Triathlete and Unforgettable ALS Warrior Poet Spirit
“Decision Must Be Instant… Commitment Must Be Total”
Born and raised in southern New England, Jonathan S. Blais had always been an elite athlete and multi-sport competitor. Given a death sentence in the form of Amyotrophic Lateral Sclerosis (more commonly known as Lou Gehrig’s disease) in May of 2005, at the age of 33, Jon accepted his diagnosis and decided to do incredible things with it. He began waging a War on ALS® from the beginning. This was his way of dealing with it; this is how he lived out his days… fighting for research and raising awareness.
A decade prior to his diagnosis, Jon decided to move from his home in Seekonk, Massachusetts to San Diego to finish school and eventually get his Master’s degree in teaching. Focusing his energy on helping kids who were emotionally challenged and learning-disabled, Jon became a teacher at the Aseltine School. This is also where he became better known as “The Blazeman.” Jon did amazing work with the Aseltine kids. Through summer recreation programs and outdoor activities, his students learned to overcome obstacles and become stronger through hard work and determination. When Jon was told he had ALS, and subsequently only 2-5 years to live, he left the life he’d built, and the many he’d touched behind, and headed back east. In a poignant moment, once caught on film, Jon’s dad Bob, was quoted as telling his son, “You’re coming home to live, not die.”
Competing in triathlons for 20 years, Jon always wanted to compete in an Ironman – especially in Hawaii. On October 15, 2005, only 5 months after being diagnosed, Jon became the only individual with ALS to complete an Ironman, finishing in 16:28:56. He crossed the finish line by log-rolling over it, and since then, the “log roll” has been graciously performed by countless athletes as a symbol of hope, and more importantly, as a means of raising awareness for ALS.
In one short year, the devastation of ALS had taken over Jon’s existence, but he refused to let it break his will. He went back to Kona in October of 2006, not as a competitor, but as a voice for ALS and as a cheerleader; because someone did the competing for him. Brian Breen, a Chicago native who won a lottery spot, learned of Jon’s battle and decided to race in his honor at the 2006 Ironman. A more emotional scene one could not imagine as Breen, the “Crazy Irishman”, log-rolled over that line and ran to Jon’s side. They victoriously embraced each another as one more battle in the War was won. Luckily, NBC was there to “get it on film” and share it with the world. Thanks, Wooman.
Jon’s impact on the sport of triathlon is one that many will never forget. In February 2007, Jon was awarded the Competitor of the Year award at the Endurance Sport Awards ceremony. Two months later, the NBC broadcast of the 2006 Ford Ironman World Championship won a Sports Emmy Award for Outstanding Edited Sports Special, of which Peter Henning dedicated to Jon. Less than one month after Jon’s passing, the World Triathlon Corporation announced a new initiative where all domestic Ironman, Ironman 70.3, and IronGirl events will reserve race number 179, Jon’s Kona number, for a special athlete, a first in the world of triathlons. Since then, many warriors have requested number 179 at various sporting events throughout the country.
In two short years, Jon became a powerful voice for ALS, using the sport he loved to help promote awareness and fundraising to find a cure for this horrific disease. Jon passed away on May 27, 2007 and while he is missed dearly by those close to him, his spirit and the lessons he has taught us all live on.
Jon always believed in ending your story with a quote. Others have already said it best, so it’s better to remember those and go out strong. So here goes… “The meaning of life is to live life”…Thanks, Blazeman.
A Mother’s reflection… by Mary Ann Blais (Jon’s Mom)
When Jon’s diagnosis of ALS (Amyotrophic Lateral Sclerosis) was confirmed on May 2nd, 2005 after having progressive symptoms for a little over a year, it was I that had to lie down at the neurologist’s office for fear of passing out. Jon’s strength was apparent from that moment on when he took his prognosis head on…the War On ALS® was born.
