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?”

No, I am not about to perform brain surgery. I am simply protecting myself from the recent outbreak of the deadly swine flu. Hey, the media is hyping the heck out of this so it must be extremely serious, right? After all, the media is always on target! My local television news reporter would never exaggerate, so when he told me to take every precaution possible to avoid catching this swine flu, I gladly obliged. I put on my official swine flu gear, and now I am totally safe! So come and get me, you swine – I’m ready for you!

I could go on and bore you with some inane details of my recent cruise vacation, but I shall refrain. After all, what is there to tell about a cruise? You’re on a gigantic ship surrounded by a seemingly endless expanse of choppy ocean. You eat, bask in the sun, gamble a little at the casino, eat again, and take-in a few cheesy shows. You sip on a couple of cold, tropical, alcoholic drinks, sleep, take a dip in the pool if you wish, and eat some more. You get off the ship to shop at one or two ports of call or to go snorkeling or to see the sights for several hours. There is really not a whole lot about a cruise that would make for an exciting tale. Heck, I can’t even dwell on swimming or snorkeling since I am unable to do either. However, I will let you in on something harrowing that happened to me while ashore in Cozumel, Mexico. Since shopping in the port there is rather limited, my nurses, my best friend Jimmy, his caregiver and I decided to look for wheelchair accessible transportation into town where we could do some serious shopping. We checked with a guy at the small taxi stand in port and were informed that two accessible vehicles were indeed available for a relatively modest fee. I was very surprised that these actually existed down in Mexico of all places. To be honest, I was expecting something in the form of a dilapidated mule-drawn buggy with a small, wooden, shabbily constructed ramped platform attached to the rear. I could just picture a group of a five short, stocky Mexicans in tattered clothing, dusty sandals and sombreros pushing my huge wheelchair up this steep incline and securing it atop the wobbly platform with worn out chicken wire. To my amazement though, two approximately fifteen year-old, full-sized vans with weathered but sturdy hydraulic wheelchair lifts pulled up to take us away! Jimmy sits very low in his wheelchair, so clearing the roof to enter the van was easy for him. But for me, getting into the other van was a nightmare. I had to tilt the seat of my wheelchair completely forward to try and clear the low roof of the van. One of my nurses was in front of me from inside the van pulling my head forward and to the right so that I might miss the door latch that hung down blocking my entry. Another nurse was directing me from behind while our driver was pushing on my head like a policeman ushering a cuffed criminal into the squad car. Suddenly I tapped on my joystick a bit too hard causing the wheelchair to jerk. Now my head was wedged into the top of the doorway. The slightest move forward and I would do serious damage to my head and neck! Go ahead and explain that one to my mother! “Um…Mrs. Sands…we, um, got your son’s neck broken in the doorway of a van in Mexico.” Yeah, somehow I don’t think that would go over too well. Fortunately, I was able to back my chair up just enough to free myself from this position. Not to give in, I had my nurse loosen my chest restraint and pull me forward even more. I finally made it into the van, and we were on our journey into downtown Cozumel. I probably would have been better off with the mule-drawn buggy! The voyage itself was just as scary, as you can tell by the expression on my face in the above photograph. For one thing, my wheelchair was not tied down inside the van, so every turn, speed bump and pothole rocked me silly. I even banged my head against the roof a few times! The road into town was dangerously narrow, and the van was surrounded by numerous taxis and assorted vehicles. This was far worse than being on the streets of New York City during rush hour! But we survived the drive and did our shopping. Many thanks to the brave and highly skilled driver, Jorge, for not getting us all killed in a major wreck! And much appreciation to my nurses for not allowing me to get myself paralyzed upon entry into the van! Part of this experience has inspired me to get a t-shirt with the inscription, I nearly became a quadriplegic in Cozumel, Mexico and all I got was this lousy t-shirt! Hey, do you think my mother would approve?

I came across something very interesting this morning while my nurse and I were cruising down the highway. We were headed for the New York Yankees Spring Training facility in Tampa, Florida to see my team play the Philadelphia Phillies when a giant van zoomed past us. It was a sheriff’s vehicle that had two blue handicapped symbols pasted on each of the back doors. Never before had I seen a wheelchair accessible paddywagon. I guess the Charlotte County Sheriff’s Department prides itself on being an equal-opportunity arrestor. We numerous wheelchair-using criminals can now be hauled off to jail after being taken into custody. It used to be that those of us in large, heavy wheelchairs were able to wreak illegal havoc without consequence simply because there was no accessible transportation to the big house. Apparently, that is no longer the case in Charlotte County. Their specially equipped vehicles have rendered us fair game. We can’t even run over little old ladies or shoplift by conveniently forgetting that we have grocery items on our laps as we casually roll out of the store. Justice will now be served to all folks in wheelchairs who commit even the slightest of crimes. No more free rides, just rides to prison in big vans driven by out-of-shape deputy sheriffs. The only possible way to avoid being caught by the cops in Charlotte County is by going on the lamb, but you won’t get too far traveling by wheelchair. So if you are in a wheelchair and wish to engage in any sort of criminal activity whatsoever, you would be wise to stay away from Charlotte County, Florida. The sheriff there means business!

