“If you had the luck of the Irish, you’d be sorry and
wish you were dead.
You should have the luck of the Irish, you would wish
you was English instead.” Lennon/Ono
I
have taken the day off and resolved (again) to start writing about my life as a
housecleaner with Grave’s Disease.
Yesterday was a day of worrying about what my customers think of
me. When my neurology customer asked me
how I was feeling and I said fine but shaky, he took my pulse and said it was
“a little fast but strong, no fibrillation.”
To a person free of all but
the normal anxiety about paying bills and getting the kid into a decent college
that news would be reassuring, but in my case I was robbed of the one physical
explanation I had for the mysterious feeling that haunts me under the
breastbone and grows to an intense pain in my neck, head and eyes in irregular
cycles. I spent the rest of the day in
circular thoughts wondering what was causing the sensation in my chest if it
was not related to the heart and resisting the impulse to defend myself against
the logical conclusion that I have hypochondria. By the end of the day I returned to the Wikipedia
article on Grave’s Disease that I’ve read twice before and was reminded of the tears
that popped from my sore eyes the first time I read it.
It has been my plan for
several years to write about my life as a house cleaner and tell the story of
how I grew up in the nurturing atmosphere of my customers’ homes, strengthened
by their kindness and inspired by their patience. Now that I have been living for 3 years with
the knowledge that I carry this chemical difference, and have had some time to
consider the various ways it has affected my moods and behavior, I realize how
important it is for someone to tell the story of what it’s like to live with
Grave’s Disease.
Today the awareness that
shines most brightly for me is my appreciation for both this condition and
modern medical science. I sometimes say
condition because calling it a disease contradicts my feeling that I am lucky
to have it. I am reminded of the students
at Gallaudet University who protested the hiring of a hearing person as
leader of their institution in 1988, beginning the ‘Deaf President Now’
movement; their demands for a deaf university president raised awareness of a culture
that chooses to regard difference as an opportunity rather than a disability. To receive a diagnosis of Grave’s Disease at
the age of 51 after the body has been revved up by the effects of an over
active thyroid for many years, is the same as being diagnosed with a mental
illness that bears a shameful stigma. It
is handled very much in the same way that people once handled the diagnosis of
cancer back in the days when it was a death sentence carefully guarded from the
patient.
In other words, I was never
told I had Grave’s Disease. I had to put
the puzzle pieces, which by mere chance fell in front of me, together. If I had not repeatedly sought out available
literature and asked questions of medical professionals, and if a friendly
radiology technician had not told me the story of a fellow soldier’s mental
breakdown, I would never have received an explanation for the wild mood swings
and intense bouts of pain that I have lived with for years; I would be just
another confused woman unable to control herself.
Mother without a License
When I discovered that I was
pregnant at the age of 36, without health insurance, savings, or any other
trappings of the corporate dream, I went to the county clinic. Other than STD clinics I had never patronized medical establishments, but I liked the
waiting mothers’ clinic; I liked seeing the various parents and guardians with
infants and toddlers that circulated every month, just like me, through the
waiting room and lab stations. Eventually,
I even liked being called ‘mom’ by the workers in the clinic, after wrestling
with the inner conflict of feeling like a comrade in a state reproductive
program and deciding that I could resist the repeated appellation as a social
rank or let it help me prepare for the new life I was trying to fathom. How in the world one of those small turkeys would
come out of me was too frightening to consider.
I chose instead to meditate on the variety of women progressing through
stages of abdominal growth and scolding restless children, and trust that if
they could do it, somehow I would manage too.
Every month I was given two pages
with a drawing of the corresponding developmental stage of the fetus. I loved studying all the information and
projecting where I was in my journey to motherhood, I loved telling my guy
about the latest scientific gem that I had gleaned from the handouts or a book
from the library. I was uncomfortable
accepting the WIC coupons that I was automatically signed up for and found the
bureaucratic labyrinth I was subjected to every three months to collect them
tedious, but like an embedded journalist I never missed an opportunity to sit
in the waiting room and go through the experience of being told how I should
plan and prepare meals for my family. I
learned a lot about government funded prenatal care and became a big fan of
Jimmy Carter. It was the last 2 weeks of
the pregnancy and delivery that opened my eyes to why the American medical
institution is casually demonized by the same people who can’t seem to get
enough of it.
Ever since I was literally
restrained in a hospital bed for the birth of my son I have been engaged in an
uneasy standoff with the institutions that are the pride of the average
American and yet the first target for blame when lives are compromised or
lost. This account of my life with a
difference called a disease is not an indictment of science, American health
care, or the medical community. It is the
story of my effort to make the best of the body I was given, and take pride in
the woman I am.
Name Your Poison
Grave’s Disease is a name
commonly used in America for the autoimmune condition which causes the thyroid
to produce thyroid hormone indiscriminately.
Robert Graves was a revered Irish physician of British ancestry who
published a two page article in 1835 describing 3 women suffering from heart palpitations
accompanied by enlargement of the thyroid gland. There are, however, earlier descriptions of
the condition in medical literature, including one in the 12th
century Thesaurus of the Shah of Khwarazm by Al-Jurjani.