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!

When I came to the realization that every Christmas from here on out may very well be my last, I began to see the things I’ve always taken for granted in an entirely new light. I know that Duchenne muscular dystrophy will one day keep me from all future Christmas celebrations, and I understand that the time for appreciation is now.

I appreciate the decorations and gift exchanges more, and all of the other pomp and circumstance surrounding the season that much more. I appreciate family and friends more. I enjoy my mother’s lasagna more, simply because I don’t know if I’ll be around to taste it in a year from now. I focus on the true meaning of Christmas more than ever these days. It’s about a special and miraculous birth, and regardless of being born into a life of terminal illness, I am truly blessed. I lived to see another Christmas when the odds were hardly in my favor, and I am grateful.

My Christmas wish is that you all show respect for the lives you have been given. Celebrate birth, embrace life, and be happy. Merry Christmas!

Tom Mecke is the man! Tom Mecke is my hero! Tom Mecke hit the big 5-0! I know, people turn 50-years-old every day, so why is Tom’s birthday so special? Well, Tom has a little disease called Duchenne muscular dystrophy (DMD) that usually steals life away at a much earlier age. Fifty is beyond a lifetime for guys like us. Fifty is rare. Fifty is huge. Fifty is a modern medical miracle!

Tom came along during the dark ages of DMD, when hardly anything was known about the disease. There was absolutely no hope for any real future. Things were bleak at best. Therapies? There were no therapies. Research was far from intense. Drug trials were virtually non-existent. Medical technology was primitive. Tom was born when iron lungs were considered high-tech devices. In fact, he even slept in one of those contraptions for years. He has come so far – fifty years to be exact – and has seen so many positive changes. Although a precise cure has yet to be found, Duchenne muscular dystrophy is now somewhat treatable. Numerous therapies and cardiac medications and implantable defibrillators and portable volume ventilators have certainly prolonged the progression of this disease and preserved so many precious lives. These advances have also vastly improved the quality of life.

There is no definitive medical explanation for his longevity, but Tom has his own theory. “Well, it is partly a family trait,” he says, “and the rest is from keeping my mind busy and from being just plain hardheaded.” Tom realizes that if you give just one inch, this disease will take ten miles in a snap. Tom is a man who simply refuses to budge. He is 50 and still going, and that is proof positive! His philosophy on life with DMD is what sustains him. “Do everything you can possibly do with what you have,” he asserts, “and definitely keep dreaming.”

Tom gives me the hope that perhaps my days are not quite as numbered as I thought. I am 43, but now I can look forward to more years of living. Turning 50 is hardly out of the question for me and for a world full of others with Duchenne. A real role model does exist, my friends, and his name is Tom Mecke.

Duchenne muscular dystrophy nearly was the Grinch who stole my Christmas. However, my Christmas came early this year, in November, when I received the greatest gift imaginable – another chance at life. No, I am not George Bailey from It’s A Wonderful Life, or was I visited by three ghosts, like Ebeneezer Scrooge. However, I did get a new lease on life, and I am more thankful than ever to be here to celebrate Christmas this year. With blessings already counted, I give you the story:

I was sitting at the computer minding my own darn business when the lights in the room suddenly went dim for a few moments, my head felt like bees were flying around inside, and my pulse rate plummeted into the low thirties. Turned out that I had experienced a complete heart block! According to my cardiologist, Dr. Chapman, this technically should have spelled the end of this blog and the end my life. Instead of the lights going dim, it really should have been lights out! Fortunately, a miracle happened during my visit to the emergency room – my heart seemingly flipped a switch and somehow corrected itself, and I survived.

But I wasn’t free to celebrate just yet, as it was likely that I would be hit by another complete heart block at any time. To avoid this, Dr. Chapman recommended that I get an Implantable Cardioverter Defibrillator (ICD), which is a combination pacemaker and defibrillator. The pacemaker would prevent my heart rate from dropping dangerously low and the defibrillator would shock my heart back into a steady rhythm if it started racing at a life-threatening pace. Great, not only would my pulse be controlled, but I could also be zapped at any moment. Yeah, like I can’t wait to be electrocuted! I kept envisioning myself getting shocked, flying out of my wheelchair and smashing into a brick wall like Wile E. Coyote in a Roadrunner cartoon. And to top it all off, I needed to have the ICD put in right away! Sudden surgery to guard against sudden death was not my idea of fun.

When Dr. Chapman showed me a sample of the actual device, I could not believe that it would fit in my chest. After all, I don’t exactly have pecs like the Incredible Hulk! Although the ICD was about half the size of an iPod, it appeared huge at first sight. Two wires would go from the device down through a large artery and be attached into my heart. You’re putting that thing in me? Was this guy insane??? I had been fighting the notion of an ICD tooth-and-nail for the past few years, but in light of the fact that I had just narrowly escaped death, I was forced to reconsider. The options were: be a sitting duck without the device, or get it and have some sort of protection against potential sudden death. My choice was simple – get the freaking thing! I wasn’t about to let Duchenne muscular dystrophy push me around. I was ready to keep fighting for my life!

