If I Grow Up: Talking with Teens about AIDS, Love and Staying Alive Paperback January 1997	My Invisible Kingdom: Letters from the Secret Lives of Teens Paperback may 2004

Teenagers are the overlooked heroes in the fight against AIDS - young soldiers of survival in a common battle, defending their right to believe in life.  These are their stories and poems.  These are their questions and hopes.  This is their voice.  As one teen puts it, "We need to feel the value of our own lives."  In the words of another, "If my friend had AIDS - no cure, she'd have me, without fail."  And still another, "Dear HIV, some of us will use you as an excuse to fly!"

Highlights include:

• Scott's story of the night in 1987 when he got infected with HIV.
• Conversations with teens discussing topics ranging from sex and abstinence to death and suicide, as well as AIDS testing, how to say "no" and how to be a hero.
• Heartwarming stories about some of the teens as they learn about AIDS and the value of life.
• Poems written by the teens themselves.
• Scott's well researched theory as to why teens are putting themselves at risk for HIV and other STIs.

This book is for teenagers who need to be educated about AIDS.  It is also for parents and other adults who are concerned about the threat of this disease on today's youth.

This book is for anyone who is growing up in a world where there is AIDS.

 

Excerpts from “If I Grow Up”
From the Introduction:

This book is a collection of lectures, stories and poems, given and gathered over a period of five years as I steadfastly traveled around the country to meet with tens of thousands of teenagers.  They are lectures to, stories of and poems by teenagers learning about HIV/AIDS, in high schools, colleges and universities, churches and synagogues, youth groups, conferences, retreats and, of course, on the streets - anywhere and everywhere young people congregate.  For purposes of telling their stories, however, the setting for this book takes place at a series of summer camps over the period of a single summer.

My intention was to talk to the teens about how I got infected with HIV and to share my message of hope and courage with as many of them as possible.  My aim was to convey, in short, that in order to learn how to stay safe, one must first learn why to stay safe.

As I started sharing this body of work with my adult friends, one of them, Shaun, shared with me his insight: 

When teaching teenagers about AIDS, you must draw upon an incredible capacity to love while staying completely in the moment; be present.  You must be able to pay attention.  Notice and note the small intricacies all the rest of us glance over quickly, hurrying on our way.  You must mark each moment the way a careful gardener would the blossoms, the snowy moon and the teardrops of rain on each petal.  When you are with teenagers, pay attention.  Pay homage to their emotions and their concerns and their whole process of explanation.  Take time to give time...to return time robbed or taken away by others less willing.  Be willing, my friend, and you will succeed.

Teenagers ask many questions.  But in my travels, I discovered what they are really asking behind their careful wording:

"Is it safe to be alive?"
"Can I hold onto hope?"
"Will you look me in the eyes and tell me the truth?"

They ask the world of me, giving me all their hope in return for a chance to be free from their fear.  It is my privilege to do more than simply offer them answers; I must return their hope with compassion, and by doing so, together somehow we'll find our way. 
These teens present the clearest vision of the memory of promises I made at their age -- promises to always remain pure of purpose with the unblemished expectation that love is what's needed in order to grow up.  In the meantime, a silent promise is made: "this moment is enough and the memory of this moment I shall carry with me always."

When I teach teenagers about AIDS it is easy for me to believe in some greater good of which I am a part.  If I am still and attentive I can feel the movement of energy between us.  Love.  The kind of love I believed in at their age.  They either carry it with them or they awaken it in me.  Perhaps both.  And at once I know that my presence in their lives is a lasting one.  I am immortalized in their collective memory, and it heals me.

If it could be said that all eternity exists in a single pure moment, then together these teens and I have shared something that will last beyond time itself.  More than simply my students, they have become my teachers, mentors and friends.  Through them, I have learned about the privilege of assisting in a child's development.  Moreover, they remind me to see the world more clearly with the same wide-eyed passion for living that youth embraces. 

