At a Spring Training game a few weeks ago, my nurse James and I settled into the disabled seating area to enjoy a relaxing afternoon. A non-disabled older man, seated to our immediate right with his scooter dependent wife next to him, initiated some friendly banter with James. After all, you would expect an exchange of pleasantries with the person you’ll be shoulder-to-shoulder with for the next nine innings, right? Well, it started with an introduction, followed by the usual remarks about the weather and a little miscellaneous chitchat. But once he identified James as a nurse, the guy turned into one obnoxiously inquisitive individual, and hit him with a barrage of questions about yours truly.

What is wrong with him? What type of medical care does he require? Does he live with his family or is he in a nursing home? Does he watch television all day or does he work? Is he on Medicare? Does his wheelchair go really fast?

When you have been in the disability game for as long as I have, you expect this to happen and simply nod or answer vaguely and politely. You know that these people really mean no harm, so you often just go with it. But just when I thought that I had heard everything over the years, the next question was posed:

Can he get on the john by himself?

I about aspirated my lemonade on that one! The old dude already got that James was my nurse, that I required total care, that I was reliant upon a ventilator, had an ICD in my chest, and can hardly move a muscle. And now he was inquiring about my personal toileting abilities??? Come on! I’m thinking: Look at me, you numbskull! Do I look like I can get on the freaking toilet by myself or much less wipe my own ass! Duh!

I cannot believe the nerve of some folks! Asking about a complete stranger’s bathroom business? Are you serious? Next time I’m going to forego wearing my Yankees jersey in favor a T-shirt reading, “Got hemorrhoids?”

I took this shot of my good friend and fellow shutterbug, Matt Schneider, on one of our photo shoots together. Matt lost his life to Duchenne muscular dystrophy last week, and his passing has left me with a serious void inside.

As a snowbird from Ohio, he spent the past few winters in Florida and we got together every year to hang out, fire our cameras at will, and argue over which was better – his Canon, or my Nikon. We were just two pals with DSLR’s mounted to our power wheelchairs, turning heads and catching stares. But we didn’t care. We were just doing what we enjoyed and to hell with everyone else! Matt was a great chum, and a damned good photographer to boot!

I was fortunate enough to see him one final time in February. My nurse and I traveled over three long hours by van to visit him down in Naples, and I had the chance to watch him in action snapping pictures. Matt recently had laser surgery for kidney stones, yet still insisted that I come spend time with him. I noticed how exhausted he was that day, but I sure had to hand it to him for being a trooper.

Matt flew back to Ohio a few days later, and suffered a series of additional medical complications over a short period of time, which ultimately forced his already fragile heart to quit. He went peacefully – and fittingly – at home in his mother’s tender arms.

I will always remember Matt behind the camera with that sly smirk on his unshaven face. I can’t believe that he is gone, but if I know Matt, he is out shooting pictures somewhere!

In the late innings of the Yankee game in Tampa yesterday, I suffered a sudden and complete lapse of optimism. Duchenne muscular dystrophy had infiltrated my brain and made me a downer. Negativity took me over, and I began to think and dwell and wonder whether or not I will be alive in a year from now. Was this my final Spring Training? Could this be my last visit to Steinbrenner Field? Would I ever see Derek Jeter in-person again? I was struck by an overwhelming sense of melancholy, and my spirit took a punch. When you’re 44 with Duchenne and the clock is ticking in double-time, the question of your own mortality can sometimes hit you extra hard.

I felt an indescribable desire to study my surroundings and began to absorb all of the sights and sounds of the stadium like never before. I paid more attention to the game in progress, the annoying shouts of beer vendors, the advertisements adorning the outfield wall, the cheers and taunts of my fellow fans, the layout of the scoreboard, and the grass, dirt and remaining chalk lines on the field. Funny how you appreciate things more when you imagine what life would be like without them.

On my way out of the stadium, I turned back to soak in the place. Then I approached the right side of the small, roped-off area with replicas of the retired uniform number plaques – like those found in Yankee Stadium in New York – for one potential last look. I passed by the numbers of Reggie Jackson, Ron Guidry, Yogi Berra, Bill Dickey, Casey Stengel, and my all-time favorite Yankee, Don Mattingly. Finally, I came to the legendary Lou Gehrig. Here was a great man and ballplayer who lost his life many years ago to Amyotrophic lateral sclerosis (ALS), another merciless neuromuscular disease. Gehrig fought his battle hard, with grace and dignity, yet he still went down. Unfair. Frustrating. Disheartening. Obviously, this relates to those of us with Duchenne. And whenever one of us succumbs to this disease, I take it personally. I get my dander up. I get outright pissed!

