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Thursday, January 31, 2008

Then and Now

I can't say enough about how writing a book has allowed me to reconnect with old friends from way back. In 1991, meteorologist John Bolaris came to the summer camp I attended for kids with disabilities and I had the thrill of reading the weather forecast with him. Later that year, John took me to a Philadelphia Eagles game, returning later that evening for a holiday dinner with my family.

After several years in New York, John recently returned to Philadelphia, this time as chief meteorologist at Fox 29. Through my publisher, Little Treasure Books, I got in touch and had a chance to visit him at the studio today. Not only that, but John has written a very touching endorsement that will soon grace the back cover of my book. And thanks to a little bit of networking, another TV appearance is a distinct possibility. Stay tuned...

Monday, January 28, 2008

In the Blinq of an Eye

It seems I've become an overnight sensation out there in the so-called blogosphere. Alerted last week to a request by Philadelphia Inquirer columnist Daniel Rubin for insight into the accessibility situation in Philly, I contacted Mr. Rubin and began an e-mail dialogue on the subject. Today, one of my e-mails appeared in Mr. Rubin's blog, Blinq, along with a link to Winheld's World.

To be sure, the exposure is wonderful. But I'm even happier to know that Mr. Rubin has pledged to spend more time looking into accessibility here in the City That (Supposedly) Loves You Back. I mean, I'm about the biggest Philadelphia cheerleader around. Philly's a great place, with lots to see and do, much of which is readily accessible to those of us in wheelchairs. Still, there's plenty of room for improvement. Curb cuts and sidewalks can be treacherous; many shops and restaurants are out of reach. And don't even get me started on parking and mass transit!

Accessibility in cities is to be the focus of my master's thesis in urban studies, so I'll be learning more in the coming weeks and months. Meanwhile, if you have any observations that you'd like to share about accessibility in the city where you live, please consider posting a comment...

Thursday, January 24, 2008

Genetically Speaking II

How many times can I show a picture of me talking to a class? I decided to change things up and have the genetic counseling students I spoke to today surround me in the above photo. I don't know if you noticed that they're all of the female persuasion. I did, though I didn't happen to get any phone numbers!

Still, they were nice enough to listen to me for an ENTIRE HOUR. Prior to my appearance, the students learned about Duchenne's from one of the doctors at The Children's Hospital of Philadelphia. My job was to share the more personal side of the disease. I used a PowerPoint presentation containing photographs at various points in my life.

But as this was a class on genetic counseling, I also shared my thoughts about genetic testing and pregnancy termination. I took some heat from a few readers for my comments on this to last year's class. I told the students that I would personally not want to bring a child into this world knowing he would have DMD. That doesn't mean I'm rejecting my life or the lives other guys with the disease. There was no genetic testing when many of us came along. Once you're here, I believe you must live your life to the fullest. But nobody wants to have Duchenne's. I would not knowingly want to subject my child to it.

That's just my opinion, though I would think there are others out there who feel the same way. So criticize me if you will, but please respect my opinion as I'll respect yours.

Monday, January 21, 2008

I'm Back!!!

When I had my tracheotomy in 2002, I had every intention of completing my studies at Temple University, where I had been pursuing a master's degree in urban studies. However, I found it difficult both physically and emotionally and eventually left school the following year. I never thought I'd return because, quite honestly, I wasn't sure I'd even be around.

Four years later, I'm still here so I've decided to give it another shot. Had I not left in the first place, I likely never would have written my book or launched this blog. But I've always finished what I started, so it didn't sit well with me to leave school. Plus, my interest in cities and the field of urban studies has never died.

So today, with frigid weather conditions outside (see me above all bundled up), I headed to campus to meet with some of the professors in the department to explain why I had left so abruptly in 2003 and to talk a bit about the nature of my disability, something I had rarely discussed with them before, out of concern that it would change the way people saw me. We also discussed possible thesis topics.

I'm hoping to finish my degree by the end of the year. It's not going to be easy, as my energy is limited, but I figure that if I can write a book, I can write a thesis. Even if I do, though, it can't be the end. It has to lead to something. Maybe I won't have a long career but I'm doing this so I can work in the field I love.

Wish me luck. I'll be sure to keep you updated on my progress.

Thursday, January 17, 2008

Adding Insult to Injury

Last year, I wrote about an unpleasant phone conversation with a representative at Social Security. News flash: obnoxious people still work there. Take my conversation today with a woman named Betty, for example. The purpose of my call was to report income I had made from September to November, but for which I received a paycheck only a few days ago. From the start, she had a rude, condescending tone and interrupted every time I tried to explain my situation.

