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Thursday, December 31, 2009

This December, we held our annual Cousins Dinner in memory of Josh. (As you may have read on this blog before, Josh was the true initiator, planner, and general mastermind behind the Cousins Dinner.) For the Cousins Dinner, Josh always saw to it that our five first cousins (who were in the general Philadelphia area) attended. This year, we all made sure that the get together took place. In the past, Josh selected a Philadelphia eatery, but this year, we held the Cousins Dinner at my recently purchased home. With Mandy in Australia (where she is continuing her studies) and Brett ill with a nasty stomach bug, we were left with five hungry participants. Everyone contributed a food/beverage and we ended up with a quality home-cooked meal. I believe that everyone involved will assist in continuing this tradition in memory of Josh.

Amy (the older of Josh's two younger sisters)

Friday, December 25, 2009


Family and Friends of Josh:

On Friday night, Jews around the world will light their menorahs and inaugurate the holiday of Hanukkah. It is the story of a miracle, of a little vial of oil which should have burned briefly and then gone out but instead burned for 8 full days. We call Hanukkah our ‘festival of lights’.

Josh Winheld was a modern miracle. His light of life burned well beyond any of the medical predictions at the beginning of his journey with muscular dystrophy. His light of life burned brighter and warmer than anyone could have imagined. His courage, his strength, his compassion, his intelligence, his decency…..lit the light of hope for countless families of people in wheelchairs ……and all along, like in the story of Hanukkah, his light of hope did not diminish, but grew stronger and stronger everyday.

In the Talmud, the rabbis asked the question: why don’t we begin Hanukkah with all 8candles lit and take one away everyday to symbolize the diminishing supply of oil? Their answer: with respect to sacred matters and matters of hope and faith, we only increase and never decrease.

Josh Winheld labored to increase hope, light, love and courage his entire life. He never diminished hope or strength in anyone. He was a “nes gadol,” (a “great miracle” in our midst) who quietly and persistently worked and lived the best way he could for himself, his family and humanity. What Josh accomplished in his 31 years was nothing short of miraculous and as with the miracle of Hanukkah, we will forever remember, preserve and amplify the light Josh brought into our lives and our world.

Josh was born on March 4, 1978 on a snowy day in Elkins Park Hospital, the first of the three children born to Linda and Michael Winheld. The Winhelds are an exceptionally close family who had an exceptionally big challenge to meet in life and met it with exceptional courage, grace and love.

When Josh’s sister Amy was born, Josh was brought to see her in the hospital nursery and promptly asked if he could bring a different baby home. The reality is, nobody in the Winheld family ever wanted to trade places with anybody else.
When Josh’s sister Stephanie entered elementary school, and looked around at the other kids and their families, it dawned her for the first time that everyone didn’t have a brother in a wheelchair.

The reality is that very few of us have a brother like Josh, not because he was in a chair, but because he knew how to navigate life with grace and with a smile. And, sadly, not everyone in a wheelchair has a family like the Winhelds who can instill the inner confidence all of us need to travel through life whether in a chair or on two feet.

Josh was diagnosed with Duchenne Muscular Dystrophy at age 4 and by age 10 needed a wheelchair to get around or as Josh put, “I became the first person in my class to drive.” He went to public school here in Cheltenham, gently challenging the school system to learn to better accommodate the handicapped as he went his way. He also attended religious school here at KI where he became a Bar Mitzvah in April, 1991 and was later confirmed. He went on to graduate from the Isaac Mayer Wise Program at Gratz College. He was determined to do everything kids do, and at the same time become expert in his medical condition, and ultimately an advocate for people in chairs.

Josh could do a lot of things. He watched the cooking channel and then directed his helpers in the kitchen. He made a mean pickle. He convened an annual “cousins dinner”. He not only followed sports from the comfort of his parents’ den but went to the great stadiums of this country and Canada - Chicago, Toronto, New York, Pittsburgh, Baltimore , Atlanta, Boston and beyond. He even went to spring training. When the Phillies won the world series, not only did he go to the parade, he managed to talk a stranger into getting him into a second floor office in City Hall so he could see his heroes on Broad Street.

Josh attended Temple University where he earned a BA in journalism and then started his Masters Program there in Urban Planning. It was at about this time that I personally met Josh. When I accepted the position of senior rabbi here at KI, a number of people came to me and told me about Josh and said that I needed to be ready to provide pastoral support to Josh and his family. Josh’s dad, Michael, was actually the only person at KI I knew at the time. Michael and I played softball together on a travel team at Camp Harlam for several summers almost 40 years ago. Michael was on third and I was on first. It was a good time.

What I wasn’t prepared for was to meet a really “nice guy,” Mr. Josh Winheld, who seemed to know everything there was to know about sports, history, politics and a few other things to boot. I wasn’t prepared to meet a young man in a wheel chair who was always pleasant, polite and ready to greet and speak with me, whenever I happened to see him. Nor was I prepared for a guy in a chair who could do a really quick 270 degree turn and speed back to his keyboard in his room when our discussion was done, so he could get back to his work.

Josh became a personal source of inspiration to me on more than one occasion and I’m sure many of you have your own versions of Josh stories of this nature. When my youngest child was admitted to Children's Hospital into a unit he had been in, Josh made it his business to get in his van and be brought directly to Chana’s floor and offer his services to be her pathfinder there. “I know everybody here,” he told her, “if you have any questions or need anything, ask me!”

On several occasions, Josh not only attended family funerals, including one here at KI, for his grandfather, Bob Rosen, but established himself as a great eulogizer…a young man in a chair with a sense of humor, even at funerals, who delighted in sharing risqué stories with his congregation with perfect timing and a self-effacing laugh.

