Steppin' Out on New Year's

Steppin' Out on New Year's

Year after year, I have spent New Year's Eve bored and depressed, watching the Flyers or 76ers on TV. But not this year. I actually went out on New Year's Eve for the first time in my life, spending a few hours at a Center City comedy club.

It took some extra effort to go out tonight. I had to alter my routine a bit and then go out in the cold. I had to pay expensive parking fees for my full-size van, as well as club admission for my nurse. This is an important consideration whenever I am out with my nurses -- do I pay for their admission because they are on the clock and it wasn't their decision to go somewhere? I have no set policy, but for more expensive tickets such as tonight's, I typically pay for my nurses.

While it all added up to be an expensive night out, I was grateful just to have a nurse willing to work on New Year's Eve. The show, which featured comedian Joe DeVito, was enjoyable and the club was very accommodating, even reserving a table for me so I didn't have to fight the crowds. All in all, it definitely beat staying home and being miserable.

Who knows what's in store for me in the coming year, but with complimentary tickets for a future show, one thing's certain: I will be making a return visit to the comedy club.

Granny’s Wisdom Tells It Like It Is

Let me paint the scenario for you. It’s Christmas Day. We are at my parent’s house and its cocktail hour. Martinis are severed. Everyone in the family drinks up, including my 88-year-old Grandmother. After a furious shaking, Grandma pours my drink and hands me my glass. I give the toast. “Cheers. To family, friends and getting shit faced.” (Because nothing is classier than getting wasted infront of your Mother and Grandmother. )

My Grandmother turns and asks me…“Do you like it, dear?”

I take a sip, nod my head and say…“It’s alright. A little more Vermouth maybe.”

Her reply, absolutely priceless! She places her hand ontop of my forearm, as if to comfort me and draw me into her. I can feel she is about to say something important. Words I am not to forget. She has grabbed my full attention, then turns to me with a very serious face and passes on the best advice a Grandma can give her grandson.

“I always say, it doesn’t matter if it tastes good, as long as it makes you feel happy.”

Granny is a lush and I love it.

House Arrest

House Arrest

After years of speeding in my motorized wheelchair, the long arm of the law finally caught up with me today. Well, at least that's what I thought when I saw a uniformed police officer at the door. But it was just my friend and former attendant Maria -- now Officer Maria -- and instead of serving me with a search warrant, she served me and my family with a chocolate cake! She did slap a handcuff on my wheelchair, but only because my father insisted.

Though it's disappointing when I lose my best attendants, it's always good to hear when they're doing well. It was great to catch up on old times, but those stories weren't nearly as exciting as the ones about her time on the police force. After all, getting me out of bed and feeding me breakfast isn't half as exhilarating -- and dangerous -- as chasing the bad guys! Of course, Officer Maria might soon be chasing me if I don't stop speeding...

We Are Family

We Are Family

Back in the day (which wasn't actually all that long ago) the kids table was always full with cousins from both sides of the family for holiday dinners at our house. Now that everyone is away at school or working far away, we never all get together. As the oldest cousin, I decided to change that this year and organized a cousins' lunch. The stars must have been aligned because we were all able to agree to meet today. For me personally, it meant a great deal. I plan on sticking around for a while, but my health situation is what it is. So I don't want to miss any opportunities to get together with everyone. I'd say it was great having no adults around, but we are all adults now--no kids table for us anymore!

David’s Last Minute Holiday Gift Ideas

Crunch time is on. With Christmas just days away, chances are you of the millions of people who are still scrambling around for that last minute gift. That’s bad, but what’s even worse is that you have no clue what to get them! There is always that one person on your list that you have no idea what to buy for, so you put off shopping for them. Instead you opt to waste time and procrastinate just a little longer by reading my blog. Well fret not my friend. You will be glad that you are reading my blog right now because I am about to solve all your “what to get” shopping dilemmas. I’ve put together a collection of rather unique, to say the least, gift ideas for everyone on your shopping list. Prices range from just a few bucks to well over a grand. So there is surely something for everyone’s budget.

Kama Sutra Cookie Cutters
$55

First and foremost on everyone’s list should be Mom. Moms love to bake, right? And nothing says it’s the holidays like the smell of fresh baked cookies as the family gathers around. Although, if your Mom is like mine, she’s been using the same old Santa, star, snowman and tree cookie cutouts since the 70s. Isn’t it time to spice it up a bit and get Mom new cookie cutters? Those crazy Sweds are selling cookie cutters in various sexual positions. From the Wheelbarrow to the Butterfly, there is sure to be a position to satisfy even the most discriminating taste. Personally, I think a cookie cutter in the shape of the Shocker would be a nice addition, but for now you’ll have to settle for the “shockerless” selection. It’s being sold for 35 euro, which I believe is around $55 US dollars. So pick up a set for Grandma too! Come Christmas morning when they open the Kama Sutra Cookie Cutter set, I guarantee you that the look on their faces will be priceless. After all, gift giving is all about taking someone’s breath away and this gift will certainly do just that.

(Spoiler Alert: Your parents still “do it”! I know, I want to vomit at the slightest thought of that too, but I’m afraid it goes on whether we want to believe it or not.)

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Mom’s Magic Spit Captured In A Can
$9 (2 ounces) $18 (7 ounces)

Now with Mom and Grandma out of the way, we need to shop for brothers and sisters. Like most siblings, you probably have a love/hate relationship with your brothers and sisters, right? With differences cast aside, there is one common bond you all share – Mom or more specifically the healing power of Mom. Remember back to when you were a kid and you fell down and scrapped your knee? Mom immediately went into SuperMom mode and became your own personal on-call doctor. She had that healing touch that only a Mom has. She had the power to soothe with spit. Yes, spit. Nothing cleaned up a dirty face or a scrapped knee faster than Mom’s antibacterial disinfectant spit. She didn’t always have her medical bag (AKA purse) on her when you harmed yourself, so like a military doctor in the field, she had to make do with what she had…and she had spit. And now you can give Mom’s Magic Spit in a can!

Momspit (inspired by the original) is the universal no-rinse cleanser. It’s not a sanitizer and does not contain any alcohol. In fact, it’s gentle enough to use on your face. Momspit foams for easy application, eliminates dirt and grime while leaving your skin moisturized and yummy smelling. It’s the perfect thing to throw in your purse, place on your desk, or keep in your car. To use, just apply a small amount on hands or face and rub in completely. No rinse needed, just like the original. Perfect for cleaning milk mustaches too.

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The Dual Crapper
$1,4000Time to shop for Dad and if you are like me, you secretly wish you could spend more quality time with your Dad. A little male bonding – some father/son activity you can both share in and enjoy. So what is one of Dad’s all-time favorite activities? Pooping. So allow me to introduce the dual crapper, or as the makers call it “The TwoDaLoo”. Now the idea behind it was to bring couples closer together, but if you ask me, that’s a little too close for comfort. Apparently the makers of The TwoDaLoo think that nothing says you have a tight relationship like being able to take a dump infront of your significant other. Personally, I feel that nothing says you need more space in your relationship if you partner is insisting you even shit together. Dropping a deuce is something I like to do alone, like a big boy.

The TwoDaLoo is billed as the world's first toilet two people can use, at the exact same time, while conserving water supply all with one flush. It features two side-by-side toilet seats with a modest privacy wall in between. An upgraded version includes a seven inch LCD television and iPod docking station. Now instead of fighting over bathroom time, you can argue over what station to watch while on the pot.

