Positive

by Paige Rawl

  Imagine a gathering—an actual gathering of real people. People show up, tentatively at first, just a few brave stragglers, asking, “May I come in?”

  The answer is yes. You, who are taller than your peers, and you who are shorter. Come in. You, who lost a parent, and you, whose parent is different from any other parent you know. You, the kid who once made an embarrassing mistake in front of your peers, and you, who lies awake at night paralyzed by the fear of making any mistake. All of you: join us.

  Imagine people are coming faster now, there is a steady stream, everybody carrying the thing that makes them stand apart. You with the funny ears, you who speaks loudly, you who can’t hear, and you who struggles to understand math. You who can’t sit still in class, you who doesn’t look like what a boy or girl is supposed to, you who weighs more than your peers, you who weighs less. All of you. Come. Let’s just decide that the very fact that we stand out, that we all feel different, is enough to bring us together.

  If we can let ourselves, all of us, be united by the simple fact of having a difference, we will be bigger and stronger and more powerful than anyone who might otherwise make us feel small.

  And you know what? We’ll have more fun, too. We will be the world’s most colorful block party.

  Recently, for the first time, there was a Miss America contestant who was openly autistic. Another had Tourette’s syndrome. Another modeled a bikini while hobbling on crutches. And yet another was open about the fact that she was about to get a double mastectomy—both her breasts removed—as a preventative measure against the breast cancer that killed her mother, her grandmother, and her great-aunt.

  Who knows? Maybe a pageant queen with HIV really isn’t that remarkable after all.

  I got to visit the Seventeen magazine offices in New York when I was chosen as a finalist in their 2013 Pretty Amazing Contest.

  This past summer I went to Camp Kindle, this time as a counselor, and I met a fellow counselor. Andrew was on my team during counselor Color Wars. He was an aspiring orthopedic surgeon, attending a premedical program in Nebraska. He loved country music. He had never known anyone with HIV or AIDS, but like Eva Payne, found himself drawn to these kids. We were both counselors for the youngest kids in camp—he for the boys and I for the girls. I watched him with campers, and I was struck by how easily he laughed, how quick he was to wrap an arm around a kid who was down, to lift a child onto his back, piggyback style.

  I told him about my own story, and he did not pity me. He simply listened.

  During one of the staff meetings, he and some other counselors said they wanted to put me up into a cheer stunt. I told them how to place their arms, how to bend their knees, then lift and throw. I flew through the air, then came back to earth and felt his arms catch me.

  And that may have been the moment I realized something else: he was pretty darned cute, too.

  When I got back to Indianapolis, my mom noticed how often he and I talked on the phone.

  “Do you like him?” she asked.

  I smiled and didn’t say anything.

  “Paige?” she said. “Does he like you?”

  I closed my eyes and when I opened them, I couldn’t help it. I beamed. “Mom, he’s awesome.”

  “Does he have goals?” she asked.

  “Yeah, Mom, he’s got a great head on his shoulders.”

  “And he’s a good guy?”

  “The best.”

  She shook her head. “Oh, my God, Paige. The look on your face.”

  “You should see him with the kids,” I said. Just thinking about that made me feel happy. “I don’t know, Mom. I think maybe I met my Prince Charming.”

  Not too long after that, Andrew visited me at college. My mom called me up and said, “Do I get to meet him when he’s here?”

  “Yeah, Mom. I’ll bring him for dinner.”

  Mom cooked us steak fillets and twice-baked potatoes, and she even convinced me to sing a country song or two. He didn’t know I could sing, so we broke out the karaoke machine, and I belted out Carrie Underwood. A look of surprise came over his face. I laughed. I looked at them sitting together—my goofy mother, still up for everything, and this amazing young man, my Prince Charming, with whom I was completely and totally in love.

  Visiting the Ball State University Dance Marathon back in 2011. I got to be involved with the planning, and I found the college I wanted to attend after graduation!

  As I write this, I’m just beginning college. I started Ball State University this fall, where I’m helping organize the annual Dance Marathon, which raises money for Riley Hospital. I’m working directly with Riley families, which is pretty great, being a Riley kid myself. I’m planning to study molecular biology; my career goals have changed from wanting to be Dr. Cox to wanting to discover the medicines she prescribes. There’s much talk now about the next generation of HIV drugs—maybe someday even an HIV vaccine. During the time I wrote this book, a baby born HIV positive in Jackson, Mississippi, was reported to have been “cured” of the infection, an incident that sparked a large multisite clinical trial. Meanwhile, there is some optimism that an HIV vaccine might be less than a decade away. I would love to be on the front line, being a part of the team that makes HIV a thing of the past. I want to create a vaccine for those who aren’t infected—and to make life with HIV totally indistinguishable from life without HIV, for those who have already been infected.

  There’s more work to be done; a few weeks after I learned about the baby in Jackson, the state senate in Kansas—a Midwestern state not unlike my own state of Indiana—passed a bill that would allow the quarantine of people with HIV/AIDS. All these years later, fear of disease can still win over information.

