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...

The Future Is Here, Your Next PC Will Ripple Like Water

It’s been a long 5 years in the making, but this winter the future of computing is here! You had to see it coming. Touch-sensitive gadgets are springing up everywhere and are extremely popular. I even bought my first touch screen digital camera (Sony CyberShot DSC-T50) this past September. So it was only a matter of time before the first touch-sensitive computer arrived, entirely changing the way we use our machines of today. Microsoft has unveiled "Surface", a touch-sensitive computer shaped like a coffee table that ripples like water when you touch it! (If you don’t think that’s cool, then there is something wrong with you.)

The term "surface" describes how it's used, representing a fundamental change in the way we interact with digital content. With Surface, you can actually grab data with your hands and move information between objects with natural gestures and touch. The 30-inch tabletop display has the unique ability for allowing several people to work independently or simultaneously, all without using a mouse or keyboard. Besides fingertips, Microsoft Surface can also recognize credit cards and other physical objects. This ability to actually deal with physical objects is one of Surface's unique capabilities. The idea is to bridge the physical and virtual worlds.

Microsoft plans to initially sell Surface to hotels and restaurants. Then later it will be available to the average consumer…that is if you are willing to pay the hefty price tag. It will cost somewhere between $5,000 to $10,000 – ouch! Of course Bill Gates predicts that most households won’t be purchasing Surface for another 3-5 years. Hopefully by then, the price will drop considerably, making Surface a more “practical” buy.

So what will you get for 10g’s? Surface consists of a computer running a customized version of Windows Vista, a rear projection screen and five cameras that look through the screen from behind. The cameras are used to recognize and read items placed on the surface as well as to track hand gestures and touch. It has wired 10/100Mbit Ethernet and wireless 802.11 b/g and Bluetooth 2.0 support built in.

Surface will debut in the New York Sheraton Hotel & Towers on Seventh Avenue. If you can’t get there to see it, then visit www.microsoft.com/surface for more info, photos and a video demonstration. The best part, we haven’t even scratched the surface in what a personal computer of the future can do, or even be.

Hope Floats

If you are a regular reader of PostSecret, then you recognize this face, but I’m willing to bet you don’t have it memorized like I do. Give me a sketch pad and I could draw her. Every line. Every shadow. Every single minute detail. I know it all and I know it well. In my mind, the image is crystal clear, even the various shades of color are ingrained in my brain.

Her secret is one that should be hailed. Her life is one that should be embraced. Her name is Casie and this may sound strange, but I want to meet her. I don’t know why, but I want to give her a hug. I want to show her how to embrace this life. Embrace the person she was going to throw away. I want to stretch out my arms, wrap them around her and hold for a solid minute. She has a warmth about her that is so inviting. A peaceful appearance. Genuine and true. Full of grace, courage and determination. Her smile calms me. It physically calms me.

This might sound like crazy talk, but she fills me with something I can’t describe. It overflows in me every Sunday night when I look for her face on the PostSecret website. And I do look for her photo. I look for it like it’s a missing part of my own life. It adds something to my week. How could a photograph of a complete stranger have such an effect on me? It washes away any stress, anger, depression or anxiety I may be feeling the very second I lay eyes upon her. She is unaware of this gift she has given me, but I want to let her know. I am so thankful to of found this beautiful face.

It’s long overdue, but today I put it in print…I celebrate Casie and the Hopeline for saving her and the millions of "Casies" just like her. She is hope. Hope rising to the surface.

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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!!!

Geek Stigmata

Todd Vanderlin suffered a cut to his hand when his friend tossed him a wireless router. Now how you get injured catching a 1lb piece of networking gear is beyond me, but this guy did. Of course that isn’t the unbelievable part. What’s hard to believe is that the wound he “suffered” was in the form of a mouse courser!

This may be the first case ever recorded of Geek Stigmata. Bow down.

stig•ma•ta (noun, plural) - marks resembling the wounds of the crucified body of Christ, said to be supernaturally impressed on the bodies of certain persons, esp. nuns, tertiaries, and monastics.

My Puppy Is A Pimp!

Make-out with him and you’ll agree, my puppy is a pimp! Just ask his vet. She seriously made-out with him. In fact, he got to 3rd base with her faster than any man could get with a Las Vegas Bunny Ranch whore. Kissing, fondling, the works. I wish I was joking, but I’m not. Did I mention it was open mouth kissing? With tongue! Needless to say it was a bit much and I was becoming nauseous (and a little jealous) rather quickly. Ok, he’s cute, I get it. Ridiculously cute even. But playing tonsil hockey with my 10 week old Bulldog puppy is a little much. There are limits to a “physical”. That isn’t part of the exam. That is borderline bestiality and frankly, I felt violated for him. I understand that putting a thermometer up his butt is part of the job, but was it necessary to fondle his non-existent ball sack while you kissed him deeply? Also, he can hear you when you yell out that his testicles didn’t drop yet. He knows. He’s aware he hasn’t hit manhood. Don’t make him feel inadequate just because he doesn’t have visible jewels. Give it time. I don’t want to buy him a jockstrap for awhile anyway.