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Barbie Must Die Photography
$5 each

Have a kid on your list? Why not give her something from Barbie? Little girls just love Barbies and they are sure to love this year’s new Barbie Murders collection – perfect for any child’s bedroom. It features an assortment of gagged and bound bloody Barbie shots taken just moments before she died a slow and painful death, full of absolute terror. Now doesn’t that sound warm and fuzzy? Just imagine tucking a little one into bed with one of these hung above her headboard. Many digital prints to choose from. 8.5x11 unmatted and unframed. Hopefully next year they will make a GI Joe collection for boys.

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Mushroom Knife
$80Last but not least, you need to get your sweetie something. So why not get her a mushroom knife? You know, for all that mushroom cutting she does. What? Your girl doesn’t hike up mossy hills and cut down fresh mushrooms? Seriously, who does? And who would need such a stupid tool other than maybe Martha Stewart who keeps a blowtorch in her kitchen to finish off a soufflé with a crusted top. Seriously, if you get your girlfriend such an asinine present, I think she has the right to turn around and stab you with it, repeatedly. Now if you are a girl who buys your guy this, chances are he will find a use for it. We are resourceful like that. However, I suggest a nice HDTV for your boyfriend instead.

See, now aren’t all these gift ideas much better than the re-gifted fruitcake idea you were going to resort to? You're welcome.

Sign of the Times

Sign of the Times

It seems I've become quite popular as of late. As I mentioned in my entry following my hospital appointments last week, yours truly was interviewed by The New York Times, which was gathering information for a wide-ranging story on DMD that should appear within the next few weeks, from what I've been told. The story will focus on the improved quantity and quality of life for those with the disease, which was why they observed my appointment. Just the simple fact that older guys like me are even around today is indicative of how things have improved.

Today, as you can see from the photo, the Times' videographer came to my home to take a more in-depth look at a day in my life for the newspaper's website. And you just know I used this opportunity to promote my soon-to-be released book!

Stay tuned to Winheld's World for news about when the article and/or video will appear...

A Very Geeky Green Christmas

Ever since Al Gore won the Nobel Peace Prize for his work with the whole global warming issue, people have been going ga-ga over Going Green. It’s all about protecting the environment by being eco-friendly. Whether it’s recycling everything under the sun, cutting out products that aren’t biodegradable, buying a hybrid vehicle, or just hugging a tree, people are hoping to save the world…or at least lend a helping hand in conserving planet Earth.

So now that the Christmas season is upon us, we turn to geeks to help us in dreaming of a green Christmas. There will be no chopping down of a white pine tree, even though I will admit it smells quite lovely. No, this year if the world is to Go Green, then that means we have to make some sacrifices. I suppose to really Go Green, you have to buy an artificial tree that’s made of recycled pine or something? I don’t know, but I do know that they now sell strands of LED lights to decorate your tree. LED lighting is an energy efficient replacement to the standard bulbs you are accustom to using. Also, LED lights actually give off more light, making your tree appear extra sparkly. And who doesn’t enjoy a little bling around the holidays?

But what good is a sparkly lit tree if there aren’t any pretty ornaments to hang from the branches? Don’t worry, the Green Geeks have you covered there too. You can take your old CDs and circuit boards lying around (and if you aren’t a geek, you probably don’t have any circuit boards lying around and you probably don’t even know what a circuit board is) and turn them into trees, Santas, stars, reindeer or whatever your little heart desires. Not only will you be saving money, but you’ll also be recycling electronic goods and creating art! Or just creating a tacky tree? You decide.

Panic Attacks

It feels as if my blood is boiling and my skin is on fire. I’m soaked in sweat and I’m gasping for air. My breathing is rapid and shallow. My heart pounds harder and faster in my chest. I image this is what it must feel like to be suffocated with a pillow or to fight the overwhelming and uncontrollable sensation of being buried alive. Without dirt to dig into, my nails begin clawing into a down filled mattress topper. Sheets become twisted and tangled around my ankles as if to say…"You can’t run, therefore there is no escaping." My comforter offers me no comfort, it only helps hold in the heat of being trapped in this pressure cooker body of mine. Until finally, I erupt.

panic attack - noun
An intense attack of anxiety characterized by feelings of impending doom, terror and fear. Apprehension, depersonalization and derealization occurring in major depression. This is accompanied by trembling, heart palpitations, shortness of breath and sweating. Also called anxiety attack.

The scenario that I described above is exactly what I’ve been experiencing this week. My alarm is set to go off at 6:00 each morning, but for three straight nights in a row now, I find myself being jolted awake each day at 5am from a panic attack. It seems to be coming on in my sleep. Perhaps as the minutes draw closer and closer to where I am to start my day, subconsciously the anxiety of having to face a new day overpowers me. I’m sinking in a deep, bottomless black ocean filled with ice-water. It’s what psychologists would refer to as a "fight or flight" response. The "fight or flight" response is our body's primitive, automatic, inborn response that prepares the body to "fight" or "flee" from perceived attack, harm or threat to our survival.

I have been doing some research online about panic attacks. They offer a checklist of panic attack symptoms, saying if you have 4 or more signs, then you are indeed having panic attacks. It turns out that I have more than double the amount of panic attack symptoms. So my personal diagnosis, as my very own uncertified doctor, would state that I suffer from panic attacks. And it does seem to be linked back to major depression.

The good news (if there is any) is that as quickly as the panic attack occurs, it leaves. It leaves me in a cold sweat, somewhat trembling and naturally a little freaked out. Obviously I don’t want this to keep happing, but I feel powerless to stop it. I have insomnia as it is and having panic attacks set in during my sleep only makes me want to lie in bed even less. I’m 5 again and scared to fall asleep.

I’ve never had panic attacks before and I’m not exactly sure why I’m having them now. Well actually I do know, but to explain would involved more time than I’m willing to shed on this problem at the moment. So I choose to withhold much of my prior history and details. I realize that I’m beyond the point in which I should have sought help. However, I would like to ask that if anyone reading this has experienced or is currently experiencing a similar situation of panic attacks occurring in their sleep, please drop me an e-mail at diamondkt@gmail.com Your insight would be greatly appreciated. Thanks.

Take a Deep Breath

Take a Deep Breath

I did a lot of that today at my visit to the pulmonologist today at The Children's Hospital of Philadelphia (CHOP). Pictured (from left) are Dr. Howard Panitch, my pulmonologist, and Dr. Jason Caboot, one of the pulmonary fellows. Though I was feeling less than energetic, the results of my pulmonary function tests (PFTs) were not as bad as I thought they would be, and were similar to my June results.

One thing I've been noticing in recent years is that with Duchenne's, we're all still learning. Doctors are now realizing that there are no hard and fast rules for treating this disease, as my pulmonologist explained. While some doctors feel that guys with DMD should eventually have tracheostomies, others believe that no one with DMD should have them and should instead receive non-invasive ventilation. Not necessarily so, Dr. Panitch said. Patient preference, among other factors, is now an important consideration. He went on to tell me about a guy in his mid-20s with DMD who opted to have his trach removed, and began using his ventilator through a sip attachment during the day and a mask at night.

