Although Jerry Lewis announced months ago that he would relinquish his tux and microphone and retire as host of the MDA Labor Day Telethon, I still expected him to make a final appearance on this year’s broadcast. I imagined Jerry would show up, thank everyone for decades of support, and exit gracefully. He said publicly that he would return for one last go around. He said he would be there to perform his signature exit song, ‘You’ll Never Walk Alone’. But apparently MDA would have nothing of it. Obviously, this was a forced retirement by the board members of the very organization that Jerry Lewis made famous. Jerry didn’t just retire as host. Jerry didn’t just step down as National Chairman. Jerry didn’t just pass the baton or hand over the reigns to the future of the cause. He wasn’t even given the opportunity! Unfortunately, Jerry Lewis was fired, axed, canned, handed his walking papers and shown the door. A lifetime of dedication and success, and he gets dumped and swept under the carpet? Sorry, but a man who devoted more than half of his life to a noble cause did not deserve to be phased out in such a cut-and-dry fashion. An American Institution like Lewis deserved a final bow, a curtain call, a swan song and a ride off into the proverbial sunset. But MDA didn’t even have the decency of putting him on stage for one last hurrah. That would have been the right thing to do, the absolute least they could do.

Years of faithful – and highly successful – service were encapsulated in some scripted gracious words and a little video tribute. No song. No grand exit. No bow. No wave good-bye.

Poor form, MDA, very poor form.

Yes, Jerry Lewis lost his relevance. Yes, the act became exhausted and Jerry got old. Change was inevitable, and MDA finally elected to sever ties. Of course, his retirement was actually about twenty years overdue. Yeah, it was time. It was time a long time ago! The folks at MDA knew it was time. Patients and families knew it was time. Donors and sponsors knew it was time. Even Jerry knew it was time. Still, MDA executives handled things badly by not allowing him back on the air for a finale.

Jerry put muscular dystrophy on the map and raised a ton of awareness and cash. Everybody knew Jerry Lewis as the celebrity force behind the Muscular Dystrophy Association. Jerry was totally cool then. He was a star, a member of the famed Rat Pack and hung out with Sinatra and Dean and Sammy. When the Telethon gig started in 1966, you couldn’t find a better person to host than Jerry Lewis. He was perfect for the job! He was a master showman, a movie actor and beloved comedian. And with his connections and network of well-known entertainer friends, he was a lock to rake in the big bucks! At one point, all Lewis had to do was simply ask for money to help his sick Kids, and he would get it, no questions asked. However, as the years passed and his spotlight dimmed, Jerry was forced to pull out every emotional ploy in the book to get people to dip into their wallets and give. I liken Jerry to an aging baseball pitcher whose fastball disappeared and then must rely on junk to get hitters out. His fastball was his star power and popularity and ability to infuse laughter into such a tragic and seemingly hopeless reality. “Smile though your heart is aching,” indeed. And it worked, and the money poured in. Then came the junk pitches. Pity rose to the forefront, eyes welled non-stop, asking became begging, laughter diminished and sadness and despair took over. Sure there was the entertainment and the humor and the shtick, but drama prevailed on the annual Labor Day Telethons, and the money continued to roll in. Jerry was the holder of heartstrings, the monarch of melodrama, the prince of pity, the wizard of wallets. And his efforts paid off. During his 45 years as host, he scored $1.66 billion for MDA and Jerry’s Kids, a magnificent achievement in itself.

Research still has not produced a cure, even after all these years and all of this loot, but hey, it’s not like you can just drive on over to the Terminal Disease Depot, go to the neuromuscular disease aisle, grab a cure off the rack, plunk down a few hundred million and take it home. If a cure ain’t there, it ain’t there. I get it. I dig it. I totally understand and I do not blame Jerry. My beef with Jerry Lewis was that he always promised what he could not possibly deliver – the elusive cure for muscular dystrophy – and with his do-whatever-it-takes fundraising mentality, he made those of us with the disease look needy and pathetic in the process. But as we know, it’s all about the drama and getting the money. And the show must go on somehow, right?