As my friend Deborah describes it, "The true work is to uncover people's magnificence so that they can know it in themselves and see it in others."  It is my hope, thereby, that my brief presence in their lives will help them to recognize, cherish and value their own.  For this is indeed what they have taught me.

Along my journey, I met a woman who asked me, in Hebrew, "Ma Yesh?"  I think she meant it as a greeting, but in my broken understanding of the language,I took it to mean, "What do you have?"

"Stories," I said.  "Lots and lots of stories."

These are some of them.

 

If I Grow Up

If I grow up
I want to be like you, dad
I want to study hard
I want to dance and sing and roll in the grass
Swim in a silver lake
Climb large, towering trees
And eat the fruit of their branches
If I have time

If I grow up
I want to wake up to a beckoning sun
And jump out of bed to shout that I'm free
I want to be king of all that I see
If I have time

If I grow up
I want to love, be friendly and care
I want to be there for you, like I haven't been before
I want to stop from hitting ground floor
If I have time

I want to grow up
Be a father
Grow old
If I only had time

Adam
Age 17

 

Chapter 10: Suicide

A ten year-old girl approached me on the campgrounds as she was running to play.  "Just one question," she said.  "Do you blame yourself for getting infected?"  I took a deep a breath and began to pull together all the conflicted thoughts in my mind, wondering how to answer her sensitive question, when before I could utter a single word, she looked straight into my eyes and said with a smile,

"...because you better not!"

*   *   *   *   *

Did you ever want to die?  Did you not want to go through all this?

I get that question all the time and I always answer with the same story from my favorite movie, "The Secret Garden."   Colin is a wheelchair-bound boy who has never been outside.  "I can't breathe the air outside.  It'll kill me," he tells his young  cousin Mary.  "Everyone says I'm dying." 

Mary simply says, "Well, if everyone said that about me, I just wouldn't do it."

If someone were to tell me tomorrow, "You are HIV Positive," I think I would go crazy.  I don't know what would happen to me. 

You think you think you'd go crazy, but you probably wouldn't.  I thought I'd go crazy, too.  The minute before the test results were given to me, I thought the same thing.  A minute later, I didn't go crazy.  I survived.  It's amazing how you survive when you have to.  We come through when we have challenges put upon us.  You just adjust.  And you become stronger. 

When you get your test results back one of the things you realize is that life is more important to you than ever before.  When you can see that the stakes are high enough, suddenly life becomes worthwhile.  Sometimes, when the control is taken out of your hands, you want it back and you find yourself saying, "I want to live more than ever." You want to regain control of your destiny.  AIDS makes you more aware of your life wish. 

I just don't know.  If I was faced with that dilemma every day, living with AIDS or killing myself, I don't know if I could decide to just live with it.

Aah.  But you are faced with that dilemma every day.  Every day of your life you are faced with some sort of crisis and the choice of how to deal with it is entirely up to you.  Yet you seem to keep choosing to live.  In fact, you got up this morning and came here and have decided to share some of yourself with us.  Notice that and give yourself credit.  Look, we're all living with AIDS.  Whether we're HIV positive or HIV negative, it's in our lives.  It's in our world.  It's in this room right now.  Acknowledge for yourselves that you're doing a pretty good job of living with it.

I know eight teenagers who have killed themselves, including the star athlete in my school.

That 's hard to hear.  It makes me think of what a friend with AIDS once said in a support group.  "I feel like every cell in my body has a tear to shed."  Sadness and pain are some of the things that make you important to this world.  Feel them.  Find the courage to work through them.  It's what makes a room full of people turn their heads to you in silence, because they know you understand them. They you know you have walked upon the terrifying terrain of the human heart -- and survived.

While watching a popular television show one night, I heard the line, "You know there's no future in dating someone who is HIV+."  Later that evening, on the eleven o'clock news, I saw a teenager being interviewed because her best friend had killed herself.  Seems she was diagnosed HIV+.  Not AIDS.  No sickness.  No hospitalization.  HIV and asymptomatic.  And she killed herself.  While I don't know all the reasons she did that, I'll give you some of them.  In our society we don't take enough care of each other by protecting authenticity, presenting the truth of the situation.  We create dramas out of things that have no business being sensationalized.  We don't talk about the other part of AIDS - the blessings of AIDS.

