People always ask how Rebekah and I met, and it is not something I can answer in a sentence or two. We didn’t meet in church, school, at work, in a doctor’s office, or in a nightclub. It’s not like we bumped into each other at the supermarket, or her car stalled in the middle of a parking lot somewhere and I rushed over to save the damsel in distress. Interestingly, we didn’t even hook up in person.

Here’s the story from my perspective…

I was sitting at my laptop planning a photography trip to New York City, when up popped an instant message on Facebook. It was from a man in India – the father of a young boy with Duchenne muscular dystrophy – whom I had friended just a few days prior. He told me about a woman in England with Duchenne who referred to herself as a ‘Limited Edition’, which caught my attention right off the bat! I did know that females with Duchenne existed in rare number, but I never actually knew any personally, so I was instantly intrigued.

He said he thought she desperately needed someone to be close to her, and ease her for some reason he never explained. And he truly believed that due to my age, experience and positive mindset in dealing with this disease, I would be able to motivate her. He asked if I would make contact. So, I raced over to her Facebook page to see what she was all about. She was absolutely radiant upon first glance, and I was absolutely floored! And the deeper I got into her page, I grew increasingly aware that this woman – who went by the cutesy moniker, Rebekah Cupcakes – was someone unique, special and dynamic. This was not the little lost soul the man from India described. The impression I formed in my mind was of a personable, outgoing, feisty beauty – an absolute superstar! And I yearned to get to know her!

Make contact with this haunting vision? No problem!

I immediately submitted a friend request, and waited…and waited…and waited, for two whole days that felt like an eternity! Rebekah finally accepted, but seemed to avoid my instant messages for a little while. Eventually, she warmed up to me enough for intermittent small talk. Soon, the small talk became more detailed and we were slowly learning about each other. As the weeks passed, I could feel myself gravitate toward her. My heart was traveling to a place where I had never been before, a place far beyond a simple crush. In fact, one of our first Facebook chats went something like this:

Me: “Hey, why don’t we rock the Duchenne world and get married?”

Rebekah: “Yeah, Mr. and Mrs. DMD. Ha, ha! Then they could do a reality show on us!”

Me: “I have a crazy idea – let’s change our Facebook status to In a relationship with each other and watch how many people will comment on it. Hee, hee!”

Rebekah: “Ha, ha, let’s do it!”

Sure enough, loads of congratulatory comments came pouring in and Facebook went all abuzz! I know this must sound like a huge practical joke, but serious truth was involved. I guess this my way of forcing the issue. I wanted a girlfriend, and something in me tabbed her as the right one. This girl had a glow about her, and I was entranced! I wanted to make her mine, even if only a dream, even if only for a day. I figured that full-blown love could eventually enter the picture. And I was right!

On Superbowl Sunday last year, Rebekah asked to actually speak with me. I told her that I wasn’t very confident in my soft, somewhat distorted voice – a product of my muscle weakness, tracheostomy, and ventilator use. But this fiery beauty in England would have nothing of it! She was no longer asking, but demanding my participation, so I really had no choice in the matter! From the moment I saw her live on the webcam and heard her sweet voice, I knew she was the real deal. I was struck again, this time by Cupid’s arrow and it hit me right smack in the heart. For me, it was love at first Skype, and I was hooked! And she confirmed that the feeling was indeed mutual.

The attraction between us was instant, and soon after, love happened. It’s been a virtual whirlwind ever since, and I ultimately decided to send Rebekah a diamond engagement ring and propose. I know it sounds a little ridiculous of me considering that I haven’t even met her in person. But matters of the heart go far beyond logic. And she accepted!

Many skeptics, cynics and outright pessimists have told us that this relationship isn’t real and that it will never be more than virtual. Well, my argument is that the true love, desire and longing is all there, so how could it not be real? Hello! 


The obvious things separating us involve health and distance. These are hurdles that Rebekah and I will do our absolute best to cross. I have always believed that odds are supposed to be beaten and we’ve surely beaten our share. And being the fighters that we are, we truly believe that we will be together one day, in the same place at the same time. The man in India believes that we were made for each other. Now we just have to meet each other. No one can predict the future, and it is a long shot no matter how you slice it, however, I know one thing for certain: I would rather have five minutes with her than go an entire lifetime without her.