Because of his condition, Josh thought a great deal about death. His conclusion was to live as fully, as happily, and as productively as possible. Josh and I had numerous discussions and email exchanges about whether he should write a book or finish his masters first. I’m sure he consulted many people. When he made his decision to write his book, he plunged into his work, shielding the contents of his manuscript from just about everyone and produced a magnificent manuscript of 75,000 words with a hands-free computer using only head motions to write his text.

The results: a powerful memoir, Worth the Ride, published by Little Treasure Books. The “book launch”, held in the Rothschild Auditorium at the other end of this building was one of the most powerful events I ever attended. Josh was no ordinary person. His power to help others was manifest in every word he shared that day, and every word he wrote down for posterity in his moving autobiography.

The book was just the beginning. He then initiated an online blog, “Winheld’s World,” lectured at medical schools and talked to conventions of physicians. It was always the same message: respect everybody’s essential humanity, respect them for who they are and respect them for their dreams. Most of all, he wanted to help patients and their families know what to expect about life in a wheelchair. Strangers from London to San Fransisco, responded to him, trusted him, confided in him, cried to him and depended on him; and he was always there for them.

The Hanukkah menorah has eight regular candles and one helper candle. Josh’s helper candle was lit and held by many people. Josh had many doctors, nurses and aides who cared for him, loved him and respected him. It took many hands to help Josh. He held everyone of those hands with his heart.

Above all, Josh’s family were his helpers: Linda, Michael, Amy and Stephanie provided Josh with everything they could, every day, in every way, without hesitation or qualification. The miracle of love, like the miracle of Hanukkah, is self-replenishing. The well of true devotion never runs dry and is never sealed or unwilling to give of its nurturing water.

The Winheld family will insist, if you ask them, that who Josh was and what he accomplished, all was a function of his spirit. But that spirit was not alone in this world.

His family didn’t do what they had to do; they did much more, by empowering Josh with a unique sense of normalcy and mission in life. Anyone who ever visited the Winheld house on Rowland Avenue saw how Linda cared for her son - selflessly, perfectly, every day, often all night. Anyone who ever sat in their den, saw how Michael held his family together and gave the sense of security they needed to be a regular family with an incredible mission. Anyone who ever saw Josh, Amy and Stephanie together, saw a weave of sibling love as natural and warm as the light of a new summer day.

The other night I had the privilege of talking about Josh with his extended family in the Winheld family room. Here’s what they said about their Josh. He was courageous, generous, inspiring, spiritual, caring, accepting, lovable, intelligent, approachable, and independent. Above all, we agreed, he was a “really nice guy.”
Josh Winheld died peacefully this Saturday, December 5, 2009 on a snowy afternoon in Elkins Park Hospital, 31 years after he had been born in the same place on a snowy day. Snow flakes, like little angels, accompanying him into and from this world.

Now, the light of Josh’s life is extinguished; but the light of his spirit shines on and on in every good deed you do, in every kind word you share, in every tear you will ever dry, in every memory of him you hold in your heart.

Zichrono L’vracha……Josh’s memory is a blessing.


-- Rabbi Lance Sussman, Ph.D. (Josh's rabbi)

Thursday, December 24, 2009

When I told my Mother Josh had passed away, part of her reaction was that “Josh had COURAGE.” When she said that, I paused because – to me – COURAGE – implied action in the face of fear. But that was not Josh. Nothing he did or accomplished was motivated by fear. But to be fair to Mom, I Googled the word and found these definitions:

·Courage: derived from the 14th Century French word for Heart
·Mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.
·“That quality of mind which enables one to encounter danger and difficulties with firmness, or without fear, or fainting of heart; valor; boldness; resolution.”
This sounds very much like the Josh we all knew and loved.

I would also add the words from the gift made of Scrabble letters he hung proudly on his bedroom wall: Humor, Scholar, Journalist, Kind, Reader, Clever, Historian, and most important of all: Philly Fan.

From his early days to the end of his life, Josh knew he had no control over the physical aspects of his disease, but he understood the power he had to keep the disease from defining the person he would be.

When Josh was 8 or 9, he decided to start reading the World Book Encyclopedia. When Michael told me, I looked up Muscular Dystrophy, which was essentially defined as a “degenerative muscular disease typically resulting in death by adolescence or early teen years.”

I was devastated to think how horrible it must have been for Josh to read something like this. But, as he explained in his book, things “like this” only happened to “sick” people, and he was not sick. He just had trouble walking.

When he went from crutches to a wheelchair, he viewed this not as a progression of his disease, but as a moment of “liberation.” Finally, he could effortlessly move about without the fear of falling, the risk of injury, and physical exhaustion.
Throughout his academic career, he curried no favors and sought no special treatment. He wanted to be where he was because of who he was.

As an adult, Josh wrote in his book about the adjustments he had to make after his surgery for the ventilator and G-tube: “There was no way that a nurse was going to stand outside the bathroom door….After five minutes, she could knock … to ask if I was finished. I didn’t care if I stopped breathing or had a heart attack on the toilet. There was a limit to which I would allow my disease to dictate how I lived.”

Josh’s positive self-image and sense of worth gave him the COURAGE, CONFIDENCE, HUMILITY, AND EMPATHY to bare his deepest feelings so that others who followed behind him would know they were not alone.