Could I do that? Again, it's an individual thing. I believe that I was in such poor shape that I needed the trach when I got it. Even today, though, my cardiac status might make the trach a better option because I could exert myself less. Without a trach, on the other hand, I could be more independent, able to stay by myself for periods of time. Still, I do need assistance, and I would not qualify for enough help if I didn't have a trach, which entitles me to 16 hours of nursing care a day. I also wouldn't be able to talk as well without my trach because I'd need to take breaths from the vent through my mouth and wouldn't be able to directly suction secretions from my trachea if I had a cold.

It was a busy day, as I also had an appointment in CHOP's neuromuscular clinic, where I saw my neurologist as well as a nutritionist, geneticist, physical therapist, and social worker -- all while being observed and interviewed by a reporter and a videographer for The New York Times for a piece on DMD (Stay tuned). Camera or not, though, I was my usual funny self. When the nutritionist talked about the "textbook" way of doing something, I told her that I had "lost the textbook" and was not "planning on finding it anytime soon!" After all, just because it was a long day didn't mean I was about to lose my sense of humor.

Renaissance Man

Renaissance Man

Though I love my sports as much as the next guy, I enjoy some culture every now and then. So I decided to take a break from last-minute revisions to my book manuscript to check out the new Perelman Building (special thanks to Brad at phillyskyline.com, one of my favorite sites, for the photo) of the Philadelphia Museum of Art. Its collection, which includes may costumes and furniture, may be best descibed as eclectic. Very interesting, though I was able to better appreciate what I saw because I went with a friend who is an artist! For more photos, please click here

The building itself was impressive. Built in the 1920s, the Art Deco style building was originally home to Fidelity Mutual Insurance Company. However, getting into the place was interesting. At a wheelchair-accessible side doorway, we had to push an intercom button so a guard could bring down a lift. There was barely enough room for me and the guard. At least it was accessible. Because that wasn't the case when we tried to find a place to eat. But hey thats life in the big city, especially an older one like Philly. We did find a good pizza shop, though.

Now, back to editing my book...

The Scar You Don’t See

This was originally posted on PostSecret and it drew me in for 2 reasons…

#1 Because it made me think back to when I wrote a post on this very subject. 6/1/06 Scarred

#2 Because I have a friend who has several scars on his body and not a single one has a story behind it, at least not that he can recall. He’s a very open guy, so I don’t think he is purposely withholding the details. Truthfully, I think he mentally blocked it out for a good reason. I wish people would stop asking him “what happed there” because he doesn’t have an answer.

A scar is a reminder that the past was real. And the mind has the ability to barricade itself from what it can't live with. A defense mechanism for a boy who was most likely once defenseless. This permitted him to live.

Information technology plays an important role in an organization. Every organization having computer network infrastructure require the IT professional to handle the entire network. So if you have passed any of the Cisco 646-363 CXFA, 642-241 exam UCCED or Cisco ccda 640-863 DESGN exam you are most likely to be the first choice for employers. CIW 1D0-541 exam and Cisco Certified Information Systems Security Professional CISSP exam will also play an important role in your career life.

Sex And The City, The Movie Is Here At Last!

Hello, Lovers! Grab yourself a Flirtini, call your girlfriends and press play to find out what Carrie & Co. have been up to all these months while they weren't busy clogging up the sidewalks and becoming New York's biggest tourist attraction. The crew has wrapped up shooting for the movie and in May of 2008, you can see it all play out on the big screen, finally! Its official, the first Sex And The City Movie trailer is here.

www.SexAndTheCityMovie.com

Turns out we'll be seeing a lot of the same 'ol shenanigans in theaters as on TV. Clothes, shoes, shopping, talking, drinking, dating...and of course sex. Personally, I’m hoping there will be plenty of sex. According to the 39 second teaser, "friendship never goes out of style"…and neither has my love for the Sex And The City girls.

I know it’s not very manly to admit, but I love, love, LOVED that HBO show! Don’t believe me, then just keep in mind that I eat at The City Bakery just because it is the home of The Big Brownie – Carrie Bradshaw’s favorite sinful treat. Truth be told, I’m as excited as any girl would be that the movie is coming out. Is that gay? It probably is, but I don’t care. So what if I’m the only straight dude in a theater full of chicks. I’m comfortable with my meterosexual status. And I just may be the first “girl” in line for the premier in 5 months.

Related posts of interest…

• 11/28/06 – The City Bakery, In Search Of The BIG Brownie
• 2/8/06 - Thinking With The Right Head

Inadvertent Molestation

Let’s be perfectly clear about something, I love my Bulldog puppy. Not in the sick and twisted bestiality way that would require action from the ASPCA or PETA. I love him in the way a boy loves his four-legged best friend. A deep bond. Unconditional love. The words just float right off my tongue. I love him. I love every wrinkle on his face. I love his fat paws. I love how he comes over to me and licks my leg after I reprimand him. It’s his way of saying sorry and asking if we can be buddies again. I love how he moans and groans after scarfing down his dinner. Like most guys, he has a tendency to eat too fast which results in a tummy ache. He comes to me because he needs his belly rubbed, to help soothe the pain. He also turns to me when he’s sleepy and just can’t quite fall asleep soundly. He likes his wrinkles rub, AKA his face petted. And as any good Dad, I oblige.

So the other night as his 10:00pm bedtime neared, he walked toward me with this sad and pathetic “I can’t sleep” look on his face. You could see the Sandman was calling his name. His eyes were droopy (actually they always are whether he is sleepy or not) and his movements had slowed considerably. I patted the seat cushion next to me on the couch, inviting him up. He was so tired that his chubby little butt couldn’t even make the 15inch leap. He held on with his front paws and chin as the back legs scrambled in a second jump attempt. Disgraceful. I couldn’t bare witness to this anymore and I offered hindquarter assistance.

There he was sitting beside me, just waiting for me to put down my laptop and give him my full undivided attention. I know he wanted his wrinkles rubbed, but I was in mid sentence of a contract I was putting together for work. I didn’t want my train of thought to be broken. I just had a few more lines to type and then I would give him all the affection in the world. I'm a softy. I simply can’t resist that face. So I made the decision to pet and type with one hand. Now before the “one handed typing” wisecracks begin, let me just say that I’m not an expert, despite the rumors you may have heard. Now this is where the story gets, um sticky.

It’s one of those times when you should trust your gut instinct, but for whatever reason you ignore what your gut instinct is telling you because you think no way could that be true. So you let the situation progress just a few seconds longer before you realize the monumental mistake you have made! You allow it to continue until you find yourself doing the unspeakable. An action that is truly vile and fills you with so much shame that there is no way in hell you would ever tell a sole about what has occurred, let alone post on a blog for the entire world to see on the Internet. Right?

With my eyes on my laptop screen, I just assumed that I was petting Diesel’s leg. So one stroke down and what…? I brushed the thought off and didn’t think much of it. One stroke back up and whoa, I think that was…? Nah, it couldn’t be. So one more time back down just to confirm that what I just petted wasn’t what I thought it was. It felt kind of squishy. His legs are very muscular. So what could be squishy feeling? And then the horror sets in. I look over to see where my hand is resting and realize I just stroked my dog’s dick! I inadvertently molested my puppy. A few more strokes and that squishy thing would have turned into a hard red rocket. I feel nauseated, not to mention I’m a sick,sick bastard. I’m a puppy molester! A pervert. I owe him an apology.

I immediately apologize to my dog for fondling his naughty place. I tell him it’s wrong and promise that it will never happen again. He looks at me as if to say...“How could something so wrong feel so right?” I have to admit, he has a good point, but we still aren't going to do it again. Sorry.

