Rebreather Friends: This might be my longest post ever, but please take a moment to read it and share the message. Many of you know my dear friend Matt Johnston. He is the first ventilator-dependent diver and a man who has greatly enriched my life. Captain Gary Mace is heading up the organization of getting Matt down to Florida to see his exhibit at the Man in the Sea Museum. Every day is rare and precious when you are challenged by Muscular Dystrophy.
So far $2,900 towards a $5,000 goal has been collected. We're so close on this and every little bit helps. Please consider donating anything you can spare to get Matt down to Florida to celebrate his 33rd birthday.
Here's the link once more to go and donate. Matt Johnston Florida Fund:
The Oracle - by Jill Heinerth
It’s a rhythm that is surprisingly soothing, a click-hiss that purrs with flawless regularity. When it is working well, the ventilator injects a perfectly measured dose of air that keeps Matt Johnston alive. When he speaks, he must prepare his thoughts carefully, and ride kernels of wisdom on a single breath.
The raspy depth of his voice is testimony to his resolve to preserve the muscles that control speech. His ravaged body has given in to most other challenges, yet communication is an imperative battle. After his fingers failed him on the keyboard, phone contact was his last prospect for speaking to his network of friends and colleagues. Those people make it worth getting up in the morning. Those people help him pursue his dreams. Those people are equally moved and inspired by his strength and tenacity.
Matt Johnston is a diving pioneer, making history in the realm of technical diving. His dedicated support crew are as intimate as family. His strength and perseverance have inspired luminaries like John Chatterton and Susan Long. Diving manufacturers like DUI and Ocean Reef have created specialized equipment to meet his unique specifications. His accomplishments have been lauded by Anne Curry and Matt Lauer on CBS.
Matt Johnston came into this world as an explorer. His curiosity fueled an early interest in the oceans. Despite growing up in the American Midwest, he was destined to bring attention the fragility of our ocean world and the urgency to make things right. His personal battles have mirrored the struggles of our water planet. As his own lungs and body have slowly failed him, he is a quiet but insistent voice from the wilderness. He is watching the lungs of our planet decay and is using his frail voice to bring attention to its beauty and all that threatens it.
At age seven, Matt was diagnosed with a cruel verdict of Muscular Dystrophy. At age seventeen, after a long campaign to get a proper wheelchair, his horizontal posture lead to the loss of respiratory function. When most would surrender to the disease, he resisted, knowing his mission was not yet accomplished.
He has dropped as low as 76 pounds. He has precariously balanced a half hour from death. He has spent months in the hospital. He has been sent home to die with a lung collapsed and pneumonia ravaging what was left of fragile frame. His Dad Charlee remembers every moment of each crisis. A stoic man, he seems resigned to take life as it comes. When I ask how he feels about providing 24-hour care for his son, he calls it a gift.
“It may sound odd, but Matt’s condition has facilitated a relationship that might never have happened otherwise. I mean, how many father’s have this sort of bond with their adult sons?”
After spending time with the family, I realize that rarely do hours pass without hearing, “I love you Dad” and “I love you too son.” These outwardly tough and inwardly gentle men have a connection that few will ever comprehend.
Eight years ago he was ready to give up the fight. Submit to the pain, the reliance on others. And then his nurse Beth asked him, “What have you always wanted to do with your life?”
Matt’s passionate dream in life was to experience the underwater world first hand. Having researched and studied every aspect of ocean ecology, he wanted to see it for himself. The singular thought of floating neutrally buoyant in the water was an added blessing. His body had become a hulk of inconvenience, feeling pain, but immobilized from the disease. His comfort and survival based solely on his family’s ability and desire to move him regularly and take care of all his bodily needs. He had capitulated completely to the people around him in a matter of trust.
I had the opportunity to dive with Matt while he visited the Florida Keys with his extended family. Matt was the catalyst that united his family with his close friends. There was no pre-set agenda, other than sharing the precious gift of time. I couldn’t think of anyone else who could have gotten John Chatterton, Susan Long and myself to slow down and “smell the roses” for a few days.
Planning a diving trip for Matt is a Herculean task of fundraising, organization and logistics. His dear friend and sometimes-nurse Beth had to learn to dive to support him on his journey. His oldest and closest friend Frank Fabio had to book a vacation from work. His diving instructor Drew Gehrling needed to join the group. His friend and supporter Gary Mace had to prepare the diving logistics on his boat and gain permission to visit Jules Verne Underwater Lodge. A wheelchair van, accessible lodging, and local knowledge for potential emergencies were crucial.