Jon started doing triathlons just before he turned 13…it was not common back then in New England to see someone that young entering races. He made friends easily and some of the older triathletes took him under their wing. Biking was his strongest talent…fearless, giving his parents many a grey hair! Jon also had a talent for building and repairing bikes…he built every one that he rode. We never knew where that talent came from…certainly not from us…
Fast forward to 2003… Jon was living the life he loved in San Diego, teaching, triathlons, rock climbing and everything else he could fit into his schedule. Jon was also preparing to start an accelerated masters program in Special Education in 2004, so he decided to get as much racing as he could that year…a decision he would later question. Jon did approximately 30 races that season, giving his all to the sport he loved. After his diagnosis he always wondered if that amount of training and racing was the trigger for ALS. His ALS was the sporadic type; there was no family history that we knew of. Jon’s symptoms started with loss of fine motor skills, like having difficulty working with the tools he needed to working on his bike. His handwriting, which was never great, got worse so he started to print and the muscle twitching was noticed by his friends. The other major symptom was his recovery times after exercising got longer. There were other symptoms too…many of which he blamed on stress, Pilates and being over extended…
After a hospitalization in March of 2005 for a parotid gland infection he knew he need to see a neurologist…and then internet searches began for both of us…
By the end of April he had seen a neurologist and was scheduled for a spinal tap on May 2nd…as we spoke on the phone several times before that appointment he kept saying he did not want to go through with the spinal tap. Two of his teaching peers were going to take him, so I knew he would not be alone. During that time his dad and I were somewhat in denial and hoping we were worrying over nothing…as we were 3000 miles away and could not see the changes in his body, we did not fully realize what was ahead.
On Monday, May 2nd at 2AM the phone rang…I initially thought it was our daughter telling us she was in labor with our first grandchild…but it was Jon saying “I know I have ALS”. I remember saying…Jon; I will be there in time for your appointment, trying to reassure him. I could barely talk as my mouth was bone dry. It was the longest plane ride and when I first saw him waiting for me at the airport…I thought, well he looks ok…but on closer examination seeing his wrist support on his left hand and the muscle wasting in that arm, I knew different. Reality was setting in for me…as a nurse I knew there was no treatment for this hideous disease. The average time a person had was 2-5 years.
That was the day Jon started planning his War on ALS…and soon the talk turned to planning to get to Ironman to put a face on ALS…his focus was the multisport community that he was a part of and during his research he found several triathletes that had died from ALS…Kona also had been on his bucket list for years.
Jon started researching and asking neurologists if training for an Ironman would accelerate his disease. At the time it was felt that it definitely would and other than stretching and walking he should not push himself further. How does one prepare for such an event without training? His last race had been in October of 2003. Jon was losing his muscle mass and fatigue was settling in. So Jon prepared himself mentally…racing to Hawi, Hawaii and back in his mind…it was all he had, along with the 20 years of racing experience. His goal was to finish…to meet the cutoffs and cross the finish before midnight. He had the weight of so many pALS (persons with ALS) on his shoulder…so many wrote to him saying “Be our arms and legs and show the world what ALS is all about”.
Race day came…we were all there for him, so wanting him to fulfill his dream. He had pretty much lost the use of his left arm (Jon was left handed), his shoulders were atrophying and his once toned body changing…he was heavier than he ever had been when racing. The muscle cramping and twitching so apparent. His 2.4 mile swim was completed with the use of his right arm only, unable to bring his left arm above his head. The hand paddles he was allowed to use came off quickly in the swim. The bike ride to Hawi, Hawaii was the most challenging, having to stop and stretch his cramping body several times and when they thought he would miss the bike cut off the cameras left. We can only imagine what was going through his mind…out there by himself…his first ironman distance triathlon and not having trained or raced in 2 years. The camera men came back when it was realized that he had picked up his pace and the he would make the cutoff. Bob and I often reflect on that day…finishing was so important to him…it was the only way his story would be told. Well he did finish, deciding to roll across the finish line for ALS awareness and a cure. Kenny Woo, the Wooman, his videographer stayed with him right to the finish, running and filming down the finish line shoot. Ken had never done that for any other athlete.
That decision to roll came out of an interview he did with Mike Reilly before the race…he was asked “Jon, if you are approaching the finish shute and cannot go any farther…”What can we do to help you? Jon’s answer was…”come out and roll my sorry ass across!” The roll has now become a symbol of Jon’s memory and the ALS awareness he wanted to leave behind.
There was also another important side to Jon…when asked he would always say “I am a teacher first”, athlete second. Like many pALS, he did not want to be defined totally by ALS and we carry on his memory in other ways such as the Jonathan S. Blais Memorial Scholarship fund where we support Aseltine, Exceeding Expectations and GEN, otherwise know as Girls Education Nepal. All of these organizations foster education through study and sport for those who need the help, both financially and mentoring.
Jon had moved to San Diego after he graduated from college and taught Special Education, the last 5 years at Aseltine School where the students were placed not because of physical disabilities but had behavioral and learning issues. Jon brought his love of the outdoors and sport to motivate these kids one by one…starting an outward bound type of program in the summers where he took them hiking; camping and swimming…some of these students had never been to the ocean…hard to imagine when you live in San Diego! This was where he was given the nickname Blazeman as some of these students came from areas that gangs were prevalent…and use of the word “man” was a term of respect…hence, – Blazeman became his signature.
