Monday, Dec. 1, was World AIDS Day. If you had told me six
years ago that I would be writing a piece for this day; if you had told me that
AIDS would have an impact on my life, I would have told you that you were
crazy. But after six long years, I realize the importance of sharing my story.
Not the bits and pieces that some of my friends may know, but the whole story.
When I was seven, my mother passed away
unexpectedly. As I was a fragile child coping with the loss of her mother, the arrival
of a brother who was two months premature and the overall change of routine in
her life, my father protected me. The explanation I was given was that my
mother had died of cancer, plain and simple.
Seven years later, when I was 14,
I sobbed as my father told me the truth: My mother had not died of cancer, but
rather of AIDS. She was unfaithful, contracted HIV and allowed her condition
to worsen for fear of disappointing family and friends and of coming to terms with
herself and her actions.
It is not until lying on her deathbed
unable to talk that she found the courage to tell her story. But it was too
took me six years to tell my story because I was afraid. Afraid of public
opinion in regards to my mother’s decisions, afraid of isolation by a society
that misunderstands the disease and afraid of what opening up would,
again, engender in me. I had buried the realities of the situation—the
consequences of one person’s actions and society’s stigmatization of a
disease—so deeply that I failed to realize the weight that my voice could have in
changing the things I had so feared. As
they say, “If you aren’t part of the solution, you are part of the problem.”
I was part of the problem, sweeping
the disease under a rug, afraid.
I tell this story today because I have finally been able to reflect and heal. Though I was fortunate in many
ways—my father and brother were HIV-negative and healthy—my world, my core was
shattered immediately after learning the truth. How could my father lie to me?
How could my mother lie to us? It
took me six years to put the pieces back together. The stigma that comes with
AIDS, the stigma that shamed my mother into hiding her condition, is one that
needs to be broken.
By telling my story, I am humanizing the
word AIDS, splintering the perception that those who contract the disease are only ‘sinners;’ far off ‘uncivilized’ people in Africa struggling for survival; gay
men; prostitutes; young people making poor sexual decisions. By using my voice
today, I hope to act as an example to those who are afraid—afraid of speaking
up against society’s opinions, afraid of exposing what is seen as a ‘dirty’ or ‘dark’ secret. Only you have the right to judge your situation, and only your
voice can change the misrepresentations that so many hold.
The people who live with and die from
AIDS are our mothers, our fathers, our sisters, brothers, aunts, uncles and
neighbors. They love, laugh, cry, sing, dance, shout and dream.
They, too, are human. And so, human to human, one person and one story at a
time, it is time to break the stigma.
So here’s to my mom: a compassionate,
graceful, gentle, charismatic and loving human being. Here’s to the woman who
taught me to always smile, to carry myself with confidence and to never
settle. Here’s to the long days at the beach, homemade mother-daughter cooking show videos, silly made-up songs, princess parties and movie nights. Here’s to
my best friend, my inspiration and my strength, always.
In honor of my mother, our desire to
break the silence and share our story, and our motivation to fight the spread
of the disease, my father Joe Fotso and I are donating 50 percent of profits
from the sale of his memoir, Hurt, to mothers2mothers, an organization that strives
to reduce mother-to-child HIV transmission by first breaking the stigma and the
silence around the illness in communities.
I encourage you all to share my story
here and through other avenues and to internalize its weight and meaning. I
also encourage you to not be afraid to talk to me and ask me questions. One
person, one story at a time, we can change the way AIDS is perceived.
Milly Fotso CM ’16 is an organizational studies major and the co-founder of SHARE, a nonprofit organization that aims to improve healthcare conditions in developing nations. She was born in Cameroon and currently resides in the suburbs of Chicago.