I read years ago, long before I ever knew that I would be in
this position, about the loneliness of handicapped people. It’s amazing how the Universe guided me to
learn about this facet of handicapped people before I knew I would be involved
with someone in a wheelchair. Where I read this, and what it was, has long
since disappeared from my memory. However two items in what I read struck me
most profoundly.
One of them jolted me into personal action. The fact that most
affected me when I read whatever it was I read, was that handicapped people suffer
from severe loneliness. They exist in a post ADA[i]
United States with the ability to be out in society, but for the most part,
largely invisible and ignored. What I read stated that since most people do not
or cannot handle interacting with the wheelchair person, that the wheelchair
person literally avoids eye contact with those who are not handicapped. What
happens is that they become invisible, like an ostrich with their head in the
sand. They adopt this behavior not only to protect others from having to make
eye contact with them, but also to protect themselves from the constant pain of
the awareness that they are invisible to the general public. It is just easier
to not notice that they are invisible.
I decided to test the theory purported in what I read. As I
walked on public streets, shopped in stores, malls, and everyplace I went, I
made a conscious effort to make eye contact with people in wheelchairs. The
numbers of them was astounding. I, myself, had never noticed how many of them
there are. How many wheelchair people did you notice in your travels today? To
my sad surprise, I discovered that it was true! Most wheelchair people will not
make eye contact with people whom they do not know. Even when I tried saying “hello”,
they avoided me. Oftentimes they exhibited shock at the fact that someone spoke
to them. How lonely they must be: they are largely an invisible being in a
world that either cannot or will not interact with them.
I wonder now how long
it will take before their condition of being in a wheelchair is so normal, that
they are no longer pariahs. The world has made great strides in a positive
direction for all of us, but the reality is that we are “not there yet”. Most
wheelchair people are still ignored, outside of their immediate family and
friends, when they are out in public.
The second item that I read about in my mystery “read”, was
that your current friends disappear when you become handicapped. This was
amazingly true for us. Oh, they hovered about for a while in the acute and
early recovery stages as long it was in their comfort zone. In the bigger
picture of the longer story, their lives continued on their path, and our path
changed. Our friendship was no longer mutually beneficial. We are no longer
invited to the dinner parties, or any of the social events that are a part of
most of our lives. John’s inability to speak comfortably beyond a certain
limited vocabulary makes others uncomfortable. He’s not the “funny” person he
used to be. He has changed – a difference that most of our previous friends are not able to
comprehend. We are now the pariahs I read about many years ago.
My role of Caregiver has left me more than a little
isolated, too. I’ve lost social skills along the way. I spend most of my time
alone, or with John, which is little more than being alone. I suffer as quietly
as I can about this. I know that no one wants to hear me whine about my
loneliness. I’m not fun to be around either. I’m boring and fearful. I’m afraid
I might slip and say something about my unhappiness and it is no secret that no
one wants to be around someone who is unhappy. I have no doubt that people
sense my fear and that becomes a catch-22. My fear compounds the fear of me in
others which makes me more fearful. I sense their fear every moment.
The energy it takes for me to pretend that I am happy when I
am with my friends or in a public situation is mind-numbing and physically
exhausting. It is no wonder I leave events early and simply retreat to the
private sanctuary of my home to rest. I cannot keep up the façade. Even with my
years as a performer, where I can “put on” any face, or as a teacher, where the
boundary of teacher-student protected me from having to really interact with my
students as people, I still tire easily from the energy level required to be social.
There is a beautiful side to all of this. We changed. Our
life path changed. We met and interacted with a host of new people. The new
people we now meet see us as we are now. They didn’t know us before the stroke
drew a line in the sand for us. It is easier for them to accept who we are. I
still have to “act” the part of being happy most of the time. Sometimes it
comes out naturally. Most of the time I just get exhausted from the effort to
appear happy. I don’t want to alienate those around me. I wish I thought I was
succeeding.
John is luckier than I in this aspect. He is a naturally
happy person and the stroke did not take that from him. For this I am extremely
grateful. He lost far more than I did as a result of the stroke yet he truly
awakens each day, looking forward to being alive for that day.
I do know, each and every day, that I am blessed that I have
so much awareness of my condition, of John’s condition, and of how we appear to
others. I am aware of how challenging it must be for those around us to be able
to accept who we are now even though they didn’t know us in the “before”
existence. My awareness helps me cope with an enormous amount of resistance from
others. I feel that most others resist who we are – a handicapped couple, not
because they want to. I feel they resist us because they are not prepared to
cope with the handicap and lack of social skills we convey. They resist because
they are uncomfortable and do not know what to do. We are not the norm.
I truly do not judge them in any way for this. They are who
they are, and are travelling their path in this life. Some people allow us “in”
to their lives, if only for the occasional dinner out. Most others are not able
only because their path has taken them to different lessons.
I have no right to
judge others. I am aware. There is a difference. Judging leaves me in a swirl
of negative emotions. Awareness allows me compassion for them and for us. Compassion
is a positive emotion and gives me hope. I know that my compassion is healing
for me, for John, and for those around us. I hope that I will always appear to
others as being compassionate. What a great gift that is!
Of course it may also be that my perception of their
resistance is merely a reflection of my resistance to them. That however, is an
entirely different, and extremely lengthy discussion that is outside the
parameters of my purpose at this point. I prefer to focus on the gifts and
compassion. It brings me much more joy.
[i]
*ADA, or the Americans With Disabilities Act was enacted into law in 1990. See http://www.ada.gov
2014 Nancy Weckwerth