It is really important that we present the topic of AIDS truthfully, as it really is.  That includes a lot of faith, a lot of hope and a lot of love.  Support. Religion. Family.  Friends.  Sharing.  Caring.  Compassion.  Red ribbons.  Prayer.  They're a part of AIDS, too.  Do you understand what I am saying?  Because if a teenager finds out they are HIV positive and all he or she hears is the bad news, what reason would they have not to kill themselves? 

I'm glad I didn't want to kill myself.  Because if I had, I wouldn't have learned all the lessons about myself and life that I have learned over all these years.  I wouldn't have become the man that I have become, or met the people that I have met and had the joy and felt the love and taken the opportunities to make life important.  Like my friend, Edgardo, said to me the day night before he died:  "Scott!  Get a life!"

If I were to be told tomorrow that I'm HIV positive, what can you tell me that you would want me to remember?

Just...keep...breathing.  And what I mean by that is two different things.  First, just get through the moment.  Inhale and exhale and love each one that takes you to the next breath.  Just breathe and get through it because the thoughts will come, the feelings will come, and the energy will come.  Just keep breathing. And second, don't kill yourself.  Stay here.  Stay with the program.  Please stay alive. 

 

From the Conclusion:

Teens are the overlooked heroes -- the sometimes inarticulate people in pain who swallow their sorrow, fear and confusion with self-neglect in the forms of drugs, alcohol and unsafe sex.  AIDS in their community exists as a manifestation of an even greater disease: growing up in a society that fosters a lack of survival skills, like high self-esteem, self-respect, self-discipline and self-love.  Yet I contend that once they are given the room to acknowledge their difficult journey and the praise they deserve for their efforts, there is a chance they will recognize their value and self-worth and fully participate in protecting their futures.  As one teen put it, "I get it.  I value my life.  And if I hurt myself, then I hurt all the people around me who love me."  And in the words of another, "We need to feel the value of our own lives.  If we don't acknowledge that, giving it all up to ignorance or weakness becomes easy."  And still another, "We must remember that it's not our bodies that are inconquerable, but our spirits."

There is a modern Hebrew song that goes, "y'hiyeh tov, y'hiyeh tov cain, lifamim ani nishbar."  Translated to English, it means, "It will be fine, it will be fine, yes.  Even though at times I am broken."  As I listen to the stories of these brave youngsters, I attempt to help them find room inside to be at peace with being broken.

I remember a flower that my friend Deborah once put in front of me.  We studied it, with reverence for its silence, its dignity and its perfection.  We noticed how it never complained or wondered if it was anything less than beautiful.  And suddenly, a single petal fell to the table. "See," said Deborah, "even the flower is falling apart."  To which I replied, "And it is no less beautiful, no less perfect."

And I remember a piece of a prayer I once read that went something like, "Dear God, please cherish our fragmented hearts."

As I look upon these faces of summer, I wonder how I can teach these teenagers to cherish what feels like a heart fragmented.  Perhaps true healing comes not from asking God to cover our blemishes or to put us back together again, but from honoring and respecting some of the inner torment, bearing witness to life's lessons.  I endeavor to teach these teens how to recognize the sweetness in the fragility of their lives and how to salute each other for continuing to seek gladness, in spite of life's demanding circumstances.

They are champions, these teenagers -- young soldiers of survival in a common battle, defending the innocence of simple joys.  They get out of bed each morning with aspirations and promises renewed.  They fight over seconds for dessert, dream of getting behind the wheel of a car for the very first time, and talk about their first kiss.  Some still love to be sung to sleep, while others wait for full moons.  They illuminate the simple but deep joy of feeling alive, as if to say, "Thanks, God. I get it. That full moon is shining just for me."