My introduction to epilepsy didnt come from a fall on
the bathroom floor, or an inability to move or speak.
It began with one terrifying phone call.
I was thirteen years old, spending
the summer with my dad when
my aunt called. My mother, Wanda,
had suffered a seizure and was in
Intensive Care. Scared to death, all I
wanted was to return home to be by my
mom’s side. However, my father did not
think it was important enough to cut short
my visit with him. It was the first of many
times that someone would underestimate
the seriousness of my mother’s struggles.
At the time of my mother’s epilepsy
diagnosis, she had already been struggling
with other health problems. At the age of
thirty, soon after my birth, my mother had
a stroke. Left permanently disabled, this was
the beginning of a life-long battle including
many trips to emergency rooms and much
unpredictability in our lives. I never knew
when I would have to call an ambulance,
help my mom get to the hospital, and try to
stay calm in the process. To make matters
worse, we dealt with the constant stress of
our dire financial situation, in part due to the
staggering cost of treating my mother’s medical
problems. I silently prayed for a “normal”
childhood—one with a healthy parent who
didn’t require me to be a mini-adult.
After learning of that first seizure and
then her diagnosis of epilepsy, I had no idea
what to expect. I didn’t know how my life
might change. I was inundated with brochures
and leaflets at the hospital describing
how to cope with epilepsy. She was advised
to attend a series of support group meetings
at which she was repeatedly told how she
could “live” with epilepsy.
And my mother did live—for the next
eleven years—with infrequent seizures
and a daily “cocktail” of high-powered
medications. However, just weeks after her
fifty-third birthday, my mother suffered two
major seizures. Her body never recovered,
and she passed away six weeks later.
After her death, I could never quite
escape the thought that maybe something
could have been done to extend her life if
only there had been a focus on curing her
illness rather than simply relying on pills
to control it. Maybe, if we hadn’t been so
accepting of the diagnosis and focusing on
how to “live” with it, we would not have
been so tolerant of the occasional seizures and the debilitating side effects. I believe
children with family members who have
epilepsy are often forgotten victims of
this devastating disease. There were no
support groups for me—nobody to answer
all the questions or address all the fears that
raced through my mind. As my mother’s
only child and often the person present
when she was most in need, I never felt
completely comfortable disclosing my
fears and concerns about her illness.
I also struggled with speaking to family
about the cause of my mother’s death.
Though a shock to us all, her departure
was in some ways considered an inevitable
ending to a long battle with illness.
I wrestled with the notion that my
mother had been silently suffering for
years—that her epilepsy caused her more
grief than any of us knew. This was confirmed
when I found a journal she had kept
in the final year of her life. It was clear that
she meekly, yet stubbornly, suffered from
silent warning signs—loss of consciousness,
memory loss—but worked diligently to hide
them from me and from others. It broke my
heart to feel that while I was away at college,
embarking on my journey into adulthood,
my mom was struggling all alone.
When I found CURE, it released so
many thoughts I had held inside for years.
Why did we simply accept the status quo?
Why were we OK believing that the best
we could do was to live with the diagnosis
of epilepsy, which included breakthrough
seizures and medication side effects? Why
had I never heard anyone speak about a
cure, or even a “race for a cure”? Why did
we settle for simply pouring medication
after medication into my mother in a vain
attempt to control her seizures? In my heart,
I knew I had found an organization that
was on the right track. We can and must
work together to find a cure.
My mother’s seizures should not
have been treated as inevitable, just as
her death should not have been viewed as
inevitable. In CURE, I have found hope
for all patients and family members who
suffer from epilepsy. CURE is the powerful
force needed to make this dream of a cure