  Catching up with Dr. Martin Kleiman, who treated both me and Ryan White—one of the first and most influential pediatric AIDS patients—at Indiana University’s Dance Marathon.

  I know this: I will continue to work with HIV children in some capacity. Perhaps to them, I’ll seem as adult as Dr. Cox always seemed to me—so mature, like someone who has it all together. Maybe I will tell one of those children about my own experiences growing up with HIV.

  Maybe the child I’m working with won’t entirely understand what I am saying. Perhaps she will struggle to connect the world that I describe with her own world, the one that is. Maybe when I’m done talking, she will smile at me—such a real and genuine smile it will crack my heart in two.

  “It’s not that way anymore,” she’ll say with a shrug. And I’ll know, in that simple shrug, that it’s true: in this new world, her world, cruelty to anyone with HIV, maybe even HIV—or who knows, maybe even cruelty itself—is finally a thing of the past.

  Here’s hoping.

  And I do, I really do: I hope.

  My mom is my biggest supporter. Here we are before a Masquerade Ball in 2008.

  When I was a kid, I wanted to be Dr. Cox when I grew up. She’s still one of my heroes.

  Afterword

  It was other people who saved me. When my journey was at its most difficult, when I was most isolated from peers, when I tried in all the worst ways to escape my loneliness, it was the people who stood by me that saved me.

  The little moments with them mattered most: Singing along to a song on the radio together. Making faces in the mirror. Styling our hair in ridiculous ways and laughing late into the night. Sharing a bag of cheese puffs. All of that endless talk about clothes and boys and television shows.

  They made me feel normal, just like any other kid.

  If you, reading this, are in the middle of your own darkness, hold tight. Your own people are out there—those friends who will love you for exactly who you are. When you find them, you’ll laugh harder than you ever imagined. That laughter will fill all the nooks and crannies of your heart, all those places where pain had been.

  And you’ll find them if you hang on. So hang on.

  If you’re lucky enough to not understand what it’s like to be surrounded by darkness, I’m t
elling you: someone near you needs kindness. They need it today. They need it desperately. Offer it. Sit with them awhile. Ask them questions. Get to know them. Then get to know them better. Share a bag of cheese puffs.

  It really is that easy.

  Finally, if you’re an adult and there are kids in your care who are telling you something, please listen. Don’t say there’s nothing you can do. Don’t say “kids will be kids.” Don’t shrug your shoulders, and please, please don’t call it “drama.”

  It is hard to be a child in the presence of an adult. It takes strength to go to the grown-ups in your life. It takes courage to ask for that help.

  Honor that. If you’re not sure what to do, ask someone. Do your homework. Listen.

  Don’t ever stop trying.

  I didn’t plan this journey, and I certainly wouldn’t have chosen it. But the things that happened made me who I am. They’re inside me now, part of me, in the same way a tiny virus has always been a part of me.

  I’m stronger today because of it. I have a voice I didn’t before. That’s a gift—a gift I can use to make the present-day world a little kinder.

  I hope you’ll join me in that.

  It’s a complicated and sometimes sad and seriously beautiful world we live in. There’s plenty of work to be done.

  And you know what? We’re all in it together.

  I know now that I was given this life because I am strong enough to survive it. And when the darkness cleared, I wanted to use my experience to make a difference for others. If you are in the darkness now, hold on. I promise, you can do it. You can get through all the negativity and live a life that is positive.

  Acknowledgments

  Ali Benjamin, my cowriter—There’s not enough words I could say about you. Thank you for all of the long hours you have put into helping me share my story. It is greatly appreciated! I couldn’t have done this without you and I can’t thank you enough for all that you’ve done. There’s no one else I would have rather shared this journey with.

  To Kristen Pettit, Jen Klonsky, and the rest of the team at HarperCollins and to Mollie Glick at Foundry Literary + Media—Thank you for all you have done to help me share my story. I truly couldn’t have picked a better team to work with!

  Aunt Kim and Uncle Randy—Thanks for being there for my mom and me since the beginning of our diagnoses and standing by our sides through it all. I love you bunches!

  Candi—You’re the best sister anyone could ever have, I love you. I’m proud of the wonderful mother you are and thank you for blessing me with three beautiful nieces.

  Mammal—Thank you for being my biggest fan. I love you.

  Mark—You’ve truly been a father figure in my life, thank you for everything.

  Jay Asher—It is such an honor to be introduced by an author who has inspired so many through the book Thirteen Reasons Why. Thank you for all that you are doing for those who have been a victim of bullying!

  Eva Payne—Thank you for treating me like one of your own and for Camp Kindle, a place that has totally changed my life.

  Riley Hospital for Children—To the doctors, nurses, and lab technicians who have taken care of me since my diagnosis, thank you! I can’t imagine having been treated anywhere else.

  Herron High School administration and faculty—Thank you for allowing me to be myself, supporting me, and for all the wonderful memories. I will always be grateful!

  Thank you to those of you who have stood by me when a lot of others wouldn’t during some of my toughest times.