Chapman called upon cardiac arrythmia specialist Dr. Roland Filart to perform the implant. Filart reviewed the procedure and filled me in on the risks, which were exceptionally high for someone in my condition. He told me that there was a slight chance that I could even die on the operating table. Die? Wait a second, that wasn’t part of the deal! Sure, I was scared, but I had tremendous faith in this man, especially since Chapman recommended him. And as a Christian, I also had an overwhelming faith in the divine, and knew I would be spared. Plus, I had a strong faith in myself, that I could weather any storm. I have been battling Duchenne muscular dystrophy all my life, so this surgery would be no different. I would not be beaten.

Dr. Filart awoke on the morning of the surgery with an epiphany. Instead of seating the ICD directly under my thin skin, which could cause erosion over time and would require additional surgery, he decided to place the device between my pectoral muscle and ribcage for extra support. However, this would require the handy-work of a thoracic surgeon. Enter Jeffrey Bott. Dr. Bott was the best in the business at this sort of thing, so I knew I was in good hands. He even took a moment to pray with me – and my family – right before I fell under the anesthetic. This only boosted my confidence in the guy. The procedure went exceptionally well and I survived.

I like to think of Chapman, Filart and Bott as my own personal Magi, the Three Wise Men who, together, gave me a single gift – the continuation of life. I am extremely grateful for these men, for the star that guided them, and for being alive to see another Christmas. My wish is that you all can find a way to appreciate the lives you have been given despite any adversities you might face. Merry Christmas!

My dear Uncle Frank had been battling a cancer that recently came out of remission and was stuck in the hospital for the past several weeks receiving treatment. Well, last week we were notified that my Uncle Frank did not respond to the chemotherapy and was given only a miniscule amount of time to live. My distraught mother got on an airplane headed for New York the next day with the hopes of seeing her younger brother one final time. She could hardly wait to hold his hand and smother him with parting hugs and kisses. Unfortunately, as she was racing to the hospital, the call came. Her beloved little brother had died. Mom was heartbroken, as she was just minutes away from her wish to see him alive once more. I, too, felt a similar heartache when I received the tragic news. I spent all day hoping that my mother would be at his bedside and could hand over the phone so that I could speak to him for a brief moment. I spent all day struggling to assemble the right words that might lift his weakened spirits, even if only for an instance. After all, what do you say to a loved one who is mere hours away from imminent death? I finally decided that I would start by uttering the phrase used whenever we would greet each other, “Helloooooo Uncle! How the hell are you?” I needed a familiar opening, something that would put us both at ease. Then I figured that I would go right into the sentimental stuff: “Uncle, I know that you are going through a rough time and I am sorry that I couldn’t fly in to be with you. But I just want to tell you that you have always been like a father to me and I love you with all of my heart. Thank you for being my Uncle, and for loving me too.” I would somehow end the conversation quickly, as I wouldn’t want to tire him any further. I wanted to say these words. I needed to say them. Alas, I missed the opportunity.

Uncle Frank was laid to rest yesterday, and I will always have fond memories of our years together, but I will always find it hard to believe that he is gone. I always envisioned him at my funeral consoling my parents. Don’t get me wrong; the rarity of growing into middle age with Duchenne muscular dystrophy is a true blessing for which I am extremely grateful. I just never thought I would live long enough to see my Uncle Frank or numerous other relatives and friends die, yet somehow it has happened. You know, beating the odds for survival often comes with a steep price, and I am left picking up the tab. Now, I could either be miserable over this fact, or totally disregard it and be happy to be alive. Fortunately, I have chosen the latter.

I can vaguely remember New Year’s Eve of 1989. It meant nothing to me as I was so far out of it at the time to care. I had severe pneumonia, had a tracheostomy tube surgically implanted into my neck earlier in the day and was placed on a ventilator. As I lay barely alive and hardly awake in the Intensive Care Unit of the local hospital, several family members and friends gathered in a semicircle around my bed. They all held hands and prayed for me as the big ball was dropping in Times Square. This was how they ushered in the New Year. I, on the other hand, was ushering in three more months of seemingly endless rehabilitation. I entered 1990 in the same critical condition as I left the previous year, so New Year’s Day came and went without any acknowledgment on my part. Somehow I battled my way through the next ninety days and won. My new year and new life began when I was released from the hospital in March of 1990. From that moment on, New Year’s Eve for me is every night when I go to sleep and New Year’s Day comes if and when I awake in the morning. I don’t look to the final day of one calendar year to end and the first of another to begin to give me reason to celebrate. I just appreciate every single day that I am alive. It is my hope that you all will do the same in 2009 and beyond. Happy New Year!