It has been a satisfying, self-imposed social obligation to write this monthly blog delineating my personal journey into singing live jazz vocals in the deep south at an age that is beyond my prime and to write personal epistolary anecdotes that highlight the lighter side of my paralysis without any sponsorship and thereby uninfluenced by the kind of censorship that controls much of what’s written in the media today. Writing positively about jazz is hardly a disagreeable chore because I’m such a fan of the music and the musicians who make playing it look easy, and I’m still amazed that I have earned the respect and, to some extent, the admiration of some killer jazz musicians who actually dig my more modest musical contributions to the genre that is, in fact, very complex and that takes years to master. No wonder jazz seems to be dying; jazz music is much more difficult to play and understand than the kitsch that pervades the music industry in its current manifestation. It is so much easier to play genres of music that don’t require the active listening necessary to understand even a modicum of Jazzonian enchantment or the knowledge of complex chord structures, intricate syncopation, and more interesting harmonies by, at least, infinity; it amazes me that practically everyone on the planet would, if they could, employ the most skilled doctor when searching for a health care specialist, the doctor with the most experience and knowledge, but a musician with a doctorate and years of performing somehow transmogrifies into an over-skilled elitist without emotion, and the acne-riddled charlatan using pitch-correcting technology to sing simple ditties with three open chords and the histrionic, overflowing angst of prepubescent drama becomes a dilettante superstar incapable of correctly conjugating irregular verbs yet is handed the key to the Magic Kingdom of Music with its privileged billion-dollar lifestyle.
Writing about my paralysis is equally as entertaining to me simply because not many people realize all the shit I must go through just to get out of bed… with help, of course; I really appreciate all the terrestrial angels, male and female, homo- and heterosexual, and of varying religious influences who have helped my fat ass throughout my near three decades of paralysis. Without these angels, I can’t imagine how I’d have turned out other than plangently vitriolic, alone, desperate, and angry. Many of my friends still don’t realize that I am unable to perform even the most rudimentary acts of daily living, especially since by the time I’m seen in public I’ve already been bathed, dressed, and placed in my electric wheelchair, and once I’m in my wheelchair, I can make my journey seem less unnerving. Next April, I will have been paralyzed for thirty years and because I’ve had really good life-assistants, I’ve never had any life-threatening situations, and until recently, I’ve avoided the kind of excessive medication usually associated with survivors of high level spinal cord injuries; although, I am currently taking pills for pre-diabetes.
The major life-threatening health risk for quadriplegics like myself is respiratory in nature. The only muscles that I can control are my biceps and deltoids (the thick, triangular muscles covering the shoulder that allow one to raise her arms from the side) as well as, obviously, the muscles above my shoulders that allow me to turn my head, blink, shrug, and to sing with the melodic artistry of celestial crooners used to add enchantment to paradisal sunsets. I have no control over the muscles around my stomach that aid in coughing, especially if I’m trying to expel mucosal phlegm from my lungs that, if left unattended, may lead to pneumonia and the possible scarring of lung tissue. I was told during the incipience of my paralysis that respiratory anomalies were the major cause of death among spinal cord injuries of my level, and although I’ve never done any investigative research to corroborate or invalidate this claim, I do accept it as veracious and adjust my lifestyle accordingly.
The health issue responsible for the majority of return hospital visits for quadriplegics deals with the decubitus ulcer, commonly called a bedsore. We are all susceptible to bedsores, but it really affects those of us who are sedentary. In today’s social structure, we all spend entirely too much time digressing into a fluffy couch potato who spends a mind-numbing number of hours blindly watching (oxymoron alert!) marathon reality shows, but unless you are paralyzed, you subconsciously adjust your positioning to allow the blood to flow to all of your skin’s surface areas. If you do not adjust your position, the blood flow is interrupted, which tends to pool in certain areas and kills skin cells, which accelerates the death spiral of surrounding cells. Red skin is the initial warning sign. If you have a red area, push a finger in the middle of the reddened area then pull it away. When you remove your finger, you should temporarily see a whitish dot where you finger touched the skin. This turning white is called “blanching,” and the whitish mark should slowly return to the reddish color once your finger is removed. If it does, then massage the spot until the redness goes away and continue to do “weight-shifts” until healthy skin returns. (Incidentally, a “weight-shift” is exactly what it sounds like: merely adjust your positioning to allow blood flow to continue unabated to the reddened area.) If your skin remains red after you poke it, more urgent precautions are necessary to prevent further skin damage. Quite frankly, it’s a very serious threat that I can spend pages upon pages boring you with details that would drive you to sing Christmas carols in a synagogue.
