| In
October 1991, I received a call from my father that changed
our lives - one I will always remember. My mother had gone
to Mayo Clinic where she was diagnosed with hepatitis C. Her
liver was failing, which I later learned explained the years
of fatigue, itching, abdominal bloating and memory loss. Reviewing
her life, a history filled with dedication to wellness, it
was determined that, given the advanced stage of this disease,
she had probably contracted it from a blood transfusion during
a gall bladder surgery in 1949.
From 1991 through
1998, I watched my mother slowly become a shadow of the woman
I knew. Each day she faded from view as the disease began
to ravage her body. Simple conversations tired her to the
point where she would spend hours recovering in bed.
I went home for
Thanksgiving in 1997 feeling it may be the last Thanksgiving
I would spend with her. I was right. That is how insidious
this disease can be. We took pictures and cut pie together
on Christmas Day 1997. She passed away Jan. 24, 1998.
During the last
years of my mother’s life, conversations about HCV rarely
came up. My family was in denial, unable to face the possibilities,
yet alone the blatant realities. With my mom’s death
came the end of any talk about hepatitis C. My small-town
family was experiencing the fear and shame many of us still
do. I experienced anger, fear, sadness, which escalated while
sitting at my mother’s bedside watching her take her
last breath. Will my daughter experience this same ugliness?
Little did I know how important educating myself would be.
Had my mother given
birth to me, I could have been infected at birth. But since
I was adopted, that was not the case. I remember all the times
I would try to be like my mom, enthusiastically brushing my
teeth (grabbing the wrong toothbrush), or in spite of her
protests, using her razor to shave my legs. In all the times
I used my mom’s items, neither one of us knew the silent
killer that was quietly stealing my mother’s life away,
and perhaps now starting to steal mine.
After the initial
shock of receiving my diagnosis, I was sent home with no information.
In fact, I stopped at a store on the way home to buy rubber
gloves to peel the potatoes for dinner that night. I felt
“diseased.” I was cautious about with whom I shared
my “secret.” I think in part I was leery because
I had no information to back it up. How could I tell someone
I was HCV positive and expect them to understand what that
meant any better than I did?
Without proper
education, the stigma present for the HCV community resembles
that which was experienced in the early years of AIDS. I lived
the ignorance this diagnosis carries. Many of our lives are
filled with questions about IV drug use and comments such
as, “Can we drink from the same glass?” The misinformation,
which still exists around HCV infection, is astonishing. People
still associate bad oysters and fecal matter with HCV. When
you add the stigma of being HCV positive to the “how
did I get it?” syndrome, you have a recipe for disaster
and heart break.
Early in my diagnosis,
the “flu- like” symptoms and fluctuating nature
of the disease compounded my fear and sent me on an emotional
roller coaster. In beginning my treatment, language like LFTs,
PCRs and genotypes were all a foreign language to me that
sent me spiraling into depression. |
