by Paige Rawl
My mom also knew that if it were left unchecked, the HIV virus would turn into AIDS, a disease for which there is no cure. She knew that if that happened, I would be unable to fight even the simplest infections; every system in my body would be ravaged by other viruses and bacteria, by fungal infections, by parasites. Even the common cold would become life threatening. Eventually, I would get an infection that I couldn’t survive.
My mom knew that by the time we met Dr. Cox, AIDS had already killed over eleven million people worldwide, including nearly three million children.
My mother knew all of these things. She couldn’t help but know.
And while doctors’ visits and medicines have always just been there in my own memory—a part of my world for as long as I could remember—my mother’s own journey had a very specific beginning.
For her, there was a before, then an after.
My parents at their wedding.
Mom had grown up on the north side of Indianapolis, just a stone’s throw from the clean lawns and limestone buildings of Butler University. The daughter of a contractor and homemaker, her childhood had been a safe, rather ordinary one, punctuated by the occasional Baptist church service or neighborhood baseball game. She met my dad when she was in her twenties—she was a bartender, and he came in for a drink. He was a former navy officer, the son of a military man. He owned a used car lot and had the friendly charm, the charisma, that makes an outstanding salesman. They talked. He made her laugh. They discovered that they each loved boating and country music.
I think about this now, think about them young and free, sitting in a bar and laughing together. I guess it is always weird to think about your parents young and happy, at the start of a relationship that hasn’t had the chance to see any struggle or grow old. But trust me: it is even weirder when one of them has since given the other one HIV, changing everyone’s life, and future generations, forever.
He seemed like such a nice guy, she says. People always say that, don’t they? They say it later, after the fact. After the person has done something unforgivable. Such a nice guy. Funny. Never would have seen it coming.
They went boating together in Morse Lake and talked some more. He told her he wanted a child. He thought it might be fun to coach Little League someday. And with the wind blowing through her hair, the sun reflecting on the water around them, she dared to imagine a life with him. She grinned at the thought: this handsome man, her husband, coaching a child—their child. She wanted that. She wanted to stand in the bleachers and cheer.
She wanted him.
After they married, my mom helped out at the car lot, answering phones when my dad went to automobile auctions to buy new inventory. Then they had a baby girl together: me.
Brand-new me! August 11, 1994.
By then, the business was doing well. They were earning money—more money than Mom expected.
Who knows, maybe that money was the problem.
Dad started getting jealous, accusing my mom of things she never did, of relationships she never had. No amount of assurance could convince him. He had severe ups and downs, and his behavior became erratic. Money disappeared, and sometimes my father didn’t come home for several days.
He did some stints in rehab. The car business suffered. My mother learned he had been cheating on her. They split up, then got back together. She cried, and he made promises he didn’t keep. Eventually, they broke apart for good.
I don’t remember any of this, of course. Nor do I remember some of the other things my mom has told me: about how I slept well and laughed often. About learning to talk—my first word was “Dada”—then walk, then run.
My first “modeling gig,” sitting in a flashy new car at my parents’ lot.
Mom says she used to hold me at the window in the afternoons. I was fascinated by the yellow school buses that rumbled past, filled with big kids. I squealed with laughter as they passed. Waiting for them, watching them, became a happy ritual for us.
Then came her fevers.
My mother thought perhaps she had the flu. Her body ached, and she felt weak. She couldn’t get warm, yet she broke into sweats. The symptoms were mild at first—she was still diapering me and chasing me, strapping me into my car seat and folding piles of laundry—but she just couldn’t seem to shake this thing, whatever it was.
She visited her doctor a few times. He recommended blood work. They discussed anemia, chronic fatigue.
On the day she came in for her follow-up visit, HIV was the last thing on her mind. After all, she was a Midwestern mother, living in the suburbs. Her life revolved around work and breakfast cereals, around pouring laundry detergent and picking up toys and making beds.
Sure, my dad had struggled. But she hadn’t. So she was totally unprepared for the news the doctor delivered.
“Your blood test results came back,” he said. She tells me his voice was very matter-of-fact. “You are HIV positive.”
My mom helping me dye Easter eggs. At this point, she was still unaware of our HIV status.
I don’t know what those early days after the diagnosis would have been like for her—even now, all these years later, she finds it difficult talking about that time. She tells me that she called her own mother and sobbed into the phone. That her sister drove down from Wisconsin, and she sobbed onto her sister’s shoulder. That she called my father, the only one who could have possibly given her the infection, and sobbed as she told him he needed an HIV test.
She tells me something else: that she was terrified she would leave me motherless. I was two and a half at the time.
And then there came another thought.
Mothers can pass the disease to babies during pregnancy or birth. What if I also . . .
No way, my mother reassured herself. I couldn’t possibly have HIV. After all, I was fat and happy, developing normally. My only health problems had been a couple of routine earaches.
But still. The thought lingered with my mother. What if I was HIV positive, too?
In midsummer, just before my third birthday, Mom brought me to the pediatrician’s office. There, she held me as a technician drew blood from my chubby little arm. Two weeks went by before she called the doctor’s office for the results.