Josh was 9 years old when he drew this card for me after I broke my leg in a skiing accident. What struck me most was how someone in a wheelchair was feeling sorry for someone who could get better. This simple card from a child lifted my spirits and helped me through my recovery. This ability to connect with people was one of Josh’s special gifts that only got better through the years.

I leave to the Rabbis the imponderables of Judaism. But suffice it to say, I believe in what I call “Cosmic Coincidences.” Josh died in the hospital where he was born. It was cold and snowy when he was born; it was cold and snowy when he died.

My Bar Mitzvah torah portion dealt with God’s blessing and Abraham getting his new name. The torah portion this week talks about Abraham’s grandson, Jacob, and Jacob’s dream the night before he faces his brother Esau. At the end of the dream, as dawn breaks, Jacob gets his blessing and a new name: Israel.
For almost 32 years, more than twice as long as those of us who loved him had hoped for, Josh wrestled his Angel on Earth and did a hell of a job. I believe he accomplished what God sent him to do and then blessed him and brought him home.

Amy and Steph, your parents put Josh’s name in yours for good reason. Although we lay to rest the vessel, his soul and spirit lives on as his name intertwined with yours takes on new meaning. He will always be with you. He will always be your
Big Brother. He will always tell you the right thing to do, even if you don’t want his advice.

I can imagine Josh wheeling up to the Guard House at the Pearly Gates being asked, “Well Josh, was it worth the ride to get here?” Besides trying to sell another copy of his book, he answers in his own words:

“It is truly the quality of my life, not its duration that makes me most fortunate…

I have had the opportunity to spend more time with my family, including the time to watch my little sister grow up. I am surrounded by caring, dedicated nurses and attendants… I have the respect and admiration of my friends, who have not forgotten me. And, if anything, I believe … my experiences haven given me a greater appreciation for life. My life may not be perfect, but it has definitely been worth the ride.”
How many of us will be as blessed at our life’s end to feel the same?

Josh will be sorely missed. But he will never be forgotten. He leaves us all his legacy of the power of the human spirit and the challenge to do good and accomplish great things.

-- Howard Markman (Josh's "Uncle" Howie)

Wednesday, December 23, 2009

I remember when Josh was a little boy we used to play Josh’s own special brand of hide and seek. “Uncle Steve, Uncle Steve!..come find me, come find me.”

Yes, Josh, I found you. We all found you. Because like your special game of hide and seek, you made it so easy to find you and to get to know you. With so many obstacles in your way and yet you made it comfortable for all of us. The conversation was rarely about you - - you were always more interested in everyone else.

Josh touched our lives. He was a unique individual – as a boy, as a young man and as an adult. Not because he had muscular dystrophy or because he lived in a wheel chair, but because he made us know that he had his own mission to get on with his life despite the many obstacles. And boy did he get on with his life!
- A normal public school education in Cheltenham instead of special schools;
- An undergraduate college education at Temple;
- A graduate education at Temple with a Master’s thesis.
- Cooking, blogging and writing a book that opened our eyes to the reality of Josh’s day to day life.
- And so much more…

As someone said to me recently: “he lived his life to his full potential and not many people can say that”.

But that’s not what I’ll miss about Josh. I think some of Josh’s favorite moments were when he felt independent - - when you could get him alone. And just talk. Josh could talk about anything. He was spirited and he was interesting. He had a point of view and he was fun.

To Linda and Michael, we all know, Josh had an unbelievable support system and you were at the center of it. You helped make Josh the incredible person he became. Linda, my big sister, you amazed me with your selfless performance day in and day out. You were Super Mom, not just to Josh, but to Amy and Stephie as well. And you were much more than a mother to Josh - - you were his nurse, his friend, his cheerleader and his constant companion and you never made it seem hard because it was a labor of love.

We all learned from Josh. I know I did. He had passion for what he was doing (and not just for the Phillies and Eagles). He had courage. But most of all, he gave us so much. Josh, for me, it was most definitely “Worth the Ride”.

-- Steve Goldstein (Josh's uncle)

Tuesday, December 22, 2009

Josh truly was an unbelievable person. He accomplished more in his 31 years than most people do in a lifetime. I can list the things we all know about, like writing a book, getting his Masters, and organizing an awesome football tournament to raise money for DMD. But I think that Josh’s greatest accomplishment was just being him. He brought joy and love to so many people. He taught us how to see the good in every one, even if you have to look extra hard. He showed us how to fight against something that seemed unbeatable, which is apparent when listening to his favorite song, “The Boxer” by Simon & Garfunkel. Josh wrote in his blog “The lyrics seem to speak to the inner boxer in all of us, still fighting the good fight when everyone else thinks you're down for the count.” And what a fight he put up…he was with us for 31 years! That’s amazing!! That is a true accomplishment!

Josh was always worried about everyone else, despite his own problems. One comment that Josh made to me just last week will always stay with me. We were talking about my upcoming wedding in July and he said “I don’t know Sar, July seems like a long ways away.” He then told me, “I hope you’re not upset with me if I can’t make it.” It amazed me that his first thought would be of my feelings, but that’s just how Josh was. And that’s why we all loved him so much!
There’s no easy way to say goodbye to someone you love so much, but I don’t think we have to. I know that Josh is always going to be with us, he just may have a different view.

There’s a quote in a song that I feel truly puts into words how I feel about Josh and it goes like this: "It well may be that we will never meet again in this lifetime so let me say before we part: So much of me is made of what I learned from you. You'll be with me like a handprint on my heart. And now whatever way our stories end, I know you have rewritten mine by being my friend."
I know that all of our stories have been rewritten because of Josh. I miss you, love you, and will never forget you…

-- Sarah Redelheim (Josh's long time friend)

As you may or may not know, well over 400 people attended Josh's funeral. So many people were impressed by the words spoken in tribute of Josh that we thought those of you who could not be in attendance might find these eulogies of some consolation. The following are four of the five eulogies.