Condom Fashion Faux Pas

China's manufacturing industry has been repeatedly tarnished this year by a slew of scandals involving shoddy or dangerous goods made for both domestic and foreign markets. So what I’m about to say shouldn’t come as shock, or maybe it will. In the latest example of potentially harmful Chinese-made products, used condoms are being recycled into hair bands. The rubber hair bands have been found in local markets and beauty salons in southern China. Usually recycling anything is considered a good thing, but not in this case. Basically, what was once worn on Lu’s wang, is now used to pull back your bangs!

Let’s state the obvious, besides this being completely disgusting, it’s also highly dangerous as it threatens to spread sexually-transmittable diseases that condoms were originally meant to prevent. Despite being recycled, the hair bands could still contain bacteria and viruses. Therefore people could be infected with AIDS, genital warts or other diseases if they hold the rubber bands in their mouths while styling their hair. (And I just lost my appetite.)

Surprisingly, consumers don’t seem to care if their health is threatened or if the Chinese government states that recycling condoms is illegal. In fact, sales are up! These cheap and colorful rubber bands and hair ties continue to sell well. A bag of 10 of the recycled bands sells for just 25 fen (3 cents), much cheaper than others on the market, which accounts for their popularity.

This may be the first time we have seen used condoms integrated into the fashion world. However, it wasn’t long ago that designers were creating entire clothing lines out of new condoms...and we will leave that story and photo gallery for a future blog post.

Welcome Back

Welcome Back

In what has become an annual tradition, I joined several pulmonologists from Children's Hospital of Philadelphia in addressing the second year students at the University of Pennsylvania School of Medicine, where I have seemingly become a regular speaker. In fact, some of today's students remembered me from my spring presentation, when they were in their first year of school. I might just have to change my material next year -- maybe I'll an outrageous foreign accent or something!

As usual, my favorite part of speaking to the students was answering their questions. As the work that I do involves assistive technology, I enjoyed answering the question I was asked about how I use my computer (voice recognition software and an infrared camera mouse). But I thought that the most interesting question I received was when someone asked me when I knew I would attend college and how that decision came about. That was easy. I always planned on going to college. My parents expected me to do so. Where I attended high school, it was practically unheard of not go to college. I saw myself as no different from anyone else. Plus, while I was in a motorized wheelchair, and I missed some time to have spinal fusion surgery, I was relatively healthy.

I would love to be as healthy and energetic as I was back then. Even so, I felt fortunate just to be here, doing what I do best: talk. Whether anything useful actually came out of my mouth, well, I'll let the students be the judge of that!

Perseverance

What do you do if you have a dream, but everyone around you keeps telling you to be more realistic and to give up the dream? What if they want you to pursue a more “sensible” and traditional career route? You ignore them. You shut out the naysayers and you stay focused on your dream. It’s the only way. There will always be negative people. So we will always have naysayers. If you listen to them, you will never pursue your dreams and you will never follow your heart. Therefore, you will never be truly happy. And I can’t think of a greater tragedy in life than never pursuing one’s dream. To never follow your heart. To never experience happiness that comes from deep within your soul. A life left with unfulfilled dreams is not a life I would ever want to lead, nor be remembered for. So how do you make your dream a reality?

Perseverance is meeting an obstacle in life, an immovable rock,
climbing over it and carrying on.

First, you need to have a dream. Second, you need to want the dream bad enough that you are willing to take a risk, to take a chance at changing your life. You have to believe that achieving your dream is completely within your grasp. You need to stay true to yourself and stay motivated. But yet, you have doubts, because dreams such as yours are not considered realistic. Doubts hold even the best of us back. If you remember nothing else I say, remember this, doubt is the enemy. We all have doubts and they’re unavoidable. Sometimes it’s good to be realistic because you need to be able to analyze whether a dream is achievable or not. But if the only thing stopping you is fears and doubts, and not some insurmountable obstacle, then you need to banish those fears and doubts.

A doubt, as innocuous as it may seem at first, has a way of creeping its way into your subconscious. It has a way of worming itself into the depths of your heart, like some kind of black cancer that has infiltrated your body. The doubt lingers in the back of your head, gnawing. And without warning, it will eventually conquer your dreams. When you think about yourself, your self-image will not be of that person you want to be, but the person that others want you to be. And never underestimate the importance of passion in life. It fuels a dream like nothing else. If you are lacking in passion, you are probably also lacking in inspiration. So get inspired. Inspiration is one of the keys to achieving any dream.

Doubts will keep you in a job and in a town you hate, just because you’re afraid to go do what you really want to do. Doubts will keep you in a crappy relationship because you don’t think you deserve better. The good news is that you can banish doubts. Imagine that the doubt is an ugly little bug. Now step on it and squash it with the bottom of your shoe. Exterminate it. Do not let it live and spread! Replace it with positive thinking. When it comes to the external negative factors, the naysayers, you have to learn to block them out. Or if you’re like me, you have a contrarian streak in you. The naysayers only fuel my determination to succeed and prove them all wrong!

So you’re passionate. You’re inspired. You’ve blocked out the naysayers. You’ve squashed your doubts and you’re ready to pursue your dreams, but there is only one problem - you’re afraid to take the plunge. The best advice I can give you is to imagine that you need to swim out to a boat on a lake. You’re standing on the dock, looking down at the icy cold water. You are afraid to dive into that water, but you know you need to take that plunge to get to your boat. So how do you do it? Do you go in one toe at a time? Do you stand there for awhile, waiting for the right moment? Do you wait for someone to give you a push? No. You just do it. You just dive in!

Once you’re in, it’ll be freezing, but you’re in. You’ve already committed to it and that makes you more likely to achieve your dreams. You now have no choice but to swim to the boat. And once you’ve gotten to the boat, you’ll be glad you took that plunge. That’s how it is with your dreams. You can’t wait for the right moment to come along, or for someone to give you a push, or for the lake to warm up. You just have to dive right in. Keep in mind that motivation comes in waves and it’s impossible to keep it high all the time. Obstacles are sure to come up, but you need to be a strong swimmer in the face of adversity. Plan it out. Do your research and when you’re ready, dive in and don’t look back. There is no better time than the present to test the waters.

This is the pursuit of happiness.

Darius Goes... to Your Home

Darius Goes... to Your Home

Several months ago, I wrote about "Darius Goes West," an uplifting documentary film (see trailer, at left) that follows the cross-country journey of Darius Weems, a then 15-year-old with Duchenne's, with the assistance of a group of loyal friends. You can ready my previous entry here.


Now, after screenings across the country, the film is coming to DVD, just in time for the holidays. To order a copy, please click here.

We all have a part to play in the fight against Duchenne muscular dystrophy, whether it's Darius with this film or me, with my book about my life with the disease. So, just as I will soon be asking you to purchase my book, I encourage you to purchase a copy of "Darius Goes West." Proceeds from its sales go to Charley's Fund, an organization started by the parents of young boy with DMD that is dedicated solely to funding a cure or treatment for the disease.

Gobble, Gobble, Gobble!

Gobble, Gobble, Gobble!

Happy Thanksgiving, folks! For those in our worldwide audience who are unfamiliar with this holiday, you can read about its origins here, but Thanksgiving is essentially a time to give thanks for all that one has in life. As you can see from the picture above, Thanksgiving is also a time to celebrate with family and friends -- and to eat lots of turkey, stuffing, and mashed potatoes!

