Most of you are unable to know what it’s like to be an immobile sentient piece of meat; not able to turn in bed; not even able to sit up; having people look over your unattractive, naked, paralyzed body for redness, sores, for the seemingly endless nearly imperceptible anomalies that can easily transmogrify into major, pernicious health issues; having someone else not only help you remove your fecal waste but wipe your hairy ass afterward; having anyone dress you, trying to assure that the belt-line isn’t under your armpits or that your zipper isn’t where your left pocket should be; making sure that your crotch is not wadded in a misguided, twisted, tortuous wardrobe malfunction; having somebody care enough to bathe you, to wash between your toes, to assure there’s no funk on your scrotum; having friends pick boogers from your mustache; having an attendant bid you a fond nocturnal valediction and trust that she won’t leave in the middle of the night.
I am a quadriplegic, and fortunately, most of the people who have helped me are the most hard-working, loving, caring human beings on the planet, and yes, this includes homosexuals as well as sympathetic citizens from distant countries, people from differing religious affiliations and cultural associations. These people, and people like them who care for others in need are earthly angels and deserve the highest apartments in Heaven’s most exclusive penthouse, above the pope, above some angels, above the politician, above the benevolent leader. Although, I don’t believe in the idea of a gold-laden heaven, I sincerely wish it did exist as rewards for these selfless people; true terrestrial angels.
The first attendant who ever cared for me was Flora, and she, indeed, was an angel. She was a little black woman, about forty-five, and she had an indomitable spirit encouraged by her irrevocable belief in God’s goodness. She was a wonderful cook, a seamstress, doctor, nurse, and counselor. I’ve never had any desire to get rich for myself (Hell, I’ve got everything I need within the very walls of my house!), but it sure would be nice to look up Ms. Lowe and hand her $10,000 or send her on a cruise. She deserves much more than even that. And it sure would be nice to give my current attendants much more money… my sincere respect and gratitude is not nearly enough. Flora was the crème-de-la-crème of all the attendants I’ve had to employ, but she was paid for by our government while I was in school, and although her remuneration was scant, it was a fairly reliable source of income, and much more than I could afford at the time. I broke my neck in April ’86, but after graduating from Mercer University with a BA in English and a minor in Computer Science, I started working full time in 1992 as a computer programmer for a major international corporation. At the time, I was making $19,500 a year! But once I became a full-time employee, the government stopped paying me the Social Security Disability check I had been receiving, and I was unceremoniously released from the shackles of governmental disinterest, so I had to find ways to pay for attendant care, by whatever means available.
Fortunately, my cousin Johnny came to live with me; our Grandma Alice would send over food nightly to feed us both. All I needed was someone to come a few hours in the morning and a few hours at night to get me washed, dressed, and in-and-out of bed so that I could go to work. As you might’ve guessed, I either got attendants who really cared or some really whacked-out individuals. And I couldn’t tell the difference between the two when I interviewed my potential helpers for the job of taking care of me.
I can’t remember his name, but one of my attendants was certifiably nuts. He was the choral director for an Episcopal church that was down the street. He was a bit effeminate, but that didn’t bother me; a few wonderful homosexuals had taken care of me throughout my paralysis, but this guy was bonkers. He kept dropping by unannounced and asking if I was all right until I finally had to ask him to only come to my house when he was scheduled to work. His enthusiasm then soon vanished, and as a result his work became so incompetent that I had to fire him. He practically begged for forgiveness and swore that the only reason he had been slack in his responsibilities was because he had been feeling ever so distraught. Not three months later, I saw his picture plastered on the local television news. He had called the White House and threatened President Clinton. When agents arrived at his house, he had the gun pointed at his own head. After a while, he acquiesced to the authorities like a three-year-old who had been caught with her hand in the cookie jar. He is probably still residing in the state asylum in Miledgeville, where it’s rumored that they still employ electric shock therapy.
My next attendant was very good, but she soon got married and needed insurance, so she had to leave me. Cousin Johnny graduated from high school and returned to Savannah, so I then got the idea to offer room and board for attendant care. The first—and only—roommate I tried was a wonderfully sweet young woman. She was in her mid-twenties, from Manchester, Georgia. It was her desire to leave the small township (where everybody knew everybody) for the “big city,” so she left her mama to come live with me for a year. She was cute with a vernal body and perfect breasts, and she tasted like a peach. I’m still not sure how I attracted her, but we became lovers, and I was very content for about a year.
I’ve never had a relationship with a woman that lasted for more than a year. Never! In retrospect, it’s easy to see why I didn’t attract women in the years after I graduated from high school, during that awkward transition between childhood and manhood and the accompanying failed interpretation of my worth as a young man wherein I got drunk every chance I could because I was so steeped in a confidence-draining lack of self-esteem.
