When you arrive at the Reeve Foundation headquarters in New Jersey, you immediately see larger-than-life photos of Christopher and Dana through the glass doors in the hallway, and it’s hard not to dedicate much of this race to them. As you pass through the front door, you are struck by Christopher’s immense, empty wheelchair - an image so profound most people are stopped in their tracks.

A reporter once asked Matt Reeve how he felt about seeing that chair, to which Matt instantly replied, “I like it. Dad was all about getting people out of chairs.”

I hope Chris & Dana would be proud of how the Foundation has evolved, and their now adult children’s active role in it. Alan Brown mentioned to me how inspired he is every time he sees or speaks to Alexandra, Matt & Will, and graciously added: “They’ve lost so much more than me.”

We have a motto of sorts of our own at the Foundation, and we talk a lot about it - the “power of we.” We believe everyone has a story, and we welcome and invite each of them to tell it. It is precisely what I’ve attempted to do with my 26 inspirations marathon blog. The impetus for the blog came during a conversation with Jennifer Longdon, when she questioned why we don’t feature more stories about Team Reeve athletes with SCI. And so it began.

Truthfully, I found writing those stories harder than the training, and I would sometimes stay awake at night wondering if I said the wrong thing, or perhaps interjected my own beliefs or feelings, or wrote something inappropriate. There are so many more stories I would have liked to write—but time was short and that list of names is endless.

In addition, we must always remember that, while all the stories are equally important, not everyone in our community has the same hope, opportunities or circumstance. Some people just give up, are unable to tolerate the pain and despair, and oftentimes, there is family strife – a kid that doesn’t understand, a partner who just can’t bear it, a parent consumed by anger. The financial costs are overwhelming and some, tragically, simply run out of resources. The insurance battles and struggle to get basic services never stops: “My insurance company is trying to kill me,” someone once remarked to me.

There are the daily insults, either through inaccessibility, or comments like those Henry told me he often hears: “I think I’m having a bad day, and then I think of you, Henry.” These statements always baffle Henry, as he’s one of the most upbeat, happy guys on the planet. And to be honest, there are some people disappointed with our Foundation, angry about a direction we took or something they’ve seen us do. Occasionally, they’re right, and it helps to remind us that our work is never done.  And there are those new injury calls that keep coming, and that dark circle begins again.

I have the lyrics to a song on my fridge that goes: “I can name the people I know that don’t know themselves without talking to nobody.” Socrates said it more succinctly: “an unexamined life is not worth living.” What I’ve learned from these interviews is the reality that in order to truly demonstrate kindness, you have to experience suffering. And know yourself. The 26 who were featured know themselves as well as anyone I’ve ever met—and allowed me to see from their experiences what love and life is all about.

As the years go by, I may forget some of the details they told me, but I will never forget the way their stories made me feel. Jennifer doesn’t know who shot her, and they never learned who jumped on Julie, but neither of them even cares anymore. I wish I could balance Eric’s smile with Alex’ abandonment. Angela and Fran continue their love of fashion, and Antonia sings like a beautiful bird. Scott is the epitome of what a friend should be, and Rey just wants to serve his country. Bill and Bernadette remind me that if the object of our affection is not always those living with paralysis and their families, then the research doesn’t mean a thing.

Team Reeve, though still in its infancy, is personified by the two John’s. Our founders, and that includes Hank Stifel and Mike Hughes, along with Chris and Dana, would be proud that in our mix are Greg, Danny, Pete, John, Luke, Taylor and Mandy. Marilyn’s been at this the longest, and has remained upbeat all the way, and I will never forget what Janne did for love. There’s my own posse too, of course, John, Henry, Rob and Alan, whom I talk to almost every day.

About a year ago, I was out to dinner with someone who I respect as much as any person I’ve ever met. As we were about to say our goodbyes, we experienced one of those uniquely NY moments - a man approached with his hand out, pleading for money. When I’m with my kids, this would be one of those “teachable” moments when they look to see how I handle the situation, and learn a valuable lesson. But on this night, I became uneasy and stumbled and looked away. My companion simply reached into her purse and handed him a dollar. And we walked away, continuing our conversation without mention of or acknowledging what just happened. Later, when I reached home, I noted this in my journal: sometimes the gentlest touch leaves an indelible mark.

There was a moment during each of the 26 conversations I had where such a mark was made, and I am deeply grateful to have their gentleness in my life.

T.S. Eliot said that “old men ought to be explorers”- he didn’t say anything about marathons. One of these days, I’ll come to my senses, hopefully, and realize I’ve already checked off this box and be done with them. I started running to fulfill a promise I made when my life was spared all those years ago and I lost most of one lung to imperfect radiation. I may be wearing the official number 55276 on my bib today, but I’m an imposter in this race; I don’t feel ready and I’m not certain I can finish, but of this I AM sure: these 26 individuals will persuade me to think not of finishing, but of having the courage to take the next step.

So many people have supported me financially and with their kindness. Every time it seems to get dark, Cristina Carlino sends me a bright beam of healing light. Thank goodness for Steve Jobs and the iPod too - that little invention got me through the long runs, although with 4,000+ songs shuffling, hearing the Beatles “boy, you’re gonna carry that weight a long time” on my last long run seemed a particularly cruel message from the universe.

The staff has been great - Leigh, Rob and Mark challenging me, Aimee standing tall (well, trying to), daily comments from Michele and Rebecca and the two Katie’s, Ed, Steve, Joe and Maggie and Susan astound me and Bea and Trish did a fabulous job of editing and posting all these missives.

Should I need an extra dose of encouragement, I will remind myself of our Board that treats me like gold, and all my tried and true friends who always stand by me. And if I need to smile, I’ll simply think of Kathy.

Whenever I need an answer, I know I can call on my eldest son, Pete, because he, of course, knows everything. Pete thinks I’m too old to do this, Mikey wants me to win it, and David wants me to dance the whole way. And always, Lindsey showers me with unconditional love – no matter how much I frustrate or embarrass her.

When we look out for one another, we all become so much stronger, and that is a big lesson I learned in this process. Almost universally, when talking about the fear side of the ledger, everyone mentioned the process of growing older. My takeaway from this experience, however, is that if you can still see the beauty in something, you will never grow old. Having intimately glimpsed into the lives of these 26 beautiful souls, I’m feeling far more youthful - the Bees Knees - nowadays!

Cheers from London!

Henry Stifel is a gentle giant. There is simply no way I wouldn’t choose to come “home” with him - the guy who brought me to the dance, as the old country western song goes.

Henry Stifel was injured in a car accident less than mile from his New Jersey home on March 12, 1982. He was barely 18-years old, riding in the back seat of a friend’s car and remembers thinking as they sped down the hill, “why are we going this way?” His spine was injured at the C4/5 level. Henry remembers going in and out of consciousness, the incredible noise from the Jaws of Life cutting the car apart, and telling his friends he was fine but to get away.