Here we all stand, on the cusp of Christmas, a time for love and peace, glory and worship, remembrance and forgiveness, and faith. Faith is definitely at a high point right now. Faith is what Christmas is all about. If you don’t believe that a divine child was born many moons ago, then Christmas is totally irrelevant and empty. I believe it, but then I have faith. Everybody needs faith in something or another; otherwise life is meaningless. It doesn’t necessarily have to be in a higher spiritual power, although that’s always a perk. You can find faith in science, in medicine, in technology, or in yourself and your abilities. I happen to have faith in all of it, plus a huge belief in miracles, possibilities, and love. It leads me to believe that one day soon, I will be united with my very special girl over in England. Since we both deal with this terminal thing called Duchenne muscular dystrophy, time is certainly not a given for either of us. It’s now or never, a sense of urgency unfathomable by most people. Thus, we are trying desperately to get on the same continent before it’s too late. We must believe that it will happen – and fast – for without faith, we might as well have nothing.

Although our faith has indeed wavered every now and again due to health, distance and a lack of funds, it is still undeniable. And that is what keeps us together and alive. Faith stretches beyond oceans and the physical, material and virtual. Faith, my friends, comes directly from the soul, and we surely have a ton of it! We’re looking for someone – anyone – to assist us in raising the dollars and services to honor our faith in each other and bring us together.

For now, though, I bid you all peace and joy that follows you though Christmas and the entire New Year. For me, I pray for the same, and that 2012 will bring me cheek to cheek and hand in hand with my Rebekah – the foreign woman who stole my heart away.

Like I always say, it is far better to run on faith than to run on fumes. Happy Holidays!

Two years ago today, I thought I was done, finished, cooked and about to bite the dust. Out of nowhere, the room spun around, the lights dimmed and I don’t know what the hell my ticker was thinking! Yours truly went into complete heart block! Within minutes of my nurse’s emergency call, paramedics were taking vitals, sticking needles in me and whisking me away to the hospital. My pulse dipped to 29 and stayed there for two full hours before shooting back up to 90 in a matter of seconds!

There is no way I should have survived that one, especially at my age and in my tenuous condition. The doctor couldn’t even fathom how I managed to narrowly escape the big sleep that time. Duchenne muscular dystrophy had already ravaged my heart, leaving it hanging by a thread. Well, apparently, that thread is made of nylon because I’m still around to tell the tale.

That was an extremely close call – a little too close for my liking – and I know exactly where I would have ended up had my heart not miraculously corrected itself – deep in a cemetery plot. Fortunately, I was given yet another second chance at life in my long medical history of second chances. But this particular second chance has revealed itself as perhaps the most meaningful of all. It turned out to be the chance to find the love of my life – in England of all places – and a chance to follow the seemingly improbable dream of uniting with her in the near future.

More to come, so please stay tuned!

Turning 45 the other day and beating Duchenne muscular dystrophy to the punch one more time has definitely given me an extreme sense of satisfaction. Again, I managed to bob and weave my way around this killer of a disease, and the grand feeling of accomplishment never gets old, even at my age. Score another round for me. Score another round in honor of my brother, Joseph, and all the other boys and men taken before me. Score another one for the entire Duchenne community. And score one for survival itself! The longer I am able to fight, the more rounds I win, and the more I am reminded to appreciate life and take each day as it comes.

This particular birthday also served as a strong kick in the pants and call to stop my impatient mind from thinking way too far ahead. Duchenne reality denies me the luxury of living in terms of years, months, weeks or days. Heck, with the shape I’m in, even hours and minutes are questionable. I am dealing solely in moments now, and my goal is to maintain my relentless desire to seize every single one of them!

You see, moments accumulate and grow into futures, and futures comprise lifetimes. By focusing on moments, I can relish in looking back on them from a future that was never promised. I remember being a mere teenager and dreaming of a future. Well, I nearly lost my life quite a few times since then, but I have survived through it all to get here. This is where I wasn’t supposed to be, but somehow I made it! This is the future, and I am fortunate enough to be sitting here – far beyond my life expectancy projected by the so-called experts – and recalling 45 years worth of moments.

