Testimony to the human spirit
Diagnosed with Amyotrophic Lateral Sclerosis (ALS) more than 31 years ago, Steve Wells, Artsci/PHE’83, has become Canada’s longest-living survivor of the disease. ALS, also known as Lou Gehrig’s disease, is a rapidly progressing and ultimately fatal neuromuscular disease, robbing 80 per cent of victims of their lives within two to five years of diagnosis. While the regular onset of ALS is between the ages of 40 and 70, it is an undiscriminating disease with a third of its patients diagnosed before the age of 45.
Steve understands the importance of spreading the word about this disturbing, and unfortunately, not so uncommon disease, which claims as many as three Canadians each day. Having lost the ability to speak, Steve now shares his story mediated through a computer that he controls with his inner thighs.
Currently ALS Ontario is engaged in a new public awareness campaign, Paralyzing Poverty, to alleviate poverty amongst its clients. Currently 40 per cent of those living with ALS live in poverty – they didn’t start out in poverty–ALS put them there. Paralyzing Poverty aims to increase public awareness about the multiple effects of living with ALS.
Steve has lived his life by taking nothing for granted and expresses how his Queen’s experience was nothing short of phenomenal. Like most Queen’s alumni, he holds many fond memories of his student days. Steve says he cherishes his many memories of house parties, studying in the “Purple Passion Pit” at Douglas Library, road trips, Alfie’s, and much more. ”The common thread that links all of these memories is the great people that I met and became friends with,” he says.
Diagnosed with ALS in 1980, when he was 21 and still a student, Steve was fortunate to have those friends and classmates to rely on. The bonds of friendship have clearly remained. Steve describes the overwhelming support he has received from a group of his PHE’83 classmates. Naming themselves the "Wells' Warriors" in tribute to the fighting spirit of their friend and classmate, they have participated in the Walk for ALS on his behalf, and have set up a website that has raised more than $1,500 from other alumni.
Steve believes that his stubborn and competitive attitude has worked in his favor in his fight with ALS. “I have a terminal illness…so what!” he says. “I accepted the diagnosis immediately and I’ve continued to live life to the fullest, taking ALS along for the ride.” He wants people recently diagnosed to understand that ALS is not an automatic death sentence, nor is it an excuse to stop living life. He still enjoys his simple pleasures like his morning coffee and happy hour through his gastric feeding tube, “I don’t taste them, but the effects are still very real.”
Steve believes that longevity is driven by the passions one holds in life, and he also credits his family for continual support. Despite his limitations, what drives him is trading stock and index options on a full time basis, embodying his motto: “Life is what you make of it.” Steve stresses the importance of being informed. He explains, “ it’s much easier to deal with (ALS) if you understand what is happening.”
Like many other ALS patients, Steve has turned to ALS Ontario for equipment and care resources. With average costs of equipment and care reaching as much as $140,000 per person ALS Ontario offers help where government funding and private insurance do not. An inspiration to countless people, Steve says “If I let myself go down, many people will be saddened.” This thought, he says, “has kept my lows short-lived and relatively shallow.”
Steve Wells has come a long way since his days at Queen’s. Along with working full-time trading stocks online, he has participated in numerous ALS campaigns, fundraising events, and even mentors others. He still travels in airplanes and recently added an eye-controlled computer to communicate. Steve concedes that ALS has rerouted his path, but it hasn’t changed his determined spirit, “I think that ALS has accentuated that which was already me,” he says.
The writer is a communications officer with ALS Ontario. For more information on ALS (and to see how you can help in Paralyzing Poverty), visit the ALS Ontario homepage at www.alsont.ca.