Read an Excerpt
Kiss of a Dolphin
By Tom Tuohy
Lumen-us PublicationsCopyright © 2006 Tom Tuohy
All right reserved.
Chapter OneThe Story Behind Kiss of a Dolphin
When you were born, you cried and the world rejoiced. Live your life so that when you die, the world cries and you rejoice. ~ Cherokee saying
At the end of the 1980's, with a group of friends, I founded Dreams for Kids, which provides social and cultural opportunities for disadvantaged children. For seven years, we focused exclusively on serving children who had suffered some kind of hardship in their lives. We took them to outings, held parties, and brought them to special functions. We did whatever we could to give these children positive, uplifting experiences, which were out of the ordinary for them.
When the organization was in the midst of its seventh year, I read a newspaper article given to me by one of our Board members about a remarkable young man named J.J., whose story not only impacted me personally, but broadened our Dreams for Kids' mission.
I will go into more detail about those beginning years later in the book, but for now, I simply want to tell you J.J.'s story.
In 1995, J.J. O'Connor was a high school senior and hockey player enrolled at Loyola Academy in Wilmette, Illinois. At age sixteen, hockey was J.J.'s passion. With considerable talent, the only drawback was his height. He was rather short, but played with skill and dedication, and excelled in every aspect of the game.
October 24, 1995, began much like any other day for J.J. His hockey team, in Chicago's Class AA midget-level, was scheduled for its first game of the season that afternoon. During the game, he and a friend from the opposing team went for the puck in a corner of the rink. J.J., who had played hockey since he was four-years-old, attempted to duck under his opponent and tripped.
J.J.'s skates had gotten tangled with his opponent's skates and he sailed through the air. As he described that moment, he recalled feeling like Superman-until he hit the boards headfirst. Then, he quickly realized that he could only wish he were Superman. "I immediately lost all feeling on the way down and never felt anything, even as I hit the ice," J.J. recalled. "I remember looking for my hand and it appearing to be on the other side of the rink because I could not feel it."
"When my head hit the boards, I knew right away that I was paralyzed. It was like everything was leaving my body. When I saw my hand, it was like it wasn't part of my body."
J.J. was taken off the ice on a stretcher and was rushed by ambulance to the emergency room at Evanston Hospital. "I was kind of excited to get into the ambulance. I had no idea this was a life-changing event."
He had fractured three vertebrae. J.J.'s neck and head were fastened to a protective halo, and after surgery to stabilize his spine he would remain flat on his back, for days, then weeks, then months.
He spent nearly three weeks in intensive care, and then he was moved to the Rehabilitation Institute of Chicago, where he stayed for two months. J.J. was transferred to Marianjoy Rehabilitation Hospital, where his hospitalization and intensive therapy continued for seven more months.
When Centimeters Count
That year, J.J. was one of seven hockey players nationwide who broke their necks while on the ice. This was an alarmingly high number of paralyzing injuries, compared with the average of one to two such injuries in a year.
The incredible nature of paralysis is that an injury a quarter centimeter higher or lower on your spinal column can translate into completely different results. When an able-bodied person tells you that he or she has broken their neck or back, they may or may not know just how fortunate they were. When a bone is fractured along your spinal column it comes with extreme risk.
Our spinal cord is the main pathway carrying information from our brain to all the muscles in our body. The spinal cord is protected by vertebral bones and extends from the base of our brain to approximately a few inches below our waist. The tunnel of stacked vertebral bones is called our spinal column. The cord consists of a bundle of nerves called neurons, which carry the messages back and forth to the brain.
When we move our finger or our leg, it is this amazing neurological superhighway that makes it possible, even without conscious thought.
Even the slightest fracture to the protective vertebrae can lead to disastrous results. If the vertebrae impact the spinal cord in any way, even by a slight bruise, the neurons are damaged and paralysis occurs. The signals in our brain that command our movement are unable to reach the muscles.
The amount of paralysis is determined by two factors: the location and the severity of the damage to the spinal cord. The higher the location of injury to the spinal cord, a greater proportion of the body will be affected. A fracture to the high neck area, as with the late Christopher Reeve, can affect the entire body and respiratory system. The difference between a paraplegic (someone who has lost the use of his or her legs but maintains upper body movement) and a quadriplegic (someone who has lost the use of his or her arms and legs) can be just a fraction of a centimeter.
J.J.'s fracture occurred in his neck, at C3, C4 and C5 vertebrae. A fragment of his C4 vertebrae pushed against his cord, and the cord reacted, as did his immune system and the rest of his body. J.J.'s cord was badly bruised, but not cut.
