My dear Uncle Frank had been battling a cancer that recently came out of remission and was stuck in the hospital for the past several weeks receiving treatment. Well, last week we were notified that my Uncle Frank did not respond to the chemotherapy and was given only a miniscule amount of time to live. My distraught mother got on an airplane headed for New York the next day with the hopes of seeing her younger brother one final time. She could hardly wait to hold his hand and smother him with parting hugs and kisses. Unfortunately, as she was racing to the hospital, the call came. Her beloved little brother had died. Mom was heartbroken, as she was just minutes away from her wish to see him alive once more. I, too, felt a similar heartache when I received the tragic news. I spent all day hoping that my mother would be at his bedside and could hand over the phone so that I could speak to him for a brief moment. I spent all day struggling to assemble the right words that might lift his weakened spirits, even if only for an instance. After all, what do you say to a loved one who is mere hours away from imminent death? I finally decided that I would start by uttering the phrase used whenever we would greet each other, “Helloooooo Uncle! How the hell are you?” I needed a familiar opening, something that would put us both at ease. Then I figured that I would go right into the sentimental stuff: “Uncle, I know that you are going through a rough time and I am sorry that I couldn’t fly in to be with you. But I just want to tell you that you have always been like a father to me and I love you with all of my heart. Thank you for being my Uncle, and for loving me too.” I would somehow end the conversation quickly, as I wouldn’t want to tire him any further. I wanted to say these words. I needed to say them. Alas, I missed the opportunity.
Uncle Frank was laid to rest yesterday, and I will always have fond memories of our years together, but I will always find it hard to believe that he is gone. I always envisioned him at my funeral consoling my parents. Don’t get me wrong; the rarity of growing into middle age with Duchenne muscular dystrophy is a true blessing for which I am extremely grateful. I just never thought I would live long enough to see my Uncle Frank or numerous other relatives and friends die, yet somehow it has happened. You know, beating the odds for survival often comes with a steep price, and I am left picking up the tab. Now, I could either be miserable over this fact, or totally disregard it and be happy to be alive. Fortunately, I have chosen the latter.
When I learned of the death of former basketball star Wayman Tisdale today, memories of my college association with the guy emerged. Tisdale was a hotshot offensive machine at power forward for Oklahoma while I was studying journalism at St. John’s University in New York and covering our basketball team for the campus newspaper. Since I was constantly on the beat, I had to stay up on things happening in college basketball across the country. I lived and breathed the sport back then in order to be most effective in my writing and reporting. I knew everything about every player and every school. I could recite each individual statistic. If you wanted to know how many assists a particular point guard was averaging or how many free-throws he had made, I could tell you before you were finished asking. Since Wayman Tisdale was among the NCAA elite at the time, I naturally followed him very closely. At 6′ 9″, 240 lbs., he was a scoring and rebounding wild man for the Sooners and eventual All-American. I was glued to the television as Tisdale became the second pick of the 1985 NBA Draft, chosen by the Indiana Pacers. He was taken right behind Georgetown’s Patrick Ewing and a little bit ahead of our guy, St. John’s star Chris Mullin. Ewing went first, but all of us at St. John’s were completely disgruntled when Tisdale went before our beloved Mullin. I can remember listening to all the buzz on campus after the draft. In our eyes, Mullin deserved to be top pick, let alone the second. In our estimation, Mullin was robbed! How could both Ewing and Tisdale go ahead of the great Chris Mullin??? Say it ain’t so!
Funny how memories work, huh? What I described above happened over twenty years ago, yet it still seems so fresh in my mind. I read Tisdale’s name this afternoon, and was immediately whisked away to another time in my life. Tisdale was a man of such physical strength back in the day that I was stunned to find out that he had succumbed to cancer at the young age of 44. I know that one does deteriorate gradually, but it is hard to believe that a fine physical specimen like Tisdale did it so quickly. I guess my memory of him as a vibrant young man clouded my brain, and that is why the news of his passing caught me by surprise. Then something else struck me. How could I have outlived this man, this vision of health and picture of strength? I’ve had a terminal disease since I was born. He was an athlete for most of his life. I was supposed to leave this world a long time ago. He should have enjoyed the longer life, not me. But due to a twist of a little thing called destiny, I have remained and Tisdale was taken ahead of me, just like he was taken ahead of Mullin in memories past. Life sure has an amazing way of coming full circle, doesn’t it?
OK, let’s cut to the chase here - I almost died yesterday. I say this so nonchalantly nowadays simply because it has become common for me. When you are on a ventilator and have a tracheostomy tube in your neck, things are bound to get a little crazy from time to time. Living this way is both challenging and unpredictable, and emergency situations will often arise. You and your caregivers must always be ready for the unexpected. Anyhow, here’s the latest story of how I cheated death once more…
Let me start with a little background. Years ago, Duchenne muscular dystrophy took away my ability to produce a forceful enough cough to push out mucus. So to try and prevent me from getting pneumonia, we must use an alternative method for routinely removing mucus from my lungs. Here’s the drill: my nurse disconnects me from my ventilator, inserts a 14-inch red rubber catheter attached to a suction machine down through my tracheostomy tube to draw loose mucus from my lungs, and puts me back on the ventilator for a few breaths. We repeat these steps four or five times until I feel clear enough to breathe easier.
Yesterday morning, my nurse inserted the catheter and began suctioning me as usual. Suddenly she felt the catheter grab onto something and pulled a large chunk of thick mucus out through my tracheostomy tube. When she reconnected me to the ventilator, the machine kept alarming as the air was still not passing through whatever was lodged in the tube. A large glob of gummy mucus had formed, covered the small hole at the bottom of my tracheostomy tube and completely plugged my airway. Now I wasn’t breathing, and my nurse immediately began emergency procedures. She was working rapidly, yet she remained calm and kept assuring me that I would soon be breathing again. She removed the tracheostomy tube from my neck along with the large gummy mucus glob that had adhered to it, replaced it with a new tube and connected me back to the ventilator. Air! I was getting air! The color in my face had gone from ashen back to pink, and I was left with an overwhelming appreciation for oxygenated air.
This entire emergency situation had run its course in about three minutes, but to me it seemed like an eternity. I am just thanking my lucky stars that I had an experienced nurse at my side when the whole thing went down. I lived to see another day because of it.
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!
Those of you who know me personally or have been following this blog should know by now that I lost an older brother to Duchenne muscular dystrophy many moons ago. You may also know that I devoted my life to his memory back when I was a mere teenager. His death became my motivation to live to the fullest, and to live happily. I also swore that since DMD took him at the tender age of fifteen, I would not allow it to bring me down without one heck of a fight! I am 42 now and I have absolutely no intention of giving up that fight in the foreseeable future.
Today would have been Joseph’s 50th birthday, which would have represented a rare milestone for men with this dreadful disease. It still astounds me when I stop and realize how quickly time has darted by. One day I am child at his wake, and the next I am in my forties honoring his brief yet meaningful existence. Well, since Joseph was unable to reach 50, I plan on doing it for him, as well as for all others who have gone before me. And then I will look back with respect and years of duty served.
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!