My life is hardly perfect (whose is?), but I have plenty to be thankful for this year. My health has remained stable. I have been fortunate enough to find a publisher for my book. I have a wonderful circle of friends, which has grown to include friends across the world, thanks to this blog. I have a loving family and a dedicated group of nurses and attendants to care for me.

And tonight, of course, I was thankful for a delicious Thanksgiving dinner. For more about the food that I ate, click here or here to visit Food Network Musings, where Sue (that's Aunt Sue to me) has posted photos of the dinner she prepared. By the end of the meal, I was also pretty thankful for my ventilator as I had eaten so much that I wouldn't have been able to breathe without it!

From Winheld's World to your world, wherever that may be, Happy Thanksgiving!

Oprah Made Me Cry

It’s a subject that no one wants to talk about, but if affects every one of us. If you knew you were dying, how would you spend your time? What would you say to the people you love? How would you live?

It’s frightening and really difficult to talk about, so I’ve decided to write about it. It’s death. Or rather living. When you look at it as “living your life”, the topic becomes less scary and much more inspiring. The most inspiring man I know is Randy Pausch. He is one of my CMU professors, as well as a married father of three. To put it rather bluntly, he is dying. He has pancreatic cancer and has been given just months to live. However, this post isn’t about death and it isn’t about cancer. It’s about life. It’s about living. It’s about living your life to the fullest and looking back with no regrets - realizing the biggest regrets are not of things you did, but things you didn’t do. And it’s about how his recent appearance on the Oprah show brought me to tears, literally.

(His speech is in the first 10 minutes of the show.)

I feel honored to know him and blessed to have been taught by him as a graduate student. Saying that I admire him is quite an understatement. Randy Pausch has inspired me with not just his words, but with the way he has chosen to live his life. So yes, Oprah made me cry, or rather Dr. Pausch’s “Last Lecture” Reprise did. It is a little embarrassing to admit I actually watched an episode of Oprah, let alone cried during it. However, I’m willing to let the world know my professor brought me to tears in hopes that it will reinforce just how important his speech is to hear. What a profound impact it had, not just on me, but by the millions of people who have now heard it. It’s literally life changing and I feel it’s imperative that I share it with you.

When I think of Dr. Pausch, I think of someone that delivers valuable, powerful lessons in the simplest of terms. “Brick walls are there for a reason, they let us prove how badly we want things.” “If you live your life the right way, the karma will take care of itself, and the dreams will come to you.” I love his outlook on so many things and find myself being able to relate to him on so many different levels, like when he suggested that parents should let their kids paint on the walls. His parents allowed him to express his creativity, drawing whatever he wanted on his bedroom walls. I would have loved if my parents would have given me permission to do that! Growing up, I told myself that one day when I have kids, I would paint their bedroom walls with chalkboard paint. So in the middle of the night when they brainstorm up the cure for AIDS and cancer, they will have somewhere to jot down the algorithm. Or if they just need a creative outlet to scribble a silly face, that would be ok by me too.

Pull out the fine China tonight and eat your grilled cheese sandwich on it. Slip into an outfit you have stashed in the back of your closet, saving for a special occasion. Toss around that autographed NFL football that is encased in an air-tight display case. What are you waiting for? Live today because you never know if you will be around tomorrow to enjoy life's simple joys.

Leonardo da Vinci once said “As a well-spent day brings happy sleep, so life well used brings happy death.” It’s a beautiful sentiment and a very famous quote from one of the world’s most historic figures. Although, a message attached to a framed family photo resides with me stronger. It rests on the mantle of my fireplace, etched are the words…“Live Well, Love Much, Laugh Often.”

Nothing could be more true and I think the good professor would agree.

Memorandum

Sometimes I think the only person who reads my blog is Vinnie, my 4th cousin who is twice removed. I’m not even sure what that means, but if I actually had a cousin named Vinnie, then I bet he would hold a title like that. As you can see, this post is leading to nowhere. You could say it’s a rather pointless post. However I’m writing this short note to inform those of you who do read my blog, besides Vinnie, that I’m sorry.

I’m sorry I’m lacking in creative juices lately. I’m sorry I’ve slacked in my regular posting habits. You see, the two go hand-in-hand. You just can’t have good writing without creativity. And what would a blog be without good creative writing? It would be mine – a bore.

Believe me, the content is there. Coming up with topics to write on has never been a struggle for me. The real problem is…well that’s just it, I can’t write about the “real problem”. And why is that? Why is it that the things we need so desperately to get out in the open are the very same things we close up about and hold inside ourselves?

So as the internal battle rages on, I hope to numb my mind to it long enough to allow the creative juices to flow freely again. And when they do, that is when I will put pen to paper, or rather fingertips to keys. Stick with me. I’ll pull thru and return to my bloggy ways one of these days.

Better Than Sliced Bread

Think of it as God's gift to consumers. It's perhaps one of the best inventions since sliced bread. No, it’s not the Flowbee or The Clapper. Those are both piss poor products if you ask me. This is something much cooler. Something 10x better. Something as useful as the jockstrap and as multipurpose as the Swiss Army knife. It’s as universal as the remote control and “almost” as awesome as the iPhone. You may want to sit down to prepare for this news as I proudly introduce the Dual Bladed EZ Clam Shell Opener.

Huh what’s that, you say. Well basically it’s a little gadget that allows you to effortlessly open plastic clam shells. You know those annoying vacuum sealed packages that everything under the sun comes in. Those plastic packages which are so freaking airtight that not even an angry grizzly bear could tear into if his life depended on it. In the past, I’ve bloodied my fingers and teeth trying to open them. That was before I resorted to stabbing it with a butcher knife in a Psycho shower scene reenactment.

Not only is the Dual Bladed EZ Clam Shell Opener my dream come true, but it’s also the answer to all my problems and questions, except this one…now why couldn’t I think of that?

I would be sitting pretty as a multi-millionaire if I had. Damn this unclever brain of mine.

iArt

Ever wonder what an exploded iPod would look like incased in a giant block of ice? Probably not, but now you don’t have to wonder anymore (even if you never wondered in the first place). The iPod has become the Kleenex of the mp3 players and despite its rather subtle cosmetic facelifts thru the years, the iPod has never looked this cool!

This rather refreshing view was created by dissecting an iPod and dumping resin all over it. I refer to it as “iArt”. And this isn’t just for pretty, it’s fully functional too. The internals of the dock are embedded on the bottom. This allows you to control it, charge it and of course listen to it. The Legos attached to the bottom act as support legs for the standing cube.

The little bubbles you see actually occurred by accident. Originally the artist intended for the piece to be smooth and flawless like glass. However, the air pockets found their way in during a mistake pour of resin. Personally, I like the serendipitous addition.

See more of this artist’s work at BillyChasen.com

The Dirty Little Secrets You Can’t Speak Of

She had enough. She broke down and had to confide in someone. She wanted it to have a voice. She needed to be that voice. So she said it. She shared it. She let it all out and then some. I expected it. I could see it coming, but to the degree in which she dealt with it, oh no I didn’t see THAT coming! It was like something from a Hollywood script. I thought people’s lives were only like this in the movies? Apparently not. This is real life. Real drama. Real everything filled with sex, love, money and an almost murder!

