Go West, Young Man!

Go West, Young Man!

Traveling cross-country in an RV is no small feat for most people, let alone a young man with Duchenne's.

But that's exactly what Darius Weems, a 15-year-old with DMD did two summers ago. Mr. Weems, who lost an older brother to the same disease, had never been away from his hometown of Athens, Georgia. With a group of college-age friends, he set out on for Los Angeles, hoping to raise awareness of Duchenne's and that MTV's "Pimp My Ride" show would customize his wheelchair.

His adventure is the subject of a documentary, "Darius Goes West: The Roll of His Life" (see trailer above), which has won wide acclaim at various film festivals across the country. As far as I am aware, the film has not been shown in the Philadelphia area yet, so I haven't seen it. If anyone reading this in another part of the country has seen it, please feel free to post your thoughts.

Darius Weems' journey just goes to show some of the great things that are possible to do even with Duchenne's, as long you are determined and have dedicated people around you who are willing to lend a helping hand. Those of us with DMD must make the most of a limited amount of time, and that's why his trip is so important. At the same time -- and I sometimes make this mistake myself -- there's really no way to predict how long any of us with this disease will be around, so I hope that this isn't the end of the great things that Darius Weems accomplishes in his life.

Good luck, Darius! May your life be filled with many more journeys...

In Enemy Territory

In Enemy Territory

To put it mildly, I dislike the New York Yankees. Maybe it's because they have an arrogant owner with such deep pockets that he can buy a championship (although they haven't actually won one since 2000). Maybe it's because I'm jealous of the fact that they've won 26 championships while my Philadelphia Phillies have won exactly one. Or maybe it's that I'm from Philadelphia and we hate all New York teams!

Nevertheless, I found myself at, of all places, Yankee Stadium today with my parents, my uncle, and my cousin (photo courtesy of Cousin Benny, by the way). With the stadium set to be torn down in a couple of years, I wanted to make my pilgrimage to the mecca of baseball -- home to legends like Ruth, Gehrig, DiMaggio, and Mantle. Getting there was a nightmare, with traffic on the George Washington Bridge so insane that it took an hour just to get across. Fortunately, New York's finest were very helpful in finding us a place to park my van. Still, we didn't get to our seats until the third inning.

Once I was settled in, though, I was glad that I had made the trek to the Bronx. To realize that I was at the same place where all of those great players and teams once competed, the place where all of those championships were won, was quite amazing. Despite the fact that the Yankees are actually in last place (not that I'm upset about that), the stadium was packed and the fans were loud. I sat there, imagining how much louder it must be there during the playoffs, how intimidating it must be for the opposition. No wonder there have been so many miraculous comebacks for the hometown team.

I had fun at the game, but I just couldn't bring myself to actually cheer for the Yankees. They're the enemy; you can't root for the enemy -- even in their own ballpark! Go Phillies!!!

Take Me Out to the Ballgame

Take Me Out to the Ballgame

The baseball season's been underway for a month and a half, but I don't consider it official until I actually get out to the ballpark to see the Phillies for the first time.

Tonight was the night, and why not? With a game-time temperature of 80 degrees, low humidity, a comfortable breeze, and the first place Milwaukee Brewers in town, it was the perfect occasion for my season debut. Apparently, 41,000 other people had the same idea, too, perhaps because it was also Dollar Dog Night (hot dogs for $1) and College Night (lots of rowdy, drunk students).

I always enjoy a night (or day) at the ballpark. Citizens Bank Park, which opened in 2004, is extremely accessible. There are plenty of great places for fans in wheelchairs and their companions to sit, and when fans in front of such seating areas stand up to cheer, they don't block the view of those in wheelchairs. The stadium also has several family (unisex) restrooms, which makes it more convenient when I have a female nurse with me.

With accessibility concerns out of the way, it means less aggravation and more time eating, criticizing manager Charlie Manuel's moves, yelling at umpires, and oh yes, cheering for the Fightin' Phils!