Just getting onto the boat is a huge risk. Matt’s bulky wheelchair is too heavy to lift with him onboard. He must be disconnected from his life support, and carried aboard by his strapping friend Frank. Dad Charlee and Nurse Beth pose ready to receive him. Charlee holds him in his lap and with soothing words, Beth gently reconnects him to a back-up vent while Frank coordinates the lifting of the massive chair. Finally Matt and his chariot are reunited and he is locked into the ventilator again. Silently we watch, nervous with anticipation. The ordeal is tiring even though it took less than a few minutes to accomplish.
Firehouse humor is inevitable, when everyone knows that Matt cheats death daily. After steady breathing has resumed, the comments start flying. Captain Gary yells, “finally we got Matt to shut-up for a few minutes!” The often-talkative Matt slings it right back to Gary with a volley of cajoling. And while Gary keeps teasing like a brother, his strong tattooed arm reaches out to gently apply sunscreen to Matt’s face. “Hey buddy, you’re starting to look like that lobster we ate last night.”
When Matt succumbed to the ventilator at seventeen, he grew afraid of the water. What had mesmerized him as a child was now an enemy. He was terrified of showers and convinced he would never swim again. But Matt likes breaking new ground and when you tell Matt he can’t do something, he likes to prove you wrong. “Getting back in the water was pure relief. For the first time in eleven years I felt weightless,” he said.
And so three years of pool training and equipment development brought Matt closer to his dream. But open water dives in a lake in Minnesota were not what he had in mind. He wanted to see living reefs first hand.
They say that when one sense is deprived, others come alive. As Matt’s mobility continued to deteriorate, it only fueled a greater desire to fulfill his quest of diving in the ocean. When asked about the risks associated with such an adventure, he responds, “you got to live your life the best you can. Enjoy it. Its not going to last.”
With Matt, “see you tomorrow” seems like a precarious salutation. And I’m keenly aware that I have the gift of being able to participate in what could be the best day of his very limited life.
Matt’s family is always close by. His little sister Sarah is a very talented musician, perhaps needing to bang drums and play rock music to garner the attention of those constantly circulating around Matt. Step Mom Pam is gentle soul, providing the comfort and support for caregivers and cared-for around her. But when they pass Matt into the arms of his diving partners, family nerves are as taut as piano wires. Still, they put up a good face, sincerely wanting Matt to live out his dreams. It’s a matter of trust.
As Matt descends, he barks orders through his full-face mask. “Increase the pressure on the vent. Adjust my weight belt lower.” Ever in control, he blinks eye signals to his instructor Drew who carefully pulls him beneath the surface. Big Frank holds him and Nurse Beth watches for signs of distress. It’s a continual see-saw up and down to deal with issues with the vent, mask and weights, but finally he is able to view the underwater world while Dad Charlee maintains the flow of his precious gas supply. The mass of bodies moves through the water like a single organism, perilously linked by the desires of Diver Matt.
But despite great teamwork, the ventilator fails. Matt blinks distress and whispers “up.” The call goes out and he’s back on the surface. His pallid face losing color, Frank pulls off the mask. Charlee fusses with the broken machine and rushes to install a back-up. Hoses are flying and his stern concentration is only interrupted to yell, “Get him out!” Beth screeches for the ambu-bag while Matt is dragged to the edge of the dock. Pam and Sarah can only look on with worry. But despite the suffocation, it is only a minute before we hear Matt’s weak voice utter, “sorry guys.” Captain Gary shudders slightly and takes the opportunity for a retort. “If you wanted to start happy hour, all you had to say is get me a rum!”
“Persistence is his middle name,” says Charlee, relieved that today’s diving will come to a close. But Matt is ready to try again tomorrow. And while he dives into the deep blue realms, I’m not sure who gains more from the experience. His mentors are actually students and aids are in fact missionaries, carrying his messages of vitality back to the rest of the world.
Postnote: Matt recently published his first book, "Manual for Ventilator Dependent Quadriplegic Diving." This new book is the blueprint for others who face similar challenges. It is available online at www.divingthedream.org. Matt continues to bring attention to the decline of predators in our oceanic world. He hopes to raise money and awareness that may aid in their survival.
Please think about Matt this Christmas and consider a small donation to the:
Matt Johnston Florida Fund