  Help and Resources

  Consider making a donation to make a better world.

  If you want to help other children who are facing health issues, and/or who are specifically affected by HIV/AIDS, please consider making a donation to two of my favorite charities:

  Camp Kindle

  This camp, for children and teens whose lives are touched by HIV/AIDS, was profoundly important to me. The experience is 100 percent free of charge to all campers . . . and it’s life changing. By helping send a child to camp, you will transform lives. Visit www.campkindle.org/donate.html.

  Riley Children’s Foundation

  I have been a patient at the Riley’s Ryan White Infectious Disease Center since being diagnosed HIV positive in 1997. The Riley team has always provided outstanding medical care in a loving, supportive environment . . . and they never turn a child away, regardless of the family’s ability to pay. Donations ensure that Riley continues to provide first-rate care to all children. To donate, visit www.rileykids.org.

  I assure you that your contribution will help shape a better world.

  HIV FACTS

  What is HIV?

  HIV is the infection that causes AIDS.

  H—Human—This particular virus can only infect humans.

  I—Immunodeficiency—HIV weakens your immune system by destroying cells that fight disease and infection.

  V—Virus—A virus takes over cells one at a time in the body of its host.

  What is AIDS?

  AIDS is a disease of the immune system characterized by a weakened ability to fight infections.

  A—Acquired—AIDS is not something you can contract; you acquire it after a certain point in your HIV status.

  I—Immuno—Your immune system includes all the cells and organs needed to fight off disease or infection.

  D—Deficiency—You reach an AIDS diagnosis when your immune system is “deficient,” or weakened, from the HIV infection. HIV becomes AIDS when your CD4 count—a measurement of the amount of healthy immune cells in a drop of blood—falls below two hundred.

  S—Syndrome—A collection of symptoms. AIDS is a syndrome, not just a single disease.

  How is HIV spread?

  Through four bodily fluids only: —Blood

  —Semen

  —Vaginal fluids

  —Breast milk

  Through unprotected sexual intercourse (vaginal, anal, or oral) with someone who has HIV or AIDS

  Mother-to-child transmission during pregnancy, childbirth, or breastfeeding if the mother has HIV or AIDS

  Sharing needles or syringes with someone who has HIV or AIDS

  How is it not spread?

  You cannot get HIV/AIDS from:

  Shaking hands with someone who is infected

  Hugging, kissing, or otherwise touching someone who is infected

  Sharing water fountains, drinking glasses, plates, or utensils with someone who is infected

  Eating food prepared by someone who is infected

  Toilet seats

  Swimming pools or hot tubs

  The air

  Getting sneezed or coughed on by someone who is infected

  Insect bites

  HIV Statistics

  As of 2009, it is estimated that there are 1.5 million adults and children living with HIV/AIDS in North America, excluding Central America and the Caribbean.

  26,000 people in North America (again, excluding Central America and the Caribbean) die from AIDS every year.

  One in six people living with HIV in the United States are unaware of their infection.

  An estimated fifty thousand new HIV infections occur in the United States each year.

  An estimated one in four new HIV infections is among youth ages thirteen to twenty-four.

  Every 9.5 minutes someone in the United States contracts HIV.

  Treatments

  There is no cure for HIV/AIDS, but treatment is available. If you have been exposed to HIV, or worry that you might have been exposed, get tested. Do not wait. There are many great medicines that help people live well with the disease—and the sooner you start taking them, the better they’ll work.

  Where to Get an HIV Test in Your Area

  In the United States, go to http://hivtest.cdc.gov. Just type in your zip code and find places near you. In Canada, the Canadian AIDS Society (listing on the following page) has hotlines that will help you find HIV testing.

  HIV/AIDS RESOURCES

  The
re are many fantastic organizations working to improve the lives of people with HIV/AIDS and to prevent new HIV/AIDS infections. Some organizations are focused on international efforts to stop the HIV/AIDS epidemic. Others provide support services or access to health care. Still others provide other support services—emotional support, a sense of community, education/information, testing, and more.

  Some of these organizations are listed below, and the information about them is accurate as of June 16, 2014. Please note that none of the following organizations has endorsed or is otherwise affiliated with me, my story, or this book.

  United States: AIDS.gov

  This website offers HIV/AIDS information from the federal government. You’ll find prevention, testing, treatment, and research information, as well as links to other sources of information. www.aids.gov

  AIDS Service Organization Finder

  Nearly all communities in the United States have support services for those with HIV/AIDS. To find service organizations in your area, simply type in your zip code and the distance you are willing to travel. You can even sort by the type of service you need—including legal services, testing and counseling, financial assistance, case management, and education. www.asofinder.com

  Camp Kindle

  Free summer camp programs for children who are infected with, or otherwise affected by, HIV/AIDS. Open to children ages seven through fifteen. There’s a Camp Kindle West (in California) and a Camp Kindle Midwest (in Nebraska). Both provide a refuge from the challenges of living with HIV and a supportive environment where children find growth, acceptance, and education. www.campkindle.org