Try a little experiment. Tie your hands to your
sides and have someone feed you your dinner. Then, after they
inevitably miss your gaping gob, check out what happens when they
try, with the best of intentions, to wipe your mouth. There’s just
no way it can be done without missing something or smearing some
drool across the cheek. Now try all that without being able to
speak. These are among the least intimate of my dependencies.
The lucky people who help me with these tasks
come in two categories: family/friends, and the people who are paid
for it. Each category has its inherent problems.
Family and friends help out of the goodness of
their hearts. This always leads to bruised feelings and even anger.
They don’t seem to have much patience for the helpful suggestions I
constantly offer regarding how not to plaster my chin with pie or
dump mashed potatoes in my lap. I guess, since they’re kind enough
to help me, I should clam up and let them do it in whatever way they
are comfortable…yeah right.
The ones who get paid usually fall between two
sub-categories: those who think they know what you need better than
you do, and the ones who are so bereft of competence and/or
confidence that they have to be told exactly what to do practically
every time they try to do anything. Hmmm…which one is more
To call an ailment that renders one unable to
move (in my case, ALS) frustrating is the understatement of the
millennium. But I didn’t learn true frustration until the first time
I tried to explain to a “certified” Home Health Aide that when I
ask, for instance, to have my arm moved, that you can’t just grab it
and yank without triggering reflexes that will cause my arm to pull
back and probably make you think I don’t want it moved after all. I
will sometimes spend as many as fifteen hours a day in my
wheelchair. If I’m not put in the right position I stand (yuk yuk)
to be uncomfortable for a long time. For me, as I’m sure for many
other patients, even simple things have to be done in a particular
One day when my regular day-time aide had to
take off, my sister came to help show the substitute how to deal
with the burden that is me. A few days later, my family and I were
having one of our semi-regular conversations regarding the same
burden. My sister suggested that I might try to be more
compromising. I can totally understand what she means from her
perspective. What she doesn’t realize is that in the half-hour it
took to transfer me from the bed to the wheelchair, I made more
compromises than I care to count. From my perspective, compromise
has become the basis of my life.
I’ve been what I call a total dependant for
about four years. I’ll never allow myself to get used to it. I am,
however, getting used to the way people react to it. For instance,
there was a time when a family member could make me feel miserable
just by saying a silly little thing like “I want you to know that
you really ruined my day,” after finding out at the last minute that
he had to fill in for my aide. I’ve reached the point where that
kind of thing has almost no effect on me. Besides, it’s not like he
was planning to take three nympho super-models out on his yacht.
People say all kinds of wacky things in the heat of frustration, and
I’m not about to start apologizing for having ALS.
It’s a special person who chooses a career in
the service of others. And it’s indeed commendable for family
members to fill in for these people when necessary. But when the
shift is over, the aide goes home. And if for some reason –
emotional, obligatory, or recreational – a family member doesn’t
want to help, he or she can always say no. The patient (the
aforementioned burden) does not have the luxury of a respite from
his/her (my) ailment.
Everybody needs people. It’s no secret that we
depend on each other for everything from a mother wiping her child’s
runny nose, to a father depending on his son to carry on his
bloodline. I find myself faced with the unique challenge of trying
to make some kind of positive impact on the world and maintaining
some modicum of dignity, while being almost totally dependent on
everyone around me for almost everything. It’s been quite a while
since I’ve felt like anyone depended on me for anything.
Of all the frustrations I face, there’s none so
demeaning as having to be so damned dependent on people. And,
there’s nothing so heartwarming as having them to depend on.
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