Dec 17 2009

Josh Winheld

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.

By Scott F. Sands • Disability, Life • 14