May 26, 2017. Victoria, BC. A gorgeous, warm spring morning beckons. I pull into a parking space behind the gym at St. Michaels University School (SMUS), look forward to a day of teaching and coaching.
Suddenly, without warning, the sky darkens. A shadow falls over me. Several jet-black crows materialize from nowhere, cawing and screeching furiously. I don’t necessarily believe in omens, but I am unsettled. Something is amiss.
On reaching my office, I begin to organize various papers at my desk. It is then that I turn, see a long-time colleague, ashen faced, at the window. And somehow, I know, just know. The words hit like a hammer blow. “It’s Simon” he says. “He’s gone.”
A kaleidoscope of memories floods my mind. Quite simply, in every way, shape and form, Simon Ibell is one of my heroes, a person I love and admire. As a boy, then as a man, he defies convention and the odds to overcome numerous challenges and obstacles.
A remarkable story and a remarkable life begin late in 1977. Simon’s parents realize something is wrong, with the standard development patterns for an infant decidedly out of whack. Soon after, he is diagnosed with MPS II, also called “Hunter’s Syndrome”, an extremely rare enzyme deficiency disease which leaves his body unable to properly process its waste products. The result is stunted growth, very laboured breathing, enlarged organs and gnarled joints.
By the age of 7, Simon and his family are told on multiple occasions he will not live to see the new year. And that reaching the age of 13 would be a miracle.
As fate, not to mention my considerable good fortune, would have it, the Ibell family moves to Victoria in the summer of 1990. They continue to seek a cure for MPS, this time via stem cell transplants being promoted in nearby Seattle.
Alas, the procedures prove unsuccessful. An increasingly frustrated Simon begs his mother to “let me live my life. I am tired of being poked and prodded.” And with that, he attends SMUS, the first student to be enrolled with a visible disability.
Six years later he graduates with distinction. Throughout his high school career, he excels academically, proving to be witty, clever, and intelligent.
Drawn to him immediately, I also see first-hand his grit and determination. Given his severe physical limitations, completing the mandated 2400-meter time trial in PE class seems impossible. Yet, slowly but painstakingly building up his stamina, by the end of grade 9 he manages to cover the entire distance. It is an inspiring feat. His mates peel back to join him for the final stretch run, a show of total respect, a guard of honour of sorts. Recalling the scene still gives me chills, my fondest memory of nearly four decades in education.
Our deepening connection extends to sport. When no longer able to take part himself, Simon still finds ways to stay involved, taking on crucial support roles. Extremely efficient and refreshingly honest, he sets new standards as the SMUS basketball manager and statistician. In fact, so capable and so thorough, he carries on the same work at university level and then with the Canada Senior Men’s team. Operating at the very heart of these groups, he is adored by all the players and coaches.
Still, Simon is destined to do so much more with his life.
Moving on from SMUS, he completes an undergrad degree at the University of Victoria. Joined by many friends, including basketball superstar Steve Nash and Olympic gold medalist triathlete Simon Whitfield, he then sets off in the spring of 2002 on a well-chronicled Ride For MPS. Biking the length of Vancouver Island, some 500 kilometers, he raises over $250,000. For this, he is presented the national Spirit of Sport award, which he accepts in Toronto with his standard grace and humility, before a standing room only crowd.
In 2003, Simon leaves town and returns to Toronto. I am desperately sad to see him go. I miss meeting for coffee and beers, miss our chats, miss his dry sense of humour. Yet, his reasons for departing are understandable, as he is accepted into a clinical trial for an enzyme replacement drug called Elaprase.
Once again, in undergoing exploratory medical treatment, he faces an uncertain future. For eighteen consecutive months he travels each weekend to North Carolina to undergo painful intravenous transfusions. I marvel at his courage, at his positive attitude, at his ability to handle pressure. The pressure to stay alive! And I rejoice in the small but noticeable improvements to his health. The Elaprase cannot completely reverse his MPS symptoms, but he discovers new energy, his breathing somewhat less laboured, his joints more flexible. While his sacrifice gives real hope to others, particularly young children, similarly afflicted.
Six productive years follow, marketing and fundraising for the highly regarded sports organization Right To Play. For good measure, after winning numerous additional awards and spurred on by finally meeting others who suffer from his medical condition, he then turns full time health care crusader. He sets up Ibellieve, a foundation that incorporates his surname, to secure funding and find a cure for MPS. He further forms Be Fair 2 Rare, an outreach program that advocates for Canadians suffering from other debilitating rare diseases.
As he spreads his gospel, I come to appreciate even more his messages, his example and his values. Not surprisingly, he becomes a persuasive, engaging, public speaker, and the ultimate people person. By now well connected to CEOs, world famous athletes and celebrities, he still finds time for others. To paraphrase Kipling, “though Simon walks with royalty, he never loses the common touch.”
While sheer geography keeps us apart for long periods, our friendship never wanes. I look forward to his texts, to hearing his raspy voice over the phone, to the tall tales and the laughter. Meetings in person, if too infrequent, are even more special. We plan and scheme. At his urging, some ACC hoop, North Carolina vs Duke, is on our docket. Yet, at my end, something always seems to come up. We'll do it next season, I tell him. Now, I bitterly regret not going on that trip.
The end of May again draws nigh. Victoria will wake up to its usual gorgeous, warm spring mornings. This time, the crows will be elsewhere, lurking in other, far away shadows. Still, for me, the heartache returns, given that today marks the fourth anniversary of Simon’s passing. It is especially poignant on this occasion as, due to Covid restrictions on large gatherings and mixed class activities, our school cannot celebrate such a distinguished alumnus, role model and friend in the manner we normally do each year.
I especially want our students to know about him. To remember him. To hear about his health battles, to learn about his considerable accomplishments and the impact he makes. To appreciate his legacy, his astonishing bravery and resilience, his gratitude, his complete absence of self-pity. To treasure the fact that, while acknowledging the challenges, Simon instead chooses to focus on the opportunities presented by living with a rare disease. His life provides important lessons for us all.
I count myself extraordinarily lucky to have met and befriended Simon Ibell. He may have topped out at 4’8”, was somewhat short in stature. Yet, he remains a giant in every other way.