Sunday, December 06, 2009

Josh Winheld's funeral will be held this Tuesday, December 8th at Reform Congregation Keneseth Israel (8339 Old York Rd., Elkins Park, PA 19027) at 11AM. Josh's family appreciates your continued support at this extremely difficult time.

Saturday, December 05, 2009

Today, my courageous and inspiring brother, writer of this blog, lost his battle with Duchenne muscular dystrophy, despite his strong will and great determination to keep fighting. We will keep the blogosphere posted regarding funeral arrangements. Josh's family and friends greatly appreciate your support at this difficult time.

Friday, November 20, 2009

This and That

It has been a long few months for me, between working on my master's thesis and dealing with some serious cardiac issues. As a result, I never wrote some of the entries I had intended to write never. So I'd like to take this opportunity to update my readers on some of the goings-on in Winheld's World.

I visited with my friend and former neighbor, Branden, in mid-August. Despite his physical disability, he has now lived independently for more than two years, and I wanted to check out his place. Though he is several years younger than I am, we got to know each other when we used to share paratransit rides.

After being on a long waiting list, he was able to move out of his parents' home into an affordable, fully accessible apartment (see photos) in a housing development for people with physical disabilities in Philadelphia. Living on my own is something I have always hoped to do. But beside the fact that there is such a shortage of affordable accessible housing in general, it would be a bit more challenging for me because I require nursing care and cannot be left on my own. Still, I was encouraged to see that there are options out there. Meanwhile, I plan on visiting Branden again -- the guy has a fully stocked refrigerator!

In early October, I attended an engagement party for my friends Sarah and Vinny. Sarah and I have known each other since 7th grade. Sarah was the new girl in school that year and practically every guy, including yours truly, had a crush on her! I was pretty shy around girls in those day, but because she lived around the corner, I always made sure to pass by her house in case she was around. Over the years, we have remained good friends. Not only did she come up with the title for my book, but she is also the subject of a humorous anecdote in the book. So it was really wonderful to be in attendance at her engagement party. I've gotten to know Vinny over the past few years and we always seem to hit it off well. July seems like a long time away, but I hope with all of my heart that I will be there to watch them walk down the aisle together.

Finally, in recent weeks, there has been a changing of the guard with my caregivers. First, I lost my long-time evening attendant, who moved out of the area. Then, one of my nurses, who was not only a good nurse but was also available on Saturday evenings so I could get out and socialize with friends, quit in a squabble with my nursing agency.

The details really don't matter. But the point is that in the course of two weeks, I lost two really good caregivers to whom I had grown close. I'm not one to hold a grudge. I appreciate all that my nurses and aides do for me and when it is time for them to move on, I always wish them luck and hope they stay in touch.

The good news is that where one road ends another one begins. My other aide who works in the morning recommended a friend to fill my evening hours and she turned out to be extremely pleasant and dedicated. As for Saturday evenings, a new nurse that had recently come aboard offered to take those hours. I immediately agreed in light of the fact that she is an excellent nurse and we get along well. It helps that we are fairly close in age and she is also a rabid Phillies fan like I am.

Of course, training new staff requires some energy and patience on my part and unfortunately, as I have grown weaker in recent years, it has become a little more difficult. In the end, however, it's always good to see some fresh faces, especially if they are good caregivers.

Thursday, November 19, 2009

For Your Listening Pleasure

I borrowed my nurse's Simon and Garfunkel CD this week and I haven't been able to stop playing it! The music is like an old friend you haven't seen in many years but whose company you always enjoy.

"Mrs. Robinson" used to be my favorite Simon and Garfunkel song, but "The Boxer," seen above, has replaced it as my favorite. The lyrics seem to speak to the inner boxer in all of us, still fighting the good fight when everyone else thinks you're down for the count. My inner boxer is alive and well. Is yours?

Sunday, November 15, 2009

Biggest Losers

Every year, my friend Rob and I get together to watch an Eagles game -- and every year, the Eagles manage to lose, whether it be on an incredible 63-yard field goal with two seconds left or simply with an uninspired loss. Since Rob and I are such a lousy combination, we decided to get together this year with our mutual friend Marc. Turns out that we are all losers together, as the Eagles fell behind the San Diego Chargers early and were never able to recover.

But it wasn't all bad. After all, you can never beat chicken wings and cheesesteaks! Seems that in my old age, I have become quite the eater. And it was a lot of fun spending some time with my old buddies. Whenever we get together and talk sports, it's as if we are teenagers all over again, as we recount the games and players of our youth. We also had the opportunity to do something all Philadelphia fans are very good at: complain when our team stinks. But when we were growing up, the thought of seeing the Phillies win the World Series, let alone the Eagles playing in multiple NFC Championship games, was pie in the sky. Things have certainly changed on the local sports scene since then, but true friendship is always a constant. However, if you want the Eagles to win, don't let the three of us watch together!

Friday, November 13, 2009

Defibrillator Dude

Since starting this blogging thing three years ago, I have met some very interesting people. Scott Sands certainly qualifies as one. Some of you reading this already know Scott, who is 43 and also blogs about living with Duchenne muscular dystrophy at Scott Sands Alive. I have learned a lot from him, from fighting for the care I need to learning how to look fashionable with a tracheostomy. Plus, it gives me hope to know that you can live into your 40s with DMD at a time when, sadly, guys with DMD are typically only living into their mid-20s at most. Scott has helped me through some tough times, usually by giving me a (virtual) kick in the ass! He also wrote a very nice review of my book.

