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When I was ten I was diagnosed with a degenerative neuromuscular disease called Friedreich's Ataxia. I began using a manual wheelchair when I was nineteen, and both a motorized and a manual wheelchair when I was twenty-two. At the age of thirty I stopped driving a car, and now I use a motorized wheelchair exclusively. In 1988 I went to Rutgers University in New Brunswick, New Jersey, graduating in 1992 with a degree in psychology and a certificate for teaching handicapped students. In 1993 I began working for Camden County, first in the Office of Disabled Consumer Services, and then for the Division of Senior & Disabled Services. For the latter agency I became assistant coordinator of the Personal Assistance Services Program (PASP), a statewide homecare program for people with permanent physical disabilities. PASP is unique because it is a self-directing rather than a medical-model program. The distinction is significant; it means that PASP consumers determine their own agendas. Medical-model programs, by contrast, assume that a consumer will remain housebound and will receive services under the direction of a nurse. With self-directing flexibility, PASP allows people to regain freedom and self-esteem by becoming functional members of the workforce. In 2001 I became the PASP Coordinator, with the responsibility of monitoring the activities of all provider agencies. The most important aspect of my job was making sure that all of the program's Camden County consumers were satisfied with the service they received. It was a job that gave me enormous satisfaction. I have always accepted my disability as a part of who I am: I have brown hair, I have brown eyes, I'm gay, I have Friedreich's Ataxia. I believe that being diagnosed at such an early age somehow gave me a good perspective on things, gave me the chance to see the big picture. Things do change over time, however. When I graduated from Rutgers and got my full-time job it was impossible for me to go to physical and occupational therapy several times a week or to consult with my doctors as often as they wished. Doing so might have been ideal, but back then I felt physically secure enough to get by without "following doctors' orders" in every instance. Besides, working fulltime was an important life achievement. A few years ago, however, I realized that circumstances were beginning to change. It was tough for me to admit, but my physical abilities were continuing to deteriorate, making it more and more difficult for me to carry out the simplest tasks. Collating papers, filling my printer's paper tray, or even pulling my lunch sack out of the wheelchair bag behind me became challenging tasks. My failing fine-motor skills first made fulltime work exhausting and eventually impossible, but there was no way I could fulfill my job responsibilities on a part-time basis. After thinking about this situation for more than a year and consulting with family and friends, I decided that I really did need to retire. I wanted to do it in spring or summer, when I could start spending more pleasant time outside right away, instead of beginning my new life during the cold winter months when cabin fever sets in. This was going to take some planning, but that would be no problem, because what I haven't confessed is that I am a big-time planner. I plan everything, all day, every day. My quest for organization involves, among other things, making sure I have more than one of everything, or making a plan if I don't. If you look in my closet today, you will find four deodorants, two tubes of toothpaste and a can of shaving cream. I'll confess that the shaving cream is pretty funny: I use an electric razor, but you never know when it might break. My planning paid off. On Friday, April 1, 2005 I did it! I enjoyed a retirement lunch thrown for me by my colleagues and began the weekend as a free man—no reporting for work on Monday. The first few weeks were okay, but after that it seemed as if nothing was going as I had planned. For openers, I spent two entire days online trying to apply for Social Security Disability. With no end in sight, I finished the application over the phone. That seemed like a bad omen. Getting around had changed, too. I have a van, but I can't drive it any longer, so when no one is available to drive me I started to give para-transit a try. If you've tried it, you know how frustrating and time-consuming that can be. Most important, I had planned to go to physical and occupational therapy at a new rehabilitation center on the ground floor of the building where I live. After scheduling an appointment for an evaluation I was told by the receptionist over the phone (not even a therapist!) that my disability was too neurologically involved. They could not meet my needs. I guess I hadn't expected retirement to be such a rocky transition. On the good side, life offers fewer constraints these days. Now when I take Patty outside I do not feel rushed. I can take my time and she can smell every blade of grass. I still get up at 6:30, which is when my personal assistant arrives, but I'm no longer in a rush to get outside in time to catch the bus for work. Instead I can relax and eat breakfast and even take a nap if I want to. Plus, I now have the option to stay up as late as I want. The funny thing is I can never stay awake past 10:00 pm, which was my bedtime when I worked. I make sure I plan to have one or more things to do every day. I go to physical and occupational therapy twice a week, I volunteer for the New Jersey Division of Disability Services once a week, and I usually visit my former office once a week for lunch, where I provide guidance, or at least my unasked-for two cents! I am still involved with the PASP and serve as Chairperson of the New Jersey PASP Advisory Council. Recently, I completed my first orientation and physical, part of a multi-step process to become a volunteer at the Voorhees Pediatric Facility, a residence for medically fragile children. As for the bad side I am sometimes afraid that I'm letting what my counselor calls "brain mold" set in. I am no brainiac, but I need some intellectual stimulation. I laughed when she told me this because I knew exactly what she was talking about. I usually start my day by watching Jerry Springer from about 8:00-10:00 am, and then, if I am home, listening to the show from 11:00-noon. Talking about a lack of intellectual stimulation. That show has none; if anything, it steals what is already there. But it's addictive. The more ridiculous it becomes the more I keep watching. The Solution? No more Jerry Springer. I vow to start watching Good Morning America instead. The other bad thing is that although I am a big believer in dealing with things one day at a time, when I get into a depressed mood I begin thinking irrational thoughts about the future. For example, What am I going to do when Mom dies? Patty is almost fourteen years old. What am I going to do when she dies? I start worrying about more ordinary things, too, like: What am I going to do when my computer breaks? I better not listen to my stereo, it's going to burn up soon. Lack of intellectual stimulation, worrying and boredom, all of these things led to lethargy and depression. These are things I know I have to deal with. The funny thing is that a few days of depression make the good days feel really really good. Retirement is not at all the kind of transition I had planned, but the jury is still out. Maybe I'll give you an update a year from now. Text ©2005 Dan Molloie
Dan Molloie is a regular contributor to Disgaytalk, BENT's online discussion group. He thinks you should be, too.
BENT: A Journal of CripGay Voices/May 2005
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