The fear creeped in as he arrived at the hospital and saw the reactions of others, especially his mom, and his family doctor, who cried when he learned he was on a ventilator. “And it wasn’t allergies,” he noted. That’s Henry - always putting people at ease around him, always making you feel like the special one.

He spent the next 9 months in the hospital. From Overlook to Morristown and then Kessler, and finally, Craig in Denver. His parents refused to accept the dogma and set out to do something about it -creating the Stifel Foundation that later merged with our predecessor, the APA. He grew four inches during that period. And he began to set small goals for himself—to prove that he could do anything. He remembers a visit from his sister and telling her that he just wanted to make it to Easter - one day at a time, and this is an appreciation you feel when you’re around Henry.

He is so grateful his dad, Hank, never stopped riding him. He allowed him no excuses whatsoever. When it came time to return to school, he insisted Henry do so three days before winter break so he would get acclimated. Hank made Henry work every summer, and he was the only one of his friends who had to put on a coat and tie during the summer. That’s the way Hank did it.

There was little hope and positive messages coming forward then, but one night, while watching 60 Minutes, he saw a special about Dr. Petroleum and the FES bike. He followed him to Wright State, then later transferred to William & Mary. Just weeks after his college graduation, Henry joined Morgan Stanley and has worked there ever since.

Henry would like others to know there is a real person in the chair. He wishes people would slow down a bit and reflect more. There is nowhere he won’t go and no one he won’t talk to about his passion for our work. His Dad was the lay pioneer on research in this country, and when Dana decided to hand off her love — the Paralysis Resource Center that bore her name - who did she trust with it? Henry Stifel.

Sometimes we hear allegations we favor one of our priorities over the other, as if there is a conflict between care and cure, and on those occasions we turn to Henry, who truly embodies the hopes, passion and need for both. Henry was called on often to visit the newly injured at nearby Kessler Foundation. He was about to embark on a trip to Paris when he was called and asked to visit a patient who was struggling with the idea of “getting out and about” because she knew Henry would be very helpful.

When he learned he was asked to visit Christopher and Dana Reeve that day, he was excited, but as you can imagine, a little nervous too. Months later, Chris and Dana paid a visit to Henry at his home. It was the Reeve’s very first outing and Henry remembers showing them his van and also his Dad’s loving and sensitive gesture of allowing them to have some private time amongst themselves. It was Fourth of July weekend, and Henry wistfully recalls seeing Alexandra and Matt and Will in those days and how the twinkle returned to Chris’ beautiful blue eyes.

The last few years and aging with this injury have not been to kind to Henry. When he was injured back in the 80’s, doctors didn’t understand nearly as much about the spinal cord as they do now. Henry’s neck, which had been fused initially, became misaligned over time, and basically, it broke again as a result in 2008. His family, friends and all of us at the Foundation were very concerned about him, but Henry’s optimism and courage (and the great medical team at Craig Hospital) got him through Now, thankfully, he’s stronger, taller (literally and figuratively) and nothing can stop this man’s heart.

Henry has no particular motto or mantra. He spends a great deal of time with us, not for himself, but for the good of others. His family continues to be engaged and supportive, and there is now a third generation helping us. Henry’s niece ran a half- marathon for Team Reeve over the weekend and several other family members are very active with our newest events. This is probably not what his parents had hoped for all those years ago, but it is one family business we hope will endure - until we are so successful we can get out of it.

Mile 26 most times is not a challenge for me. The endorphins and the adrenaline take over, and having Henry with me -as he always has been - I’m going to try to really enjoy it. Team Reeve and the NYC marathon are two of his favorites. Some years he’s donned a Superman costume, and he always manages to be at 2 critical points in the race. Henry wants to “open up the world for everybody” and Team Reeve helps fulfill this desire.

To make a donation in honor of Henry Stifel, please visit my London Marathon Fundraising Page.  

 

It’s a guy thing—you walk into a room of friends and you say your hellos. You are most polite to the folks you don’t know well, or the ones you don’t like; your closest friends you greet with vulgarity or insults. That is, if you are me or Danny Heumann. When Danny jumped out of a plane for the first time a few years back, he screamed out only four words: F*@k You Alan Brown!

Alan and Danny were the closest of friends in the same high school class of less than 100 students. After Danny’s injury, Alan spent a great deal of time with him, took care of him at times, and in November of 1987, Alan hosted a fundraiser to raise money for Danny’s foundation. Only six weeks later, on January 2, 1988 at 10:17 AM, Alan was standing in the water at Club Med in Martinique when a rolling tundra occurred - this happens only a few times a year - the water goes out fast, exposing the ground, and a huge wave threw Alan to the sand, making him instantly a C5/6 quadriplegic.

Alan actually heard his neck break and immediately thought of Danny. He saw his life flash in front of him and the white light people describe. He remembers everything - his mind was moving fast, but his body wasn’t moving at all. He remembers screaming at the paramedics, “get me flat.” He refused to ride in an ambulance. His experience with Danny made him aware that he probably would not have survived those bumpy island roads. He was airlifted to Miami.

He arrived on a Sunday, and seven times doctors tried to bring him to surgery, but he had taken in so much water they couldn’t operate. Finally, late on Sunday, his 21st birthday, the medical team was able to operate. Alan spent the next 6 ½ months at Jackson Memorial Hospital. He saw his rabbi in the early days, when things were touch and go, and asked him what he would say if he had to give his eulogy. The rabbi responded: “I’d tell people you were a free spirit, that you wanted to teach people and help them soar.” And from that point forward, Alan began, this would be “his battle.” He didn’t want to be a burden to his parents. He knew he could make people laugh and he knew that he had to set his own limits on what his body could and couldn’t do.

When he arrived back in New York City, there was no place locally to rehab, so he did it at home. He and his mom, Fran, created a foundation in his name to raise awareness and funds for research. Fran Brown has become a Florence Nightingale of sorts to anyone injured in the tri-state area - helping people and families through their challenges with love, compassion and a fierce determination to help.

Three years later, Alan completed the NYC marathon and his brother drafted the legal strategy that opened up the marathon to athletes with disabilities. He began a successful career in the public relations field with an impressive array of celebrity clients, a golden rolodex, and if you’re with him for longer than a couple of hours, he’ll probably show you the World Series Ring he earned while Director of Community Relations for the Florida Marlins.

Some people lead with their intellect, with intimidation, with arrogance. Alan leads with his heart. Always. When you are with him, you don’t see the pain, but it is always there. You don’t see the fear of aging, of the constant medical emergencies, or the occasional dangerous skin breakdowns. All you see is hope. And always the laugh; one can only imagine how he and Christopher whooped it up in their special seats at the Garden watching Ranger games when Mark Messier would come over and tap to them before every game.

A couple years ago, Alan attended a paralysis task force meeting in Washington, DC hosted by our Resource Center. He learned about the rates and dangers of obesity and heart disease with SCI, and he subsequently took up swimming and lost a ton of weight. He went from taking 11 medications every day to just 1. He became keenly interested in our work, and Danny set up a meeting for him to visit our offices.