If you haven't paid a visit, Scott Sands Alive is a must read. People think I'm funny, but Scott is hilarious. He also pulls no punches about this life that he and I and countless others live. It is a life that was in jeopardy for Scott this week, when he experienced some frightening cardiac symptoms.

As I can tell you first-hand, you can be the toughest S.O.B. in the world (and Scott is) but when it's your heart, it's a scary thing! The good news is that Scott is now an official Defibrillator Dude, having undergone successful surgery this morning to implant a defibrillator in his chest. Sounds like he will be back to blogging very soon.

Welcome to the club, my friend. May your heartbeat be regular and your shocks be few!

Tuesday, November 10, 2009

Just a Little Bit Further

After submitting the first draft of my master's thesis a little more than a week ago, I received feedback from my advisor that was positive, but nonetheless indicated that I had some work to do. With a week to make the necessary revisions, I thought it would be no big deal.

But as last week wore on, it began to sink in just how much things had changed for me since I began my master's program in urban studies back in September of 2000. Gone was the strength and energy that had once allowed me to push everything else aside and complete my work, no matter how long it took to get things just right. Now, I have to be more vigilant about my health, which takes away from the time that I have to work. Even when I have the time, my energy often betrays me, thanks to my weak DMD heart and the medications I take to sustain it. And after getting shocked 18 times by my internal defibrillator on one very scary night in July, I had to make sure that I did not allow myself to get too stressed out! So I tried to work at a slower pace, taking frequent breaks. It was highly frustrating, but I knew that (like Red in the clip above from my all-time favorite movie, "The Shawshank Redemption") if I had come this far, I could come just a little bit further.

By yesterday, with a deadline looming and on the verge of exhaustion, nothing was going to stop me. And, if only for a moment, I was able recapture some of my old magic, pushing myself every time I wanted to take a break. Just after midnight, I submitted my paper. We'll see what happens, but it sure was nice to visit with my old self and to know he is still within me and I can channel him from time to time!

UPDATE: My advisor was paper now goes to the rest of my thesis committee for review...

Friday, October 30, 2009

Mission Accomplished

For those who have not heard, I finally finished writing my master's thesis in urban studies late last Friday night. While it is only a first draft and must go through several approvals until it is officially accepted by the university, I consider this to be a pretty momentous occasion, in light of the fact that six years ago, I had abandoned all hopes of earning my master's degree and withdrew from school. At that time, I was adjusting to life with a tracheostomy and a ventilator, along with the nursing care that accompanied it. In addition, I had begun taking a bunch of cardiac medications, which made me feel exhausted and unmotivated. In fact, I was so resigned to the fact that I would never earn my master's degree in the field that I love, I referred to my autobiography as "the thesis I never wrote."

Today, I am taking even more medications and battling fatigue -- and anxiety (caused by my cardiac scare over the summer). However, after my autobiography was published last year and I was still alive and kicking, I had decided to revisit completing my degree. Thankfully, the Department of Geography and Urban Studies at Temple University welcomed me back with open arms and gave me the chance to do so. I also had many people motivating me, particularly my friends, Art and Emma, who each, in their own way, helped me to realize that finishing my degree would be a worthwhile endeavor.

In case you were wondering, my thesis is about housing accessibility for those with disabilities in Philadelphia. My research entailed interviewing several housing developers working in the city to find out their opinions on housing accessibility requirements under the law, as well as to learn about their attitudes toward and knowledge of people with disabilities. My hope is that by talking to these developers, 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.

I will post further news about my thesis as soon as I hear more about it, but I will most likely be graduating in January!

Monday, September 28, 2009

Breathing Easy

When you have Duchenne's, you can never be sure when your condition will worsen and in what ways. For me, I have noticed a decline approximately every 5-7 years, whether it be nutritional, cardiac, skeletal, or respiratory. When I began using a ventilator following my tracheostomy in 2002, I was able to spend at least a few hours each day breathing on my own or "sprinting". It was very helpful for transfers, bathing, and using the bathroom. I knew there was a possiblity that at some point I would be become completely ventilator-dependent.

Well, a little more than 7 years later, I am quickly nearing that point. After as little as 20 minutes, I am noticeably working harder to breathe, and my CO2 level creeps over 50 (the normal range is between 35-45). This results in headache and fatigue. My heartrate and blood pressure also increase. Fortunately, once I return to the ventilator, everything improves within as little as 10 minutes.

Though I have always been against accepting more medicine or treatment unless it is absolutely warranted, sometimes it is necessary to lose the small battles in order to have a chance to win the big war. In the end, of course, you can never defeat DMD, but I want to muster all the force that I can. So if that means being dependent on a machine 24/7, then so be it. I still have things to do and places to go!

Saturday, September 26, 2009

When the Saints Come Marching In...

On the eve of another NFL Sunday, I would be remiss if I did not post pictures from the Philadelphia Eagles' home opener last Sunday, which I attended thanks to a friend of a friend in a high place. On a picture-perfect day for football, my dad and I took our seats (I brought my seat) near the 30-yard line and proceeded to watch our beloved Birds go down in flames, 48-22, to the surprising New Orleans Saints.

Despite the disastrous results, it was still a great day with all the pomp and circumstance of a NFL home opener, not to mention the chance to catch up with friends old and new. Maybe without me and my dad (maybe just my dad) in the crowd, tomorrow's result will be a lot better!