Jon’s impact on the sport of triathlon is one many will never forget. In February 2007, just 3 months before he passed away, he was awarded the Competitor of the Year award at the Endurance Sports Award ceremony. Two months later, the NBC broadcast of the 2006 Ford Ironman World Championship won a Sports Emmy Award for Outstanding Edited Sports Special, of which Peter Henning dedicated to Jon. Jon passed away on May 27th, 2007…2 years and 25 days after his diagnosis was confirmed. Less than one month later, the World Triathlon Corporation announced a new initiative where all domestic Ironman and Ironman 70.3 events will reserve the race number 179, Jon’s Kona number, for an athlete that wishes to apply. This was a first in the world of triathlon. Since then, many warriors wearing his number have rolled across the finish line for ALS awareness. Jon continues to be the first and only person with ALS to complete an ironman event …our wish is to someday hear the words of a triathlete with ALS crossing a finish line saying…”I am an ALS survivor”.
After Jon passed away on May 27, 2007, in Florida where we were caring for him, we became involved in the foundation he started a few months prior, eventually making it a family foundation which continues today almost 10 years later. Jon’s body was cremated after he donated his brain, spinal column and fluid, plus his peripheral nerves to the University of Maryland’s Brain and Tissue Bank. His organs were harvested by Robert “Vigo” Vigorito who he had met in Kona in 2005. Jon’s foundation supports the tissue program by covering the expenses a family would incur during ALS tissue donation. Please Click Here for more information. This is one of many ALS research endeavors funded by the Blazeman Foundation for ALS.
In two short years, Jon became a powerful voice for ALS, using the sport he loved to help promote ALS awareness and fundraising to find a cure for this horrific disease. While Jon is no longer here to fight his “War”, he is missed dearly by those close to him, and his spirit and the lessons he has taught us all live on. Jon’s ashes have been taken to the far reaches of the world by athletes, a wish of Jon’s as he love to travel and there were so many places he had not had the opportunity to visit before ALS entered his life.
For more information on Jon’s foundation and the research it has funded. Please visit www.waronals.org. Thank you to all the Blazeman Warriors and supporters that have been generous with their donations and fundraising.
Blazeman Foundation for ALS…”so others may live”. Please donate to the Blazeman Foundation and the War on ALS. You can make a monetary donation below or you can Join Team Blazeman and become a fundraising Blazeman Warrior in the War on ALS… and fight with Jon, “the good fight”-Blazeman. If you are interested in joining Team Blazeman, please Click Here.
Mary Ann (Jon’s Mom) in her own words
How Jon did felt to be an inspiration to others? Did he ever expected to become an inspiration?
Jon did not set out to inspire people… he just wanted to find a cure for a disease that receives little attention.
Why are Triathlons so inspiring? What makes this sport so special around the world?
Triathlon inspires the average athlete… many of whom have overcome huge challenges to compete along side their peers and pros alike.
When did Jon began participating in triathlons? Where was his first competition?
Jon was almost 13 when he did his first sprint triathlon in Barrington, RI.
What would Jon say to other people with similar ambitions?
Go for it…and what ever you do… “Get it on film”
Who inspired Jon? Why?
Jon was inspired by his students to be a better teacher… he always said he identified with them as he had similar learning challenges growing up.
How did Jon dealt with obstacles in his life?
He took each challenge as it came… the biggest being ALS… he fought his War on ALS and left a mark on all those he left behind.
What do you like most about Triathlons?
The individual challenge… improving with each race before ALS.
Mention major accomplishments in Jon’s life other than triathlons
Teaching, being able to compete in Kona, and was a terrific son. He was awarded with the NCAS (Nationals Consortium of Academics and Sports) “A Hero Among Us” Award given posthumously in 2008 for his impact on the multisport community to create ALS awareness.
Tell us about Jon’s ALS Foundation
Jon became a powerful voice for ALS, using the sport he loved to help promote awareness and fundraising to find a cure for this horrific disease. Jon passed away on May 27, 2007 and while he is missed dearly by those close to him, his spirit and the lessons he has taught us all live on. For more information on Jon’s foundation and the research it has funded. Please visit www.waronals.org. Thank you to all the Blazeman Warriors and supporters that have been generous with their donations and fundraising.