In a moment of weakness that preceded this visit by nearly 10 months I called my mother and stepfather into my bedroom where I lay motionless on a hospital bed. After nearly 11 years of having my self-esteem torn down by the ones who were supposed to care for me the most, I gave in. I do not remember the exact words, but I told them that I would go into a facility if it met two standards; 1) that there were people like me there and 2) I could come and go as I please. By the phrase, "people like me," I meant people who had suffered injuries similar to my spinal cord injury that left me motionless below the collarbones at age 19 but 100% aware of the world around me. I meant relatively young people, those that had complete cognitive awareness and could express it, no octogenarians that had lost their minds years before, no one relying on machines for each breath and pump of the heart, and I definitely did not want to be surrounded by vegetables. I had come across a multitude of these people throughout my years confined to a sip and puff wheelchair. These poor people that are pushed around by their parents through malls and at ball games were like magnets to a person in a chair that could actually converse. They sit there with emotionless stares as mom and dad speak for them in childlike voices. Call me a snob or an asshole, but just because life trapped me in a wheelchair it did not make me the goodwill ambassador for all things handicapped.
Do not get me wrong, I never once acted as if I was being imposed upon by the rubberneckers that had to know every detail of my life from injury to bowel program and all points in between. On the contrary, I bent over backwards to cater to every one of these people because I knew of the terrible pain that they suffer every day. How could I ever deny a middle-aged mother with tears in her eyes as she described a car accident or fall that froze her child's brain in a constant state of neutral? I always have stories of hope and grandeur tucked away between the folds of my mind just waiting to tantalize the slightest glimmer of belief she might have for a more positive future for her and her beloved child. But I do not want to live my life surrounded by every still life model of catatonia.
But I did say it. I said I would go if my standards were met. Yet as soon as I said it the words were already forgotten by me – but they were not by my parents. Months went by and there was not as much as a word about going into a facility. October rolled around and I went to a new neurosurgeon at the University of Alabama in Birmingham because the pain of the hundreds of pieces of bone, four titanium plates, 25 screws, and six bone grafts that made up my cervical spine had come to a point where something had to be done. I would not spend my life a slave of opioids to dull the pain as my father had been, but perhaps there was something that could be done. After a couple MRIs, x-rays, and CAT scans the surgeon came back to my exam room with the news that something had to be done and immediately. He claimed the next bump I hit on the red brick roads of the University I attended could be my last. My spine could just collapse causing me to suffocate.
To tell the truth, a majority of my consciousness hoped that this was the opportunity to check out on an outlandishly miserable existence. Perhaps the surgery, which was being performed on the 11th anniversary of the injury that ruined my life, was a godsend. No such luck. Even with a high probability of losing my capacity to breathe on my own (which would automatically call for the doctor to turn off the ventilator after three days per my living will) I came out of the four surgeries and 14 hours on the operating table with my only major problem being fluid that had settled in my lungs. After a few days I was even able to get up in my wheelchair and roll down to the cafeteria with a friend to pick out my dinner. But something was wrong, my neck was stable and gave me very little pain, after a few days my lungs cleared up, but why was I still in the hospital? After the dozenth or so time I asked my surgeon he told me that my parents were shopping me around to nursing homes without my knowledge. I was devastated. Luckily they were having no success due to my young age and extreme level of disability. So after another week I went home to the hospital bed in my home. I felt content that there was no way I was going into any type of facility and I prepared to return to my studies towards a BA in English/Creative Writing.
Just a handful of days later my stepfather asked me to go for a ride with him. He did not mention where until we were in the van on the way to a nursing home about 20 minutes away from my hometown. He said he wanted me to give it a chance. I should keep an open mind. I could feel the hair standing up on the back of my neck signifying that my blood pressure was climbing. This would have to be one state-of-the-art and active place full of twentysomethings and college students hell-bent on living independently and contributing to society.
We entered the lobby of the facility to the open arms of an administrator that stuttered his way through an introduction. He called over a female coworker in a pantsuit to give me the tour of the place. As I left the carpeted office space in my tires squeaked on the linoleum floors I passed by woman after woman in scrubs going from room to room while talking far too loud. I could not help myself from looking in every open door. Each dimly lit room hid its own little horrors. In one room may be a man drooling his pudding down on a bib obviously designed for a two-year-old and another so dimly lit that all visible to the naked eye were two emaciated legs bent up in the air. As I turned and traveled down one of the long halls of the warehouse I was violently struck by the bounty of unique, rancid aromas that I would soon learn to be the bouquet of dozens of elderly people all sharing the effects of laxatives. The smells were only compounded by the wet floors caused by traffic in and out of the cold, rainy day.
I had absolutely no intention of spending one single solitary minute in this place than absolutely necessary, but patiently waited out the tour. I felt as if a diver struggling for a breath of freedom by the time we reached the carpet once again – only to find the administrator and my stepfather shaking hands and stuffing away signed documents into folders. In a moment of weakness just days after my injury I had given my stepfather power of attorney so that he could handle my affairs and he used that power of attorney to imprison me. There was nothing I could do. It did not matter how much I protested, the die was cast.
There are many dates that stand out in my mind, but few are as regrettable as December 7, 2006. Just a few days after I had toured a facility that represented every nightmarish probability that my life lead me down, I entered Room 221 as the youngest resident in the facility. Perhaps the most disturbing part of the emotional roller coaster was how ecstatic my parents, my sister, and my brother were to have me move out of the home that I had helped design just a few years earlier. Soon my family would sell all of my furniture and collectibles at a yard sale using my room as a storage bin for their bicycles until they sold the entire house and moved out of the only hometown I had ever known. I did not leave my bed for several days, and when I did I was nearly brought to tears by the multitude of roommates that lined the halls and nurses' desks. Most of them were just shells of the people they had been when they were my age and the few that were a bit cognizant of what was going on would constantly reach out for me as I passed. The only people that were sane, the employees, walked by me from the right and left staring at me from toe to head yet not saying a word. Hell had just begun.