The functionality of someone with a C4 spinal cord injury, such as J.J., is typically limited to full head and neck movement depending on muscle strength, with limited shoulder movement, resulting in paralysis of full upper and lower body. Generally, this also means no finger, wrist or elbow flexion or extension.
If J.J.'s cord had suffered a C5 injury, he would still have use of his arms and might still even be able to drive a car. A C3 injury to his cord would have resulted in him being on a ventilator.
J.J. has been diagnosed as an "incomplete quadriplegic," which means he has some feeling and movement throughout his body. However, all routine daily tasks, from the kitchen, to the bathroom, and even to tying his shoes, require assistance. J.J. requires 24-hour care.
A person with an injury such as J.J.'s requires total assistance, when transferring from a bed to a wheelchair and from a wheelchair into a car. For many individuals with a spinal cord injury, rehabilitation becomes a lifelong process. It takes months, and sometimes years, of learning and practice for a patient to physically manage paralysis; yet it often takes much longer to emotionally accept his or her life as a person with a disability.
Puerto Vallarta, Here We Come
Most of the time I don't have much fun. The rest of the time I don't have any fun at all. ~ Woody Allen
J.J.'s story doesn't stop there. He has become a central figure in the Dreams for Kids' story. In fact, I will share many J.J. stories in this book because they are a great source of inspiration.
For now, I want to jump ahead to one of my favorite J.J. stories because it represents the old adage that, "fact is much more amazing than fiction." The following story also gave me the title for this book, which serves as the metaphor for all that can be accomplished once we connect with those in need.
After a long and determined rehabilitation, J.J. recovered sufficiently to finish high school and to attend college. In his junior year of college, J.J. asked me if I would like to join him on a trip to Puerto Vallarta, Mexico. It was now four years since we had first met, and in that time we had become good friends. He had been introduced to the world of Dreams for Kids and, over time, I had been introduced to the world that fate had given to J.J.
The purpose of this trip? Spring Break, of course!
I had become accustomed to doing whatever I could to assist J.J., as he attempted to adapt to his new life. We had traveled many a mile, so to speak, but this request was altogether different. In trying to gather all the enthusiasm I could muster, I could not help but think of where we would be going and why.
Thankfully, I did not give much thought to the logistical difficulties of traveling to another country with J.J. I was too worried about returning to college Spring Break after twenty years. J.J. was concerned that his friend, Dick Marak, would not be able to negotiate everything that Mexico could pose and thought it would help for me to come since I had been there several times.
Why not expand our horizons? J.J. routinely expanded his and has inspired others to do the same. We decided we were up for the challenge. Foreign country? Spring Break? Here we come! Twenty years later, it was back to the future.
Dick and I decided we would do everything to help ensure that J.J. had the complete Spring Break experience. We were committed to having fun and were especially committed to seeing to it that J.J. had access to anything that the rest of the able-bodied student crowd enjoyed.
Have you ever been on Spring Break? Or have you seen it on TV? Of the thousands upon thousands of students who arrive from across the world, have you noticed that there is a shortage of kids in wheelchairs? There are reasons behind the fact that, of the many students who live with a severe disability, few are ever seen at the most visible of events.
Accessibility for those with disabilities is a problem, which has lessened somewhat over time, although getting around Mexico certainly proved to be a challenge.
However, even with the opportunity for increased mobility and access, for a young person who has a disability, it is more the difficulty of fitting in that limits them. People tend to stare at those in wheelchairs and rarely initiate social contact. As J.J. has shared, it is unpleasant, to say the least, to be ignored and even talked about as if he was not even present.
Another significant challenge for a quadriplegic is that there is an inability to protect oneself. If a car door suddenly opens in front of J.J., he cannot step aside and avoid it. If he sees something falling from above, aiming toward him, he cannot even lift a hand to protect himself. Immobility can be truly frightening.
An Excellent Adventure
Remember what Bilbo used to say: It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to. ~ J.R. Tolkien, The Lord of the Rings
Dick and I considered the many challenges we would face on the trip. Dick's attitude was, and always is, "Let's go for it." I couldn't have agreed more. This, however, was in direct conflict with my recurring thought of just what the heck I was getting myself into.
The challenges began at the airport. Do you think air travel is a bit inconvenient? Can you imagine if you were a quad? Add to that, a late arrival at the airport, a last-minute passport challenge and a final announcement that our plane was boarding. Yikes. Picture the three of us running and rolling to the gate. The last gate, of course....
We finally arrived; drenched with sweat and out of breath, to a terminal so far away it might as well have been in another zip code. Once at the gate, we were rather rudely welcomed to "Flying with a Disability 101."
