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 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!

Although Jerry Lewis announced months ago that he would relinquish his tux and microphone and retire as host of the MDA Labor Day Telethon, I still expected him to make a final appearance on this year’s broadcast. I imagined Jerry would show up, thank everyone for decades of support, and exit gracefully. He said publicly that he would return for one last go around. He said he would be there to perform his signature exit song, ‘You’ll Never Walk Alone’. But apparently MDA would have nothing of it. Obviously, this was a forced retirement by the board members of the very organization that Jerry Lewis made famous. Jerry didn’t just retire as host. Jerry didn’t just step down as National Chairman. Jerry didn’t just pass the baton or hand over the reigns to the future of the cause. He wasn’t even given the opportunity! Unfortunately, Jerry Lewis was fired, axed, canned, handed his walking papers and shown the door. A lifetime of dedication and success, and he gets dumped and swept under the carpet? Sorry, but a man who devoted more than half of his life to a noble cause did not deserve to be phased out in such a cut-and-dry fashion. An American Institution like Lewis deserved a final bow, a curtain call, a swan song and a ride off into the proverbial sunset. But MDA didn’t even have the decency of putting him on stage for one last hurrah. That would have been the right thing to do, the absolute least they could do.

Years of faithful – and highly successful – service were encapsulated in some scripted gracious words and a little video tribute. No song. No grand exit. No bow. No wave good-bye.

Poor form, MDA, very poor form.

Yes, Jerry Lewis lost his relevance. Yes, the act became exhausted and Jerry got old. Change was inevitable, and MDA finally elected to sever ties. Of course, his retirement was actually about twenty years overdue. Yeah, it was time. It was time a long time ago! The folks at MDA knew it was time. Patients and families knew it was time. Donors and sponsors knew it was time. Even Jerry knew it was time. Still, MDA executives handled things badly by not allowing him back on the air for a finale.

Jerry put muscular dystrophy on the map and raised a ton of awareness and cash. Everybody knew Jerry Lewis as the celebrity force behind the Muscular Dystrophy Association. Jerry was totally cool then. He was a star, a member of the famed Rat Pack and hung out with Sinatra and Dean and Sammy. When the Telethon gig started in 1966, you couldn’t find a better person to host than Jerry Lewis. He was perfect for the job! He was a master showman, a movie actor and beloved comedian. And with his connections and network of well-known entertainer friends, he was a lock to rake in the big bucks! At one point, all Lewis had to do was simply ask for money to help his sick Kids, and he would get it, no questions asked. However, as the years passed and his spotlight dimmed, Jerry was forced to pull out every emotional ploy in the book to get people to dip into their wallets and give. I liken Jerry to an aging baseball pitcher whose fastball disappeared and then must rely on junk to get hitters out. His fastball was his star power and popularity and ability to infuse laughter into such a tragic and seemingly hopeless reality. “Smile though your heart is aching,” indeed. And it worked, and the money poured in. Then came the junk pitches. Pity rose to the forefront, eyes welled non-stop, asking became begging, laughter diminished and sadness and despair took over. Sure there was the entertainment and the humor and the shtick, but drama prevailed on the annual Labor Day Telethons, and the money continued to roll in. Jerry was the holder of heartstrings, the monarch of melodrama, the prince of pity, the wizard of wallets. And his efforts paid off. During his 45 years as host, he scored $1.66 billion for MDA and Jerry’s Kids, a magnificent achievement in itself.

Research still has not produced a cure, even after all these years and all of this loot, but hey, it’s not like you can just drive on over to the Terminal Disease Depot, go to the neuromuscular disease aisle, grab a cure off the rack, plunk down a few hundred million and take it home. If a cure ain’t there, it ain’t there. I get it. I dig it. I totally understand and I do not blame Jerry. My beef with Jerry Lewis was that he always promised what he could not possibly deliver – the elusive cure for muscular dystrophy – and with his do-whatever-it-takes fundraising mentality, he made those of us with the disease look needy and pathetic in the process. But as we know, it’s all about the drama and getting the money. And the show must go on somehow, right?

I decided to tune into the Telethon the other evening for two hours – probably longer than I have in the past twenty years combined – for mere nostalgia’s sake and to catch a final glimpse of Jerry Lewis in action, which never happened due to MDA’s lack of class. I was also curious to see for myself if things on the Telethon were indeed changing for the better without Lewis. Was this the end a stagnant era for MDA and perhaps the start of a fresh new one? Or should we expect much of the same old same old? Well, I did notice a tad less sobbing, but I guess that was because they could only cram so many tears into a shortened, 6-hour broadcast. And it wasn’t as pleady as usual, for the same reason I imagine. The entertainment seemed a little beyond tolerable this time, but do you seriously believe that people gave money because they got to watch Billy Ray Cyrus sing? Pity will always remain the key to bringing in the green, and MDA will continue with the do-whatever-it-takes tactic. That part will never change, Jerry or no Jerry. But even without Jerry, I somehow still gagged when two mediocre singers and a quartet of celebrity hosts pulled a painfully lame Salute To America out of their butts, complete with an infernal scat by Maureen McGovern, some marching, and red, white and blue confetti. This was MDA’s idea of a grand finale? Even Jerry couldn’t do anything that dumb in his day! Regardless, MDA managed a huge haul once again. Yes, MDA will score just fine without Jerry at the Telethon helm, but they are only building on the foundation that he laid eons ago.

Lewis was arguably the best campaigner and fundraiser the public world has ever seen, I’ll give him that for sure. I couldn’t stand his methods, but they sure were effective. I know that I have been tough on Jerry Lewis in the past, but I certainly will not deny the man his rightful props. Over a billion dollars raised. Dues paid. Purpose served. Legacy left. Forty-five years was quite the run. Thanks for everything, Jerry. Now let’s see MDA flex some muscle of its own.

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 finally had an opportunity to use my brand new 35mm lens on my Nikon D90. I was down in Miami Beach for the day visiting my best friend at the famed Fontainebleau hotel, and figured it to be the perfect place to get a few photographs. Shooting in steamy 98 degrees beneath a relentless sun was the only negative, but I managed to endure in the name of artistic expression!

I had been lugging around a cumbersome zoom lens on my camera, but preferred something shorter and lighter, and easier for my nurses to affix to the mount on my wheelchair. I also wanted a simple lens for everyday application, and the 35mm certainly fit the description. My first experience with a smaller lens went surprisingly well, and I am elated with the results!