Let me ask you, who needs a wingman when you have a Bulldog puppy with a face like that? Total strangers ask to take his picture. People have cut short their phone calls just to meet him as he passes by. On multiple occasions, co-workers have requested that I bring him into work. When he arrives, people stop doing their job so they can squeeze his cheeks/jowls, tug at his neck wrinkles and poke at his belly chub. Of course he eats it all up. He loves the attention! He even helped me sign a client to a $5,000 business deal. Good doggy. I awarded him a glob of peanut butter…the puppy, not the client.

Other dogs want to be him. Guys want to roll with him and girls, well the girls just adore him! He single handedly increased my mojo by 25%. Since I got him, the number of cute single girls I’ve met has skyrocketed. It’s shocking what a 10 pound shoelace chewing machine can do for a guy’s love and sex life. Just last night I realized that my dresser is adorned with a rather sizable collection of names and numbers from various hotties. My cell phone also seems to be storing quite a few more contacts lately. I’m definitely not complaining, just wondering if it’s all the puppy’s doing or if I can take partial credit? I guess it doesn’t really matter who reels them in. It’s the end result that counts and something tells me that when they mention having dinner, they aren’t referring to staying in and eating out of a pale pink Eukanuba puppy food bag.

If you are single, I strongly suggest adopting a dog to increase the number of women you meet. If you can’t adopt one, then you must beg, borrow or steal a puppy (preferably a Bulldog pup) and let him lead the way. Actually, he won’t lead you to the girls, they will come to you. Trust me on this. I’ve even turned and walked the other direction and some girl went out of her way to cross the street (in the rain I might add) while nearly getting struck by an SUV just to pet my puppy! He is like a magnet that pulls the XX chromosome inward from all directions. They can't resist cuddling him to no end.

Now I would like to believe all the attention is due to my awesomeness, but I’m not that vain or dumb enough to even partially think that is true. It’s the pup. I know it. He’s a pimp and there is no denying his crazy pimping skills. My boy got game – pure and simple. He gets mad bitches. Besides, there is no easier conversation starter than…“Aww, your puppy is so cute! What’s his name?” Introduce the dog and she introduces herself to you along with a phone number. Not even having to ask for it? It doesn’t get any easier than that guys.

If Diesel could talk, he would disagree with the phrase “Pimpin’ ain’t easy”. Pimpin’ IS easy when you’re a waddling rolly-pully puppy. And remember, don’t be a hater. Don’t hate da playa. Hate da game. Diesel’s NY Knicks game jersey is being fitted as we speak. A good pimp needs his proper threads. Soon we will have to fight the girls off with a stick! Yes, he’s one sexy mutha-fucka.

See another photo of Daddy's lil bundle of joy...

• 4/19/07 - It’s A Boy! 7lbs 9 ounces

The 7th Annual Masturbate-a-Thon (Seriously)

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No Love For The Ugly

Are looks really everything? If you have half a brain, you answered no, but apparently not all people agree. After growing frustrated with the volume of “ugly people” on regular dating websites, three Australians (Michael Fox, James Duffy and Michael Knapp) have created a dating website for only the beautiful people. It’s called DarwinDating.com and if you’re ugly, it sucks to be you because they’re not interested in your witty sense of humor or sparkling personality. Nor are they interested if you are fat, bald or covered in acne. To put it simple, the ugly are not welcomed. If you were slapped with an ugly sticker at birth or just grew ugly over time, then you cannot signup and join. It doesn’t even matter if you are rich or famous, because if you’re ugly, it’s a no go.

The site is based on Darwin's theory of evolution – interpreted as meaning the most attractive of the species must be drawn together. Don’t feel too bad if this matchmaking website has turned you away because you aren’t alone. It is said that half of all British applications so far have been rejected.

The three Australian creators said they set up the website as a joke after getting fed up with crowds of ugly people on other dating sites, but rejects have failed to see the funny side and have bombarded them with hate mail. One rejected applicant wrote: “You are everything that's wrong in this world. Choke and die.” Spoken like a true bitter single who turns to cyberspace as a last resort in finding love, only to find themselves being rejected faster online than they were offline - ouch.

Now, I have good news for the Ugly Bettys out there. You can take comfort in the fact that when 26-year-old Michael Fox submitted his photograph, he was rejected by his own website! Oh the irony. Gotta love it!

Side Note: The actress that plays Ugly Betty really isn't that ugly in real life. Dare I say she's kind of cute? She actually is. Looks similar to Rachael Ray.

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!!!

Testing

Testing. Testing 1, 2, 3.

This is just a test post. You can ignore it...or hold your breath with anticipation for what's to come!

Ewww, ahhh.

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!