Saturday, September 19, 2009

Catching Up

Back when I was a student at Temple University, I hired several student helpers to assist me on campus. Due varying class schedules (mine and theirs), most helped me for only a semester or two and then pretty much disappeared from my life.

So you can imagine my surprise when, a few months after writing a guest column for Temple's alumni magazine, I received an e-mail from Nicole (in the picture above). I instantly recalled how she had been one of my favorite helpers. We had lost touch shortly before graduation.

After e-mailing back and forth a few times over the past year, Nicole, who hails from New York, stopped by today to see me and to catch up on old times. Though we graduated college nearly 10 years ago, Nicole hasn't aged one bit and has the same engaging personality that made look forward to seeing her every day. We talked and talked and talked some more today (certainly no stretch for me). We took some photos and then I presented her with the very last first-edition copy of my book. Hopefully, that made her trip Worth the Ride . My only regret is that Nicole doesn't live near Philadelphia.

Have a safe trip home, Nicole. Come back to visit soon!

Sunday, August 16, 2009

A Small Scare

I thought I had enough of the hospital a few weeks ago when I was hospitalized for atrial fibrillation and had received 18 shocks from my internal defibrillator (ICD). But, sitting in bed on Thursday night talking to my dad, I felt my heart beating faster than it had been lately and felt certain that I was about to receive a shock from my ICD. That never happened, but my heart continued to beat at an unusually rapid rate and so I made a decision to take a trip to the hospital emergency room and get things checked out. Instead of calling an ambulance, I relied on my dad's fast, but safe driving.

Upon arrival to the emergency room no one seemed in a particular rush as they filled out the necessary paperwork. Me, on the other hand, well, I was very anxious to see what was going on with my heart. Once I was hooked up to a heart monitor, it indicated that my heart rate was higher than it had been recently but not dangerously so. Next, the nurse put an IV into the back of my hand -- on the first try! Miraculous! Blood was taken and it showed a high white blood cell count and a higher than normal level of a particular heart enzyme that is typically elevated when your heart has suffered a trauma. Based on these findings I was admitted to the hospital, where I stayed until yesterday.

During my hospitalization there was nothing unusal about my heart and doctors were never able to explain the findings in the blood work. As my blood was retested the numbers seemed to come down and no signs of any infection were detected in me. At first there was some concern that I had already become toxic with the amiodarone that I had been taking since my last cardiac scare. Usually side effects take a while to appear, which is why it was surprising that I was starting to show some side effects. In the end, though, it was determined that my symptoms were most likely not due to the medication and I was put back on it.

By 11 am yesterday I was home again. I still think it was a good idea that I went to the hospital even though it seems that everything is fine. After my last scare I'm not taking any chances of getting shocked by my ICD, so if something doesn't feel right I'm heading to the nearest emergency room. I hope this doesn't happen for quite some time!

Special thanks to Lauren for typing this entry.

Thursday, August 06, 2009

Back on the Horse

Nearly two weeks later, I'm still getting over my big cardiac scare. It has been difficult both physically and emotionally. But the way I figure, I'm still here and it's about time to get back to doing the things I love. Like going to Phillies games. Tickets to see the World Champions are hard to come by these days, but I was able to score a pair to today's game, featuring the debut of newly-acquired ace pitcher Cliff Lee.

The only thing hanging in the balance was the weather. But with Fox 29 chief meteorologist and my good friend John Bolaris in the house, I figured we were in good shape. And with Cliff Lee on the mound, the Phillies were in good shape, cruising to a 3-1 win over the visiting Colorado Rockies. It was the first time in five tries this season I witnessed a Phillies victory. I truly enjoyed myself and it was big step for me as I try to get back to normal.

Saturday, August 01, 2009

A Real Shocker!

"He said...he said it wasn't such a good day to die."

Kevin Bacon in "Flatliners" (1990)

Early last Saturday morning, I thought there was a distinct possibility that I would be blogging no more. In fact, as they say, I thought I had "bought the farm". You see, after spending Friday afternoon trying to control what I thought was a simple case of dehydration causing my heart to beat irregularly, the defibrillator in my chest decided to take action.

As I lay in bed late Friday night contemplating whether I should seek medical attention, I heard what sounded like a light bulb popping and saw a blue streak in front of my eyes. It took me a second to realize that "Oh my god, it went off!" I told my nurse to wake my parents up, and as he was exiting my room, the device shocked me again. It felt like being punched in the chest.

911 was called and within 5 minutes (although it seemed like an eternity), EMS arrived to transport me to the emergency room. Though I was really anxious of having my contracted legs injured while being transferred from my bed to the stretcher, the EMS personnel and my nurse were extremely careful. Throughout the 15-minute ride to the hospital, the defibrillator shocked me at least a dozen times. I was wondering why the device wasn't able to regulate my heart and was continuing to fire at will. I looked up at the white lights in the ambulance roof, hoping that wouldn't be the last thing I ever saw.

Upon arrival at the hospital, the first goal was to insert an IV so that medications could be given to me to bring my heart rate under control. Easier said than done with my hard-to-find veins. Meanwhile, my defibrillator was shocking me seemingly every few seconds. Just before a shock was delivered, I would feel a weird crawling sensation near my heart, which I figured was the device charging up to fire again, and the heart monitor above me would show a rate as high as 200 beats per minute. The only thing that seemed to help prevent a shock was when the nurse massaged my carotid artery.