That means you are the first or the last one to board the plane. Those are your only two choices. We, of course, had no choice. Everyone else was already on the plane and quite settled in. J.J's wheelchair was taken and stored somewhere else, and we were left with the adventure of figuring out how to get to our seats. Dick never hesitated. He flipped J.J. over his shoulder like a sack of potatoes and headed down the jet-way tunnel. He jogged onto the plane and down the narrow aisle with J.J. hanging upside-down over his back, giving new meaning to the phrase, "carry-on."
Have you ever been the very last person to board a plane? Every single set of eyes is on you. Everyone's eyes are looking over the seats and leaning into the aisles. Most of those eyes aren't very kind, as they perceive you are the one holding up the flight.
Dick simply stopped at our assigned row, and pivoted around to prepare to bring J.J. down into his seat. At which point, J.J., still over Dick's shoulder, picked up his head, smiled at all the eyes, and said, "Sorry to keep you waiting."
I sat down and thought, "Oh boy, this is going to be one interesting week." Little did I know this thought would prove to be the understatement of all time.
Breaking the Ice
One never reaches home, but wherever friendly paths intersect the whole world looks like home for a time. ~ Herman Hesse
Once in Mexico, we headed to wherever the action was. It was always fun to see the look on the taxi driver's face when he pulled up. The driver would usually look at the wheelchair, look into the back seat of his cab, and by the time he looked back at us, Dick had the J.J. sack of potatoes over his shoulder again and onto the front seat. Then Dick would ask for the trunk to be opened, fold up the wheelchair and put what fit inside. Before the driver could say a word, the bungee cord came out Dick's back pocket to hold the trunk lid down and we were ready to roll again.
Whether it was the market, the beach, a dance floor, or a party in progress, we made the scene. We kept it up, and in a matter of days, everyone in town was familiar with J.J.
I will never forget the first time our taxi pulled up to the largest, open air, student bar in Puerto Vallarta, with students stacked on top of one another, inside and out. Now here comes the taxi with the wheelchair hanging out of the back. By the time the kid on the front seat of the taxi ends up in the wheelchair, there was a shift in the party atmosphere.
As often happens, when J.J. first entered the bar, those people who did not stare, simply looked away. No one responded to him. If it weren't for the help of others, breaking that ice would have taken a sledgehammer.
Luckily, we brought the sledgehammer and his name was Dick. With Dick leading the way, we would simply initiate the conversations and answer the questions that were on most people's minds anyway. J.J. would be right there, without any reservation, and before anyone could figure out why they were uncomfortable, they realized that this was just another college kid.
Then J.J.'s personality would take over and he would go from being invisible to being the life of the party. J.J. has plenty of personality and charisma to carry a crowd. However, like most people living with a disability, he needed the path of resistance cleared by having friends treat him like he was one of the gang-which he is.
Once you notice J.J. for who he is, and not for what he is sitting in, and you talk to him, his engaging personality and upbeat attitude take over and you're hooked. Actually, as the remainder of the ice melted away, when J.J. rolled in, the competition got a little tougher for the other guys. Young women would be drawn to him for reasons that had nothing to do with the chair. Then, as Dick would say, it is every man for himself. It was always fun watching J.J. and Dick compete for the same girls. In case you are wondering, and almost everyone does, his accident did not take away everything. With effort, the right partner, and the right conditions, J.J. would be, in his words, "good to go."
J.J. soon became the talk of the town. At the pool, if everyone were swimming, we would get J.J. an inner tube. We would then kind of wedge him in the tube, making sure he wouldn't fall through and drop to the bottom of the pool. There, propped up with his head and part of his body above the water, J.J. and his Ray Bans floated in the middle of the pool and hung out like the rest of the Spring Break kids.
Later in the week, as we were sitting by the pool, a truly great moment occurred. Some girls sitting next to J.J. struck up a conversation. Since we were there first, and helped J.J. into the lounge chair, there was no way of knowing he arrived in a wheelchair. The girls could not tell him apart from any of the other students lounging about in pool chairs which, as you can imagine, is what many people in wheelchairs long for. Just treat me like anyone else. Don't let the wheelchair define me. Don't let the wheelchair intimidate you or scare you away. See me. Talk to me.
One of the girls asked J.J. if she could borrow our suntan lotion, which was sitting on the table next to me. J.J. said sure and asked me to pass the bottle.
Excerpted from Kiss of a Dolphin by Tom Tuohy Copyright © 2006 by Tom Tuohy. Excerpted by permission.
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