I’ve had a few close calls, but I’ve never had a serious decubitus ulcer in my many years of paralysis, which may seem as innocuous as vegetarian waffles to the verticals who read my blogs, especially young verticals, but bedsores can be, and are, fatal if they go unintended for any length of time. (Incidentally, a “vertical” is anyone who walks upright… it’s not a pejorative, merely a label.) As you may have surmised by the tone of my rhetoric, I am currently experiencing the incipient events of my first decubitus ulcer.
Yes, it’s true. I have a small area of dead skin on my backside that doesn’t blanch, but let me assure you that my healthcare team and I have caught the potential problem before it’s had a chance to develop into a serious problem. However, as a precaution, I’ve had to stay off my backside as much as possible; I must stay out of my wheelchair and remain in bed longer than normal, which causes me to spasm more, but it’s still better than having to remain laying prone until the bedsore heals completely, which is the necessary protocol for a more serious skin ulcer. If there is one thing I abhor more than hypocrisy, it’s having to lay prone for longer than a nanosecond. Seriously. I hate it. If, however, I’m in my bed supine, i.e. on my back, I may still be unable to move anything but my arms, and then only slightly, and I am still as immobile as the ground upon which stands a sumo wrestler, yet I can move my head side to side with relative ease, and I have a television directly above my bed so that I can watch the “Penguins of Madagascar” or any other educational program that tickles my curiosity. When I’m prone, I am immobile… can’t easily move my head… and I can barely breathe. It sucks, and I really, really, really don’t like it at all, so you can bet your very last dollar that I’m going to take every precaution to heal my skin as quickly as possible so that lying prone does not become an option. It is, however, sort of intriguing to realize that all this drama generally goes unnoticed by my kith and kin. I make paralysis look easy; it may be because I am a master thespian. I am, however, no master debater… my hands don’t work.
Another aspect of paralysis that goes relatively unnoticed by verticals worldwide is the dependency I have on my wheelchair and its connection to my having any resemblance of an intriguing and productive life. My wheelchair is more than a metaphor for my legs; it is, quite literally, my mobility, and as such, it, my wheelchair, must be completely dysfunctional before I send it to the shop for repairs. In a perfect world, I would have my wheelchair maintained whenever any anomaly occurs, regardless of how insignificant, and I’d have a backup chair that fits me as well as my primary chair for such occasions. Let’s face it, when my wheelchair breaks down, I am stuck at home, either laying all day in bed or sitting all day in an overstuffed chair, staring endlessly at daytime television that is as inspiring as watching grass grow or paint dry. If I have a backup chair, which I do most of the time, it’s a chair I’ve serendipitously picked up along my life’s journey that is functional but can be as uncomfortable as asbestos underwear. This is where I am now.
Last month, my wheelchair died in the night. As I slept, the goddesses of arbitrariness visited my humble abode and destroyed my wheelchair in such a way as to leave the crime scene as clean as a puppy’s genitals after a three hour tongue cleansing; nothing looked out of place other than the chalk outline of my chair and the yellow ribbon that designated the boundaries of the crime scene. It looked as if no malice were involved, but I’m sure the destructive fairies of mischief were snickering at my misfortune like school kids in a church pew after one of ‘em accidentally farts a shrill chirp of flatulence that echoes through the church organ’s massive brass pipes, rattling the stain glassed window scene of Lazarus as he exits the tomb. (By the way, as Lazarus steps out of the tomb, his body partly decomposed and attracting flying insects, his sister puts her palm across her nose in a misguided attempt to stifle the stench, and she cries out, “Jesus Christ!”) Luckily, I had a doctor’s appointment later that week, so I went in to see the good doctor with a wheelchair application, and my doctor filled it out.
My wheelchair request was denied! No joke! Do you want to know why? Brace yourself… you’re about to be pissed: My application for a new wheelchair was filled out correctly, but the reason it was rejected was because instead of going to the doctor for a “wheelchair assessment,” I went in for a regular checkup. No kidding! My wheelchair request was denied simply because the doctor’s appointment was labeled as a general checkup instead of as a wheelchair assessment. I now have an appropriately labeled ‘wheelchair assessment’ in the very same office as my ‘doctor’s appointment’ to resubmit the exact wheelchair request for the beginning of next month. I spent two extra months in my uncomfortable backup wheelchair merely because of semantics. I know! I reckon I make paralysis look easy, but that may be because most of the bullshit I must overcome is hidden from the general public whether it be a broken wheelchair or a mostly hidden pain in the ass.
Peace Through Music
November 13, 2015