Once an IV was finally inserted, doctors began a drip of a medication called amiodarone, an anti-arrhythmic, which began to regulate my heart. The shocks grew less and less until finally stopping. At this point, I was transferred to the ICU, where I began a weekend-long stay for observation. Later that morning, a technician from the manufacturer of my defibrillator arrived. He interrogated my defibrillator and determined that the device had been shocking me for atrial fibrillation, a serious condition typically treated by medication alone, but not nearly as life-threatening as ventricular tachycardia or ventricular fibrillation. Although devices such as mine are smart, once the heart rate reaches a certain speed, it is unable to distinguish between atrial fibrillation and ventricular tachycardia, and therefore delivers a shock. The technician adjusted the parameters of my device so that it will attempt to better distinguish between the two kinds of rhythms. A cardiologist at the hospital visited with me and my mother and explained the situation to us. They would start me on an oral version of amiodarone, see how I tolerated it, and if there were no problems I would be discharged within a day or so.

Staying in the hospital, of course, is no easy task when you have Duchenne's. To their credit, the nurses, nursing students, and respiratory therapists were extremely caring and kind. Even still, things like turning me are not the everyday situation for nurses who have never cared for someone with DMD. Although I ended up with a few aches and pains, there wasn't a whole lot that anyone could have done to prevent this. I wasn't completely comfortable with the hospital ventilator the respiratory therapists switched me to -- it was also overly sensitive and would alarm constantly -- but I made the best of the situation. Without my own air mattress I was unable to get extremely comfortable in bed, although the bed in which I lay was actually pretty state-of-the-art. Because I had no way of using a nurse's call bell (or a call bell into which I could blow), my mother spent the weekend with me, sleeping in a chair at my bedside at night. It was a good idea that she stayed with me to make sure that my complicated list of medicines was followed, and also to assist with transfers and positioning. I couldn't have gotten through this ordeal without her, as well as the other family members and friends who gave me their support at such a trying time.

By Sunday night, the anti-anxiety medication I had been taking round the clock had sufficiently constipated me. And really, no stay at the hospital would be complete without a delicious milk-and-molasses enema! Very effective, I'll tell you, but I could find a better way to spend a Sunday night.

Early Monday morning, I got the news that I was to be discharged within a few hours. After a sleepless night, I couldn't wait to get home in my own bed and sleep away my nightmarish weekend. The good news is that the medicine seems to be working and I am still here. The anxiety remains and it may take a while until I am not afraid. My life may never be the same, but like the quote above, "it wasn't such a good day to die." So I guess I'll stick around for a while!

Special thanks to Julie for helping me type out such a long entry!

Saturday, July 04, 2009

Independence Day?

It's Fourth of July, Independence Day, America's birthday today. Should be a joyous day -- parades, fireworks, hot dogs, hamburgers, family and friends, and Phillies baseball. But forgive me if I'm not quite feeling it.

America is one of the better, if not best, places to live in the world. I wouldn't be here without its first-rate medical care. I received an excellent education here. And I am grateful for the freedom to express myself as I am right now. But for people with disabilities, the promise of this great nation is not quite within in reach. As I write this entry, I am reminded of the great Frederick Douglass' Fourth of July speech, in which he praised the ideals upon which the nation was founded, while explaining that on this day, he could not celebrate while his fellow African-Americans were enslaved. I do not seek to compare having a disability to the cruelty of slavery, but I understand Douglass' sentiment.

In America today, people with disabilities are restricted in their ability to live independently due to lack of funding for care and inexpensive or subsidized accessible housing. Some of my compatriots are forced to live in nursing homes. Americans don't believe in handouts. Yet if people with severe disabilities like mine work, they are limited in what they can earn in order to keep from losing the nursing care that no private insurer would provide unless I were a multi-millionaire. Americans are taught as children the value of saving. And yet people with disabilities are allowed to save a pittance before they lose their benefits.

Don't get me wrong. There are much worse places I could be. I also have great hope for the future of people with disabilities in America. Just don't get bent out of shape if I'm feeling less than enthusiastic today.

Sunday, May 31, 2009

Ready for Some Football?

While living with DMD isn't the end of the world, I hope that one day, there will be a cure for young boys diagnosed with DMD so their muscles work and they can walk -- or even play football with their friends.

Making that happen was the goal of today's Inaugural Tournament to Tackle Duchenne Muscular Dystrophy. Under blue skies in Philadelphia's Fairmount Park, seven co-ed teams competed in two-hand touch football. A portion of their egistration fees as well as money raised from food and raffle ticket sales will go to Parent Project Muscular Dystrophy. So far, it looks like we raised about $1,200! If you would like to add to that amount, please click here.

None of this would have been possible without the hard work of my childhood friends Sarah and Ken. We would like to thank the folks at Philadelphia Sport and Social Club for coordinating the tournament, all of our sponsors, and everyone who participated, volunteered, or attended.

See you next year!

Monday, April 27, 2009

Smokin' Hot!

Man, is it smokin' outside! With temperatures pushing 90 degrees here in Philadelphia over the past couple days, you'd never know it's only April. I'm not complaining, though. Due to some of my medications, I am always freezing. But not the past few days. Taking full advantage of this opportunity, I used some soon-to-be expired train tickets to head into Center City and sit in Rittenhouse Square, girl-watching and eating pizza. The next day, I decided to cruise in my chair along Kelly Drive, girl-watching again. Are you noticing a common theme here?

As for the cigarette, relax, it's only a tasteless joke -- my body is messed up enough from DMD that the last thing I'd ever do is smoke! Anyone who knows me knows I'm the most neurotic, overly cautious person who would never do anything remotely dangerous. But you have to admit, that photo would scare every teenager away from ever picking up a cigarette!