Those of you who follow me on Facebook or Twitter may recall that I have been experiencing a little urinary problem (I know, I am shameless). It all began a week ago when I took my customary midnight pee. I felt a sharp pain down there, followed by an intense burning sensation and a bloody dribble. Too much information, huh? Friends were jokingly wondering if I had been involved with a “lady of the evening”. Sorry, that’s just not my style. Anyhow, I notified my doctor who ordered a blood test, urinalysis and culture. He also started me on antibiotics to get the drop on what he suspected to be a urinary tract infection. Well, my lab results returned a high white blood cell count – which indicated an obvious infection going on somewhere in my system – but zero growth in the culture. I remained on antibiotics, however, but my symptoms continued over the next few days and I began to worry. Pain and bloody pee is definitely not good. First, I thought that maybe a tiny fragment from one the three large stones embedded in my left kidney had broken free and was tearing at the lining of my urethra. Then another possibility crossed my mind. A history of prostate cancer in the family coupled with the fact that miscellaneous health problems often arise when you’re past the age of forty led me to freak! I called the doctor and told him that things were not improving. It was then that he uttered the dreaded “U” word; he recommended that I consult my urologist. Now, I am not a great fan of urologists for one simple reason – they are notorious for running tests where they force garden hoses through pinholes. In fact, I am sure they derive great pleasure from it too! However, I gave in and set up appointment to see the guy anyway just to play it safe. A few short hours later during my customary afternoon pee, a miracle occurred – no pain, no blood and only mild burning. I was suddenly improving! Apparently, the dreaded “U” word has magical healing powers.

Many readers of this blog have told me that I give them hope, inspiration and motivation. Well at one time or another, we all need someone to look to for hope, inspiration and motivation. My friend Tom Mecke from Texas has recently become that someone to me. Like me, Tom has Duchenne Muscular Dystrophy, but unlike me, he celebrated his 49th birthday today. If at 42, I am considered to be a rare specimen with this disease, then Tom is an even greater oddity. And on numerous occasions when I feel like my best days are behind me, that I am running on fumes, and fear that I might not wake up in the morning, I just think of Tom and I feel better. If he is still able to hold on despite DMD and get to 49 (and counting), then I may just have a shot at doing the same. I need guys like Tom to set the precedent for aging with DMD and give me a chance to look forward to staying around for a little while longer. Although the amount of life in someone with DMD can vary to a degree, it sure is nice to know that records are set every single day. Each year, each day, each second that we beat the odds is a true blessing and cause to celebrate.

Now a little story about breaking records…

About a year ago, I paid a visit to my dermatologist. I don’t remember why I needed to see him – maybe he had to pop a giant zit on my crippled, artificially ventilated ass or do something equally disgusting. Anyhow, Dr. Meisenheimer – nicknamed “Lucky” – is a quirky guy who still plays with yo-yos. He is a yo-yo historian and holds the Guinness World Record for the largest collection of yo-yos. Dr. Lucky came into the examination room and exclaimed with a triumphant fist in the air, “So you’re the world record holder!” I had a noticeably puzzled look on my face before he offered matter-of-factly, “You’re the oldest man alive with Duchenne Muscular Dystrophy.” I don’t know where he came up with this, but I guess that since growing old with DMD is quite uncommon, he simply made an assumption. Knowing that there are others with DMD who are older than I am, I began to laugh and responded, “Well, I’m don’t exactly hold the record, but I am definitely among those in the running!” With that, Dr. Lucky looked me square in the eye, smiled, raised his fist once again and replied, “Well, then it’s time to go for the record!” The dude was serious! However, Dr. Lucky failed to realize that in order for me to become the world record holder, all of the other men with DMD who are older than I would have to…ohhh, say…DIE! And that would be a bad thing.

Believe me, I am in no way interested in becoming the “World’s Oldest Living” anything. Besides, I don’t think that Tom is all too willing to give in and get out of my way. Now, the actual world record holder is out there somewhere and I have yet to locate him. He may even be reading this blog at this very moment while playing with his golden yo-yo. Anyway, I would like to wish him my most sincere best and assure him that I have absolutely no intention of going after his record. It belongs to him alone, and I don’t want it. I just hope that he will keep it indefinitely, and that I will always run behind. However, if some eccentric business tycoon ever gets it in his sick mind to offer me riches and a harem of hot chicks to become the oldest man alive with DMD, perhaps I will be forced to reconsider!