Climbing out of the deepest darkest valley.
“For a mountain to have a peak, there must also be two valleys.” - Lukas
Most of us will cruise through life dealing with the normal set-backs and struggles that come with the different stages in our lives. Maybe you stressed over a prom date in high-school, your grades in college, or getting promotions in your career. Maybe you struggled with the disappointment of not getting a job you wanted or the heartbreak of a failed marriage. But what if you woke up one day and discovered you were sick? Really sick. In fact, what if you woke up one day and found out you had a genetic disease that was eating away at your muscles making you weaker and weaker by the day. You began to grapple with severe muscle contractions that occasionally made you unable to open a jar or hold onto a dinner fork? And then imagine this; the new discovery that is painfully taking over your daily life doesn't have a cure, it will be with you forever, and may eventually kill you…
This is exactly what happened to JP Caillet ‘Hacksaw’ when he was 31 years old. Hacksaw has myotonic dystrophy. A rare disease in the family of muscular dystrophies that, if presenting early in life, is characterized by things like breathing problems, muscular weakness, and in some cases delayed development, intellectual disability, and ‘club foot’. Some people see signs early in life, while others are well into their 20’s and 30’s before anything is noticed.
So, put yourself in those shoes for a moment. One day you are kicking around your life thinking about work, the gym, and picking the kids up from soccer practice, and the next day you find out you may not be self-sufficient for even the most basic life tasks for the rest of your life. Boom!
JP grew up pretty typical for a young boy in the USA. He and his family moved around a good bit, but he stayed active in many of the normal activities like playing football in Texas, soccer in the northeast, and enjoyed the ups and downs of his teenage years with his friends. Fast forward a decade or so into adulthood, JP makes a career in computers (even messing around with “hacking” into secure network systems, thus the nic-name ‘Hacksaw’ given to him by his friends at CrossFit Remade, Middletown NY) and getting married to his wife when he was 24. Then one day he noticed some pain in his wrists and he started having trouble with his grip. A colleague at work mentioned that it was probably carpal tunnel from all the hours on the computer and suggested he get it checked out. JP makes an appointment with a hand specialist soon after only to find out that it isn’t carpal tunnel and proceeds to be referred to a neurologist for some deeper testing. Within minutes of seeing a neurologist, she tells him she thinks its ‘myotonic dystrophy’ and leaves the room to get some equipment to confirm her suspicion. So what does JP do…? What all of us would do, he pulls out his cell phone and Google searches the disease. For the next 20+ minutes while he is sitting in the exam room by himself, JP reads some of the scariest words you can imagine.
Phrases like “muscle deterioration”, and “…progressively worsen…”, and “shortened life expectancy” were riddled throughout the literature. And when the doctor finally returned they began a series of EMG tests that consist of sticking large 3 inch needles deep into his muscles to measure there ability to contract and release. JPs muscles contracted but they had a bad delay in returning to normal. She then told JP that he may eventually need crutches or a walker to move around and he should expect to see continued inability to do the things he was used to. And then the big sentence, she wasn’t sure how many years he had left to live. She was brutally honest and it was a complete and total shock for someone who never in a million years, saw their life playing out like this.
JP says that what followed was 2 years of living every day in a “deep dark place”. He couldn't understand how or why this happened to him. What did he do to deserve this? His depression worsened as time passed, to the point that he found himself in the ‘darkest’ of places. He would have to consciously cover up his pain and agony around his wife in fear of exposing her to his torture.
And then something amazing happen. His wife, who proclaimed to have gained a few pounds over the recent years, had a friend who trained at a CrossFit a she thought it might help her get into shape. JP’s wife asked him if he would try it with her. “I remember knowing a little bit about CrossFit and thinking, ‘there’s no way I can do what those guys do. They’re beasts!’ ”, says JP. But like the brave “CrossFit fearfuls” before him, he set aside his angst and agreed to give it a try. To help with the decision, his wife had gone out and found another CrossFitter with myotonic dystrophy named Tanya Rypstra. She was a L-1 coach in Canada at CrossFit Oshawa. JP called Tanya, explained his reason for calling, and she talked him through her story with full transparency and vulnerability. And just like that, JP found the courage to step into CrossFit and forever change the course of his life. JP says if he ever gets the chance to meet Tanya, he would hold her so tight and break down completely, because without her taking the time to talk that afternoon, he may have never found the courage to walk into CrossFit Remade, a decision that he says “saved his life”.
Since then JP has become a regular in CrossFit classes and is determined to fight back the supposed impending limitations of his disease. He continues to battle through workouts and defend his ability to grip, press, squat, push and pull his way through life on his own terms. He says when he got to thinking about it one day, he had a couple choices. He could stay in that dark place, cave in, give up, and wait for his body to dictate his future…Or, he could step up and have a say in how his life was going to unfold. He remembers the days when he was making the choice and talking to himself saying, “stop this shit right now! I don't want to miss out on my entire life because of my circumstances.” It was a defining moment and an incredibly courageous stand he was making.
Hacksaw says he thinks of life in terms of “summers” now. He counts the number of “summers” he enjoys. He doesn't want to consciously succumb to any physician pre-determined years left in his life but finds an incredible joy in really living his summers. Like most of us remember, summers are vacation time, a sunny time, and a time when fun seems to come a little more easily. Summers in New York State are beautiful and you can get outdoors and enjoy the beauty. And, like most of us CrossFitters, he is not a huge fan of running but still having the ability to run means a lot to him; and during the summers he wakes up with tremendous gratitude for that continued ability… and in his words “I just keep running”…
John “JP” Caillet (aka 'Hacksaw') was the recipient of the Be Awesome. Power Monkey Fitness Camp scholarship this past spring 2016. He was recognized by Dave Durante and Chad Vaughn as a person who lives their life in a "Be Awesome." fashion. We are proud to consider him part of the Be Awesome. legacy and we are confident that his fight against the odds and his incredible positive attitude has touched, and will continue to touch, the lives of many people. Enjoy your ‘summer’. Get outside and run...