Okay, I'm going back outside -- not to poison myself, but to enjoy the sun's heat while it lasts...

Saturday, April 18, 2009

In a Fog

It's a beautiful day, sunny and warm, but I feel like I'm in a fog. Ever since my cardiologist increased my beta-blocker a few weeks ago to further reduce the irregular heart rhythms I had been experiencing (despite an increase in the same medication only a few months ago), I have been exhausted. And by exhausted, I don't mean very tired; I mean practically unable to function. I wake up tired and it takes me all day until I feel like myself.

The good news is that my doctor believes that I will adjust to the medication increase and be less tired. I know I adjusted the last time we increased it. And that would be a good thing, as I'm going to need all the energy I can muster over the next few months, while I complete my master's thesis and do some traveling, among other activities.

The bad news is, of course, that my heart may be getting weaker and you need a heart to, well, live! Inevitably, the heart will weaken when you have DMD. Whether that's what is happening now, even my doctor can't know for sure. Yeah, that's scary and unsettling, but I have no choice except to live to the best of my ability. After all, I could be around for a while and it would be a shame to waste even a second. To quote that noted philosopher, Ferris Bueller, "Life moves pretty fast. You don't stop and look around once in a while, you could miss it."

Tuesday, March 17, 2009

Waiting Game

When I heard a strange sound and the lift on my van began operating erratically this weekend -- with me on it -- I knew what that meant: a trip to the repair shop. Fortunately, I was able to get an appointment today. That was a good thing, as the lift completely stopped working after I got inside the van. But that was okay because I figured that as long as I got in the van, it would be the repair shop's problem to get me out!

In these days of instant gratification, I hate to wait for things as much as the next person, but I have to say that I always meet someone interesting in the waiting room whenever I go to get the lift repaired. The truth of the matter is that no one wants to be there, sitting around waiting as time wastes away, for what figures to be an expensive bill. But aside from looking around the showroom at the equipment and vehicles you only wish you could afford, watching whatever the person who got there before you put on TV, or staring aimlessly at the wall, there's only so much you can do you. So you end up talking to other people, asking the inevitable "So, why are you here?" or "How long have you been waiting?"

But you never know where a conversation will lead or what you might learn. On one occasion, I met an engineer who taught me about some of the specifications of my wheelchair. We have actually become friends since our initial meeting. On another occasion, I met a retired law enforcement agent, and together we watched a news broadcast of the funeral of a fallen police officer.

Today, I met two Vietnam veterans. The two men did not know each other, but it was interesting to listen to their conversation. I'm not sure that I would have supported the Vietnam War had I been alive at that time, but you can't help but be amazed by the strength and encourage of the men who serve in the military during times of war. People often tell me that they couldn't imagine living my life, but let me tell you, I cannot begin to imagine the horrors that face soldiers on a daily basis, even today.

After meeting the two veterans today, even my $300 bill didn't seem like such a horror!

Wednesday, March 04, 2009

31 Flavors

Yes, it's birthday time again! I don't how I got to be 31 years old, but even though I feel old today, I'm glad to have beaten the odds for yet another year. It will be hard to top Year Number 30, in which my book was published, I returned to school, spoke at conferences near and far, and spent time with special friends. However, I'm hoping this will be a pretty special year, so stay tuned...

After last year's birthday celebration, it was going to be a tall order to even come close this year. Fortunately, the Philadelphia 76ers are pretty tall guys themselves. As it turned out, the team was hosting a meet-and-greet for season ticketholders tonight. Below are some photos from the event.

Monday, March 02, 2009

Writing Feverishly

There's nothing like a fever and a touch of a stomach virus to get the creative, uh, juices flowing. So I thought I'd take this opportunity to update my loyal readers (if any of you are still out there) on my life over the past three months...

1. I finally completed my thesis proposal. Yes, at 2 a.m. last Friday, I e-mailed it to my advisor. Essentially, I'll be conducting a series of interviews with housing developers in Philadelphia to describe their attitudes toward accessibility regulations as well as toward people with disabilities. Ordinarily, writing a proposal would not be earth-shattering news. However, six years ago, when I left school, I not only thought I would never return, but I wasn't sure how much longer I'd live. But thanks to the support of some wonderful friends (Art, Lauren, Emma, Caroline, Pat, Kathie and Julie to name just a few), I decided to go back and finish what I started (gulp) nine years ago. I'm almost there!

2. I switched nursing agencies. I cannot function without the care of nurses. So when the nursing agency I had been with for six years since my tracheotomy could no longer consistently cover my shifts, it was time to make a move. However, my nurses all came with me to the new agency, which saved me the time and stress of having to train an entire new staff of nurses.

3. I had a cardiac scare. After a couple of sleepless nights in December, with my heart pounding through my chest, I saw my cardiologist. He ordered a Holter monitor, the results of which indicated repeated episodes of ventricular tachycardia ("v-tach"), he increased my beta-blocker. As a result, I have felt colder and more tired. But no v-tach. It's a trade-off I'm willing to live with, the operative word being "live"!

4. I hired a self-publisher. My book has proven to be a big hit. Keeping it in a print is therefore a priority. About a month ago, I submitted my book to a self-publisher. The new edition should look almost the same, including the cover. The nice thing is that sales will be on an on-demand basis, meaning I won't have to manage any inventory. When everything is set up, I'll be sure to post an announcement.

So that's it in a nutshell. I'm so glad March is here already, which means that warmer weather and Phillies baseball are just around the corner...