It changed him. His dear friend, Christine Chambers Gilfillan, remarked to me once that “he’s been a different person since he’s been involved with your foundation.” The feeling is mutual. In April of last year, Alan became our Public Impact Director. He wants to use his skills and voice when appropriate and find others to do the same.

Mile 25 has extraordinary significance for Alan. It’s been 25 years since his injury. He’s undertaken a unique fundraising challenge this year, and each and every day he gets out there to do what Alan does best — connecting, cajoling, listening, helping, challenging. Last summer I watched as Alan went back into the ocean in Belmar, NJ, in the presence of hundreds of tri-athletes who stood and applauded - and cried. It was one of the most memorable moments of my life. Alan shares our vision of trying to create a movement —such an ironic word. He is a rare and special person - willing to take the lead and heat when necessary, and equally happy to let others take the stage. His heart is always extended, his mind moves as fast as his tongue, even if they do get caught up in each other, and through it all – always a hearty laugh. If he can get to 25—so can I.

One more thing:
Bleep You Alan Brown!

To make a donation in honor of Alan Brown, please visit my London Marathon Fundraising Page.  

 

The first time I met Greg Hughes was during our annual fundraising gala in New York City. It was at the end of the evening, and he was tearing up the dance floor with his girlfriend, now wife, Jennifer. He might as well been wearing a lampshade on his head, and the whole dance floor was following his lead. “Who is that guy?” I asked someone, and they replied he was Jack Hughes’ brother and Mike Hughes’ son. I remember my response: “Are you kidding me? I sure wish he could teach them how to have fun every once in a while!”

Let me explain.

In the early part of the decade, the Hughes family made THE most magnanimous signature gift to the Foundation, which propelled our research program and created its infrastructure and open architecture. Many years earlier, Mike, then an executive at Xerox, took a year off to put the finances of the American Paralysis Association (the forerunner of Reeve) into place, and their gift was the natural extension of his involvement. No restrictions were put on the donation - only a desire to use it towards building a viable program that could be sustained and grow.

Jack became the head of the Research and Planning Committee, and much of the momentum the program is now experiencing can be traced to his business acumen and incredible integrity. But when I arrived, although they dearly loved and admired Chris and Dana, they were dissatisfied with the day-to-day operation of the Foundation. During my first meeting with Jack, he sat with his arms folded and not so gently informed me that, with the exception of Susan Howley, everyone at the office was inept. Though Jack did commit to giving me a chance, he said I shouldn’t count on his engagement anytime soon.

Mike, who was part of our development review committee, was even more direct. In a meeting with him I was completely unprepared for, in no uncertain terms he pointed out what I’d said at the previous meeting, what I’d promised and failed to deliver, and what I hadn’t followed through with. Greg laughed when I told him of my early experiences with his family, saying: “Everybody was afraid of my old man. They just didn’t know his bark was always worse than his bite.”

Greg was a high school junior when he was injured in a car accident less than a mile from his parents’ house in Glastonbury, Connecticut, in November 1982. He sustained a C4 injury, and was left with no movement below his shoulders. He spent 3½ months in Hartford Hospital. His parents rallied the family and arranged for a tutor so Greg could still graduate on time with his class, as the continuation of his education was extremely important to them. After graduation, Greg went on to the University of Connecticut where he learned of a government program he was eligible for - a three month trial - and it didn’t exclude pre-existing conditions. So he started doing data transcription for the IRS where he excelled. He later became an auditor and enjoyed a great career with the IRS. Greg currently owns and manages a terrific restaurant in New York City.

Greg is always thinking of others and knows that his injury can, at times, be overwhelming for them. What he most dislikes is the loss of privacy and how difficult that can be, especially in personal relationships. He most especially wants to regain full use of his upper body and bowel and bladder function, and has great hope in the research. What you notice about Greg is that he’s always smiling. In the time that I’ve known him, like many I’ve interviewed, he’s experienced the challenges of life. He lost his Dad a few years back, and the story of how, when he first returned home, Mike built him a ramp so he could get up to his room is one of his favorites. As he explains it, his Dad’s favorite tool was the hammer. But Greg just couldn’t ever bring himself to tell him that the ramp was a tad crooked, and more often that not, he fell off the thing. And he laughed.

Though Greg attended all of our events and research briefings, he never really got any further involved. Until a few years ago, when he helped organize our very successful Connecticut committee that has raised so much money and awareness for the Foundation.

Mile 24 is the home stretch of the race, and when I think of the finish and my return to the comforts and warmth of home, the Hughes family will be on my mind, including thoughts of Greg’s mother, Helen’s, incomparable Irish Soda Bread and the delectable meals she lovingly prepares for the entire family that I have had the privilege of enjoying on occasion. Brother Jack in now the Chairman of our Board and he never misses a meeting. Helen is one of the most gracious and caring and independent souls I’ve ever met. The entire Hughes family is so dear to us that we named our legacy program after Greg’s Dad.

Every month, both old and new supporters inform us they have included the Foundation in their will and would like to join The Michael A. Hughes Planned Giving Society – ensuring that the Foundation will have enough future resources to ultimately make the hopes and dreams of Greg and the entire paralysis community come true.

To make a donation in honor of Greg Hughes, please visit my London Marathon Fundraising Page.  

 

In 1992, Mandy was 16-years old, a superb athlete whose primary love was soccer. That Summer, she was accepted into a student exchange program in Argentina, and was very excited about the opportunity, as she was keenly interested in international communication. She spoke Spanish fluently and was starting to learn Italian and French.

So on the one hand, you had this incredible athlete, scholar, blossoming student of the world - and on the other, it’s easy to forget the teenage girl part. But Mandy reminded me she had all these stickers and posters on her bedroom wall, and one in particular that foretold what was about to happen to her: SH@T Happens. (I learned in the writing of this blog that we can’t swear on our website - something that strikes my colleagues and friends as hilarious.)

Amanda was a passenger in the car of her host family; they didn’t hit anything, but the driver lost control and went off the side of the road and the car rolled a few times. Her head hit the roof, compressing her spinal cord and causing the 4th and 5th cervical vertebrae to shatter. Mandy was paralyzed from the shoulders down and spent the next three weeks at three different hospitals in Argentina due to complications. She was later airlifted to San Diego where she was hospitalized for another six months.

She remembers she never got that “speech” at the hospitals in Argentina – the one so many others hear from an insensitive doctor or nurse. You know, the one that predicts how limited your life will be. Unfortunately, her family back in the States heard plenty of that, and she was more worried about their ache, getting on that plane to be with them and what they were feeling, what sadness they had.  That's Mandy - even at 16 years old.

What makes Mandy Salas so unique is that she never for one second cares what anyone else thinks—she still felt the same way. She had great dreams and hopes for the future, she had a terrific family and she was going to graduate high school with her class (which she did, of course). And that damn (can I use this word on our site—we’ll see I guess) bubble sticker appeared again a few months into her hospital stay in San Diego, there was another car accident—one that took the life of her step-dad and all the pain and stages of grief came again.