The doctor told her right then, over the phone: I, too, had tested positive for HIV.
She sank down into a chair and started shaking.
Her daughter, her beloved toddler with the pudgy cheeks and the tiny hands stretched toward her in a hug, was infected with a virus that had already killed tens of millions of people—a virus for which there was no cure.
That afternoon, she held me at the window as usual, and I squealed with delight, as usual, when the school buses passed. She kissed the top of my head and held me tightly and tried to fight back the tears that wouldn’t stop coming.
It was those big yellow school buses that got her, she said. She wondered if I would ever get to ride one.
My third birthday. My mom had learned my HIV status just weeks earlier.
Clarkstown
“READY”
2006 was an important year. I was excited to start middle school—and would soon find out about my diagnosis.
On my first day of sixth grade, I was completely and totally giddy. My mom, on the other hand, was a nervous wreck.
“Hurry, Paige,” she shouted from the kitchen. She has a funny way of getting loud when she is stressed out. On this morning, she was so loud that I cringed, even though I was two rooms away, getting ready in the bathroom. “If you don’t have breakfast, you might pass out.”
I rolled my eyes at my own reflection in the mirror. I knew that wasn’t true, I wasn’t going to pass out, just as I knew that I had plenty of time for a decent breakfast.
But I also knew my mother.
Through all of elementary school, Mom had insisted on being right there with me—she was a constant chaperone at field trips, a front-row attendee at plays and concerts. She was the parent who planned the classroom part
ies, who doled out cupcakes and served Dixie Cups of apple juice, who handed out napkins with little squares of brownie, or a tiny handful of potato chips. Every Halloween, she gave each child in my class a small pumpkin to decorate and a plastic bag filled with toys and treats.
She just felt more comfortable when she was by my side—exactly by my side.
But now I was starting Clarkstown Middle School, and she was a mess.
“You know, Mom,” I called out, “you went to Clarkstown and it was just fine.”
“I know, Paige,” she answered back. “But times are different now. The world’s gone all crazy.”
“And your old gym teacher is still there. She’s one of the school counselors, so I’ll probably see her lots.”
I heard a drawer open and shut, the sound of running water in the kitchen.
“You better not,” my mother called. “These days, it’s mostly the bad kids who see counselors. They don’t have any time for the good kids.”
I shook my head. My mom could be so loony tunes sometimes.
“Jeez, Mom. I’ll just be a few blocks down the road. You could practically throw a stone and hit the school.”
“I’m not going to be throwing anything anywhere,” she said. She stepped into the bathroom and handed me a glass of Carnation Instant Breakfast, the drink she has given to me every morning for as long as I can remember. “Here,” she said.
I put down the hairbrush and took as many gulps as I could. I figured I could do at least this much for her. If I didn’t have a big breakfast—this drink before my medicine, a bowl of cereal after—she would be a wreck all morning.
My mom. She gets so nervous, even today.
Mom stepped back and surveyed my outfit. “You look cute,” she said, her voice a little softer this time. “I like those shorts.”
“No more uniforms!” I cheered.
“No more uniforms,” she repeated, a little less enthusiastic than I.
“Yay, Wildcats!”
“Yay, Wildcats,” she said with a sigh. She shook her head. But she smiled, too. “I’m glad you’re excited about middle school.”
I took a huge slurp of my drink and set it down on the counter. Then I jumped into a cheerleading-ready position, and went through some of the basic motions—T motion, broken T, touchdown.
“Wildcats, Wildcats, go, go, go!”
I ended with my arms in a V, high above my head.
Clarkstown had a cheerleading team, and even though I couldn’t join it until next year, I was already practicing. I was determined to know every routine, all the moves, before sixth grade was even finished.
“Okay, pumpkin,” Mom said. “Medicine.”
I followed her into the kitchen, bouncing all the while. She handed me my dose.
By now, I was old enough to take pills. I held one of the pills up. It was enormous—nearly the size of a dime. “Think about it this way, Mom,” I said. “How many kids do you know who can swallow pills this size?” I held one up, as if she had never seen them before, as if she hadn’t seen them every day for the last nine years. “I mean, if I can handle these, I can handle middle school. Right?”
She watched as I swallowed, making sure that I took them exactly as directed. Only when I opened my mouth to show her that the pills were gone did she grin.
“Yeah, you can, Paige,” she said. “I know you can.”
The Short-As-Possible Explanation of HIV
(AND WHY MY MOM IS SMARTER THAN AN EVIL GENIUS)
Those medicines, by the way, are the very reason I was still around.
I got lucky, you see. Like, insanely, pennies-from-heaven, four-leaf-clover-on-a-rabbit’s-foot kind of lucky. That’s because the year before I was diagnosed with HIV—the very year before—the first of those medicines came on the market.
Had I not gotten so lucky, had I been born just a few years earlier, I’d be dead by now. I’m not being dramatic when I say that, not trying to get your attention with what my English teacher would call “hyperbole.” I’m just stating a fact.
Those medicines changed everything.