Every family has a few, the dirty little secrets you can’t speak of. The dirty little secrets you find out about, but swear on your life or the life of a loved one that they won’t ever leave the room in which they were aired. These four walls aren’t talking. My word is good. Your secret is always safe with me. I don’t just say this. I mean this. And those that know me well know this to be true. It’s why my sister has nicknamed me “The Vault”. Entrust your verbal valuables with me and within me is where they will stay. I’ll lock them down, tuck them away and throw away the key. That is how much value I give to the secret after someone confides in me. The Vault provides top notch security like no other.

Most of us do everything in our power to see to it that our dirty laundry is never aired, but everyone knows of its existence, even if we deny it has life. Its presence is known even if it is never fully seen or validated with a voice. We are aware of its unspoken truth. The scent of it lingers in a chilling breeze. It exists behind a closed door and it grows uglier in the darkness of the night. When a secret is revealed, you are either shocked and left in disbelief, or you have been expecting it and play the semi-surprised award winning actor/actress role.

No matter what your reaction is and no matter how long it takes a secret to revel itself, there is always a sense of relief. Relief that it’s out in the open. Relief that now it can be dealt with head on so we can put it behind us and move forward. Just relief. It is at the very moment, in which we share that first sense of relief that the healing process begins. And I vowed to help her breathe.

Yo, Adrian!

PUBLISHER FOUND!!!

Yo, Adrian!

Sly Stallone I ain't, but like Rocky before me, there I was today at the top of the steps of the Philadelphia Museum of Art, arms raised (someone's arms, anyway) in triumph at the fact that two years after beginning the project of a lifetime, I officially signed an agreement with Little Treasure Books to publish my memoir, Worth the Ride: My Journey with Duchenne Muscular Dystrophy.

It has been a long road, with long hours, moments of self-doubt, and several bouts of writer's block, but with a tentative publication date of February, 2008, we're nearly there.

There are so many people who deserve credit for making this moment possible that I could practically write another book. To my friends, family, nurses, doctors, advisers, and to Winheld's World readers near and far, thank you for your support. I could not have done this without you. And to everyone out there who has ever been touched by DMD, our experiences may not be exactly the same, but this is your book, too. Together, we will create awareness of this disease, so that someday soon, a cure will be found and no family will ever have face it again.

Please continue to visit Winheld's World for all the latest updates...

Proceeds from book sales will go to Parent Project Muscular Dystrophy, which works "to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD) through research, advocacy, education and compassion."

My Childhood Dream Is Finally Coming True

I just wanted to thank everyone who had e-mailed me after reading my post from 10/27/07 - 20 Years Later & I Still Want Him Sooo Bad! I was surprised and rather touched to discover that even total strangers wanted to make my childhood dream become a reality. I received many helpful tips and links from people trying to help me locate a vintage 1986 My Pet Monster from Amtoy/American Greetings. The search wasn’t always easy, but I was diligent in my quest to find the most perfect My Pet Monster that could be had. Today I can say, mission accomplished - My Pet Monster is on his way!

Actual photo used in eBay acution. Notice his tip-top condition!

It may have taken 20 years, but my childhood dream is finally coming true! My very own Pet Monster will be arriving at my doorstep any day now and I can hardly wait, seriously. I feel like a kid on Christmas morning. I very well may clap my hands and march around my living room singing “Happy, Happy, Joy, Joy” once I lay eyes on that big brown shipping box and allow my fingertips to graze the dirty cardboard fibers. My imagination may be getting the best of me, but I picture him breaking out of the box on his own!

I wanted to find one that hadn’t been previously “loved”, NIB (New In Box), but I soon realized how rare those are. They are basically impossible to find! So I settled on a near mint condition one I found on eBay from the UK. I had to convert pounds to dollars, but it was worth it. The auction had barely begun, just 1 hour in, before I snagged up this guy. And if you want to know if he will sleep with me the first night, the answer is probably yes. After that though, he will most likely go up on a pedestal (AKA, top book shelf) in my home office to admire in aww. The way I see it, he’s almost God-like…or at least that is how I saw him as a kid. And let's face it, I'm still a kid at heart even today, so he still holds that God-like status to me.

I’m not sure if he talks, he should and I’m hoping he does. If he doesn’t, it would be a letdown, but regardless he will still retain his awesomeness! I do know that he comes with his original breakaway orange handcuffs. Gotta have the chains and cuffs! It’s his best feature. Besides, how else do you keep a monster under control?

Bigfoot Spotted Where I Go Camping!

Legend has it that he's large, hairy and hard to find. No, I’m not talking about your dream date. I’m talking about the one and only Bigfoot! According to one Pennsylvania hunter, Bigfoot is out there…and he has the pictures to prove it! He claims he spotted Bigfoot 115 miles north of the city of Pittsburgh. (Which makes me wonder, think Bigfoot is a Steelers fan?) Rick Jacobs believes he has captured photos of Bigfoot. He saw the creature from a tree stand in the Allegheny National Forest. Jacobs was hoping to get shots of deer, but this is what he saw instead.

Take a closer look. Click to enlarge photos.

Personally, I’m having trouble making heads or tails out of it. Seriously, am I looking at his ass in the one photo or is that his face? It looks like he’s attempting a headstand, either that or he’s super butt-ugly! I’m never really sure if it’s “of Bigfoot” or “a Bigfoot”. Is there just one Bigfoot or are there several Bigfoots? And wouldn’t the proper term be Bigfeet, plural for Bigfoot? I don’t know. There probably aren’t any at all so this is a useless argument.

Although, to many, this is a hot topic and experts are weighing in. Is it or isn’t it Bigfoot? According to the Bigfoot Research Organization, the picture could be a juvenile Sasquatch. However, the Pennsylvania Game Commission says they're pretty sure it's just a bear with a bad case of mange. As the debate continues as to what the animal is, Jacobs said he can't release the exact location of his potential find because the Bigfoot organization is worried people will destroy the animal's habitat. Or maybe find out the hunter is full of complete shit?

I say whatever it is, I bet it smells really bad! And I don’t care to see or smell him when I’m roasting weenies and making Smores over my campfire. So how about taking a hike, you mangy whatever you are.

What do you think? Is it or isn’t it Bigfoot? And does a real Bigfoot even exist?

Scary Vagina

I take pride in the amount of creativity I put into my Halloween costumes. I think one of my most memorable costumes ideas was in college when I gathered my fraternity brothers together and we dressed up like a box of Multi Pack Tampax Tampons. Depending on each guy’s body type, he was assigned to portray a specific Tampon – light, regular and heavy flow. I was mid cycle, regular absorbency. Our bodies were tightly wrapped in a white foam/cotton-like material, complete with the cord on our head. We then segregated the light, regular and heavy flow tampons by sectioning ourselves off in a makshift Tampax box constructed out of giant cardboard walls. There we stood on the front lawn of our fraternity house. We would yell obscenities and insults at those who passed by to simulate the feeling of PMS. It felt kind of good to act like a bitch and use PMS as an excuse.

Watching a heavy flow tampon do a keg stand remains as one of my fondest college memories. Now I don’t know about blood, but I can attest to the fact that tampons absorb Yuengling beer surpringly well! That year we took home first prize, “Best Costume”, in the annual Halloween campus parade. I’m relieved to say it’s not my most noteworthy college achievement, but it does rank right up there in terms of pride.