Except for anger. Something she spoke to me about a lot as she always tries to keep an up attitude. When a stranger approaches her and she sees fear or anxiousness, she tries to make immediate eye contact, to smile, to put the other person at ease, as if to say: “It’s OK, I’m doing great” She tells them about a friend who successfully swam the English Channel and equates that success with life: “you’ve simply got to stay on top of the water”

A pretty impressive lady, right? Here’s what I’ve been holding back - Mandy is currently 29 weeks pregnant with a baby boy due on June 25th. (In the spirit of disclosure I have never personally met Mandy, but her sister, Marci ,sits on our Board and is one of the most caring, loving people I’ve ever known. I’ve heard so much from her about Mandy I feel like I’ve known her forever.) She has wanted to have a child for a long time and discussed starting a family with her boyfriend. They did the research and came to the conclusion they would like to become parents. After discussions with her gynecologist, hearing all the pros and cons, but in really didn’t matter much, since during the process Mandy had already conceived. There’s something delicious about Mandy, and she knew the news would send her family into a frenzy. Here she is, 20 years later — talk about turning the tables.

I will never forget the combination of happiness, fear and WTF (swearing again!) that I heard in Marci's voice when she called me to tell me the wonderful news. And, as is often the case with this injury, there’s no road map, a sensationalized stigma, a TV show that leads with the bad stuff first. But Mandy will surely show us the way. She’s been doing it since she was a teenager.

I met Mandy’s and Marci’s mom first, at one of our consortium dinners, and then later I met Marci, who Mandy describes as her older sister, her rock. They are forces of nature — strong, independent and by their youthful appearance, look more like college students. And they give in this world far more than they receive. My own Mom used to have all these corny sayings that I can’t get out of my head. One was “what God takes away from you, he gives back.” And that’s what we have here— during the process Mandy got married, and now, she’s holding out on everyone still—she won’t reveal the baby’s name until his arrival.

Mile 23 is the beginning of the home stretch. It will be good to remember to always keep my head above the water, and that with the right attitude, life just gets better and better. A few years ago, Amanda’s family raised a ton of money for us through Team Reeve. I saw their competitive spirit, their feistiness, and their awesome athletic ability. And their theme, Movin’ for Mandy – I’m in!

To make a donation in honor of Amanda Salas, please visit my London Marathon Fundraising Page.  

 

Taylor Price will change the world. Mark that down and take it to the bank.

On July 8, 2004, he was enjoying a family vacation in Westhampton Beach, NY. Life was great - he’d be entering Georgetown University in the Fall and in Taylorspeak: “life was a blast.” At the beach that day, he dove under a wave and his neck hit a sandbar, breaking C5/6.

Many people either don’t remember what comes afterwards, or everything is a blur, but Taylor recalls it all. He describes the moment of impact as a “dead man’s float” and recalls how quickly and professionally the lifeguards responded.  He remembers feeling the sensation that his legs were over his neck and he kept asking them over and over to straighten out his legs. But they kept responding that they already were.

Taylor describes the moment he was told he was quadriplegic as the time he “went from being fully independent to completely dependent. He spent the next two weeks in Stony Brook Hospital, followed by several months at the Shepherd Center in Atlanta before returning home to Ridgewood, NJ - all the while pursuing the best rehab and searching for answers.  He told his doctor, his family and friends that he was still going to Georgetown, and they were all skeptics. But dreams deferred often taste sweeter, and a year later, Taylor entered his beloved Georgetown.  And next month, he will be receiving his second degree from Georgetown, a Master’s degree in sports industry management!

When I talked to Taylor about this blog, I was surprised by his statement about dependence, as he’s always seemed to be one of the most independent people I know. When Taylor articulates a point, he does so in such simple and profound terms, equating it to today’s political discourse suggesting people make it on their own. He has an attendant, and has learned to accept help from others, while at the same time knows he has to do more by himself.

Taylor feels too many people close themselves off from that reality, and he wants to demonstrate that although the way he gets around may be different, he will reach and surpass all the goals he sets for himself. His injury has enabled him (Taylor’s words) to become more self aware and to prove that he can and will contribute more to society.  “My assets have been reallocated,” he explains, “and it may take me a little longer, but I’m going to make changes.”

Just look at the record. At Georgetown, he participated in the student government.  He’s testified on the Hill, and he served as a White House intern. His Master’s thesis is about disability access in sports stadiums, putting forth a premise that those teams that go above what the ADA requires see an increase in team loyalty, productivity and spending. Boy, do we need those arguments.

Taylor would like others to know how financially challenging spinal cord injury is. And how hard it is for family members, especially parents like his, who hope and wish they  could fix everything. His heart aches at being unable to play golf with his Dad, but when you see the two of them together, you witness a bond and camaraderie far deeper than can be achieved on the links.  I asked him how he feels today, as opposed to those early days, and his response was: “I accept my injury for today and probably tomorrow and maybe even for the foreseeable future. But I will never accept it forever.”

Need I say more?

Mile 22 - bring it on.  Any fear that it might cause me will be cast aside because Taylor would tell me to simply stay in the race, you’ve got work to do. Taylor’s motto—he borrowed it from someone pretty familiar to our crowd:  “nothing is impossible!”

To make a donation in honor of Taylor Price, please visit my London Marathon Fundraising Page.  

The first time I met Mike Murphy, I was overtaken by the warmth and breadth of his smile. It was at the annual gala for the Miami Project, and he was with his dad. On that night, Frank Murphy was not pleased with the Reeve Foundation. Mike raised a significant amount of money through Team Reeve, and a glitch in our system prevented many of Frank’s colleagues from making donations online on our website.

Frank is an incredible person and businessman, with a keen attention to the most minute details, as well as the big picture. You don’t tell a guy like that what your system cannot do; you get on the horn, fix it and set something in place so that it doesn’t happen again. At the end of the evening, I went up to Mike again professing our sincere apologies and he gave me that smile and twinkle and said—“It will be ok. I know you’ll never make that mistake again.”

That’s Mike Murphy. Do things one day at a time, set audacious goals for yourself, remember all setbacks are temporary, and never ever say never.

On April 22, 2007, a Junior in college, he was on a roof partying with his friends, and in an instant, he fell two stories and landed on his back. He remembers being unable to move his legs, and the doctors giving the news to him straight. He remembers his dreams of joining the military and serving his county being forever dashed.

Mike is a deeply religious person, complimented with the ability to feel for those who surround him - his Aunt was paralyzed over 20 years ago, and he knows how she lived her life. He feels he has coped with his spinal cord injury very well, and worries more about his family, especially his Mom, who was hit so hard by this. He’s helped her to realize it was God’s plan, part of which was buying a home that was completely accessible years before his injury.

