Eventually, we went on with
our lives with all seven kids actively involved in sports. Then on
November 19, 1990, when I was twelve and in sixth grade, I arrived home
from my parochial school basketball game to find that my sixteen year-old
sister had suddenly collapsed and died during her first day of varsity
basketball practice. The autopsy revealed an enlarged heart, and,
after concentrated research on the part of some of the top cardiologists
in the country, the disease was diagnosed: Arrhythmogenic Right Ventricular
Dysplasia (ARVD).
Not more than a week later, my entire family
traveled to NYU’s Cornell Medical Center to be tested once more.
To our dismay, my then fourteen year-old sister's MRI and biopsy both turned
out positive. The doctors were baffled because neither of my parents
showed any trace of the disease. ARVD, which originated in southern
Italy, is extremely rare in the United States and is not known to skip
generations. It seems that ARVD, although present at birth, does
not appear until adolescence, and when it does, the first symptom is most
often the last: sudden death. Now we knew why my sisters' tests following
my brother's death were normal, although they both suffered from the disease.
A freshman in high school, my sister
was required to cease all physical activities. For many people, this
requirement may have seemed trivial or inconvenient, but for my sister,
who was heavily involved in sports and an avid runner, this was, as she
put it, "a punishment worse than dying." In addition, she immediately underwent
open-heart surgery to implant a cardiac defibrillator in case her heart
should enter into an irregular rhythm. Her physical recovery was long and
hard, but the psychological effects of her ordeal were even worse.
Depression resulted from the knowledge that
she would never be able to return to competitive athletics and from the
reminder of her condition in the well-defined shape of a defibrillator
the size of a walkman protruding from her abdomen. She would have
temper tantrums in dressing rooms, and shopping for prom dresses
and bathing suits was nearly impossible. Although she had a size four waist,
she frequently had to buy clothes up to a size eight in order to be comfortable.
I was always sympathetic, even though I remember wondering to myself why
she complained and thinking that she should be happy that she's alive.
How could I understand what she was going
through?
Meanwhile, I continued in my athletic
pursuits. Although my sister was my biggest fan, it seemed
so hard for her to sit on the sidelines watching me on the court.
When I would come home from a game, complaining about my performance or
about a referee's call, she would remain silent. I just figured she
had lost interest in sports. Starting as a freshman in high school on both
the varsity soccer and basketball teams, I was already hearing talk of
college scholarships. My coaches, family, and most especially, myself
had huge expectations for me.
In the meantime, I continued medical testing
every six months. All my tests during my freshman year were negative,
so it was assumed that I would not come down with ARVD, since at that same
age, my sister's tests had revealed her diseased heart. There was
no doubt in my mind that I was healthy. I was running six miles a
day, playing sports, and had no signs of fatigue or "missed beats” that
were so evident in my sister.
The day before my first basketball game of
sophomore year I went into New York with my mother and oldest sister for
what I thought would be routine testing. We arrived at the hospital at
nine in the morning. Because I was resistant to the type of anesthesia
I received, I was in complete agony for the hour it took the doctors to
complete my biopsy. In addition, I found I was allergic to the injected
contrast dye when I suddenly couldn't breathe. I thought I was dying…right
there on the table.
Since I am extremely claustrophobic, I am
not particularly fond of MRI's. And because the doctor discovered
a few questionable places on my heart, I was kept in the MRI tube for an
hour-and-a-half! The day finally over, we left the hospital and did
not arrive home until nine o'clock that night.
The very next day, as I was changing into
my basketball uniform- I answered the phone to hear my cardiologist's voice
on the other end. As usual, I put my father on the phone. Feeling
curious, however, I decided to eavesdrop to assure that his news confirmed
my expectations of normal test results.
That one phone call changed my life forever.
My MRI and biopsy were abnormal. I, too,
had ARVD.
In addition to learning that I would have
to undergo open-heart surgery just after Christmas, I was told I could
no longer participate in any competitive sports. These words brought my
entire world crashing down around me. Although both scared and angry, I
tried to be strong to cushion this shocking blow to the rest of my family,
and I quickly became very skillful at keeping my emotions inside.
On January 4th, 1994, I underwent open-heart
surgery to receive an implanted defibrillator. The stretcher ride
down the corridor to the operating room seemed like the longest one of
my life, and as I watched my family disappear out of sight, a mixture of
fear and doubt filled my head. Thoughts like, "Will I ever see them
again?" continually ran through my mind. My bladder was paralyzed
for awhile as a side effect of the anesthesia, but the operation was free
of any other complications and after a week-long stay, I returned home.
My recovery was hard and involved frequent
trips back to the hospital. Although the physical healing and discomfort
was difficult to endure, the psychological effect of the harsh reality
of the disease itself was a much greater burden.
Opening my closet to find that my clothes
no longer fit around my waist and realizing that I had gone from a size
five to a size eight was frustrating. Wearing a bikini to the beach
provoked startled stares and comments like “ooh, that’s so gross!”. And
my inability to walk through metal detectors proved embarrassing
at airports and amusement parks.
I joined my sister on the sidelines, and
my outlook that had been so narrow shifted dramatically. Now I could
actually feel how difficult it was to be a spectator. I now understood
why my sister would turn silent when I would complain about the outcome
of a game. My stomach would churn when my friends would moan about
lack of playing time or bad performances and I would think, "What are they
complaining about? At least they're able to play."
My battle with a critical illness changed
my perspective on life. I felt like I grew up at least twice as fast as
the other kids my age. They would start their days with thoughts
of boyfriends and shopping, while I would wake up each morning thinking
how lucky I was to be alive. I was able to appreciate life so much
more because I realized how easily it could be taken away from me. Although
it took me a while to recognize it, this outlook was an incredible gift.
For all that I had lost from my struggle with ARVD, I had gained in the
opportunity to recognize and appreciate the important things in life.
Although my family, friends, and even doctors
were extremely sympathetic and tried to understand what we were going through,
it seemed that my sister was the only one who could truly empathize with
me. I came to realize that those who have encountered serious illnesses
can relate to each other so well because they have so much more in common.
They can understand the fears, doubts, and frustrations that accompany
such illnesses because they have experienced them on a personal level.
As I have learned from my experience, illness
involves both a feeling of loss and an incredible sense of opportunity.
All that you lose or gain in your struggle with an illness, both physically
and emotionally, stays with you for the rest of your life. As my
defibrillator has thankfully only had to discharge once, I still hold the
fear in the back of my mind that it could shock me at any time. Naturally,
I am apprehensive about the chance that one morning I might not wake up
or that my defibrillator might not do its job.
Even at nineteen years old, I already worry
that my kids, someday, will also be born with ARVD and have to go through
what I've been through. These thoughts are with me now and will probably
stay with me. However, my determination to appreciate each new day for
simply being just that and my ability to recognize the truly important
things in life will remain with me as well
Mom and me
Want
to learn more?