Besides playing the role of a bitch, I also played the role of a dickhead (I’m sure I’ve played the role of a “dickhead” on other days besides Oct 31, but you get the idea). One year a friend of mine and I decided to dress as a pussy and dick. Since I was taller than him, I opted to go as the dick, because we all know a big dick is better than a little dick, right? However, never did I seem to put the two Halloween costume ideas together like this guy (see above photo) did and pull off one the most offensive/humorous costumes I’ve seen in a long time. You can’t really see it from the photo, but he was in desperate need of a bikini wax! And just for the record, that vagina scares me!

This year, I had little time to put together a good Halloween party costume. So I went as a pimp and my date was my ho. I must say “my kinda sorta not really girlfriend” makes one smoking hot ho! We considered doing role reversal, me being the ho and her being the pimp, but not even my arm could fit into her miniskirt. Besides, I just don’t have the legs for it.

Now my niece is only 3-years-old and I can’t show up to surprise her dressed as a pimp, so I went as a dust bunny. I put on pink bunny ears and stuck dryer lint to my clothes = dust bunny. Of course, it would have helped if she actually knew what a dust bunny was. Oh well, Halloween was fun regardless.

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Go Hard Or Go Home

What’s up with kids nowadays? They have no game. They bring the weak shit. Listen up punks, it's called Trick-Or-Treat for a reason. When you say “Trick-Or-Treat” you are supposed to mean it. Put a little bass in your voice, say it with authority. Ok, maybe I’m being a bit harsh because let’s be honest…your balls haven’t dropped yet. Puberty has yet to occur so physically you may not be able to turn up the bass and give me your best Darth Vader impression. However, it doesn’t really matter if your voice still sounds like Mickey Mouse or you are on the verge of becoming a Peter Brady. In this case it’s not really how you say it, but rather what you say. When you utter the words “Trick-Or-Treat” you are supposed to know what it means. Essentially you are giving me, the candy giver, an ultimatum. Trick or treat – the candy giver must choose.

So I choose. I choose “Trick”. And what do you do? You freeze because you aren’t prepared for that! You just assume that I will hand over the candy like every other sucker/neighbor did before me. I basically threw you a curveball and you were in no way prepared to hit it out of the park. Shame on you. Where’s your creativity? Where’s your evil Halloween spirit? Where’s the fun? Now I know you revel in delight when you’re shoving your greedy little hands into Mrs. Shoeman’s giant candy bowl. I’m sure you took more than your fair share of chocolate, which is basically robbing the little old lady blind. Seriously, the little old woman really is blind! Blind like a bat I tell you.

The only thing worse than robbing an old blind woman is taking candy from a baby! Oops, wait, I almost forgot. You did that too! Yes, I saw you literally rip a cherry BlowPop out of the chubby grips of your baby brother’s mitts. Don’t pretend like you don’t know what I’m talking about. He was holding the lollipop like a rattle for Christ sake! The kid sits around in soiled drawers all day and you can’t allow him the simple joy of holding a makeshift rattle? I hope one day he grows up and piledrives you. Payback is a bitch!

Now before anyone scolds me for being mean to a child, let me just say, you don’t know this kid. To protect his identity I’m going to call him (Jacob) “Junior”. I could go thru a long list of things that make “Junior” a spoiled, selfish, inconsiderate little asshole of a 10-year-old, but I’m not going to do that. I will say that his smug Daddy had to roll him around in the Range Rover because apparently a little exercise is too much to ask of "Junior". And just between you and me, little "Junior" could use a lot more exercise than just a stroll thru the neighborhood. The last thing chubs needs is to be chauffeured from house to house collecting a pillowcase full of fat and calories. Even Mrs. Shoeman walks the neighborhood, blind and with a cane! And she’s like 150! Did I mention “Junior” usually doesn’t even wear a costume? What the f…

With his pompous Papa sipping his Starbucks coffee and looking on from the comfort of his Range, I had to resort to giving the kid a treat since he stared blankly at me when I answered “Trick”. So I gave him what he deserved, an empty Take5 bar wrapper that I had eaten minutes before. Mean? Maybe. Deserving? Definitely! Hey, the kid is dumb too, he didn’t even notice. At least it was lighter to carry than if I had dropped a rock in his bag.

What’s really sad is that last year, even with the help of his cousin, he couldn’t pull a trick off. They went with the flaming bag of poo. One word – WEAK. It’s weak shit, figuratively and literally speaking. Do they think I was born yesterday? The two dummies do it with me standing 10 feet away, watching. They didn’t’ even ring the bell and hide. So once the bag of poo was on fire, I yelled “oh shit” and kicked it back to them. At that point "Junior The Genius" freaks and stomps it out, himself! The phrase “wise beyond your years” will never be applied to that kid.

Trick or Treat!

Trick or Treat!

Happy Halloween, everyone! Check out the picture of me and my sister, Amy, from Halloween way back in 1985, when I was seven years old. That year, our mother decided that we would not wear store-bought costumes and ordered the pattern for the Crayola Crayon costumes. I'd say they turned out pretty well!

Obviously, the photo is from my pre-wheelchair days. Unless you saw me walking, there wasn't a whole lot separating me from other children that age. It saddens me to know that today, there are still 7-year-old boys with missing teeth, who will eventually need motorized wheelchairs and all of the other things (tracheostomies, ventilators, feeding tubes, etc.) that I need to live. Fortunately, such technology exists. But wouldn't it be great if all of those little boys could grow up and never need any of that stuff? For their sake, I hope that day arrives soon.

A Pat on the Back

A Pat on the Back

Congratulations go out to loyal Winheld's World reader and my friend Pat Moeschen, who was recently named Wal-Mart's 2007 New Hampshire Teacher of the Year.

I first met Pat, who has Becker muscular dystrophy (which is closely related to Duchenne's), at the Parent Project Muscular Dystrophy conference a few months ago and was impressed with his positive energy and can-do attitude. No doubt these qualities are what make Pat so successful as a band teacher at the Woodbury School in Salem, New Hampshire, where he teaches sixth through eighth grades. For most of us, those years are often very difficult. I'm sure his students, past and present, will attest to the fact that a teacher like Pat can make all the difference. As someone with a disability, I know that every day presents its challenges. My hat goes off to Pat for facing those challenges head on and with great success.

Congratulations, my friend!

20 Years Later & I Still Want Him Sooo Bad!

Words cannot do it justice. Jaw dropping. Drool dripping. Bulgy eye staring. Ewwing and ahhing. Piss my pants with excitement. So ecstatic over just thinking about it, that my cheeks actually hurt from smiling so much. I would sleep, eat and breathe it. I would toss and turn at night fantasizing what it would be like just to hold it in my arms. Hoping, praying that when I did finally fall asleep, I would dream about it. Tight sweaty little fists shaking in excitement every year when my birthday arrived, anticipation that the dream would become a reality. Surely, this would be the year. The year my laid back nature would get thrown out the window. I would explode into boisterous clapping coupled with lavish laughter and jumping up and down. Throw in a few “YES, YES, YES” and “OH MY GOD” screams and that would be the best way I can described it if I had to put it into words. Simply said, it consumed every square inch of me with unbridled desire.

There he is, the object of desire, My Pet Monster. Standing at 26 inches tall, he’s beyond awesome! Squeeze his hand and he says the following phrases:

• "I'll Protect You!"
• "I Am Your Monster Friend!"
• "I'm Really Strong!"
• "Let’s Wrestle!"
• "Ooh You're Really Strong Too!"