Looking back, I had the physical attractiveness; I was witty; a bit goofy; could be charming at the drop of a hat yet could decipher ignorant English with the ability to imitate any character of Chandler Harris or Faulkner; would be equally at home with a duchess or a street urchin; and a had a deep empathy for anyone in pain, physically or mentally; I could’ve easily found a suitable companion if I only had the confidence, but maybe that was part of the overall plan my Muse has for me, which is still mine to discover, a plan to distract me from accepting the dogmatic practice of marriage and to interpret it as a socially enforced institution that legally binds two people together for life or until apathy encourages infidelity.
Laws are made by them who own too much as protection for their wealth against them who have less. Marriage, in reality, is merely a nonbinding social contract created by them with less self-assurance than materialistic bravado, a contract, easily negotiable, that basically states that two people must only have sex with each other. If you think about it, that’s all it is, and if I had been more confident in my youth, I would not have had to dull my cerebral intuition with intoxicating spirits to try to stimulate interest from the fairer gender. I would have found someone particularly interesting, but realizing my youthful proclivity for pulchritude, I might very well have acquiesced to the marriage contract with an attractive woman merely because I’d have been strongly encouraged to it from youth by school, television, parents, friends, and especially the church… by effective propaganda, baby! So I would have married her, and soon the sex would’ve become routine. It happens to every couple, but the lucky ones have somehow found a partner with whom they are compatible for their lives, laughing and growing together through their wither-wearied years.
From 1992 until the change in the millennium, I had to pay for attendant care out of pocket, so I had to save where I could, and that was not always to my advantage. During that time, I was left home alone in bed twice, wondering if anyone was ever going to find me, but I worked with good people, so when I didn’t show up at work and nobody had heard anything from me, my friend and coworker Jeff would drive to my house, attend to my more immediate needs (thirst, body temperature, music selection, et al.), then he’d phone in someone to help me with my more intimate needs (bathing, dressing, grooming, et al.). I had one attendant run up a two-thousand dollar phone bill before he left unannounced; I had one attendant who claimed to be a CNA (a Certified Nursing Assistant) but who got physically sick while trying to help me with my bowel program. Needless to say, she didn’t last a day; I had one interviewee walk into my house and, without so much as a salutation, immediately start telling me what she was not going to do for me. She then asked how much she was getting paid. I calmly showed her the door and reassured her that there would be no second interview. For about eight years, I had an attendant come in at nine p.m. to get me ready for bed (brush my teeth, brush my hair, transfer me to bed, get me undressed and washed), then she’d leave until five the following morning when she’d return to get me ready for work.
Solitude is laying totally in the dark for an eternity, wondering if your attendant will have an accident and leave you lying in bed for…
One of my best attendants was a housewife, married to a retired military man and a mother of four, who just happened to answer my add in the paper because she was looking for something interesting to do in her spare time since her children were young adults. Other than being a mother, she had no formal training in any health field, but, again, she was one of the best. Mothers are remarkably resourceful and very creative.
Right after the turn of the century (and the impending Y2K scare), the company for which I worked negotiated for a new insurance corporation, and as a result, through some loophole discovered by someone in HR, I was allowed to sign up for a program that would pay for my attendant care. Unfortunately, the policy stated that they’d only pay a CNA or higher to help me. Sadly, the aforementioned housewife/mother/attendant had never been licensed even though she knew more about nursing than almost everyone else I had ever met (she was, after all, a mother). I did not want to lose her services, so I paid for her to go to CNA school, and she was the best student in the class, graduating with honors. In fact, she did show the other students, as well as the professor, a better way to transfer patients, the same technique my mother taught her to use with me. I will always be very grateful for everything that she did for me, although I did get to return the favor by saving her life.
I was watching a movie when she came in, and she went to my kitchen to do laundry. (Yes, my washer and dryer were in my kitchen; I lived in a small, charming house, so small even the mice were hunchbacked.) During a commercial she came in to where I was sitting and mentioned that she had had terrible heartburn the previous Saturday night. When my television program resumed, she went back into the kitchen, but she soon returned looking very pale and talking incoherently, her hand over her heart, and she awkwardly laid on the couch. I thought it was the heartburn about which she had earlier been complaining, but I told her that if she didn’t answer me coherently, I was going to dial 911. She couldn’t, so I did. Actually, I dialed zero and asked the operator to dial 911. My fingers are contracted and don’t work for shit, so it was much easier than my dialing three digits consecutively without error… quite possibly hitting the wrong button with my contracted fingers. The funny thing is that the EMT was the nephew of one of my coworkers, and as he came in through the front door, he said as he saw me sitting in my chair in no apparent danger, “Rusty! How are you? I thought that this is your house.”
“I’m fine,” I answered, “but you might want to take a look at the lady passed out on the floor.”
My attendant was doubled over on the floor where she had just thrown up… and she was trying to clean it up! She was immediately rushed to the hospital, and she actually had her heart attack while she was in the Emergency Room. Thankfully, there was minimal heart damage.
Since then, I’ve had a few losers (the phone bandit and the queasy CNA), but I have a couple of good ones now. I never know, however, when something will come up that’ll cause one or both of my current attendants to leave. I’ll have to don a more serious façade and try to weed out the truly divine life-givers from the wretchedly disinterested. Oh well, such is the life of a quad.
Peace Through Music