I Don't Know Patient Zero, But Patient One is my Mom

I thought everyone’s mother took medicine everyday.  I thought it was normal.  Mothers had babies, so to “stay healthy,” as my mom always said back then, they needed medicine.  I thought every mom was always tired because of their medicine.  I thought everyone’s mom’s hair fell out in clumps tangled into their hairbrushes that you found when you went to pee in your parents’ bathroom.  I thought everyone’s mom stayed up at night, reading through something on the Internet, serious and sad.  I thought everyone’s dad had to rush barefoot to the pharmacy at 12 AM every now and then to pick up mom’s medicine because she really needed it and something went wrong with whoever gave it to her.  I thought it was normal that my mom would call down to me at 11 PM every night from bed, “Beetle can you get me my medicine please? 2 pink, 1 blue, 1 refrigerator.”  I thought all adult pills were that big, “horse pills.”  I thought every mom gave elusive answers about why they took their medicine.  “Mom, why do you take your medicine?”  A long pause, a funny, distant tone, “Don’t worry about it, Beetle.”  “Mom, do you have cancer?”  “No, sweetheart, don’t worry.”  “Mom, do you have HIV?”  She told me not to worry, and I never did.  But worry is easier to quell than wonder. 

I was in eighth grade, thirteen years old.  I remembered the names of two of her medicines—Viracept and Combivir.  She had a meeting after school or something and I was supposed to pick up Jake and take him home.  Her room was empty.  I went to her computer, made sure no one was looking, logged on, searched, found, read, frowned, read again.  I saw words like “antiretroviral” and “HIV.”  My stomach dropped into my shoes.  Fear.  Indescribable fear.  Fear that makes you sharp.  Determination.  I took Jake home.  We were unusually silent on the bus and train that day.  He could tell that something was wrong, but he was too young and afraid to question.  When we got home, I went straight to the phone and with the crack of absolute power that only older siblings can sometimes wield, I commanded Jake to stay in the living room.  Soldier that he is, he acted without hesitation.  I thought this was normal. 

I went into the bedroom my brother and I shared and dialed my mom’s cell.  As the phone rang, I started to feel that same fear creep up my throat from my belly, but I pressed on anyway, determined to hear the truth I had already discovered corroborated from the source.  She picked up.  I didn’t know where to begin. 

“Hi,” I said.

“Hi,” she said back.  “You home?”

“Yeah…” A short pause from the other end—she could tell something was wrong.

“Bee, you ok?”

“Yeah…Mom?  Do, um, do you have HIV?”

It felt like the entire universe was waiting right there with me for her answer.  After eons, her voice returned, heavy with emotion.  “We’ll talk about it when I get home.”

She did have HIV once.  Now she has AIDS.  She’s had it for years, since before I was born.  She got it in college, from a boyfriend.  He was her last partner before my dad.  She found out when I was five, when we lived in Seattle.  We went for some kind of joint check-up; they took some of her blood and she had something like fewer than 50 T cells per microliter.  To me, there is nothing more miraculous than the fact that despite having been breastfed, despite having been birthed naturally, despite the doctors’ lack of knowledge that my mom was HIV or AIDS positive at the time, I am HIV negative.  So is my dad, so is my brother.  My mom continues to take her medicine.  She is healthy.  She is a master teacher.  Her children love her.  She goes running most days, sometimes she’s too tired.  My mother is an amazing person.

She doesn’t want me to write this, so I don’t think I’m going to tell her.  Despite the fact that there is clearly some higher being or force looking out for us (at least on this front—still waiting for that Mega Millions to come through), she is deeply afraid when it comes to public discussion of HIV/AIDS.  Fear is not shame.  She doesn’t really give a fuck what people think of her as long it doesn’t interfere with her family or her work.  She’s afraid of what people will think of and say to Jake and me.  The stigma of the virus being a sort of divine punishment for whores and gays endures.  My mom is neither.  One time she didn’t say anything when the guy didn’t put on a condom and now she has a virus.  There was no promiscuity, no intravenous drugs, no seedy underworld, none of that.  The human immunodeficiency virus and the acquired immune deficiency syndrome are not punishments or manifestations of karma—they are circumstances.

Is being HIV/AIDS positive a big deal?  Yes.  But it sickens me to see how people react whenever these conditions enter the daily discourse.  People with these circumstances are not to be pitied and treated as if they are on their deathbed.  When people learn of my mother’s circumstances, this is often the first reaction.  Even though I know this change in treatment comes from misguided good nature, my instinctual response is generally along the lines of, “Fuck off me, nigga, I’m good and so is she, damn!  We still alive.”  Being thick-skinned and often patient to a fault, however, I usually just accept this change of treatment quietly. 

Then there’s the other extreme: judgment and discomfort.  I haven’t yet encountered anyone dumb enough to blatantly give me this response, but sometimes you can feel the irrational hatred that is bred by fear and ignorance bubbling just beneath the surface.  To the people who read this and feel that, I say this: I pray that you continue to live a blessed and peaceful life.

This eighth grade revelation has come to define much of the man I’m still becoming.  It is difficult for me to worry about many of the same things people my age worry about.  Every night at 11, instead of saying a prayer, I recite my mother’s mantra: 2 pink, 1 blue, 1 refrigerator.  That’s what I’m worried about.  When I’m away at school, or in New Zealand, like I am now, I’m worried that no one will be awake to bring my mom her medicine when she’s in bed.

When my mom received her diagnosis, she didn’t panic.  She didn’t cry, she didn’t break down, she didn’t give up.  She was afraid, yes.  She dreaded the possibility that she might have passed it on to my dad, my brother, or me.  But rather than let the fear consume her, she adopted a new philosophy.  “Keep it moving,” she said.  When faced with a life-changing, potentially life-ending circumstance, she gathered her resolve and resources and transcended the fear and stigma and illness and built a great family with my dad.  My mom is a living testament to the fact that people with HIV/AIDS are not sinners to be reviled, nor are they invalids to be pitied.  They are people who have it tougher than most—but they are still people, and should be treated no differently than anyone.  How can you help someone with HIV/AIDS get through another day?  You can’t, really.  All you can do is what you would for anyone else: you can treat them as you would want to be treated if you lived under the same circumstances.  Apart from that, keep living with these people as you live with everyone else.  Keep it moving.  I carry that phrase with me wherever I go.  Like my mom, I keep it moving.  You should too.