I sometimes complain
that my life doesn't change, that I am stuck with the status
quo. I was made to realize the unpredictability of life in a
graphic way when, on May 30, 2004, I was awakened out of a sound
sleep at three a.m. with the feeling that someone was sitting
on my chest.
I got out of bed, drank
some water, and tried to go back to sleep, but, as the feeling worsened,
I realized that I was probably having a heart attack. I live alone,
and I knew, instinctively, that I had to act fast. When I called
911 the operator told me to open my door so the paramedics could
get into my apartment if I were to lose consciousness. After I did
this I managed to call a blind friend to tell her that I didn't
think I was going to make it, and to give her the phone number of
my aunt, the relative to whom I'm closest.
The paramedics were
caring and efficient. At the hospital I was given a stent (a tiny
latticed metal tube inserted permanently into an artery so that
blood can flow through it). Five days later, when I got home, I
could not walk more than a few steps without feeling like I was
going to pass out. I realized then that I was unable to care for
myself. I knew that my ability to continue living alone meant that
I had to find guys to take me for walks and help with other needs.
For the first time I also saw how isolated I had been, and how,
since the death of Harley, my guide dog, I had become a virtual
Because using a white
cane is stressful for me, and because I hated asking for help crossing
streets (often help is not even available), I chose to stay home,
leaving my apartment only when absolutely necessary. And now, here
I was, alone, unable to walk a quarter of a block, in desperate
need of assistance and, almost as important, I realized, simple
I did not want to hire
through home care agencies for two reasons: I know that their services
are costly for someone with my resources, and I wanted to be able
to specify male help. I also wanted helpers who would talk with
me, not treat me simply as a "client" who needed medication or other
assistance at set times. In short, I was looking for help, but with
a friendly component.
My sighted friend Scott,
who lives in Oklahoma City, posted ads on Craigslist for me. Interviewing
turned out to be more difficult and even dangerous than I had imagined.
One guy, who lived in my neighborhood, told me a story about how
he had lost two relatives in the World Trade Center bombing. He
assured me that he wanted to help me, but when he left I discovered
he had taken all my money. I had left an envelope full of cash in
an open drawer; sometimes I forget what sighted people can see.
He cleaned me out. Some others seemed fine, but I was having trouble
deciding. Finally I chose someone because he is a descendant of
Samuel Gompers, the famed union organizer. Even though this was
the wrong reason, he turned out to be an ideal helper who is still
Another man I chose
for a reason that will strike sighted readers as ridiculous. I liked
how he smelled. I know that sounds peculiar, but I do equate certain
smells with certain attributes. This was a risky choice because
I didn't even ask him for references. I guess my nose protected
me, though, because things worked out well. Although he no longer
helps me on a regular basis, he was there when I needed him.
The third person was
recommended by an organization called Helping Hands for the Disabled.
He and I don't get together much any more but I think of him every
time I take money out of my local ATM machine. It is not accessible,
so he taught me how to memorize the keystrokes.
Adopting the "employer"
role was tough. I was so afraid of losing my newfound help I was
reluctant to tell my helpers what I needed. Instead, I would say
things like, "Could you possibly help me make my bed?" or "Could
we take a short walk? Or, "If you'd rather go shopping without
me today, that's okay. I get tired quickly and I know I slow you
down." Luckily, the people I chose genuinely wanted to help. Although
they were being paid, they talked with me, encouraged me to take
walks, and do what I needed to do.
As our walks grew longer
and I improved in other ways as well I began to realize how much
I enjoyed their visits, and found I was having a hard time distinguishing
between paid help and friendship. When the guy whose smell I liked
told me he was leaving to work with disabled people elsewhere I
was devastated. I surprised myself by crying as though I had lost
my best friend. I also felt that, in a strange way, I was paying
for friendship. Blind friends tried to convince me that I was paying
for a service, a bit like going to a restaurant, or hiring a cleaning
person, but I found this distinction hard to accept.
It has been over a year
since my heart attack, and my life is fuller in some ways. I have
a reason to get up in the morning and I get out at least three times
a week. One of my newest helpers, a very religious fellow from a
Mennonite background, has been particularly kind. Often he will
come for short periods of time, when I just need a bit of help,
and will not accept payment. Not long ago he drove me to the Pennsylvania
Dutch country, where I got to meet some Amish people, take a horse-and-buggy
ride, and a trip on a coal-fired train. Is he my friend? In a way,
but I do realize I'm paying him. Nonetheless, he has extended himself
in a way that truly touches me, and I will never forget our day
I have learned to feel
more comfortable with paid help and I even have a few volunteers.
Still, difficulties persist. Relying on sighted helpers means that
keeping aspects of my personal life private can be a challenge.
I do not want to broadcast the details of my finances, my sexual
preferences, or information about the non-mainstream organizations
I support, so when someone is sorting mail I ask him to read envelopes
so that I can exercise a kind of triage, keeping certain mail for
certain people, a stressful way of approaching a mundane task. I
am convinced that one day a helper will read something that I did
not intend for him to read.
Why am I so afraid of
disapproval on the part of people I hire? I wish I knew. The answer
may be in part that I am too attached to my helpers. Also, the screening
process was so difficult I worry about having to go through it again.
Inherent, too, in this arrangement, is the fact that my helpers
know much more about me than I do about them, an unsettling personal
and emotional imbalance.
My dream is to meet
someone special who would want to be with me and help me and be
my friend because of true affection. But, sadly, this may not happen.
What good would it do me to wait around for a special friend who
might never come my way? I am doing my best to avail myself of the
opportunities I have found, and am happier for having made this
choice. I know
I should be grateful that I have the means to afford a more fulfilling
life. Many blind people don't have the money to hire help of any
kind; one blind woman I know cannot even find someone to help her
buy underwear when she needs it.
I count my blessings
and try to be optimistic. I also realize that I must live within
my means, and as much as I would like to have someone with me every
day and for more hours, that's a luxury I cannot afford.
When I am alone, which
still happens a great deal, I realize how beneficial my decision
to pay for help has turned out to be. Had I not taken this step,
I probably would not be around today.
© 2005 Robert Feinstein
Header design by Tom Metz.
.Painting: "Sunlight in Empty Room" by Edward Hopper
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