SCOTT SANDS ALIVE

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!

A few months ago when Josh Winheld’s internal defibrillator went haywire and shocked him several times, I tried to ease his fear of dying with a little humor, albeit twisted. Our Facebook chat went something like this:

Josh: “It was scary and made me think about dying.”

Me: “What are you talking about? You will probably be writing my obituary one day.”

Josh: “No, you will be writing mine! LOL”

Me: “Ha, ha, I don’t think so!”

Josh: “Well, we’ll just see about that!”

Well, I recently learned a huge lesson - never doubt Josh Winheld! I actually learned this one the hard way as, sadly, Josh lost his life to Duchenne muscular dystrophy. The same disease that took my brother and so many of my friends, the same disease that is gunning for me, finally came for Josh. Although his will was strong and his spirit high, his body simply couldn’t take it anymore, and he drifted away. It’s an all too familiar reality for those of us - young and old - with this cruel disease.

Two years ago, Josh became an avid reader of my blog, and reached out to me through e-mail. He sought my advice on how to cope with not having the things in life that those without severe disabilities do. Things like independence, a steady job, a house, or a wife and children were very important to him, but at the time, he was struggling with the fact that for people like us, people with Duchenne, the odds of having those things are slim. He was curious to know how I deal with this issue. I told him that I focus on what I know I can possibly achieve, rather than dwell on what is improbable. And since giving up is just not an option for me, I go out there, do as much as possible, and do it to the best of my ability. Josh completely agreed with this philosophy and a solid friendship was born. I immediately thought very highly of him. He was an overachiever and would not allow Duchenne muscular dystrophy (DMD) to get in his way. We were very much alike in that regard, as well as in our interest in journalism. We both had college degrees in the subject and would often discuss journalism and the way we appreciated a well-placed hyphen or comma. As time went by, our discussion topics ranged from DMD to medicine to women to sports. I gave him such a hard time recently after my beloved New York Yankees knocked off his beloved Philadelphia Phillies to win the World Series. We joked and bantered and philosophized about life constantly. And that was the essence of our relationship. Though we were never physically in each other’s presence, Josh was my friend. He was everybody’s friend.

Josh was only 31, but he achieved more than most people in that short stint. His blog, Winheld’s World, had an international readership. He authored the definitive memoir of life with DMD, Worth the Ride, and donated all the proceeds to Parent Project Muscular Dystrophy. And he even completed his master’s thesis just before his untimely passing. He gave speeches at medical schools and conferences to increase awareness of life with DMD. He made guest appearances on radio shows to talk about the disease. Josh offered support to an entire community of DMD patients and parents. He counseled, inspired, motivated, and gave hope to all those touched by DMD. I even turned to Josh for support as recently as a month ago, when I went through a frightening cardiac episode that required me to have a defibrillator (ICD) implanted into my chest. Since Josh already had one of these, I immediately looked to him for advice and insight into life with an ICD. He was extremely enthusiastic when told about my forthcoming surgery. Josh had no interest in the little details; he was just happy that advances in medical technology have made it possible for guys like us to live longer. “Do it”, he asserted, “Give yourself a chance!” Josh was all about fighting DMD by all means necessary, and he knew that an ICD could be used as a weapon. Again, he was right. Why sit here and simply take it on the chin? I suddenly had a positive outlook on this whole ICD thing and went into that operating room with hope and optimism…thanks to Josh Winheld.

A college degree, a blog, a book, and a master’s all make for an excellent resume. And trails of kindness, caring, support and strength all contribute toward Josh’s work as a humanitarian. This man leaves quite the legacy! “There is no way I am going to waste my life,” he would often tell me. Josh was right. He was always right. Duchenne muscular dystrophy did not win. Josh did. His life was an epic victory, and he taught us that it is better to have lived and experienced despite a terminal disease than never to have lived at all.

Now, I leave you with a story. A scary thing happened many miles away on the day of Josh’s funeral that could have easily had me united with him on the other side. My nurse, James, and I just finished a fast food lunch in my van. James left the van just to toss the trash and get me a cup of water. While he was gone, I tilted my wheelchair backwards a mere three inches causing my ventilator tubing to somehow get kinked and I wasn’t getting any air! I did not panic, and barely managed several unassisted, intermittent breaths through my nose and mouth for about four minutes, which feels like an eternity when you’re fighting hard to breathe. On his way back towards the van, James heard the shrilling ventilator alarm, raced to my aid, grabbed the ambu bag from the back seat and began manually pumping air into my lungs. He then located the kink in the tubing and I was breathing through the ventilator again! I have to believe that Josh - looking down from above - had a little something to do with my rescue. Maybe it was his spirit helping me to take those shallow breaths that sustained me until James returned. Apparently, Josh is still overachieving.

A small, baby blue envelope addressed to yours truly arrived in today’s mail. Now, I don’t always open my mail immediately; I figure that nothing is so important that cannot wait until later, unless it is a bill or pertains to anything medical. Since the envelope did not appear to contain anything official, I blew off opening it at that moment. About two hours had passed before I asked my nurse to open the little envelope. She removed a letter and unfolded it in front of me. Before even reading the letter, we both noticed that the words on the personal stationery were hand-written, apparently by the very individual whose name was embossed at the bottom of the page. This was the stunner of all stunners, and our jaws hit the floor! Does the name Carrie Underwood sound familiar to you? Yep, that Carrie Underwood, the former American Idol turned country music superstar herself! Yep, that Carrie Underwood, the Grammy Award winner and multi-platinum selling recording artist! Yep, that Carrie Underwood, America’s sweetheart who is adored by millions!

So, I bet you are wondering how little old me scored a personal letter from a big time celebrity. I bet you would love to know how I rate a note from Carrie freaking Underwood! Well, my pal Tom Junod, a writer for Esquire Magazine, interviewed Carrie recently and asked if she would drop me a line. Tom tried to get singer Faith Hill to call me on my birthday once to no avail. Fortunately, this time my man came through, as Carrie graciously obliged. She took the time from her hectic schedule to drop me a note. Wow! Now I bet you are dying to know precisely what a huge star like Carrie Underwood could possibly have said in this note. Well, here you go…

Scott,

- Carrie -

This was the ultimate thrill, a huge surprise, and something that really made me smile. Tom, thanks for being my friend. And thank you, Carrie Underwood, for reaching out to your new greatest fan!