Then and Now

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...

In the Blinq of an Eye

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...

I Hate When Women Are Right

“Twenty bucks says you couldn't stay away from me even if you wanted to.”

That’s what she said to me the other night. I found that statement a bit arrogant and rather irritating. I’m not sure she intended for it to come across that way, but it did. Was she calling me out for being emotionally weak? Because I’ll admit I haven’t been feeling like Superman lately and if anyone is aware of that, it’s her. And I think that is what bothered/hurt me the most. I feel like a fragile little flower that needs to be nurtured and cooed over to stay alive. It’s pathetic and ridiculous, this I know. But to state the obvious, to have her point this out to me in a sense, well that just fucking sucks. It’s a slap in the face that implies that I won’t be able to live without her. Or maybe it’s her that can’t live without me?

As soon as she said that to me, I felt like immediately replying with my own smartass comment, something along the lines of…“Wanna bet?” Ok, not the most brilliant way to articulate myself. I realized that and controlled my urge to lash out.

She seemed almost too sure of herself, like she was daring me to prove her wrong. To step up to the plate and challenge it. So now I have. I’ve taken the bet. And she will be forced to eat her own words. I’m going to hold strong, not because I want to, but because I have to. Despite the fact that she seems to have caved a bit, I’m not going to cave. Is it addiction? Infatuation? Lust? Love? I don’t know. I just know one thing…

I. Am. Not. Going. To. Cave.

Of course it hasn’t even been 24 hours and I’m breaking already. I feel like pulling a twenty out of my wallet and slapping it down on the table. I hate when women are right.

Genetically Speaking II

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.

I'm Back!!!

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.

Me vs Tree

It’s easy to see who was victorious.

So what did we learn from this? Never bet against a guy who is amped up on RedBull and vodka if he can take out a tree on his snowboard. You know I’m going to take that challenge and come out victorious. Yes, a tree had to die in this stupid stunt, but really, it had it coming to him. He taunted me each time down the mountain by grazing my leg with his sappy branch. I was forced to carve around him and jump a patch of ice just to miss colliding with the tree. Eventually, enough was enough and the tree got it…and got it good!

Now don’t think I’m an evil person. I did say a final prayer for the dead pine, a small blessing. I would have poured a little liquor on my hommie, but I feel that wasting good alcohol like that is a sin in itself! Besides, I would need that to keep me numb from the pain that would surely hit me in the next 5-10 minutes. There is no way man can take out a tree like that and not suffer a small amount of pain. I don’t care how tough you are. I was thankful that the frigid 2 degree temperature aided in numbing my body from pain, along with the vodka.

Speaking of the bitter cold, you know what’s great? Burton thermal wear. You know what’s not so great? Forgetting to pack Burton thermal wear. The phrase “blue balls” has taken on a whole new meaning.

Mix fresh powder, fun friends, pretty girls and a cabin with a fireplace hot enough to melt clothes and you'll have yourself a very good time. Then throw in a massive amount of alcohol and you'll have yourself a weekend of debauchery. It was just what I needed.

Adding Insult to Injury

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?

What's In My Journal

I'll be honest, I'm not big reader of poetry. That's not to say I don't come across something every now and then that truly moves me. Inspires me. Gives me pause. Makes me think. Something I like to pull apart. Something I like to remain intact as a whole. Something I'm eager to share. It's powerful. It's beautiful. It's this...

What's In My Journal
by William Stafford

Odd things, like a button drawer.
Mean things, fishhooks, barbs in your hand.
But marbles too.
A genius for being agreeable.
Junkyard crucifixes, voluptuous discards.
Space for knickknacks, and for Alaska.
Evidence to hang me, or to beatify.
Clues that lead nowhere, that never connected anyway.
Deliberate obfuscation, the kind that takes genius.
Chasms in character.
Loud omissions.
Mornings that yawn above a new grave.
Pages you know exist but you can't find them.
Someone's terribly inevitable life story, maybe mine.

Keeping Pace

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.

The Gadget Gods Deliver At CES 2008

CES 2008 can be summed up as a vile clusterfuck of nerds, sluts and suits…a deadly combo. Although with that deadly combo comes the most innovative minds that lead the way in technology by supplying the average Joe with a plethora of gadget goodness. And for that, I’m very thankful. CES runs for just 3 days in Las Vegas, but in that short time, literally thousands of gadgets were showcased. Of course being the tech whore that I am, 90% of them I wanted. Unfortunately, many are still prototypes and may never see production. That’s a sad, sad shame. However, the good news is that many of the gadgets will be hitting store shelves and those that won’t will be sent back to the drawing board for redesign and improvement. There is no way I could cover all the action, so if you missed this year’s CES, here are some of highlights from it.

Purty Screens

World’s Largest HDTV, 150"
www.panasonic.com
Let’s start off with the big guns. The biggest attraction at this year’s show was the world’s largest HDTV. Last year spectators drooled over Sharp’s 108" LCD, which was the world’s largest at the time, but this year seeing was believing when you stood infront of a 150" plasma from Panasonic. 150 inches, good God! No price has been set for the 150-incher, but rumor has it that it will carry a six figure price tag. Ouch.

