JOSH

“I had a lover’s quarrel with the world.”

-Robert Frost

“With a deadline looming and on the verge of exhaustion, nothing was going to stop me. If only for a moment, I was able to recapture some of my old magic, pushing myself every time I wanted to take a break. Just after midnight, I submitted my paper.”

-Josh Winheld

The world is not fair. Frost must have known this, as the great poet used the above quote as his epitaph. How can the world show so much beauty, love, energy, and kindness, while at the same time produce terrorism, corrupt politicians, hate, lies and disease? Of course there is no answer to that question and I have not fully formed my own understanding of all of it. There are the standard cliches that we all hear: “Bad things happen to good people.” “Karma is a bitch.” “What happened to that person in another life?” When you hear stuff like that, it seems as though everyone is attempting to rationalize, or least understand their own thoughts. Through the dichotomy that is planet Earth, I have chosen to focus on people who radiate more light than heat. I believe that when people touch my life, and vice versa, there is a reason, and a deeper meaning behind each and every interaction. This causes me to think a lot about the relationships I have or have had with others. A special time, and name comes up in my thoughts on a regular basis, although he is now in another place: my friend Josh Winheld.

Josh lived in North Philly and I can’t remember exactly how our lives first intersected, but our friendship took root quickly. The second quote at the top of today’s writing is from Josh. He writes about the completion of his master’s thesis in Urban Studies from Temple University. Josh explored factors preventing local real estate developers from building more housing that is accessible to people with physical disabilities. Josh had Duchenne Muscular Dystrophy, and when I met him, the disease had taken his ability to move freely, feed or care for himself, and breathe on his own. In 2003, before I met him, Josh dropped his Master’s program thinking there was no point in finishing it. He was wrong, and I am glad that he changed his mind, as his thesis, entitled: “Housing Accessibility: The Role and Perspective of Developers in Philadelphia,” included some very interesting findings. His research revealed that real estate developers may not be as antagonistic as is often thought toward making housing accessible to those with disabilities. But he also learned that the developers he interviewed do not feel a moral obligation to make private spaces accessible and that they have a hard time accepting, or even comprehending, the concept of “universal design,” where all structures are made accessible to as many different types of users as possible. Josh offered some recommendations for shifting developers’ views, including seminars for housing professionals and “giving those in the development industry the opportunity to temporarily experience having a disability, as is done in college classes and medical schools.”

“My hope is that by [my] talking to these developers,” Josh wrote on his blog, “advocates for those with disabilities will be better able to understand the development process and can bring about a better housing situation for people with disabilities in Philadelphia, more than a quarter of whom live in poverty and many of whom are aging.”

Josh typed furiously away on the final touches of his paper just weeks before he passed in early December 2009, but not the way you think; Josh typed with his eyes using a retinal scanner that bounced a laser off his vision down to a special keyboard on his desk that was virtual. I visited Josh’s house in Philly and was amazed at how adept he was at writing this way. Instead of being deterred, Josh was happy that this technology existed because when I went to see him, he had just “eye-typed” his 75,000 word autobiography WORTH THE RIDE: My Journey With Duchenne Muscular Dystrophy.

Yes, you read that correctly. This man typed 75,000 words with his eyes simply to write his story. The book is insightful, humorous, and uplifting. I believe the book captures my friend’s personality perfectly. I was flattered and honored when Josh invited me to Philly to introduce him at his book launch party in March of 2008. I met his family and many of his friends as we all had a big birthday bash to celebrate his 30th on that same weekend. A huge group of us took over a fancy Italian restaurant (Josh was quite the foodie!) and it looked like a movie scene with white tablecloths and a semi-private room. A wonderful party and great night. The next day, I introduced Josh to a crowd at his official book release party. Years before, Josh had a stamp made of his signature knowing that someday he would be unable to write. He sold a lot of stamped books that day. I could see the triumph in his eyes and the love all all of his family, friends and strangers who came to meet him. His publishers doled out cake and we had another big party in less than 12 hours in the City of Brotherly Love. Later that summer, at Josh’s urging, I returned to Philly for “The A tour, and the proper cheesesteak that you Northern people know nothing about.” Yes, Josh and I busted balls whenever possible! He was right though, the battle for who has the best cheesesteak is a serious thing in that place. (TonyLuke’s). During my visit, Josh and his nurse drove us around the city, made some jokes as both of us tried to see a way to climb the Rocky stairs, and took in a baseball game as his beloved Phillies were on their way to a World Series title that year. Speaking with him by phone after the victory parade, Josh was excited as a little kid that he finally got to see his Phillies win. Of course he and I had a Boston/Philly sports rivalry and more ball busting came with the passing of each football season! One more story that I need to share is the brilliant encounter Josh had with the U.S. Marine Corps. Looking for “A Few Good Men”, Josh randomly received a postcard, addressed to him at home asking him if he had thought about a military career. Here’s Josh with a power chair, modified joystick as he had lost almost all hand motion, a breathing tube surgically installed in his throat connected to a ventilator behind his chair that ran 24/7. With a smile on his face, Josh asked his nurse to drive him to the Marine recruiting center where he rolled in and showed the postcard. He told them that he was there to enlist and serve his country. Not missing a beat, the Marine at the front asked Josh if he wanted a desk job or a deployment. He left with some swag and a hilarious story. Later he told me that he was nervous that he wouldn’t have passed the physical. That was Josh. Brilliant at all times in the face of fierce headwinds. Although Josh left our world in December of 2009, I know that he is still with me. I have an autographed copy of his book, which I cherish, and I have read excerpts to some of my middle school students over the years, telling them that if it’s possible to type and publish a book using only your eyes, none of them should have any trouble completing homework. I suggest that everyone read Josh’s words. They are a blueprint for a life well lived. He still radiates more light than heat. He always will. I miss you my friend. Until we meet again.

Stay safe, stay awesome, and stay tuned.

–Part of today’s blog uses a passage from THIS PIECE I found when Googling Josh Winheld