Thoughts of Lou Gehrig instantly turned my melancholy into anger, and snapped me right out of the doldrums. Inside, I was screaming: This is not me! I’m no downer! Duchenne doesn’t rule my mind! Enough of this shit! Of course, I’ll be around in a year from now! Hell yeah, I will enjoy another Spring Training! See you again, Jeter!

I had a little mind blip, but now Scotty Dawg is back. This existence is far from over, folks, and I’ll even guarantee that Duchenne will never get into my head again!

Recently, I went over to the box office at the spiffy new Amway Center to purchase two tickets to an upcoming Orlando Magic basketball game. There, my nurse spoke with the head of security and we were treated to an impromptu sneak preview of the place! We wanted to see the inside of this amazing facility for ourselves. We wanted to see where we would be sitting during the actual game. We wanted to know our proximity to the paramedic station in case of emergency. We wanted to make sure that the bathrooms were large enough and private. And I wanted to do my own inspection of Amway for safety, wheelchair accessibility and compliance with the Americans with Disabilities Act or ADA. I was not doing this solely for personal interests, but I was also looking out for others in similar circumstances.

A member of the Amway Center staff was kind enough to escort us on the grand tour. We rode the extra larger elevator – one that could accommodate at least six wheelchairs – up to the spacious main concourse, then down one level to a rather secluded disabled seating area. It was sort of like a little V.I.P. box, sans the V.I.P. amenities. However, from a disabled guest’s standpoint, I did notice a few alternative perks of my own. The section was perched above the regular seating area, so I will no longer have to endure fellow spectators standing and blocking my view during pre-game player introductions, great plays and buzzer-beaters. Now I can finally enjoy the very same unobstructed view, a view for which I invested the same money. Plus, a rear wall now protects me, so no one will be able to crowd behind me throughout games or concerts. I will no longer be in constant fear of some careless idiot spilling beer on my ventilator, or even worse, bumping into me and knocking loose the tubing that runs between my trachea and ventilator! I have certainly had a fair share of these hazardous mishaps over the years, so it is comforting to know that unless somebody hurls a mustard-slathered hotdog at my head from the upper deck, I will be relatively safe. There is even an electrical outlet on the floor beside my spot where my nurse can plug in the ventilator if the battery runs low, or my electric blanket if the air conditioning gets to be too much.

As we made our way down the long ramp from the disabled seating section, we passed two somewhat enormous special needs bathrooms. I immediately darted into one and did a full 360 with ease! Again, we rode the big elevator back up to the main concourse and continued the tour. I took notice of this wide hallway, which would offer me tons of room to roam. This means no more plowing blindly through a sea of bodies and running into butts and over feet to leave the building after the event! On the way to the main elevator, our escort pointed out a large concession/bar area with a few lower countertops and tables for guests in wheelchairs. My only disappointment was with the signage that is supposed to direct folks to the primary paramedic station. There was a single, good-sized sign set flush on the facing above the doorway. It was quite difficult to spot since it did not extend out from the wall for obvious view.

Overall, the difference between the old arena and the brand new Amway Center, as far as safety and ADA compliance goes, is astounding! The designers of this place included practically everything per law to accommodate disabled guests, and they should be commended for their efforts. Next week’s Magic game will be my very first event there, and I can’t wait to see compliance in action!

I was going to write and publish this post yesterday, but my brain was far from cooperating. Strange how difficult it is to write when your mind is preoccupied with the potential for being electrocuted by a little metal time-bomb inside your chest! Here’s the scoop…

Yesterday was my quarterly visit to the Orlando Heart Center for a device check. This is when my Implantable Cardioverter Defibrillator (ICD) gets tested to see it is functioning properly and spews out a three-month log of my cardiac activity. And next on the afternoon docket was a follow-up with my electrophysiologist, Dr. Roland Filart, a cardiologist who specializes in arrhythmias. He read the printed report and told me that the ICD checked out just fine. He also noted that the device recorded four episodes of life-threatening ventricular tachycardia – or deadly rhythms as he called them – in the past three months. Now, I am not a big fan of the word deadly, especially when it pertains to me. I mean, deadly doesn’t exactly instill confidence in a person. I would much rather hear funky or iffy or even wacky when referring to my ticker. That would kind of take the edge off, you know? But since Dr. Filart is a straightforward type of guy who pulls no punches, deadly was the best way for him to define my heart’s funky rhythm. My heart rate had raced four times at speeds between 170 and 225 beats per minute, but lasted only about six seconds each time. I asked the doctor why I didn’t get zapped by the defibrillator when it is set to fire whenever my heart rate hits 180 beats or higher. Well, he said that the device would not go off unless an episode lasts for about fifteen seconds. Do the math – fifteen minus six is nine. Therefore, nine measly seconds separated yours truly from getting shocked senseless! I was only nine measly seconds away from finding out if the defibrillator would actually save my life!

