The Diagnosis

The following is an excerpt from my upcoming book A Few Acres of Snow which relates a special time in my life just before I was diagnosed with scleroderma.

Reflections 19

The Diagnosis

“Oh no, people die from that.” these were the words uttered by my best friend from high school days after I told him of my diagnosis. Not exactly what I wanted to hear, but he meant no harm. It just sort of slipped out and I’m sure he regretted it immediately.  And it’s not like I wasn’t already aware that this disease was potentially fatal. After all, the first thing I did upon arriving back at my daughter’s after being given my diagnosis was to turn to the internet where I quickly discovered that I had a fifty percent chance of living beyond five years. Fortunately, I kept looking and found that the information was outdated and the prognosis was not nearly so bleak. 

And although my death didn’t appear to be imminent, over the next several months, I still went through all the stages of grieving - denial, anger, bargaining, depression and acceptance -  if not for the loss of a life then for the loss of a lifestyle.

Of course the most immediate repercussion was the realization that my adventure was over. The doctor had said, no known cause, no cure. A return to Bancroft was not in the cards. I stayed with my daughter for a few more weeks before deciding that it was time to get my own place in the city. I ended up renting a small second floor apartment in downtown London. Second floor, what was I thinking? Even in those early days, climbing a set of stairs was both painful and exhausting - still in denial perhaps?

My way of coping was, again, to turn to the internet. I researched alternate healing methods with the result that in mid April I found myself at Pearson International Airport in Toronto boarding a plane for the first leg of my journey to the province of Goa, India where I had booked a one month stay at an Ayurvedic Health Clinic. 

Overall, the stay was a positive one. Days were filled with visits to the doctor, every kind of massage imaginable, some gruelling and painful, others sheer ecstasy. Then there were the daily enemas which, near the end of my stay, culminated in the imbibing of the most foul tasting and violent of purgatives imaginable. There were the yoga sessions where the leader had trouble accepting the fact that I simply could not do any of the various assanas because of my limited mobility. I finally convinced him to lead me in meditation sessions instead. There was the extremely bland diet based on my body type and ailments as prescribed by the doctor. This was probably the most disappointing aspect of the entire trip as I’d been looking forward to trying some new and exotic Indian foods. 

The end result was that, as my time at the clinic drew to a close, I was seeing some improvement in my mobility, like the day I found myself going up a flight of stairs two steps at a time or discovering that I could reach my feet again enabling me to put my socks on, both small but significant gains. My doctor, pleased with my progress, suggested that I should stay to continue the treatment but this simply wasn’t a possibility. It would have meant losing my airfare home, a substantial sum, not to mention forking out the cost of another month or more at the clinic. No, it just wasn’t going to happen.

The trip home, totalling thirty-eight gruelling hours between flight time and lounging about in airports in New Delhi and Amsterdam was so exhausting that I lost most of the gains I’d made over the previous thirty days. No regrets however, it was probably what will turn out to be my last great adventure. 

After arriving home, I was faced with the fact that I’d better learn to accept my condition and get on with my life. The hardest part was the loss of my independence, specifically, having to ask people for help for even the smallest of tasks. And of course, they never did things when they said they would or in the manner which I would have done them. Sure did learn a lesson about biting my tongue and just being grateful that I had people to ask. Truth be known, this is still the most difficult part of being disabled and I don’t know if I will ever get used to asking others to help with everyday tasks.  An important lesson in humility I suppose.

Now, ten years after my diagnosis, my biggest challenge is my digestive tract. I no longer get nutrition from ingesting food orally which means that after a couple of unsuccessful years on a feeding tube placed in my abdomen, I am now receiving Total Parenteral Nutrition (TPN) which means I am hooked up to an intravenous feed twelve hours a day six days a week. There are times when I am able to eat normally, purely for pleasure, but there are also those times when eating is out of the question as it causes diarrhea and nausea. As I write this, for example, I am approaching one month during which I have not taken anything by mouth except water and a daily cup of tea which I allow myself - at least it’s something to look forward to. 

The lack of mobility, the contracted joints, hands frozen in half fists, I have managed to adapt to, going so far as inventing a new way to play guitar.  My primary means of transportation is a power wheel chair in conjunction with paratransit. 

And that’s a quick summary of the current state of my health. With the help of friends, family, and an extended professional health team and several devices, my wheelchair being the most obvious, I manage quite well and can honestly say that I am enjoying life to the fullest.