Putting the Pieces Together Again
By Linda Lang
I saw a program the other day about
a survivor from 9/11. She was a young woman who had been very
badly injured. The doctors gave little hope for her to live,
let alone walk again. With tremendous courage and hard work,
she beat the odds and actually got to the point where she
could walk unaided. She still lives with a great deal of pain
and walking is still a difficult challenge. When asked what
her greatest difficulty was, she said that she felt different
from everyone else, that she no longer fit in. Something inside
of her had been broken. Her words reminded me of a jig saw
puzzle. She felt that the various pieces that made her "her"
no longer fit together. A puzzle consists of an image that
has been cut into pieces and the goal is to put them back
together again so that they form a whole. It struck me that
the image could be cut up in many different ways and still
form a whole. Each piece of us still retains its own integrity
and all are important in defining who we are.
In my early years of living with RSD
I could only think of the holes that the syndrome had caused.
I felt that I had lost so much that nothing could ever be
whole again. At first I hoped that intensive physical therapy
would put me back together. But my symptoms only worsened
and the physiatrist finally said there was nothing he could
do for me. I felt like Humpty Dumpty. If the physiatrist (along
with all the king's horses and all the king's men) could not
help me, that meant I would never be the same as before. My
image of myself would have to be changed and I had no idea
of how to do that. There was no room in my imagination for
a woman who was permanently disabled. I had put my life on
hold all this time, believing that I was working hard to overcome
something that I was now told could not be overcome. All the
pain and hard work had come to nothing; in fact, it came to
less than nothing. Now I had a leg that was terribly distorted,
a foot that was so deformed no footwear could contain it.
I could not bear to look at it. I could not accept that I
would always remain "different". If I could not
accept myself how could I expect acceptance from others?
How many of you feel different than
before you had RSD? Different not just within yourself, but
different from those around you? So different that you no
longer seem to "fit in" with others? Ours is a culture
that celebrates youth and with it, physical ability. It is
a culture that requires us to frenetically fill our days with
all kinds of activities and perform all kinds of roles. Often
there is little time left over to think and reflect. We tend
to define ourselves by the roles we play: mother, daughter,
employee, tennis partner, husband, brother, friend, and so
forth. With these roles come various responsibilities, many
of them physical in nature. These responsibilities define
a pattern for our lives. The tasks required of us are pretty
well defined and we don't have to think much about them. There
may be times when all of these responsibilities seem overwhelming,
but that is a problem we can share with others because it
is one that we all have in common.
Along comes RSD and with it the disabling
pain, the loss of movement in one or more limbs, the fatigue
and all the other various signs and symptoms that are part
of the syndrome. At the least, these can interfere with the
performance of some of our roles, at the most it can remove
the ability to perform these roles altogether. We no longer
know who we are or how we should be with others and others
don't know how to be with us. It can be very hard to accept
the physical changes to our physical selves; a once able-bodied
man confined to a wheel chair, a mother no longer able to
hold her child, an artist who can't pick up a paint brush.
All the underpinnings have been removed. We must re-define
ourselves not in terms of what we can no longer do but in
terms of who we are. Our physical abilities can change over
the course of the disease, but who we are, the very essence
of what makes us a unique human being, is still us.
We are left with a very big challenge,
one that stands apart from the challenge of dealing with the
health issues of our disease. We have to reintegrate that
which makes us who we are with the reality of what we can
and can no longer do. One luxury a chronic disease affords
is more time to think about these things. My world has necessarily
become smaller. My legs no longer take me where I want to
go so I have to wait for things to come to me, appreciate
what is in my immediate surroundings, or use my mind and imagination
to go other places. In other more primitive culture, roles
were created for the sick and disabled. It was assumed that
since they could no longer work, they had time to think and
gather wisdom. That wisdom was used to help others in the
tribe and so they had a new role to fulfill, one that came
with respect and admiration. It seems to me that that same
philosophy can be used to rebuild and create roles for those
of us who have RSD.
When I was in college I thought that
someday I would write the "great American novel."
As the years passed, that dream was forgotten, replaced by
the practical needs of earning a living and raising a family.
All of us have dreams that we gave up because our roles demanded
that we fulfill other kinds of responsibilities. Now could
be the time to re-define what we consider work or success,
and rekindle those dreams of long ago. I may never write that
novel, but I am using my writing in a way that is fulfilling
to me and, hopefully, helps other along the way. Doing this
required letting go of some of my preconceived notions of
how a life should be lived. Brought up with the idea of the
Protestant work ethic, I needed to see that much work can
be done in a more passive way. I have become more of an observer,
listener, and thinker, using my observations and thinking
powers to do problem solving. I have learned to accept that
this is important work, even if others cannot always see the
results. I may not be able to go to my office every day, but
I can use the computer to stay in touch, to answer your emails,
to write, and do research.
Because I am doing things that are
interesting, I have interesting things to talk about with
others. I no longer center my life around my RSD and others
no longer see me as being so different. I can hold up my end
of a conversation and be fun to be with, even if I can't engage
physically in ways that I used to. In short, I have redesigned
some of the pieces to the puzzle so that it once again forms
a whole. It is still a struggle, and I have lost some friends
along the way. But I can once again respect myself. Redefining
the roles I play has allowed others to respect me as well.
There are still areas that need work, but I feel as though
I am getting there. The process is a fluid one because RSD
never stays the same. I may lose still more physical abilities,
but I believe I'm in a better position to adjust to that.
RSD is a chronic syndrome, one that
(barring a cure) could be with us in some form or another
for the rest of our lives. That means we have to reshape our
lives, to work with the puzzle pieces until they form a whole
with which we can feel comfortable and proud. We need to replace
old dreams with new ones, ones that may actually be closer
to who we really are. It is the reshaping of the old piece
into new ones that gives continuity to our lives, that show
ourselves (and others) that we are still human beings who
have needs and desires aside from our illness. Although RSD
may set us apart in some ways, we still remain firmly connected
to the greater human community. |