Enjoying a future sure is nice, but I will continue racking up the moments, even with Duchenne breathing down my neck. I know that while this disease will ultimately steal the rest of my future one of these years, it will not be able to erase the moments that define me. And I intend to keep dreaming, doing, achieving and living because the future is fleeting fast, and the way I see it, 46 is only moments away!

I took this shot of my good friend and fellow shutterbug, Matt Schneider, on one of our photo shoots together. Matt lost his life to Duchenne muscular dystrophy last week, and his passing has left me with a serious void inside.

As a snowbird from Ohio, he spent the past few winters in Florida and we got together every year to hang out, fire our cameras at will, and argue over which was better – his Canon, or my Nikon. We were just two pals with DSLR’s mounted to our power wheelchairs, turning heads and catching stares. But we didn’t care. We were just doing what we enjoyed and to hell with everyone else! Matt was a great chum, and a damned good photographer to boot!

I was fortunate enough to see him one final time in February. My nurse and I traveled over three long hours by van to visit him down in Naples, and I had the chance to watch him in action snapping pictures. Matt recently had laser surgery for kidney stones, yet still insisted that I come spend time with him. I noticed how exhausted he was that day, but I sure had to hand it to him for being a trooper.

Matt flew back to Ohio a few days later, and suffered a series of additional medical complications over a short period of time, which ultimately forced his already fragile heart to quit. He went peacefully – and fittingly – at home in his mother’s tender arms.

I will always remember Matt behind the camera with that sly smirk on his unshaven face. I can’t believe that he is gone, but if I know Matt, he is out shooting pictures somewhere!

In the late innings of the Yankee game in Tampa yesterday, I suffered a sudden and complete lapse of optimism. Duchenne muscular dystrophy had infiltrated my brain and made me a downer. Negativity took me over, and I began to think and dwell and wonder whether or not I will be alive in a year from now. Was this my final Spring Training? Could this be my last visit to Steinbrenner Field? Would I ever see Derek Jeter in-person again? I was struck by an overwhelming sense of melancholy, and my spirit took a punch. When you’re 44 with Duchenne and the clock is ticking in double-time, the question of your own mortality can sometimes hit you extra hard.

I felt an indescribable desire to study my surroundings and began to absorb all of the sights and sounds of the stadium like never before. I paid more attention to the game in progress, the annoying shouts of beer vendors, the advertisements adorning the outfield wall, the cheers and taunts of my fellow fans, the layout of the scoreboard, and the grass, dirt and remaining chalk lines on the field. Funny how you appreciate things more when you imagine what life would be like without them.

On my way out of the stadium, I turned back to soak in the place. Then I approached the right side of the small, roped-off area with replicas of the retired uniform number plaques – like those found in Yankee Stadium in New York – for one potential last look. I passed by the numbers of Reggie Jackson, Ron Guidry, Yogi Berra, Bill Dickey, Casey Stengel, and my all-time favorite Yankee, Don Mattingly. Finally, I came to the legendary Lou Gehrig. Here was a great man and ballplayer who lost his life many years ago to Amyotrophic lateral sclerosis (ALS), another merciless neuromuscular disease. Gehrig fought his battle hard, with grace and dignity, yet he still went down. Unfair. Frustrating. Disheartening. Obviously, this relates to those of us with Duchenne. And whenever one of us succumbs to this disease, I take it personally. I get my dander up. I get outright pissed!

Thoughts of Lou Gehrig instantly turned my melancholy into anger, and snapped me right out of the doldrums. Inside, I was screaming: This is not me! I’m no downer! Duchenne doesn’t rule my mind! Enough of this shit! Of course, I’ll be around in a year from now! Hell yeah, I will enjoy another Spring Training! See you again, Jeter!

I had a little mind blip, but now Scotty Dawg is back. This existence is far from over, folks, and I’ll even guarantee that Duchenne will never get into my head again!