STORIES

Hello, everyone. My name is Noelle Simeon. I have been living with HIV since I was two weeks old.

Back in November 1982, my mom was attending a routine ultrasound close to her due date. Her excitement of soon meeting her first child quickly turned to dread when it was discovered some of my intestines and other organs were on the outside of my belly, a condition called gastroschisis. An emergency c-section was ordered for a few days later. My birth was complicated, to say the least.

The first year of my life was spent in and out of the hospital with six surgeries and a blood transfusion. The main surgeon didn’t want to go through a possibly lengthy process of getting blood from my immediate family, so he recommended using the hospital’s blood bank.  Now, this is a world-renowned hospital with some of the best surgeons, so my parents listened.

A few years later, my parents received a letter stating that because I received a blood transfusion, I should get tested for HIV. When the test result came back positive, the hospital suggested my parents keep my HIV+ status a secret to protect me from being alienated from our family or friends.

Ryan White, the middle school student who was banned from attending his school because he was HIV+, was freshly in the news, so my parents listened … at least for a little while.  My mom told a few of her close friends whose girls were in my Girl Scouts troop, which quickly led to the entire troop finding out.

An emergency meeting was called. My parents organized for my doctor and another infectious disease doctor to come and educate the parents and Girl Scout leaders. Although only a few felt uncomfortable with me staying, as they didn’t want their daughters to get attached to someone who was just going to die, my parents chose to take me out of the troop. They didn’t want to stir any trouble.

Eventually, the rest of my family found out about my HIV status.  I was loved and cared for, never feeling ostracized or unloved by anyone in my family.  They are my biggest supporters to this day, and for that, I am forever grateful.

Growing up HIV+ was very alienating in other ways, however. Due to my health, I didn’t go to regular school and was home-schooled for a large chunk of my childhood. I didn’t attend school until about the third grade, and went to my first public school in seventh grade. Until then, my days were mostly spent by myself unless my cousins or family friends with kids were getting together with my parents.

But my lack of social interaction was changed when my parents found Paul Newman’s Hole in the Wall Gang Camp and Camp Laurel. Hole in the Wall Gang Camp is a camp for children with any kind of disease. It was in beautiful Connecticut, its sole location at the time, and I got to fly by myself for the first time in my life.

I remember thinking how green the ground looked as we landed. Camp Laurel is a camp specifically for kids infected with or affected by HIV/AIDS, so direct family members like my younger sister could also attend.

We didn’t need to worry about remembering to take our medications because the staff and counselors kept track. We could just be kids, and run and play and sing camp songs and ride horses and learn to fish and have our first crush and first kisses and tell campfire stories. They were the best summers of my entire childhood.

At one of these camps, I met a girl who was also blood-transfused with HIV at the same hospital as me.  Her name was Anique, and she had been going to Hole in the Wall Gang Camp for a few years. Her last wish was to go for one last summer, and so her parents made it happen.

We had never met before, but there was an instant kinship felt between us. Anique even gave me a present: a cute, stuffed bunny that I named Benjamin. Unfortunately, she didn’t survive the drive back home and passed away.

Hers was the first death I experienced.  I remember her coffin was so small, and it scared me without me really understanding why. I was nine.  I still have Benjamin.

It was not my last death of kids from camp. I still remember and think of them often.  Some of their names are Nathan, Billy, Dawn and Raytasha.

Living with HIV when you’re young is interesting. There is no specific time or incident I really remember, but my mom would explain that I had “special blood,” so if I were to ever fall or get cut, I should not let anyone touch it.

I could never be blood brothers or sisters with anyone. When I was a teenager, my doctors told me not to kiss anyone, as my braces could cause me to bleed.

A very small circle of my friends knew about my HIV status when I was in middle and high school, and a few teachers who I deemed to be “cool.”  The stigma surrounding HIV made me reluctant to tell many people.

As I got older, I told more and more friends, growing more and more tired of curbing my conversations and hiding my medications. In 2020, I flat-out went public with my HIV status, posting a lengthy letter on my personal blog and social media.  The pandemic made me realize that if I wanted to be protected, then I would have to be honest with everyone I have in my life.

HIV/AIDS affects everyone who has it differently, but there’s this underbelly of shame that is carried with each person. My current therapist has experience with the HIV/AIDS community, and with her help, I’ve been able to let go of some of that shame.

I believe living with any disease creates a kind of continuous trauma of explaining yourself, fighting for your medical rights, and feeling side-effects from treatments and medications.

Therapy has made  me see how hard it is even to speak about my feelings about having HIV, as I am never asked how it makes me feel. I’m used to telling my story, but those are all the facts and bullet points, not the emotional tolls or daily consequences that are paid. Even writing this has stirred a lot of uncomfortable feelings.

But, I believe having HIV has given me a strength and fortitude that I wouldn’t have otherwise. The people and experiences and hope I have felt is unbelievable.

Being told for most of your life that it’s a miracle you are even here is very humbling. It makes you want to treasure the blessings and the failures in life, because at least you’re here to fail or succeed, because there are so many who aren’t here any longer.