered a generation gap moment when I joked to the young doctors about the machine going up to eleven. I found they were unaware of the cult 1980s comedy movie This Is Spinal Tap.
Thankfully, the diagnosis changed. I didn’t have motor neurone disease. Instead, I likely had an aggressive case of diabetic amyotrophy. This is a rare condition where the immune system goes rogue, interrupts nerve signals, and wastes away muscles. As one symptom, when I got into or out of bed, I had to lift my legs with my hands.
Preparing to return home
I continued to lose weight, and became weaker after several falls. Medics kept me in bed for safety. I spent days on a drip, receiving steroids and purified immunoglobulins. Doctors said I might recover slowly, over years. Or not at all.
Throughout, I was impressed by the health service. I had a warm room, kind and efficient staff, and three meals a day. Jane brought fresh clothes and fed my cat. Other friends visited. As I prepared to return home, doctors warned that I might not improve. If that happened, I decided, I would become a gentleman of leisure.
A delightful breakthrough
Jane had kept my house in beautiful order. There were grab rails throughout, a zimmer frame, a swivel chair across my bath, and a new stairlift down the steps to the back of the house. Home carers visited for an hour a day, including the wonderful Paula. I weighed nine stone, five stone less than a year ago. I thought back ironically on the amount of times I had tried and failed to lose weight.
Then came a breakthrough. One morning, I swung my legs out of bed without thinking. No lifting with my hands. Just a smooth, instinctive movement. My nerves were regrowing. I beamed like a deaf baby in a viral video hearing sound for the first time.
Learning to walk again
With my carer beside me and a sturdy rollator, I began to walk my local pavement. I noticed, for the first time, how uneven the surfaces were, and imagined the challenges of using a wheelchair. When friends visited, we braved the two hundred metres to the local coffee shop. After so long indoors, I adored sitting outside, enjoying my coconut milk latte and vegan muffin.
Bit by bit, I ventured further. Crutches gave way to a fibreglass cane. My walk was clumsy, part Frankenstein’s monster, part Steed from The Avengers. I reached the Botanic Gardens and immersed myself in the aroma of exotic plants.
Learning to live again
My problems shrank as I discovered many family members and friends were also ill. We are all in this life together. I slowly returned to my voluntary work with Atheist Ireland. I’d read that people who overcome adversity often appreciate life more. Now I know that first-hand. I am more grateful than ever to be alive. I fell, but I’m back on my feet, and back at my keyboard.
Thanks for reading my return to regular writing. Feel free to share or comment. As I said, I’ll be blogging about happiness, humour, reason, atheism, and secular liberal politics. I’d love to hear your thoughts, both on this and what you’d like to read next.
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