Almost immediately Mike said to himself, “OK, my life has been changed. Now I’m going to make it better.” And he took up hand cycling. Boy, did he take up hand cycling. Mike discovered that, unlike some other sports, a young age isn’t a necessity to become the leader. Mike has set a modest goal for himself — he wants simply be a Paralympian. At first, his family and friends thought he was crazy - now they all work for him as part of an entourage that brings him to races and grueling workouts daily. And he manages to balance this incredible long-term ambition with a healthy realization that he must make every day count.

Finding balance in life is what differentiates Mike. Time for family and friends, his religion, working toward his degree and embarking on a career. He would like others to know that even though he feels great pain, and the lifestyle can be hard and frustrating at times, his pet peeve is seeing able-bodied people take up the reserved blue parking spaces. Mike feels that if he can make his life look easy, maybe people will be more tolerant. He quotes Isaiah 40:31: “..those who hope in the Lord will renew their strength.” Spend a few hours with Mike and it’s pretty evident how it’s working for him.

It’s said that a marathon is really two races—the first 20 and then another 10K that is pure agony. During the course of our conversation, I realized that the date in London, April 22, is actually the fifth anniversary of Mike’s injury, and I can’t think of anyone better to get me started on the final renewal than Mike Murphy. Tatootted on one arm is the line: “never give up” and on the other what Mike hopes to be: “Elite.”

During Mile 22, I’ll be sure to think of that smile. And as for his goal of being elite - “standing alone” as he puts it - he’s already there!

To make a donation in honor of Mike Murphy, please visit my London Marathon Fundraising Page.  

 

“I saw a man and he danced with his wife”

On August 5, 2006, Janne Kouri was playing volleyball on the beach with some friends and ran down to the ocean to cool off, diving into the waves. But his head crashed onto a hidden sandbar, and he was instantly paralyzed from the neck down.

Janne describes the aftermath as complete chaos and confusion, and actually recalls very little. But his fiancé at that time, Susan Moffat, will never forget how the doctor looked her right in the eyes and said: “You need to be prepared for him never to walk again.”

And so their journey began. The first few months in ICU were rough, and Janne nearly died twice. His family, and most especially his hero - his Dad - remained by his side the entire time. He knew how devastating this was to them, and Janne and his fiancé had those painful conversations —“you don’t need to do this - you don’t need to be here” and Susan, channeling her inner Dana Reeve, promising him: “as long as your heart and your mind stay the same, I will love you.”

A friend recommended them to the University of Louisville and the Reeve-sponsored Neuro Recovery Network (NRN) there. That’s how I met Janne. Our Executive Vice President of Research, Susan Howley - the foremost knowledge base of what is going on around the world in SCI research - told me about this incredible man and his family, and how Dr. Susie Harkema at the NRN in Louisville was so taken with how hard Janne was working and about his dreams for our NRN.

At the time, we were under a mandate to expand our NRN program into community fitness and wellness centers to provide individuals with paralysis the resources to be “fit for life” and extending the continuum of care beyond in-patient rehabilitation to local settings. It was as if the universe sent us Janne.

He began planning what was to ultimately become our first NRN facility outside a hospital setting, aptly naming it NextSteps Fitness, in his Lawndale, California neighborhood. It was a labor of love by his entire family - Dad led the way with needed resources, friends contributed, Susan’s sister, Tracey, planned the logistics. A few years later, this specialized facility was opened that would host activity-based exercise programs incorporating locomotor (treadmill) training, electrical stimulation with bicycling, and cardiovascular/aerobic fitness and strengthening activities into a complete fitness and wellness program, with a long-term vision for expansion to other local neighborhoods around the country.

Janne would like everyone to know you can still have an incredible life after a spinal cord injury, albeit different, and find within yourself a positive way to transform. Sometimes that transformation is physical, but the most significant one occurs emotionally. He appreciates all those who have worked tirelessly to make his life journey better for him – Dr. Harkema, who gave him tremendous hope, Dr. Reggie Edgerton with his brilliant mind and open heart, and all of us at the Reeve Foundation, especially Susan Howley, who’s been at this the longest of all.

The years after his injury have brought many highs and lows. Susan and Janne were married, but sadly, he lost his Dad not long after the opening of the Next Steps Fitness facility. A little less than 3-years after his injury, in May 2009, Janne took his first steps with the aid of a walker. Good Morning America’s Robin Roberts did a story on it, and, in February of this year, Robin visited Janne again to report on yet another of his amazing and most recent milestones – he now can stand independently without the support of a walker.

I quoted the song above made famous by Frank Sinatra (although I like the Judy Garland version much better) because Janne and a friend had planned quite a surprise for Robin and Susan. You see, Janne wasn’t able to dance with his wife at their wedding reception, so when it came time for the Good Morning America TV broadcast, their wedding song began to play, up stood Janne who asked his wife to join him in their first dance as husband and wife, and let’s just say it was one of those moments that makes life grand. Watch that video, and if you are not moved to tears, well – better check your pulse, but there’s not much that can help you.

Janne’s nickname in college was “the general” because he always took charge, just like during our interview. On his arm he has tattooed the Finnish word Sisu. Loosely translated into English, it means strength of will, determination, perseverance, acting rationally in the face of adversity. Sisu is thought to be integral to understanding Finnish culture. The word derives from sisus, which means something inner or interior. The literal meaning is equivalent in English to having “guts.”

Sisu is distinguished by its long-term nature; it is not momentary courage, but the ability to sustain an action against the odds. Deciding on a course of action and sticking to that decision despite repeated failures is sisu. It is similar to equanimity, except the forbearance of sisu has a grimmer quality of stress management than the latter.

Mile 20 is when you basically hit the wall. I will think of Janne and his most befitting tattoo. Sisu, mile 20, Sisu.

To make a donation in honor of Janne Kouri, please visit my London Marathon Fundraising Page.  

 

John Benedetto (JB) was training for his first marathon and John Carson (JC) was riding his bicycle training for a triathlon. JB was at the Jersey shore for the 2009 Fourth of July weekend. (I’ve called it the shore my whole life and refuse to let that stupid show ruin it for me.)

It was a stormy day and the waters were rough, and he was body surfing when a wave slammed him down against the ocean floor and he instantly became a C6 quadriplegic. JB turned the tables on his physicians and remembers his first question being: “Am I paralyzed?” He spent 2 weeks at Jersey Shore Medical Center and then the next 3 ½ months at the Kessler Institute.

Also that same month, JC was struck by an SUV and struggled constantly to remain conscious. He was immediately airlifted to Nassau County Medical Center where the diagnosis was C5/C6 spinal cord injury. After contacting the Reeve Paralysis Resource Center soon thereafter, JC was transferred to The Mt. Sinai Hospital in NYC where he underwent an intensive physical rehabilitation program. Within a month, he regained movement in his toes, and eventually all function returned and he was able to walk again.

