I've been feeling under the weather the past three (3) days now, and I've been trying to manage my situation well, given the fact that most times, I find myself alone. I recall the backlogs of things I need to complete in my listing. I remember one particular admirable fellow. In one of the gigs I do for my livelihood (and to be able lead a more purposeful life), I got to meet and befriend a blind man. He's Bob, and we would keep regular contact of each other. He got curious about the things I do here in NYC, being a transplant from Manila, Philippines. He wanted to read a piece of my writings, and have shared him one of my postings here in my blogs (I could not recall which one), which might have prompted him to share me one of his own. I took the chance to ask him if he would like his write-up to be posted here in my blogs, and he agreed.
The dog is now gone (I remember Bob telling me he died years ago); I saw the dog's latches hanging, on the knob of the door one time I was in Bob's apartment. Bob happens also to be able to both read and speak in French. Read for yourself his write-up and please feel free to email Bob as he's very capable to read and respond to emails: harlynn@panix.com
HOME ALONE
By Robert Feinstein
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 shut-in.
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 human companionship.
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 with me.
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 in Pennsylvania.
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, 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.
I wrote this in 2005.