I decided to tune into the Telethon the other evening for two hours – probably longer than I have in the past twenty years combined – for mere nostalgia’s sake and to catch a final glimpse of Jerry Lewis in action, which never happened due to MDA’s lack of class. I was also curious to see for myself if things on the Telethon were indeed changing for the better without Lewis. Was this the end a stagnant era for MDA and perhaps the start of a fresh new one? Or should we expect much of the same old same old? Well, I did notice a tad less sobbing, but I guess that was because they could only cram so many tears into a shortened, 6-hour broadcast. And it wasn’t as pleady as usual, for the same reason I imagine. The entertainment seemed a little beyond tolerable this time, but do you seriously believe that people gave money because they got to watch Billy Ray Cyrus sing? Pity will always remain the key to bringing in the green, and MDA will continue with the do-whatever-it-takes tactic. That part will never change, Jerry or no Jerry. But even without Jerry, I somehow still gagged when two mediocre singers and a quartet of celebrity hosts pulled a painfully lame Salute To America out of their butts, complete with an infernal scat by Maureen McGovern, some marching, and red, white and blue confetti. This was MDA’s idea of a grand finale? Even Jerry couldn’t do anything that dumb in his day! Regardless, MDA managed a huge haul once again. Yes, MDA will score just fine without Jerry at the Telethon helm, but they are only building on the foundation that he laid eons ago.

Lewis was arguably the best campaigner and fundraiser the public world has ever seen, I’ll give him that for sure. I couldn’t stand his methods, but they sure were effective. I know that I have been tough on Jerry Lewis in the past, but I certainly will not deny the man his rightful props. Over a billion dollars raised. Dues paid. Purpose served. Legacy left. Forty-five years was quite the run. Thanks for everything, Jerry. Now let’s see MDA flex some muscle of its own.

My brother, Joseph, would have turned fifty-two years old today had Duchenne muscular dystrophy not gotten in the way back in 1974. He was a mere teenager then and didn’t stand a chance. Duchenne completely drained his body in just fifteen short, innocent years. It just seems terribly unfair that his life ended so quickly. So strange how this disease works. It can finish you off whenever it feels like, rendering age irrelevant. You can be a boy, a teenager or a man – Duchenne does not discriminate. It took him away from our family at fifteen, yet here I am going into my forty-fifth season. I know that this disease progresses at varying rates, but being from the same gene pool, I would think that there couldn’t be this wide of a survival gap between us. It amazes, frustrates, angers and depresses me all at the same time. Why did Duchenne finish Joseph off first, and spare me for so much longer? Why him and not me? What kind of reason could explain this? It is simply incomprehensible!

Although I was blessed to have had Joseph as a brother, and honored to fight in his memory, his birthday has come to represent stifled potential. Duchenne stole his future, and I will never get over that fact.

This has to be the coolest disabled parking sign ever! Fittingly, it was in the lot at a local tattoo and body piercing shop. Now, I am not condoning the defacement of public property, or smoking for that matter, but I found the sign to be rather neat in a grungy sort of way. What was I doing in the parking area of a tattoo joint in the first place? Well, that’s just none of your business!

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!

It is no secret that I have been in quite the funk lately, which is totally unlike me. Well, I suddenly realized that the only way to snap out of it was to do something I really enjoy. So, today I decided to toss my computer and negative thoughts aside and go snap some pictures! It has been a few months since I last took my trusty Nikon D90 out for a spin, but this was the perfect opportunity to get some shots and reverse my mood. I have always found peace behind a camera, as it places me in such a zone that all of my troubles fade into the shadows for a little while. Photography is my therapy, and today it certainly did the trick. I am back!

A small, baby blue envelope addressed to yours truly arrived in today’s mail. Now, I don’t always open my mail immediately; I figure that nothing is so important that cannot wait until later, unless it is a bill or pertains to anything medical. Since the envelope did not appear to contain anything official, I blew off opening it at that moment. About two hours had passed before I asked my nurse to open the little envelope. She removed a letter and unfolded it in front of me. Before even reading the letter, we both noticed that the words on the personal stationery were hand-written, apparently by the very individual whose name was embossed at the bottom of the page. This was the stunner of all stunners, and our jaws hit the floor! Does the name Carrie Underwood sound familiar to you? Yep, that Carrie Underwood, the former American Idol turned country music superstar herself! Yep, that Carrie Underwood, the Grammy Award winner and multi-platinum selling recording artist! Yep, that Carrie Underwood, America’s sweetheart who is adored by millions!

So, I bet you are wondering how little old me scored a personal letter from a big time celebrity. I bet you would love to know how I rate a note from Carrie freaking Underwood! Well, my pal Tom Junod, a writer for Esquire Magazine, interviewed Carrie recently and asked if she would drop me a line. Tom tried to get singer Faith Hill to call me on my birthday once to no avail. Fortunately, this time my man came through, as Carrie graciously obliged. She took the time from her hectic schedule to drop me a note. Wow! Now I bet you are dying to know precisely what a huge star like Carrie Underwood could possibly have said in this note. Well, here you go…

Scott,

- Carrie -

This was the ultimate thrill, a huge surprise, and something that really made me smile. Tom, thanks for being my friend. And thank you, Carrie Underwood, for reaching out to your new greatest fan!