There are many similarities in the two Johns’ stories, and there are, of course, differences as well. What they have in common is they are both heroes - they inspire their respective families, friends and everyone whose path they cross. And they both completed the athletic challenges they were prepping for when injured, and did so within a year – a feat that is simply breathtaking.

Marathon running and Triathlon training are solitary efforts. It’s really you against your body, the elements, and your personal endurance levels. Both Johns expressed pride in crossing the finish line after their injuries, but both felt even greater fulfillment by being part of a team - Team Reeve - and knowing they inspired others and raised funds for research.

They gained an awareness they did not have prior to the injury which has changed the way they look at life - helped them to understand what really matters - family, being there for friends, not sweating the small stuff - and reset their priorities. Both Johns also have amazing families that believed in them, stayed with them, cajoled them and inspired them each and every day.

JC doesn’t want any pity parties – he knows firsthand that those living with SCI are adaptable, capable, and meet their challenges head-on. He also realizes the driver who hit him didn’t wake up that morning deliberately intending to harm him, and he moved on from the anger over it pretty quickly. Reading about Christopher Reeve helped him immensely, as he was able to see the fullness of Chris’ life after his injury. Sometimes JC sees notes sent to his family or will hear a remark made by someone expressing that they wish this never happened to him. His response: “I wasn’t fully aware of who I was, or what I could do, or the importance of giving back, and this injury gave me that awareness and helped me become a better person. And for that I’m grateful.”

JB’s sentiments are exactly the same. Prior to his injury, he was consumed by studying finance and his career aspirations, with not enough balance in his life. “The ambitions haven’t changed. I just have a sense of what is important and what living a happy life means now.” And then JB turned the table on me, asking me provocative, hard questions - challenging me. I pushed back initially - only Jennifer Longdon did this in the interview. But I quickly realized that on occasion, disagreement may actually be the best way to better understand something.

Mile 19 simply sucks - it’s like finally getting to the top of the mountain and realizing that you’re either (a) about to fall off the cliff; or (b) the mountain around the corner is even higher. I will need both of these two fine young men and athletes to get me through this stretch. John Carson’s motto is from Chris: “So many of our dreams at first seem Impossible, then they seem Improbable, and then when we Summon the Will, they soon become Inevitable.” John Benedetto’s motto is, “I can do it, I will do it - no matter what it is.

Thank you both for the encouragement and reminder that this is a marathon, not a sprint.

To make a donation in honor of John Benedetto or John Carson, please visit my London Marathon Fundraising Page.  

 

Bruce Springsteen was back in our mutual home state this past week, which got me thinking about another Jersey boy worthy of a parade each time he returns: Captain Reinaldo Gonzalez, II. With no shortage of impressive titles, awards and acronyms before and after his name, this American hero and Army Officer prefers simply to be called Rey.

Every day, our military troops jump from airplanes or helicopters and rappel from buildings in practice drills around the country. A 35-foot fall 5 years ago during U.S. Army Ranger School pinched Rey’s spinal cord at the C-4 vertebrae and flipped his C-6 and C-7 vertebrae. He was instantly paralyzed from the neck down. His first question to his doctors was: "Will I walk again?” They “took the Fifth” and declined to answer.

Three years of rigorous physical therapy, including the Reeve NeuroRecovery Network at Kessler Institute in New Jersey and Shepherd Center in Georgia, bolstered by Rey’s fierce determination and the unwavering support of his family, brought Rey back to the work he loves. And he is still climbing mountains. Literally. And figuratively. Sometimes it’s the little things; sometimes it’s the big things. He met an orthopedic surgeon from Brooke Army Medical Center - a Reeve North American Clinical Trials Network site - and now wears leg braces that have made a tremendous difference.

Rey was walking independently by the time he graced the stages at our New York and Los Angeles benefit galas in 2008, when the Reeve Foundation launched our Military and Veterans Program to help paralyzed American service men and women. (We’ve since provided hundreds of these community members with specialized information and support services and funded dozens of Quality of Life grants targeted toward the military and veteran populations.) Soon after, Rey joined the U.S. Special Operations Command and spent 15 months back in Afghanistan in the highly prestigious and sought after position of Aide-de-Camp, assisting the deputy commander of Regional Command with logistics, meetings and communications.

Tours of duty are part of Rey’s life, whether at rehabilitation facilities - he’s been to seven so far - or deployments to war zones. When Rey returned to Afghanistan, our VP of Military and Veterans Programs, Steve Coleman, organized "care" packages to send him. Steve left a box out in the office and staff would drop in personal notes, dog tags, Team Reeve shirts, and all sorts of goodies to eat. The cynical side of me always wondered whether these packages got to their destination or did we do it just to make ourselves feel better. But Rey told me how much it meant to get them, to share the notes and updates on our work with his fellow heroes and how, for a brief moment, it brought a peace and tranquility to their environment. It's a reminder of how just one small gesture can improve the outlook of another.

Rey would like others to understand the gravity of spinal cord injury and what it takes, on so many fronts, to become independent - finding the right care, having enough support, not being afraid to change facilities or doctors if you're not getting the best treatment or answers. In the short term, he wants to continue to serve his country, but in the long term, he hopes to use the skills he's developed to help people travel the rough times and terrain immediately after an injury. He's thankful he's had access to the best technologies and rehab and he wants to help secure these same resources for the masses.

At Mile 18, the struggle with the demons intensifies, and you know you’re in the fight till the end. You start to see the countdown in front of you, and you get your second wind to knock out one mile at a time. I’ll be thinking about how our very own home grown hero, Rey Gonzalez, has conquered one daunting challenge after another as I tackle Mile 18.

To make a donation in honor of Captain Reinaldo “Rey” Gonzalez, II, please visit my London Marathon Fundraising Page.  

 

When you enter a room Pete Flynn occupies, the gravitational pull of the energy in the room moving toward him is tangible. A handsome young man, with piercing eyes, his beautiful girlfriend, Emily, usually by his side, there is a quiet confidence about him. You can feel his character, kindness, spirituality and his robust sense of humor.

It wasn’t always that way. For the first few years after his spinal cord injury, Pete never left home. He felt awkward and was reluctant to be around his friends, and he hated when children stared at him. He was 20 years old in the summer of 2002 – a college student and athlete - but his future was profoundly altered when his car was struck by a drunk driver.

He awoke in the hospital and learned he suffered a complete C 4/5 spinal cord injury and was now a quadriplegic. Although he describes his 6-month hospital stay as a total blur, he does remember his initial thoughts - his hopes for a relationship and children were gone, and he didn’t want to become a burden to his family. He worried about his Mom, and especially his sister, Maggie, who only a couple of days earlier had lost her beloved dog. He feared Maggie would be emotionally devastated.

Looking back, Pete can now recognize all the signs of depression he actually experienced. Through the perseverance of family and friends, he had the opportunity to meet Christopher Reeve, and that visit helped him climb out of his dark hole. Several months after their meeting, Chris passed away, which challenged Pete to look at his own mortality and his own fears. He gradually grew back his confidence that had been lost-becoming, as Ernest Hemingway once observed, stronger in all the broken places.