HIV is a virus. Viruses are funny things—everyone thinks of them as living things, but they aren’t. Not really. They can’t grow or reproduce on their own. But when they invade living cells, they behave like living things. They hijack those cells to make copies of themselves. So, in a way, it could be said that viruses borrow life—or steal it.
If you’re infected by bacteria—which are alive—you can take antibiotics to kill them. But if you have a virus—be it the flu, or the common cold, or HIV—there’s nothing to kill, because that virus was never alive in the first place.
With most viruses, your own body eventually produces, all on its own, everything you need to fight them off. Special cells in your body—among them, white blood cells—are constantly on the lookout for viruses and other invaders that can make you sick. They’re like the friendly neighborhood cops walking a regular beat, just keeping their eye out for something that might be amiss. If they detect something in your body that doesn’t belong—a virus, a bacteria, a fungus, or a parasite—these cells snap to attention. They band together, form a miniature army, and go rushing off to fight the intruder. Sometimes the cells make antibodies that overpower the infection. Other times, they swarm and devour the infection like a pack of hungry dogs. Whatever they do, those germ-fighting cells—those cops who can recognize and destroy an invader—are called your immune system. It’s what allows you to get better when you catch a cold or flu.
This type of war is going on inside everyone, every single second of their lives. It’s going on inside you right now. At this very instant, as you read these words, your body is being bombarded by germs, and your immune system is fighting them. It doesn’t matter that you’re not aware of it—it’s happening. Most of the time, it works brilliantly well.
But HIV is like the evil genius of viruses. HIV turns your immune system on itself.
An HIV virus looks like a tiny ball, covered in seventy-two spikes. Picture a burr that might attach itself to your sweater during a walk in the autumn woods, or one of those medieval weapons with spikes. HIV looks like a miniature version of those things. It’s big for a virus, at four-millionths of an inch, but it’s still so small it can’t even be seen with most microscopes.
As tiny as it is, the virus is as powerful as anything you will ever encounter.
HIV invades a special type of white blood cell, called a CD4 cell, or T-cell. Once inside that cell, HIV, that evil genius, turns the cell into a miniature HIV factory. The cell stops fighting invaders to keep you healthy, and instead churns out more and more copies of HIV.
The virus quickly spreads through the whole body that way, attacking one T-cell after another, turning each from a good-guy disease fighter into a bad-guy HIV factory.
When enough T-cells have been damaged that way, the immune system becomes too weak to fight infections.
Healthy people have about seven hundred to a thousand T-cells in a single drop of blood. Most people with HIV have fewer. If a person with HIV has five hundred or more T-cells in that amount, they’re considered operating at “normal” levels. But if their T-cell counts (also called CD4 counts) fall below two hundred, that person can no longer fight infections effectively. At that point, the person has AIDS—acquired immune deficiency syndrome. Acquired, because they got it from an infection. Immune deficiency, because the part of their body that fights infection is weak. Syndrome, because it’s a group of health problems that collectively make up a disease.
In other words, it’s not HIV that kills people. It’s that HIV destroys the very parts of you that would otherwise keep you strong. It makes your immune system so weak you can’t fight germs, putting you at risk for diseases that most people, noninfected people, rarely have to think about.
Oh, and you know one of the most evil genius–like things about HIV? A person can be infected for years—decades, even—before they show any signs. They look and feel totally
and completely normal—so normal that a drug user might want to share a needle with them, say. Or someone might not think twice about sleeping with them without using protection.
Or a mother—like my own—might get pregnant, having no idea that there’s a virus inside her, one that’s passing from her blood right into her infant’s.
Which is exactly how the infection has been passed on, year after year after year.
So, let’s say I had been less fortunate. Let’s say I had been born even a few years earlier. Here’s how it would have gone for me:
My T-cells would have started making more and more copies of the HIV virus. Each of those viruses would invade other cells, which in turn would make even more viruses. I’d look and feel normal for a while, then eventually I’d start getting weird infections, the type that pose no threat to a healthy person. They would come at me one after another—meningitis, pneumonia, tuberculosis, thrush, bronchitis, CMV retinitis, lymphoma, toxoplasmosis, encephalopathy, esophagitis, Kaposi’s sarcoma—I could catch any of them along with a whole host of other things that are every bit as horrible as they sound.
Eventually, one of them would have killed me.
But the medicine I take each morning keeps the HIV virus from making copies of itself inside my cells. If HIV turns immune cells into an HIV factory, these medications essentially “turn off” the factory’s assembly line. They stop HIV production in its tracks.
Take that, evil genius.
These treatments aren’t cures. At this point in time, there is no cure; once HIV is in your body, it’s there forever. But by stopping the factory, the medicine makes it possible to live with HIV for a long, long time. Possibly indefinitely.
I’ll be the first to tell you that there are some challenges with these treatments: it’s easy for HIV to develop resistance to the drugs, so you must use multiple drugs at the same time, and it’s essential that the drugs be given every single day, at the exact same time every day. No exceptions. That’s why my mother was always so vigilant about me taking my “yucky,” why she always watched me until every bit of the medicine was consumed.