May 2nd, 2010 09:52 EST
A Personal Perspective of Life with an Invisible Disability
I write this article as an attempt to raise the awareness of a medical fact. There are those among us who suffer invisible disability and, as such, seem to ghost through life without being useful members of our busy society. In fact, they seem to have gotten away with the chores of life and could be seen to be slacking off or avoiding responsibility.
I am one of these people with invisible disability. I do not have a missing limb. I am not in a wheel chair. Instead I do have a golf ball sized hole in the right frontal lobe of my brain. Surgery and treatment has left me in a disabled condition, officially recognized by the Federal Government. Yet, I can walk, talk and chew gum " which is where all of the trouble starts. If I can do these three things then I should be able to work, run, and leap smallish buildings in a bound and a half.
The reality is, however, that the damage from surgery and treatment restricts my ability to do certain things. While I am aware of these limits because of diminished neurological capacity, the average person observing my actions would not realize the internal neurological conflict that limits normal interactions with life. A recent visit to family members overseas created an atmosphere of confusion as to what was really wrong with me. Other friends and family have failed to see the damage and therefore do not understand the limits that govern my life.
At first, I thought that I was the only invisibly disabled person suffering from a lack of understanding by others. But a talk with my friend Anna in the UK (who suffers from vertigo) revealed a commonality in people`s reaction to our invisible disability. Some people in Anna`s life do not understand why she cannot drive. After all, she only has this balance thing going on so why not jump in the car and come down to the pub? Anna`s reality is much like mine.
Neurological limits (invisible to those outside our bodies) prevent us from driving, climbing ladders, completing sentences, etc. We are of the opinion that there are some people who do not understand but that there is a certain element who do not want to understand because they cannot see the disability. Anna and I feel that we are perceived as charlatans by these people, like some sort of medieval conjurors who have taken a magic elixir in order to avoid responsibility and live off medical pensions.
Then, a few nights ago at a restaurant, I met a lady who is recovering from the ravages of ovarian cancer. She too has an invisible disability as a result of treatment. She too has friends and family who have an odd perception on her illness. She identified immediately with the experiences of both Anna and I. Her fatigue and low morale is sometimes seen as an excuse to not participate in life. Her whole demeanor changed as we talked about invisible disability and I could she was strongly identifying with the scenarios I described to her from my own life.
It is a sad comment on our society that certain people do not understand a disability that cannot be seen or readily identified. There are times when Anna and I feel that we have a stigma because we do not fit into the neat cookie cutter perception of a real " disability. People who have made a miraculous recovery from illness, like Lance Armstrong, have not helped. Lance was able to endure a remarkable recovery from his cancer and went on to accomplish astounding results in both life and cycling career. It is depressing to have the Lance scenario used as a comparison to our own slow, arduous battle with the internal damages wrought upon our bodies. I was actually told recently:
"Look at what Lance Armstrong did. He had brain cancer as well you know."
A neighbor recently had a recurrence of metastasized breast cancer. She too has endured a lack of understanding by family. She too has had the Lance Armstrong situation used as a comparison to her own disability. As she now fights this recurrence with chemotherapy, she too faces the invisible disability syndrome and the attendant innuendo and societal prejudice.
And then there is another kind lady in my life who has become a good friend through my writing experience. She suffers from chronic PTSD. She avoids stress and worries about people finding out about her illness as it is not taken seriously. Her invisible illness has its own twists and turns but again parallels the experiences of those discussed in this article.
To those who do not understand or do not want to understand the life of those of us with invisible disability, I would like to leave you with the words of a Paul Simon song:
. . . "a bad day is when I lie in the bed and I think of things that might have been."