During this time, Pete’s mother, Debbie, one of the most compassionate and loving persons I’ve ever known, founded the Quad Foundation, a charitable organization with two simple goals: to financially support SCI research, and to ensure that those who were not otherwise able to access vital rehab could utilize an FES bicycle which was a tremendous help to her son. The Flynn’s hosted a local golf tournament called For Pete’s Sake, and used the proceeds to purchase a van and provide a trainer to everyone in need, changing many lives in the process.

Initially, Pete dreamed of walking again, and while it remains his ultimate dream, he hopes daily for improvements of all the SCI complications most people don’t generally realize, such as the loss of bowel and bladder function, and the effort and time it takes simply to get dressed and ready each day. He also wishes insurance companies could understand that some of the benefits they are now doing away with would actually save money in the long run.

Pete he has learned a great deal about himself and, in retrospect, sees how emotionally disconnected he was in those early days - pushing all the feelings away. He came to realize that when you try to avoid such feelings, they just come back with a vengeance. He knows he is lucky to have such wonderful family and friends, and is inspired by how much love and time they give without expecting anything back. He is equally moved by thoughts of Christopher Reeve with his friend, Michael Manganiello (currently our cherished lobbyist in DC) and Michael’s dedication of his entire life to support his friend.

Pete’s injury “healed” his relationship with his Dad, and for this he is very grateful. He credits Emily most for the return of his confidence, as he feels she understands who he is, proving that when you allow yourself to truly look into the soul of someone else, you will find yourself.

Thoughts of Pete will make Mile 17 - that continued stretch of no man’s land, or blur, as Pete might put it - a heck of a lot easier. His motto is simply to take one day at a time, and regardless of where you are, keep on moving.

Good advice Pete - we were so proud when Quad aligned with us a few years back, and each year at the annual For Pete’s Sake golf tournament, I get to meet families whose lives have been forever changed thanks to Pete and Debbie and Maggie Flynn.

To make a donation in honor of Pete Flynn, please visit my London Marathon Fundraising Page.  

 

Jon fractured his neck and was paralyzed during his 30th birthday celebration after accidentally taking a 12-foot plunge into a 2 foot deep section of the Chicago River and striking concrete.

He required surgery and spent several months at the Rehabilitation Institute of Chicago, followed by a few more months as an outpatient. Almost immediately afterward, though, he began to travel the country in search of the best rehab — spending an extended period of time in San Diego and seeking out Dr. John McDonald at Washington University/Johns Hopkins. Like many others I have spoken with, Jon took charge and became the architect of his own care.

He strongly believes no expert can tell you what to expect or what you are capable or incapable of. He got to know his body well, pushed his limits, and followed a personal diet plan. Unlike so many of us whose weight has steadily creeped up over the years, Jon can boast that he actually weighs less now than he did when he was injured.

He also has a real knack for business — he understands numbers, knows how to manage and unify others, and has an uncanny ability to solve problems. He learned so much of this from his family. Jon’s Dad has been his greatest source of inspiration and his sister, Kelly, is a living example of unconditional love. In her second year of law school, when “all-nighters’ are the norm, she did double duty—spending almost every night in his hospital room.

I heard a great deal about Jon and the O’Connor family from our long term supporter, Bob Yant. In fact, Bob had suggested that Jon join the Reeve Board. He did, and has been a staunch and steadfast ally ever since. He and his sister also formed our Chicago Chapter, and have been the beacon of what we ultimately hope to be — as strong in our local presence as our brand is nationally. Upon meeting Kelly, Alexandra Reeve said to me, “we must put her on the Board as well.” Kelly joined shortly afterwards and was later elected to the Board’s Executive Committee.

Philanthropy comes from a Greek word meaning “love of mankind.” That sums up Jon. In his desire to bring progressive rehab to Chicago, he married the most advanced exercise equipment with his extraordinary business acumen and founded NextSteps Chicago — a community wellness facility that later joined the Reeve NeuroRecovery Network and has helped over 400 people and counting.   And Jon continually looks for financially viable ways to deliver this vital service to local communities.

Ironically, although much of his business had always been centered around ADA work, Jon never really thought much about SCI before his accident. Nowadays, he diligently follows the research and truly hopes to demonstrate by his example that one person really can make a difference and transform. Jon is modest, soft spoken, and one of the most focused people I’ve encountered. As a man of few words, when Jon speaks, it is usually significant.  Comparisons of Jon to Christopher Reeve come easily. In fact, when asked about his motto, Jon simply answered: “It’s Chris’ Go Forward!”

Mile 16 in a marathon is often a mental challenge as well, and the miles seem to be getting longer somehow. At this time, I will turn my thoughts to Jon for the inspiration to Go Forward and take the next steps toward the finish line.

To make a donation in honor of Jon O’Connor, please visit my London Marathon Fundraising Page.  

 

The first time I met Marilyn Hamilton, she blew me away—literally.  I was at a DC dinner and she has spotted someone she needed to talk to and, I’m telling you, a radar gun would have picked up how quickly she navigated that room. 

The occasion was the National Spinal Cord Hall of Fame induction; Dana had been elected posthumously and having been inducted a few years earlier, Marilyn was there to give a presentation.  I turned to our VP of Quality of Life Joe Canose and asked him who the hell was that?

Her energy was palpable and infectious, and she’s been blowing me away ever since.

In 1978, at the age of 29, Marilyn was an avid hang glider.  She loved the freedom and feeling of soaring above.  On the fateful day, she neglected to lock herself in and broke T12 and has been a paraplegic ever since.  She had an early mentor, an Uncle who was spinal cord injured prior to World War 1 in a Model T accident.  This uncle went on to graduate from college and get a law degree and was filled with spirit. 

He was a successful businessman; Marilyn prior to the accident was a teacher, and she leaned on him that first year.  He was an enormous inspiration and lived far into his late sixties—at the time such a lifespan was unheard of.

It has always been impossible for Marilyn to transition away from sports, and within a year, she began to wonder why there wasn’t an easier chair for a women like her and all the people she was newly encountering.  So what does a newly injured, teacher by training do—she gets into manufacturing. That personifies the rebel attitude that she has.

Within a year, the Quickie wheelchair was born with the simple principle of applying the logic of quality, precision and design.  Her business grew as she learned by doing.  She laughs as she looks back on it—she built a company by challenging the dinosaurs that were making chairs at the time.  That simplicity, accompanied by passion and understanding of technology, is what drove her company—and in a few years they were doing 20 million plus in sales. 

She credits her colleagues and surrounding herself with quality people— the door was always open except to the lawyers and accountants—they were filled with too many reasons this couldn’t be done.  She reminded me of a conversation I had with Paul Newman about how he started Newman’s Own: “We knew we could make something that tasted good and was easy to make—if we had a business plan we’d be screwed.”