Getting out to games at night is not the easiest thing for me. I must arrange for my nurse to come in later and leave later, which affects my mother's schedule. And then there is a big rush to get ready. I need to remember things like preparing my evening medications to take with me and changing my ventilator battery so that it doesn't die before I get home (Yes, it's always nice to be able to breathe; it really adds to the experience!)

In the end, though, it's always well worth it, especially when the Phillies win. I couldn't have scripted the ending any better tonight: two outs in the bottom of ninth, tie score, when catcher Carlos Ruiz hits a dramatic home run. Game over. Phils win!!!

Feeling Blue

Feeling Blue

Comedian Josh Blue (see video clip) shows that there's nothing wrong with laughing at yourself -- even if you have a disability. Blue, who won NBC's "Last Comic Standing" in 2006, has cerebral palsy, which he incorporates into his brand of humor. One of my nurses told me about him last year after he won the competition, so I checked out a few video clips and found them funny. When I saw in the newspaper that he was to perform nearby, I decided to find out if he was as funny in person.

Although I was exhausted from a busy day yesterday and hardly felt like getting ready to go out in the rainy weather, I was glad I did because Blue certainly didn't disappoint. The two other comics who preceded Blue on stage, Kristin Key and Michele Balan, were very funny as well. But Blue's act was high-energy from the start; the guy must have walked three miles with all the pacing he did back and forth, across the stage. His disability was a key component of his act, whether poking fun at his out-of-control right arm and its effect on everything from voting to hailing a cab or taking on condescending people with his signature phrase, "Hey, buddddy!"

I couldn't help but admire him for being able to laugh about his disability. I try my best to do the same and have incorporated bits of humor into my autobiography (unfortunately, no news to report about that), but it's not always easy.

It was definitely an enjoyable evening. My only concern was that my seat was so close to the speakers that I worried about my defibrillator, as being in close proximity to magnetic fields such as those produced by speakers can potentially render defibrillators temporarily inactive.* The last thing I needed was to have a problem in the middle of the show -- it would have been a real shocker! Okay, I guess I don't have a future in stand-up (or sit-down, for that matter) comedy, but I had to at least try to say something funny in this entry.

*A call to the nurse practitioner on Monday morning assured me that I was most likely sitting far enough away from the speakers, though she suggested that in the future, I might want to consider sitting a bit further away.

The Weakest Link

The Weakest Link

"If you look close enough, you'll find everyone has a weak spot."

That's a great line from "Fracture," starring Anthony Hopkins (excellent movie, by the way), but I think one could say the same thing about the wheelchair lift in my van. Its weak spot is the trip wire attached from van door to the lift, without which the lift will not operate (see picture). And to think that the ability of a piece of equipment strong enough to pick up a heavy motorized wheelchair all hinges upon one measly wire.

Well, the chickens came home to roost yesterday. Ready to grab some lunch after watching the aforementioned film -- no, Sir Anthony did not eat anyone, in case you were wondering -- my nurse and I were less than pleased to hear a loud "snap" when he opened the van door. Gulp!

"That's not good," we said at the same time.

Though I had several hours of power left on my ventilator battery as well as a cable to hook the ventilator to the van's cigarette lighter adapter, the goal was now to get me home. A few phone calls later and we learned how to use the lift's manual override. As we discovered, it has one speed: FAST! Let me tell you, I've never been happier to hit the ground. By the time we got home, I was so tired and hungry that I could have eaten someone!

For a relatively small sum, the folks at Accessible Vans and Mobility were able to fix the problem -- today (what a relief). They reattached the wire and added a spring that should have been there in the first place to relieve some of the tension on the wire.

But come to think of it, there are plenty of other weak spots in my life. You see, an existence such as mine is heavily dependent upon technology. The equipment that I use to move around, to get in my van, to operate my computer -- and even to breathe -- is so reliable that I sometimes take it for granted. But if any of these things fails, all that goes out the window -- and this life that I live becomes ever more complicated.

Of course, when that wire snapped yesterday, about the last thing that I was saying was how reliable the lift is. No, I think there were a few other words coming out of my mouth at that particular moment!