Monday, March 19, 2001
To whom it may concern-I
am tired. I am tired of not being to clean my house. I am tired of not
being able to wash a full load of dishes.I am tired of keeping a
positive attitude. I am tired of trying not to be too much of a burden
on my loved ones. I am tired of reminding myself there are others who
have it much worse than me. I am tired of struggling to get out of bed
in the morning. I am tired of having to use a motorized cart to do my
grocery shopping. I am tired of pain. I am tired of having to sit down
and rest every 10 minutes when we go to the mall. I am tired of being
an albatross. I am tired of walking into a new store or restaurant and
looking for the bathroom, "just in case". I am tired of being fat. I am
tired of not being able to exercise enough to burn enough calories to
not be fat anymore. I am tired of being awakened a half a dozen times
at night because of leg and foot spasms, cramps and twitching that WILL NOT GO AWAY.
am tired of looking ahead. I am tired of needing to use a handicapped
placard. I am tired of pretending not to notice people watching me to
see if I really am disabled. I am tired of the looks in old friends’
eyes when they remember how I used to be and compare it to what they
see before them now. I am tired of strangers asking me if I am really
disabled. I am tired of fighting with an insurance company and with my
attorney just get treatment I desperately need. I am tired of pain. I
am tired of having to take medication.I am tired of losing my balance.
I am tired of watching the weather channel to see what kind of pain the
weather will bring each day. I am tired of "rating my pain".
am tired of needles and doctors and tests and procedures and hospitals
and physical therapy. I am tired of medical double talk. I am tired of
feeling new pains. I am tired of numbness. I am tired of being tired. I
am tired of asking for help. I am tired of beating myself up for not
being the person I used to be. I am tired of
having special needs. I am tired of not feeling whole. I am tired of
not being "normal". I am tired of not being able to…(fill in the blank).
I am really tired and I just want my life back.
after my last spinal surgery. Since then I have learned I have
something called and generally referred to as "accquired disabilities",
meaning I wasn’t born fucked up. These disabilities are also referred
to as largely "hidden and invisible", meaning that I have no discerning
or visible evidence or deformity that would suggest that I am anything
but "healthy and normal", albeit a bit fat. This is especially true if
I am minus a cane or my motorized scooter until you see me get up and
walk. Because of this, I have had to learn how to be disabled. My cane
became "The Legitimizer". The scooter, the difference between enjoying
days out instead of getting through them. Life changes.
have learned that an incomplete spinal cord injury is not enough to
make you disabled in the eyes of the Social Security Administration.
However becoming chronically dysthymic (chronically depressed) and
mildly agoraphobic because of the incomplete spinal cord injury does.
have learned more about pain that I ever thought existed. I hate pain.
I always have. Before becoming disabled at 11 years sober, I drank and
used drugs for 10 years in attempts to eradicate the emotional pain of
an unhappy and troubled childhood and physical pain was something you
took a pill for and it went away. Now, I know about chronic pain and
nerve pain and that you can still feel pain in the numb places. I’ve
learned pain also buzzes, vibrates, and burns. I know about pain that
never goes away. Syndromes and terms for the complications of multiple
spine surgeries have appeared and changed and remained the same for the
last several years: Cauda Equine Syndrome; chronic pain and depression;
suspected mild fibromyalgia,; blah, blah, blah…
learned some of your oldest friends completely disappear because they
can’t cope with the "new you" and others find their way back to
discover you aren’t the same you they once knew. Sometimes, you’re
lucky and they take the time to get to know you again. Sometimes,
I have learned that within the "disabled community" there is discrimination. For
example, I have been told I am not really disabled because I am not in
a wheelchair or paralyzed in someway. I have been told that because I
appear to function fairly well most of the time and work hard not to
let my disabilities interfere with my life, I must not hurt as bad or
be as disabled as I tell people. These things have been said to me by
other people with and without disabilities. It’s as though because I
can walk, control my pain fairly well through drug therapy and sheer
endurance, and manage to keep a smile on face and a sense of humor most
of the time, I can’t be as disabled as I say.
have also learned there are people who want to stay disabled not only
in body but in mind. They remain stuck for the rest of their lives in
chronic pain support groups and chasing the illusion of the magic pill
that will make it so they can "live life again". I’ve relearned the
vast difference in powerlessness and helplessness. If I had spent the
last several years waiting around "to live again" instead of just
living again regardless of circumstances or pride, I would still be
also learned I can’t abide the attitudes and excuses that exist for
people with disabilities which prevent and in some cases enable them
from having any expectations of what they can do or accomplish. Anyone
who knows me, knows that I have a special place in my heart for people
who live with cerebral palsy and autism. "Normal" people mistakenly
think this is because I feel sorry or them or because I think their
disabilities are "worse" than mine. I do not feel sorry for them nor do
I believe they have it worse than me. I’ve learned the severity of a
disability is largely relative to the person who is living with it.
Plainly put, I am inspired by the sheer determination and hope of the
people I know who live with these challenges and who do not allow other
people’s lack of expectations limit what they expect of themselves.
have learned that art and writing are my strongest, best and most
effective in my arsenal of pain management. (The collage to your left
for instance got me a new anti-dressant when I hauled it in to show it
to my headshrinker..heh.) Often I can work on a collage or assemblage
or essay for several hours before I realize it’s time for a pain pill
or a rest. Art was and continues to be a huge part of my healing
process. It helps me feel more centered and serene and continues to
sustain me through challenges and changes. It has allowed me to take
the small steps that were necessary for me to reconnect with the world
after my injury. The more I create; I become more familiar with my art
and the creative process. If I had not had my visual art to retreat to
for solace and expression in the months when I was unable to sit and
write, I can’t imagine I would have been able to make the strides in
healing and confidence I now have in my work and in my new life.
learned that love really does play an important part of healing well.
Without Manthing ‘s quiet, steady support, I doubt my recovery from the
spine surgeries would have gone well. It wasn’t easy but he stood
beside me and supported me, often without my realizing it. Without his
love and caring I doubt my recovery from the spine surgeries and all
their complications, would have gone well as well as they did. It
wasn’t easy but he stood beside me and supported me and loved me when I
felt unlovable. And still does. Everyday.
Maybe I have come to understand I will never climb a pyramid in Egypt
or visit Antarctica. I may never be the woman I once dreamed I would
become or even the kind, bohemian grandmother who lives down the street
doling out irreverant wisdom to inquiring minds. I may never write the
best selling book that will help millions. I will never be a saint. But
I will always be a good listener, a faithful friend, one who speaks
straight and often true, one whose word can be trusted, one who loves
wholly and one who never truly loses faith or abandons hope entirely. I
will always stand for the weak, speak for those who have no voice, work
to protect the innocent. And I will always be a person filled
conflicting and sometimes contradictory characteristics, a person prone
to deep solitudes, tinged with sadness, a person whose life is filled
with moments of gorgeous brilliance, happy accidents and moments of
impenetrable, inconsolable darkness. I am more than I ever hoped to be
but less than I have dreamed.
And there’s a good chance none of it would have happened, none of it would have been realized, if I hadn’t become disabled.
*All of theses images are assemblages and collages created by me about my disability.