Years later, Quickie would be sold to Sunrise Medical, and that has given Marilyn more time to devote to family, new business pursuits and mentoring children and women in general.  Her energy is as high as it’s ever been, but she fears aging—and she was quite helpful to us a couple years back on a conference we held on the subject. She has great hope in what she is seeing on the research side and is so frustrated that the “payers”—that is the insurance companies—are so short-sided in what they’re willing to cover insofar as rehabilitation.

Everything about Marilyn is positive and she is one of the great proponents of making those living with paralysis healthier.  She puts a positive spin on everything—she built a company on an attitude and by a belief that if you want to make the world better, lead by example.

Mile 15 is not going to be fun—it was an early wall on my longest training run, and I’m a little worried.  This is the place where the demons arrive and start to play with your head—the remaining miles seem like an eternity.  I will do well to remember Marilyn’s mantra: don’t limit your challenges, challenge your limits!

To make a donation in honor of Marilyn Hamilton, please visit my London Marathon Fundraising Page.

Luke Vogel was 16 years old.  It was Tuesday, December 11, 2007, and after school he was going to try a new jump on the slopes that he’d heard about. 

It took a horrid turn, his skis tipped first, his body went over his head, and the next thing he remembered was everything going black for several seconds and lying face down in the snow. 

When he came to, nothing moved.  He describes the moments as surreal, friends wisely saying don’t move him, the paramedics showing up and being put on a backboard and truck and the trip to Littleton Hospital and then to Craig Hospital.

Sixteen years old.

He remembers being so frustrated in those early days and all the conversations and prognosis that were made and he kept wondering— why?  Why did this happen?  His family was amazing and so were most of his friends, but he’d lost some as well—some could only come once or twice.  Once he was discharged from the hospital, it became even harder—he didn’t want to go out, as he wasn’t sure how people would react.

How he would react.  He could see the pain and fear in his family, but just like his body was experiencing loss, connection with them was a challenge. He was sometimes rough on them, especially his mom—he was, after all, still only sixteen.

He comes from a very athletic family and as such has always been aware of his body, its limitations and how to push them.  The loss of muscle mass and function was hard to take.

It’s been over four years now that Luke was forced to become a man with that twist of fate.  His perspective has changed so much.  He wants people to know that we (he uses that phrase because he looks at his experience as bigger than himself) “can still do stuff.” He has the wisdom to know that what bothered him before—teenage angst as to whether you were invited to a party or not—means nothing.  He knows what is important now. He’s amazed at the way he looks at things today.

The last two years have been a huge adjustment for him.  He left home at 18 to go to Louisville and be a part of the NeuroRecovery Network at Frazier Hospital. It’s been a humbling experience, and it forced him to grow up.  He’s learned that hope after despair is infinitely better than the other away around.  Christopher Reeve would be proud of that realization. His proudest achievement was to be able to walk his high school graduation—the video of which is one of the most moving moments I’ve ever seen.  And he is now experiencing the joys of kids his age—anticipation about getting a van and his designs for it and watching his friends now who are professional skiers—he so misses it and hopes to one day try it again.

Shortly after the injury, all of Luke’s family and friends got together and formed a group Prayers for Luke Vogel.  I watched his family a few years ago team up and run the NYC Marathon for Luke, and he can say freely that he understands the toll this injury has taken on them and how they look to him for inspiration.  The Vogels were at the top of the leader-board that year. This is where I’ve seen him truly grow; he can feel their unconditional support, that they are always willing to talk and be there for him and that things are going to get better.

I’ve had the pleasure of getting to know his mom and dad and siblings and in-laws over the years, and we’ve ridden this roller coaster together.  I’ve cried with them, laughed with them, fought and been inspired.  The highs can be too high and the lows too low, and that is so tough to take.  Mile 14 of the marathon is that steady climb back, and I chose Luke to inspire me because it is at that point when the boy becomes a man, as Luke has done, and I’ll carry with me his mantra:  We believe. 

To make a donation in honor of Luke Vogel, please visit my London Marathon Fundraising Page.

When I told Bernadette I wanted to dedicate mile 13 to her, she promptly replied: “Is that where the queen’s castle is?”  When it came time to talk to her, she had already investigated the course and found where the mile was and told me what   I could expect.

That’s Bernadette. She’s an Information Specialist. She’s our Mariano Rivera.  When the tough calls come in, when a family is backed against the wall and has no hope, Bernadette provides the answers — and if it is possible to hold a hand over the phone, she does it, over and over again.  And she does it with grace, a sense of humor and perspective in much the same manner as she answered my question.  She does it with a love and compassion that knows no boundary, any time of the day or week.

She calls her injury “stupid”—she fell over while reaching for something.  “No,” she cautions before I ask, “There was no alcohol.”  It was 1990, and weeks later there were secondary, degenerative complications.

She is enormously proud of her work, and a conservative estimate is that she’s probably taken over 10,000 calls in her decade plus time with us.  She has the most unique ability to listen to what people are saying and gather their trust—quickly and efficiently while giving them the confidence that she will always be there for them.  She has an incredible grasp of insurance rules, what each state provides, what is going on in the rehab field and what a family can and cannot absorb in those precious moments when confronted with this injury—and that is one of her greatest skills, as we know the earliest decisions often carry the greatest consequence.

She would like people to understand that this is by no way a simple injury; it’s not linear but ever-changing and very complex.  She doesn’t see a simple fix to it, but rather a combination of approaches that are required to combat all the secondary complications.

There are moments when she is overwhelmed—she told me the story of a military patient she was working with for over 11 months who was lost, and she simply cried.  It’s hard to fathom the emotion of 10,000 calls and how one person can process that.  And lately we’ve felt for her as she’s had to deal with the enormous pain and fears of aging with this injury.  Yet she always shrugs those concerns off—thinking of others and believing in “the best of people when they come together.” 

That’s her great hope for the SCI community—we have to be more accepting and realize what binds it is far greater than any differences. When I asked her for her inspirations, in typical Bernadette style she said her colleagues on the IS team, especially Kathy and Jen. “Why?” I asked.  “Because they face these calls every day and they don’t have the personal connection to the injury that I have.” How beautifully thoughtful and selfless, how typically Bernadette.

Mile 13 is the halfway point of the marathon and there is no turning back. When the Foundation hit that point after the loss of Christopher, Dana wanted to find a place for Chris’ nurse’s desk—where every day of his life after injury was planned out. She gave it to Bernadette; it sits in her room, and on it is a picture of Dana and her from the very first Unite to Fight rally in DC. 

Halfway, I will remember that Team Reeve was the brainchild of Bernadette and our great Knowledge Manager, Sam Maddox, and Linda Campbell and a wonderful gentleman, Jim Austin, with our dear friend, Henry Stifel, cheering each and every one. And I’ll think of Bernadette’s motto: “Every day I wake up is a good one.”

To make a donation in honor of Bernadette Mauro, please visit my London Marathon Fundraising Page.