He even has breakaway orange cuffs that make a “crash” sound when you pull them apart! Just typing that gets me excited. I’m not even joking when I say I’m seriously pumped right now and want him sooo bad! Crazy, I know. He was introduced in the mid 80s and ever since then, I’ve been in love. Not in a sexual way of course, but you know what I mean. The thing is, I never got to fully experience that love. I never got My Pet Monster. (Key the violin music and pass me a hanky.)

I think a part of me now understands my private (and now public) obsession with My Pet Monster. I think the reason I was so drawn to him and so taken back with grief when my Mom told me “No, no more toys, David” is because he wasn’t just a toy. And I know I had said those exact same words to my Mom as I tried my darnest to plead my case to the jury of one. Still, the jury didn’t see it my way. I remember standing there in the toy section of the David Weis department store crying as if my heart had been ripped out of my chest and run over by a steamroller, twice.

I couldn’t hold back the waterfall that was about to breakthrough and let loose. Salty tears poured from sad blue eyes which then begun streaming down a pair of soft round cheeks. Despite having long almost Maybelline-like lashes, I couldn’t bat away the cloudy world I now found myself looking out into. Rain showers were in my forecast, at least for the remaining part of the day, if not week, if not lifetime! So it was up to my hooded sweatshirt to bring back the sun, to dry the "rain". The cotton/poly blend could only absorb so much before the sleeve became soggy from wiping my face into a beautiful red mess. It wasn’t long after that the hiccups gave way and I was chocking on my own sweet mixture of tears, snot and saliva.

Naturally, it was hard to breathe as my Mom escorted me out of the store. I drug my feet thru the mall as we set out to “go get what we came for” – I hated when she said that. It seemed like a cruel game to me. I can’t get what I want, but Mom will pick up Dad that cordless drill at Sears that HE wants. And that drill is waaay more money! My Pet Monster is only about 30 bucks and Dad’s stupid drill is like 30 trillion dollars…or so I argued. At that moment, I represented the thoughts and feelings of every My Pet Monster deprived child in America. Heartbroken, bitter and jaded. It was official…being a kid sucked!

Kids grow up and get over things, right? Wrong! I may be all grown up, but I’m in no way over my childhood lose - losing out on getting that toy. I know it sounds ridiculous and maybe there is something wrong with me to pine this long over a silly stuffed doll. However, he represented something more than that to me. His outer shell had you believe he was this tough rebellious ugly outcast, but deep inside, he had a soft understanding warm core that just wanted to fit in and be loved. As a kid growing up, My Pet Monster represented me. I could relate to who he was, or rather who the American Greetings toy manufacturer created him to be. Getting My Pet Monster today would be like recapturing a part of my childhood that I feel I missed out on. It’s fulfilling that lifelong dream of owning my very own pet monster. What could be cooler than having a monster for a pet? (Don’t answer that, it’s not a rhetorical question.)

Today, 20 years later, I can honestly say I still want My Pet Monster just as bad now as I did back then. Now granted I won’t throw a full fledge hissy fit if I don’t get one, nor would I bawl my eyes out like a little girl. However, I may find myself getting a little choked up and maybe just a teanie bit misty eyed if someone were to actually find me a vintage My Pet Monster, brand new and still in the box! I almost bought one on eBay, but I decided to hold off becacuse tomorrow marks my birthday and well...

Do you think it's possible? I mean, could you imagine? Oh. My. God. Without a doubt, I would be the happiest boy alive!

In Case of Fire

In Case of Fire

Under normal circumstances, today's world is pretty accessible for those of us with disabilities. But in a natural disaster or even just a really bad storm, all bets are off.

As I was watching coverage of the California wildfires yesterday, I saw an interview with a sign-language interpreter talking about the difficulty in making the deaf community aware of evacuations in the area. I got to thinking about what would happen to someone like me in the event of an emergency like that. It's similar to my feelings when I watched on TV, as the Hurricane Katrina disaster unfolded. In all honesty, it was clear to me that there's a good chance that I probably would not have survived.

I shudder with fear every time a huge snowstorm is predicted. In the event of a power failure, I cannot power my ventilator and I can't charge its back-up batteries. We do have a gas-powered generator, but in a prolonged power outage, what would happen when we ran out of fuel? The obvious answer is to throw all of my supplies in my van and drive to the nearest medical center. But what if roads are impassable? Or what if I couldn't even get out of my house, as in the case of a big snowstorm? You can try calling 911, but are they going to be able to rescue you when there's three feet of snow on the ground? Take me out of my wheelchair and I'm bedridden. And consider this -- I live with my family. What if I lived alone and depended on people to get me out of bed in the morning? Firefighters could knock on my door all day, but I wouldn't be able to get to the front door to alert them of my situation.

Natural disasters like the fires raging in California are difficult enough for people without disabilities. Having a disability is just an added challenge. However, in every tragedy, it seems that you can almost always count on the kindness of strangers. You read about it all the time when things like this happen. Without such assistance, people with disabilities, who might ordinarily be quite independent, may be less likely than other people to get through such a tragedy.

If anyone out there with a disability has survived a natural disaster, please feel free to share your story...

A Captive Audience

A Captive Audience

Oddly enough, when I talk, people actually listen to me. Well, unless I'm at the dinner table with my family! Today, I addressed a group of pulmonary nurses at Children's Hospital of Philadelphia (CHOP). Drawing upon my experiences as both a teenager and an adult, I talked about what it's like for someone like me to be hospitalized.

For example, at home, my environment has been adapted to my needs. In the hospital, there's not much that I can do for myself. I can't change the channel on the TV. I can't read anything because I can't hold a book or turn its pages. I can't feed myself. I feel bad asking the nurses for help with these things because I'm not their only patient and they have more important things to do than to find me something interesting to watch on TV.

Help using the bathroom isn't something I have a problem asking for, but there's nothing like having a full bladder and you have to wait for the nurse to arrive. As a result, I would drink as little as possible. However, eight hours later, they would want to catherize me because I had not urinated!

Even calling the nurse is an issue because I cannot physically push the nurse call button. At CHOP, they now have sip-and-puff devices that allow you to trigger the nurse call systems with your breath, so that does help -- unless, of course, the device slips out of the range of your mouth.

One of the nurses brought up the issue of positioning. For many of us, it can take a lot of time to get comfortable in bed. I know that I often need my head moved several times. The pillows supporting my legs need to be placed in exact position. It can be very frustrating for caregivers.

"But trust me," I told them, "We find it just as frustrating as you do!"

On the subject of positioning, I also talked about the fear that people like I have of being moved by nurses because many of us have contracted arms and legs. It's not just that my legs are locked in place; it hurts when they are moved too much. One wrong move and I could be injured.

But I think that the biggest message that I tried to get across was that when you are in the hospital, you tend to act differently than you would at home. I explained how I became a lot more emotional when I was in the hospital for two months. Things that ordinarily would not have bothered me did just that. I only wished the nurses and doctors could have known me outside of the hospital because they would have liked me!

During that hospitalization, I was an adult. So if it was bad for me then, just imagine what it's like for a child. One of my most vivid memories from my hospitalization at age 15, following spinal fusion surgery (other than being in pain), was one of the nurses wanting to give me a bath. I felt awful and the last thing I wanted to do was get washed. All I wanted was to be left alone and I was less than pleasant to deal with. At that moment, whether I smelled badly was hardly the first thing on my mind.

Not a fun experience, to say the least. Let's just say that I was much more pleasant today -- and I smelled a whole lot better, too!