[Through hardship to the stars]

by Simon Ibell



Martin's note: Simon is a Speakwell employee who inspires all.

"Simon, you have been selected as one of the finalists at the Canadian Sport Awards March 25th, 2003 (this will be shown on CBC TV March 26th). The other nominees in your group are the figure skating pair Jamie Sale and David Pelletier and cross-country skier Becky Scott."

I could hardly believe it, me a finalist on National TV for one of the most prestigious sports awards in the country. Of course, I do have a little competition; Sale and Pelletier skated an almost perfect performance in the Salt Lake City Olympics and would have won the Gold Medal outright had it not been for some judging machinations.

(I smiled as I thought that maybe I could borrow the French judge for the Sports Awards night). Then there's Becky Scott who, like Sale and Pelletier, will probably get her Olympic Gold Medal retroactively. The two Russians, Larissa Lazutina and Olga Danilova who finished ahead of Scott have already been disqualified by the IOC, but their appeals will probably not be heard until later this year.

Fortunately, you don't have to win an Olympic Gold Medal in the category in which I'm nominated. I was recognized by the Spirit of Sport Foundation for my efforts in last summer's Bike4MPS ride, which I created to raise awareness about the obscure disease, which I deal with on a day to day basis.

What an honor, what a thrill. I envisage trading backstage sports award talk with my good friend, Roland Green, who is world mountain biking champion and won the Male Athlete of the Year award last year at the same ceremony.

I'll also be able to swap stories with my old school friend, good buddy and role model Steve Nash

Steve is a two time NBA All-Star and won the 2002 Lionel Conacher Award as Canada's top male athlete as voted by the Canadian Press. Dreams really do come true and I'll get to meet Wayne Gretzky who is scheduled to be there to receive the award for leading Team Canada to its gold in hockey at the 2002 Olympics. (Will I be the only one without a Gold Medal?).

Blind Luck

There I was a couple of weeks ago, so high I was looking down on cloud nine and I'd almost forgotten my opthamologist's appointment on the following day. The news he had was pretty devastating and certainly let some of the air out of my Sports Award balloon. I'd been finding it increasingly difficult to see at night and had to stop driving after dark. The reason for this, the doctor explained, was progressive macular degeneration, which for people with MPS typically leads to blindness in 2 - 5 years. I discovered there was nothing wrong with my tear ducts as I was forced to contemplate a life without sight. I could relate to the comments of an MS patient I read in a doctoral dissertation, "It's like, there is God sitting there, pitching things for me to catch, and every time I get them all, I'd say, 'Good, I've got them all' and then he'd pitch me another one." What should I do, learn Braille, go see the moon over the Taj Mahal or maximize time with my family and friends and memorize every detail of their appearance?

I remembered Martin's wife, Nancy, saying "Accept the diagnosis and defy the prognosis." I've done this with so many problems and now I've got another one to deal with. I tell myself everything happens for a reason but right now it's hard to figure out what that reason might be.

At the age of 4, I was diagnosed with Mucopolysaccharidosis (MPS), a rare and progressive disorder which impacts many body parts and major organs. This one corrupted enzyme has wreaked havoc on my body. I have an enlarged heart and an atrial valve problem, my joints are arthritic and often painful, my hearing is severely compromised, I have asthma and breathing problems, particularly at night when my tongue blocks my airway leading to sleep apnea and consequent lack of sleep accompanied by some vicious headaches. The most visible impact of MPS was its effect on my growth hormone, which instead of allowing me to grow to my predicted height of 6'3" cut me off at 4'8". Because of MPS, for most of my life I've been forced to deal with labels like 'disabled', 'handicapped' and even worse, the politically correct 'handicapable'. We are each an experiment of one and to try to pigeon hole me with a label often leads to misconceptions about the impact I can make on this world.

Sport has always been my passion but at a relatively young age I realized that MPS would not allow me to be a high level performer. I would never dunk a basketball but I could be part of a basketball team by being the best and most caring manager in my power. I could do my utmost to make sure that every practice; every road trip and every game were free from any of those administrative glitches, which can sometimes change the course of a season.

Because of my managerial role I was not a spectator, but a participant when Steve Nash led my AA high school to a Hoosier-like AAA Provincial Basketball title. Likewise, when the University of Victoria won the National Basketball Championship I was celebrating in the middle of the dog pile of happy players. I've gone on to fulfil a similar role with the Canadian National Team. It may be ironic being 4'8" and involved in a sport of giants, but why should I let something as insignificant as height prevent me from offering my best to the sport I love? The players and coaches see me as an essential part of the team and at times maybe an inspiration.

The doors of history swing on small hinges and it was Dr. Martin Collis' impromptu decision to ignore the Fire Marshall's restrictions and allow a few extra students into his Human Potential class at the University of Victoria that first put me in contact with him. His class gave me another shot of inspiration and I've subsequently become a speaker in my own right and have addressed a variety of audiences ranging from schoolchildren to international athletes. There is a short distance from mentor to friend and this year I'm working with Martin at Speakwell.

I often ask myself, "What is the source of my passion? Where do I find the will power to carry on, when my biochemistry rewrites the rules of survival? How do I find the courage to seek solutions where none seem to exist?" For me the energy source was my family who provided an environment of respect, integrity, and fun and put no limits on my dreams. It's interesting, even as I write words like 'respect' and 'integrity' they seem like something out of a company mission statement, but at home they were as real and tangible as the front door. In the early years of the 21st century, meals are often taken on the run or in front of the TV. I grew up in a family where mealtimes were a forum for debate, argument, teasing, laughter and conversation. I grew up with unconditional love from my parents and my sister and this is the source of my strength. This unfaltering support has allowed me to face challenges head-on, and to enter a world once considered the exclusive domain of the able-bodied.

Call it denial, call it heroic but I have chosen not to let MPS limit my ambition. I've completed my degree and am working at Speakwell and living independently in Victoria. Last Summer, I created Bike4MPS [see Simon's article in Fall 2002] and with huge support from friends, family and volunteers, rode 380 km from Port Hardy to Victoria in some of the nastiest Summer weather Vancouver Island could throw at us. The journey became a metaphor for people with MPS and many other disabilities as we faced up to physical, mental and emotional challenges. But the end result was a triumph with a gala dinner attended by nearly 500 people and with over a quarter of a million dollars raised for MPS research.

Sometimes life with a disability can get absurd and I'll share with you a current 'Monty Python' like situation with which I am dealing. The Ministry of Human Resources uses me as a spokesperson and role model for their Triumph Vocational Series program, which is designed to integrate challenged people into the workforce. However, when I went to the same Ministry of Human Resources (Disability Assessment Branch) about acquiring a nasal CPAP (Continuous Positive Airway Pressure) machine to help with my nighttime breathing, I somehow didn't quite meet their criteria as 'disabled'. (Rather than seeing humans as 'resources' wouldn't Ministry of Human Services or even Ministry of Human Beings be more likely to produce empathetic bureaucrats?) Currently, I receive only about 65% of the oxygen I should when I'm asleep, which puts a major strain on my heart and is the cause of many of my headaches. But the real headache is having to deal with government departments that spend tens of millions of dollars for medications but cannot provide the modest amount of money for a life-changing piece of equipment.

I'll resolve this problem,
though it's such a poor use of my time and energy.
As Monty Python and Don Ardell remind us,
"Always look on the bright side of life",
and I will.