World’s Thinnest HDTV, 9mm
www.pioneerelectronics.com
HDTVs seem to be the most sought after “gadget”. Bigger and thinner, that’s what consumers want. So while Panasonic was wooing the crowd with 150", Pioneer was creating their own buzz with the world’s thinnest TV. It’s a 9mm plasma, actually thinner than an iPhone!

Curved and 3D Monitors
www.alienware.com and www.samsung.com
If you’re a gamer, you love being immersed in the action. So what better way to immerse your eyes, ears and body than with a curved computer monitor that wraps around you from Alienware? Or try out a 3D monitor from Samsung. Sure, you still have to wear those goofy 3D glasses, but it’s a step in the right direction in bringing 3D interaction home. This is technology that will surely be improved upon in the years to come.

Chic Geek

Solar Powered Fashion Apparel
(website link unavailable at this time)
We already know you’re a geek, but there is no need to dress the part. Be a fashionable geek. You can now carrying around your mp3 player, cell phone and other gadgets without the worry of the dreaded dead battery = dead gadget. Jackets with solar powered panels in your collar will keep you powered on the go.

Sexy Taser Guns
www.taser.com
CES introduced us to a taser gun combined with an mp3 player and covered in leopard skin. Why you ask? Why not I suppose is the answer. Now you can taser that mugger and dance all over his ass in style. You go girl!

Diamond & Swarovski Crystal USB Thumbdrives
(website link unavailable at this time)
Diamonds are a girl’s best friend and there is just something about that little extra “bling bling” that catches a geek girl’s eye. Believe it or not, you can now have a diamond encrusted or Swarovski crystal covered USB thrumdrive.

Purse-Like Laptops For Women
(website link unavailable at this time)
Is it a laptop or is it a purse? You may remember years ago when Apple introduced their first line of iBooks, which resembled candy coated purses. No self-respecting dude would ever carry one, but the ladies loved them. So it was only a matter of time before they would return, not as Macs, but as what I refer to as hideous knockoffs. They come in a variety of colors and designs, all aimed to attract women.

Stuff I Want To Adopt Or F*ck

RoboPet Named Pleo
www.pleoworld.com
CES brought us lots of robots, but none as adorable and as awesome as Pleo. For $350 you can have your own dinosaur as a pet! And you thought dinosaurs were extinct. He’s both affectionate and playful. Basically, he delivers all the fun and love of real pet ownership without the massive steaming piles of poop to cleanup.

iBuddy
www.i-buddy.com
To some, this is lame, but I thought it was kind of cool. iBuddy is a little “buddy” that sits on your desk and interacts with your MSN Messenger account. Not only does he alert you to incoming IMs, but he acts out the emoticons used in the chat. Now this isn’t a very useful gadget, but it does supply some pretty eye candy and is a nice nerdy conversation piece. I’m waiting for someone to make an AOL Running Man version that works with AIM.

Orgasmic Network Equipment
www.linksys.com
Linksys unveiled some Wi-Fi routers so sexy you’ll want to fuck them…or rather hang them on your wall as art. Trust me, they’re beautiful!

Arantix Mountain Bike
www.delta7sports.com
If you don’t think this mountain bike kicks serious ass, then there is something wrong with you. It’s made of Kevlar and carbon fiber! This makes the frame super strong and super light, weighing just 2.5 lbs. Not to mention its hollow woven design makes it super cool!

DIY Gadget
www.buglabs.net
Finally, what could be considered “The Mother Of All Gadgets”, comes Bug Labs. Bug Labs allows you to create virtually any gadget combo you could possibly think of. Want an mp3 player/GPS locater/digital camera wrapped all into one? Then you can make it. The catch, you have to be a hardcore geek because even though Bug Labs supplies you with the hardware, it’s up to you to supply the software to make it work. That means you’ll need some programming skills. So if you can’t code, then you can’t build. Sorry.

So that concludes another year of CES. And did I mention that the Adult Entertainment Expo is held right next door to CES every year? Oooh yeah.

A Jazzy Night

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...

Bloggers Guild Of America Goes On Strike

As you know, the Writers Guild Of America (WGA) is on strike, still. And because I need to come up with yet a new excuse as to why I haven’t updated my blog with latest spankin’ new gadgets from CES 2008, I’ve decided to use this excuse – I’m on strike. Yes, I’m going on a 24 hour blogger strike as the head of and only member of the Bloggers Guild Of America (BGA). So what is the BGA and why haven’t you heard of it before? Well, honestly I have no idea what it is, what I’m standing for or why I’m even striking. I just know that it’s a somewhat clever name and a perfect excuse to use when attempting to disguise my lackadaisical blogging commitment this week.

There will be no marches. There will be no picket signs. And there will be no chants of…"What do we want? Blogging! When do we want it? Now!" This is going to be a silent strike. A strike that stands for nothing and will fall for anything.

REAL blogging will resume in 24 hours, give or take a few. Thanks for your support.

