going to write about retirement at age thirty-five, but before
I tell you about that let me introduce myself. My name is Dan.
I live in Voorhees, New Jersey, a suburb of Philadelphia, with
two roommatesmy schoolteacher mom, and Patty my service
dog, a thirteen-year-old yellow Labrador I've had since she was
two, and who got the jump on me by retiring last February.
I was ten I was diagnosed with a degenerative neuromuscular disease
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
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.
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.
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.
few years ago, however, I realized that circumstances were beginning
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.
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.
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.
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 manno 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.
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
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
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.
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.
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.
A Journal of CripGay Voices/May 2005