When I was
invited to attend this event as a sickle cell patient, I hesitated. In all my
29 years of living with sickle cell disease, I never tried to be part of
"patients' society".
It was
enough for me to get a crisis every couple of months and then live a normal
life forgetting about the pain until the next crisis. I didn't like to be
reminded of my weakness. Until I met Mr. Zakariya Khadem, who told me
otherwise. I've been told that I'm a hero.
A hero for
waking up every day. A hero for smiling despite the pain. A hero for finishing
school. A hero for being an Architect. "People study hard to be
architects, but you studied extra hard because you were fighting to study and
fighting sickle cell disease at the same time." he said.
"How
many times have you attended class with a crisis?" He asked me.
"Many
times" was my reply.
I am a Hero.
But I still
am lucky for that others suffered more, had more frequent attacks, dropped out
of school and been told they are less than everybody else just because they
were sick. It is for them I am here today, to tell them otherwise.
Ladies,
Gents, and heroes....
Life can get
rough with sickle cell for it is not something you choose. It's not a disease
you bring upon yourself. It's a gene you are born with and have to learn to
accept as part of your life; part of yourself. SCD patients never knew what
it's like to be healthy; what it's like to enjoy the smallest gifts of life
without getting sick.
Everyone
loves the snow.
I was
thrilled to be walking on snow for the first time in my life. Then I slipped,
fell down and went to hospital the same minute suffering a severe crisis.
I would love
to ski someday, if my bones allow me. But I doubt they can take it.
Smallest
gifts of life.
I was four
when my parents found out I had SCD. I had fallen off a bike and started crying
because of leg pain. I was never allowed to own a bike after that.
Smallest
gifts of life.
But of
course, being the stubborn kid I always been, that didn't stop me. Last year, I
bought a bike. I'm old enough to own a bike I guess. Been riding it for a year
now. Been having more frequent crisis, but I still ride. Drs tell me biking is
not good for my hip necrosis. They fail to understand the basic need of a child
to simply bike.
Before I
leave you, I'd like to share a story.
Every life
has a story, and his was the one that kept me going.
I learnt at
a young age that sickle cell disease patients don't live long & that to
survive your twenties would be a bless. I was 8 when I met him. He was in the
same hospital room as I was. He would carry his chess table and come over to my
bed and play with me. He taught me chess. At the age of 8, I watched him die. I
watched as they try to resuscitate him, 6 doctors, many nurses and a weeping
mother. He laid still in front of me. I watched as they pull the sheets over
his still body and take him away.
I grew up.
Survived high school. And thought of him. Went abroad to do my bachelors where
I survived the worst crisis of my life that left me unable to walk or speak
properly. I had to skip a semester, come back home and physiotherapy my walk
and my voice.
I wasn't
sad. I was 22 and alive and I thought of him.
Received my
bachelors. I thought of him again. Started working. Got engaged. Even as I
stand here today, I think of him.
The same boy
who lost a chance on life, when I still live.
Every time I
came close to death, and after every major crisis, I would open my eyes,
remember him and think "I'm still here. I still have work to do."
He is my
inspiring thought.
Let yourself
be inspired today. Find the piece that inspires you the most and buy it. Your
money can't cure us, but it can sure help ease our pain.
Thank you
all for being here tonight. Thank you for all the love and the care. Thank you
for your art. Thank you for your money and all the beautiful smiles.
Help us sell
the auction for every sickle cell child and for every patient who survived
childhood and grew to be an adult.
Thank you
A speech I gave at an art auction called "Every Life Has a Story" dedicated to Sickle Cell Disease 30th May 2012, Bahrain