It is quite unnerving to know exactly how close I might have come to meeting my maker. Like all artificial or computerized devices, an ICD is man-made, susceptible to potential failure and doesn’t necessarily guarantee anything. You see, if the ICD fires and does jolt my heart back into a safer rhythm, I may still get a crack at survival. If not, I’m a dead man. I believe that odds are supposed to be beaten, and I have done it over and over throughout my lifetime, but I need to be realistic. I’m hanging by a thread now, so I would prefer not to think about my fate.

Considering the obvious severity of my condition, Dr. Filart said he was pleased with the results and told me not to worry. As part of my own personal Magi, he has helped to prolong my life once before, so I trust him to the hilt. But how could I not worry? When you are just nine seconds away from craziness and intense pain, you worry. And panic! I remember author and friend with Duchenne muscular dystrophy, Josh Winheld, telling me a few months prior to his unfortunate passing about how frightened he was when his defibrillator fired several times in a row. So after my own surgery, Josh, offered this sound advice: “Dude, don’t get shocked!” Well, I don’t want to get shocked, and like the next guy, I certainly don’t want to die! I typically block these things out of my mind, but although the doctor was relatively pleased, I wasn’t! Nine seconds surely messed with my head, leaving me with a few extra doubts about my mortality. I know that it is only a matter of time before the ICD must fire and pummel my insides, and I don’t think I will ever be truly ready for it. I am also not ready to see if the device will indeed keep me alive. Heck, I ain’t that strong!

Yesterday served as yet another cruel reminder of how DMD has mercilessly ravaged my heart and numbered my days. Guess I should just be glad I have the ICD to give me a fighting chance against this bastard of a disease. Still, nine seconds is definitely way too close for comfort!

As usual, I shall refrain from watching the Jerry Lewis MDA Telethon on Labor Day. I refuse to sit here rolling my eyes at the drama and lame entertainment. I refuse to sit here laughing my crippled ass off while the suckers…I mean, other viewers at home are crying their eyes out and forking over the cash. Do I think the whole thing is a sham? Of course not! Muscular dystrophy is definitely a killer. It is real and hard and heartbreaking. Now, do I disagree with some of the methods being used to elicit contributions? Yes! But am I going to get angry and berate the system again this year? Not really…simply because I am removing myself from the situation. I don’t need the stress.

Let Jerry Lewis put on his little show. Let him yank out heartstrings and prey upon emotion. Let him dupe the public into believing that his Muscular Dystrophy Association provides his Kids with way more than just research. Let him make promises he knows he may never be able to keep. Let him sacrifice the dignity of muscular dystrophy patients everywhere. Let the man do all that he does so well. Jerry’s sole purpose is to get the money, so let him play!

I’m one of Jerry’s Atrics, a muscular dystrophy old-timer. I’m wise to his shtick. I know his game. But there is nothing I can do to stop him, nothing I can do to influence the MDA or Telethon reform, so why waste my life trying? The Muscular Dystrophy Association will continue to care more about research than helping to improve quality of life. A free flu shot is no substitute for chipping in a few bucks towards a new wheelchair. And the annual Labor Day fundraising show will continue to go on just the way it has been long after I am dead and long after Jerry Lewis kicks the old donation bucket or fireman’s boot or whatever, or until a cure is found. Yeah, a cure – that’s the ticket!

Honestly, I would love nothing better than to see Jerry raise a billion trillion gazillion dollars for the MDA and his Kids. However, I am not going to waste what precious time I have left watching him stoop to new lows in order to do it. I have to focus on living now anyway, and not worry so much about Jerry Lewis’ quest for a cure that may never come. Let Jerry’s Kids have the money. I don’t need it because I am one of Uncle Sam’s Kids now, and he takes really good care of me!

The Telethon isn’t for us Atrics anymore, and neither is Jerry Lewis, and I can accept that fact. While I certainly wish the best for the younger generations and wish to see more beneficial treatments and ultimately a cure for the disease we all share, I still refuse to watch the show. I’m tired. I’m bored. I’m over it.