Betty: "How long have you been working?"
Me: "I'm no longer working, but the job began in September."
Betty: "No, listen to me! What DATE did you start?"
Me: I don't have an exact date.
Betty: "Well, you have to report when you start working."
Me: "I'm sorry, but I didn't have any specific information at the time because I'm a consultant."

When I asked Betty to repeat something I had not heard her say, the conversation quickly deteriorated.

Betty: "I'm speaking loud enough. You're the one that's quiet."
Me: "Ma'am, I'm on a ventilator, so--"
Betty: "Well, it doesn't say that here."

That's when I lost it.

Me: "WHY THE HELL DOES THAT MATTER!?! SINCE WHEN DO I HAVE TO REPORT THAT!?! NOW I'M YELLING, WHICH IS VERY DIFFICULT FOR ME!" I screamed at the top of my lungs, "You've been rude and you've talked down to me the whole time; I'm not stupid, just disabled!

Never had I felt so insulted in my life. My heart now racing and with tears in my eyes, I demanded to speak to a supervisor. However, the apology I received was somewhat half-hearted, saying she was sorry if that's what Betty had said to me.

Social Security has some work to do in the area of customer service. Need I say more?

Monday, January 14, 2008

Keeping Pace

Looks like my decision nearly three years ago to have a cardiac defibrillator implanted in my chest was a good one. At a routine electrophysiology appointment today, I learned that the device again took action to correct a dangerous heart rhythm. It was able to "pace" me out of it, so it did not have to deliver a shock.

I actually remember the incident, which occurred back in October. I was at the computer, chatting online with a friend and listening to the Flyers game. Suddenly, I felt my heart beating rapidly. I became dizzy and warm, and the light in my bedroom seemed to grow dim. And then just as quickly as it began, it ended. I immediately wondered if the device had helped me.

As the doctor reminded me today and at my previous appointment, when the device reported taking action, this is exactly the reason why I have it in the first place and thus no reason to be alarmed. Still, I can't help but find it alarming. More than that, though, it reminds me just how lucky I am that my cardiologist recommended implanting the defibrillator. I feel it is therefore my responsibility to live my life to the fullest because so many other guys with DMD haven't been as fortunate. It is a responsibility I take seriously and one that will motivate me as long as I live.

Sunday, January 13, 2008

A Jazzy Night

As much as I hate going out in the winter, I'm not about to put my life on hold until spring. Last night, I ventured out -- all the way to Atlantic City -- to a performance by Chris Botti (the YouTube clip above is of the song "Venice"). One of my nurses and I enjoy his music on the radio and when we heard he was going to be in the area, we decided to go check it out in person.

I didn't purchase tickets too far in advance because you just never know about the weather in the winter. When I called Ticketmaster for accessible seating, I got a very friendly -- but totally useless -- woman who couldn't find any tickets for me. So I decided to call the facility directly. A woman at the box office told me if I arrived three hours prior to the show, they'd sell me a ticket if any were left.

"Yeah, but I'm coming from a great distance. I'm in a wheelchair and on a ventilator and it's not that easy for me to just show up," I explained.

After being transferred to someone else, I learned I could purchase regular tickets and they would find me appropriate seating when I arrived.

That's just what I did, and I'm glad I was persistent because it was a great show. Botti himself is, of course, very talented with the trumpet. I couldn't imagine being able to hold my breath that long. Of course, I do have a trach and ventilator so I guess I wouldn't need to come up for air if I played a musical instrument!

Seriously, though, I was particularly impressed by guitarist Mark Whitfield and drummer Billy Kilson. I enjoyed nearly all of the music but especially their rendition of Miles Davis' Flamenco Sketches (the link is to the original version). It was as if the instruments were engaged in a conversation, each one responding in its own unique voice.

After a great night like that, I'm starting to think about venturing out a bit more this winter. Stayed tuned...

Tuesday, January 01, 2008

Wake Up

Happy New Year, everyone! Though I often have the radio on for some background music while I'm working at the computer, there are many songs I like whose lyrics I have never learned. With the the radio up loud today, I finally heard the words to "Wake Up Everybody" an old classic by Harold Melvin and the Blue Notes.

Not only is it a great song, but it has true meaning, especially in today's world. So I thought it would be appropriate to begin 2008 by sharing this song with you (gotta love YouTube). Have a great year and let's all do our part to change the world...