CES 2008, A Geek’s Wet Dream

Kevin Costner, Yoko Ono, Mary J. Blige and Danica Patrick will be hawking products at the Consumer Electronics Show (CES 2008) in Las Vegas today, but they'll hardly be noticed. As usual, the main attraction at CES will be the blizzard of new gadgets that will have tech geeks salivating the whole year. Instead of celeb-stalking or whiling away the hours at slot machines and Blackjack tables, 140,000 like-minded gear-hunters will be prowling 1.7 million square feet of exhibit space to find never-before-seen phones, TV screens, chips and other devices that defy conventional gadget categorization.

The most sought-after products at the convention, which runs January 7 - 10, will likely be mock-ups and prototypes of products that are still a few years away from hitting store shelves. Many companies may bring working prototypes of cutting-edge devices with them to Las Vegas, but they won't display them under glass or leave them at a booth for manhandling.

Rather than risking poor reviews for a product that isn't nearly ready, these companies will hold closed-door meetings with a select group of potential partners and analysts…after making them sign non-disclosure agreements of course. More important than touching a buggy prototype is hearing a secretive chief executive disclose plans for his or her company. Some of these speeches will also take place behind closed doors.

Eww ahh. Intrigued? Of course you are. So stay tuned to my blog for more CES 2008 coverage in the next few days as the products are unveiled. I’ve already started compiling the list of must-have gadgets from the unbelievable (like the 150-inch plasma TV) to the “what were they thinking” (like the diamond encrusted USB thumbdrive).

Overcoming Writer’s Block

Dig deeper. Open those old wounds. If there are no old wounds, create them. If you have nothing to write, try killing yourself. If you fail, then you’ll have something to write about. If you succeed, your troubles will be over.

A sick and disturbing statement? Maybe. But it definitely holds much truth and does make for a telling tale and a worthy read.

Proving Myself Wrong

“I am not a writer. You will never see my name embossed on a fine leather book. The dream of being published does not exist for me. Still, I fill this virtual notebook. I cast a light on myself that is not always kind, but always shines true, illuminating the soul. Pieces of me left unwritten. A life I can't always define. Words often unvarnished. Other times finished. They are all my own and this is their home. This is me.”

I wrote that about a year ago and ever since I gave those words life, I’ve watched it slowly suck a little life out of me. By putting it on paper, I saw the cold hard truth – I am not a writer and the dream of being published does not exist for me. I had never pursued a career in writing because I always felt that it was just never meant to be. So I casted the dream aside and focused my talents elsewhere, all the while secretly wishing one day I could run my finger along the spine of a hardback book and feel each letter of my named embossed deep within the leather grain. To flip thru crisp pages and breathe in the scent of fresh printed ink. Words I once wrote by hand while hunched over a mahogany desk would now be published for the very first time, resting on a Barnes & Noble shelf, eagerly awaiting adoption. Just the thought of it makes my eyes well up with joy. It would be a very proud moment.

I snap out of my daydream and come back to reality. My love of writing will never flourish beyond some minuscule web address on the net filled with my random ramblings. www.diamondkt.blogspot.com is what I am and all I’ll ever be to the world. I am reduced to being a blogger (an unpaid one at that) and nothing more. This is me.

I have an unconventional writing style, which makes me unique, but at the same time probably inhibits me from being taken serious as a writer…or at least that is my belief. I don’t always use the correct grammar, despite what I’ve been taught. I don’t always follow proper sentence structure and I often utilize slang to get my point across. My spelling is atrocious, I struggle with past and present tense and I am a perfectionist who has much that needs perfecting. If those are my flaws/my weaknesses, what are my strengths? That I never misuse “their” and “there” and I have fairly nice penmanship?

You see, there lies the problem. I find more faults in myself than anyone sees, or at least admits to seeing, in me. That is why even though countless of people have told me I have a real writing talent, I fail to believe them. Actually, I believe them. I just don’t believe in myself. That doubt has kept me from pursuing any type of freelance writing job - paid or unpaid. Today marks 3 years of blogging for me and it also marks the 3rd consecutive year I settle for being just another blogger. Just another wannabe writer lost among the millions of other wannabe writers living their dream thru a Blogspot address. Perhaps 2008 will be the year I change that.

An e-mail arrived in my inbox just days before 2007 ended. A short note that made me rather glossy eyed, not because I was feeling sentimental, but because it came at the most appropriate moment and completely unexpected. A letter written by someone who is virtually a stranger, but yet feels like an old dear friend. In it she wrote…"And I couldn't help thinking to myself, how in the world can this man think that he isn't talented. But then again so many talented people do not see what others see in them. Dude you're good."

Just days before I had come across an opening for a freelance writing job in NYC. I would be writing for a startup company affiliated with The New York Times. It would be a side job for me as I would continue running my Network Security Consulting business, but a side gig that would fill a great creative void in my life. Just searching for a couple writing pieces to submit for the job brought a smile to my face, lifting my spirits some from what has been the darkest of times for me lately. However, my family has been anything but supportive. The negativity they fill my head with rattles my self-confidence, replacing it with the instable feeling of tremendous doubt.

Despite my biggest fear, failure, I’m applying for this freelance job in New York. I'm doing it not to prove them wrong, but to prove myself wrong. Prove myself wrong when I said “I am not a writer.”

Wake Up

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...