For International Ataxia Awareness Day, I have decided to include a section from Every Silver Lining has a Cloud, focusing on the day I was diagnosed with Friedreich’s Ataxia back in January 1993, at the age of 15.
***
I staggered across a hectic car park, underneath threatening grey clouds, towards my date with destiny. Proud parents clutching a Moses basket of hope and potential gazed lovingly into each other’s eyes as they emerged from the building I was heading towards. The young mother had clearly been up all night, but the emotional rollercoaster that her tear-stained face suggested she’d been riding was now ending with smiles, balloons and relief. After carefully strapping their bundle of joy into a rust-ridden Ford Cortina, the father released a bright red balloon marked with an unfathomable Chinese symbol and watched as it was consumed by the dark skies hanging over Alder Hey Children’s Hospital. I continued to wobble onwards, but before I could reach my desired destination, the heavens opened…
***
The specialist was talking at a rate of knots, but I wasn’t listening. I could only think of how much he looked like Matthew Corbett and wondered if it would’ve been any easier if he’d employed his cuddly puppet friends to tell me that I was suffering from a progressive, genetic condition of the nervous system known as Friedreich’s Ataxia. I concluded that it would only have added to the confusion as Sooty is only capable of a whisper while Sweep speaks in a squeaky dialect of his own.
I retuned into the unglamorous reality provided by the specialist as he mapped out the rest of my life using medical terms and unattractive words such as “wheelchair”, “diabetes”, “slurred speech”, “heart disease” and “curvature of the spine”.
Apparently, only one person out of every 50,000 in Britain suffers from this cruel condition, which traps and maintains a healthy and active mind in an eroding and useless body. Just half an hour earlier, I’d been hoping to hear about a trapped nerve that could be released with a simple operation and allow me to get my football career back on track. It wasn’t to be. I’d have to live with the fact that the cards life had dealt me had just been reshuffled.
It was a lot to get my head around as despite reassurances from Dr Corbett that Britain was becoming more accessible and appreciative of disabled people’s needs, I had enough social awareness to realise it meant a frustrating future, fighting stereotypes, avoiding pigeon holes and struggling to be heard…
***
On the dismal journey home from Alder Hey, I was faced with impersonal reams of medical jargon that were supposed to educate and inform me about the disease I was fighting (see Appendix A). Instead of ploughing through this inaccessible nightmare, I chose to indulge myself with the inventive prose of Dave Lovett – chief football reporter for the Wrexham Leader – as I was more concerned with the battle for promotion from Barclays Division Three than whatever was going on inside my body.
I finished reading the match report of Wrexham’s 3-1 home win over Walsall as the trusty Allegro entered the concrete confines of one of the Mersey Tunnels. While we progressed through the poorly-lit passageway, I allowed myself two minutes of contemplation about what I’d just been told, wiped a tear from my eye and focussed my attentions on the road ahead, which I hoped would eventually lead to bright sunshine and light.
Emerging from the underpass, I was greeted by dark and depressing rain clouds with the only splash of colour coming from that same red balloon I’d seen at Alder Hey earlier. It was threatening to follow us all the way home until it was finally engulfed by the brume over Ellesmere Port. By this point though I’d managed to programme the Chinese symbol inscribed upon it deep into my memory, pledging to one day discover its true meaning…
** Every Silver Lining has a Cloud is available to buy for just £15.99 on my shop page. **
