Fireflies (19 page)

Child abuse.

Intolerable.

Unforgivable.

Children are precious, to be cherished. I always knew that. Believe me, that knowledge has been reinforced.

Cancer. I used to be afraid of it. Not anymore. Because it once was an unknown enemy. But now it’s horribly familiar. And what’s familiar isn’t as fearsome as the unknown.

A few days ago, one of Matt’s doctors came to visit. I told him what I was writing. I expressed my concern that someone afflicted with cancer might be advised not to read this book.

The doctor shook his head in disagreement. “Matt’s cancer was rare, and it chose a rare site—a rib instead of an arm or a leg. As near as we can tell, though, we cured it.”

“He died!”

“Because of an infection of a type that almost never happens. A biological accident.”

“Whatever, he’s still dead!”

“David, listen. Based on the autopsy results, I have to believe Matt would have survived. From the cancer. You’ll hate me for saying this. Your son was unlucky. Rare cancer. Rare site. Resistant to chemotherapy. Finally responded. Shrank, but metastasized. Surgery got most of it. Chemotherapy combined with a bone marrow transplant got the rest of it, but a biological accident killed him. What we learned from Matthew’s death takes us a step ahead in curing Ewing’s sarcoma.”

“What’s that got to do with—!”

“Whether a cancer victim should read this book? Your son, God bless him, may have been the only victim, in this country, of that rare cancer in that rare site. And he stared it bravely in the face. He went all the way with it. Successfully. Except for the septic shock. If Matt could stare that rare cancer in the face, imagine the inspiration he can provide to victims of much more common cancers, of malignancies we usually
can
cure. He provides an example. If Matt could be brave, given the worsening complications he stoically accepted, maybe he’ll show others how to fight their illness. David, you know we’ve had successes, even with Ewing’s. You’ve spent six months in the cancer ward. You’ve seen patients go home.”

“Some didn’t.”

“There are
no
guarantees. What I’m saying is, panic’s an enemy too! But Matt didn’t panic! So finish the book. And if civilians read it—not a doctor like me and a veteran like you—maybe they won’t be so ignorant about chemotherapy and how it’s administered and why a patient goes bald and what the chemicals do and why and how and what and …”

So today I’ll finish the book, and maybe some readers will find it frightening, but maybe other readers will learn.

But why did I write this book as I did, so a portion of it was fiction? In a paradoxical way, the fictional portions too are fact.

I never believed Matt would die. To his final hours in Intensive Care, I remained convinced that he’d survive. After his death, I still could not accept it. Sure, the doctors came out to the waiting room and told us he was dead. Donna and Sarie saw the body (I was on the verge of another panic attack, physically incapable of standing, of going into his room). They described how pathetically lifeless Matt’s scarred, bruised corpse looked, finally out of pain.

“There must be a soul,” Donna said, “because without it he didn’t look the same. He just looked empty.”

Donna explained how the Intensive Care staff prayed along with her and Sarie over Matthew’s corpse. Then of course there was the autopsy, the cremation, and the funeral.

But even when we deposited the urn containing Matt’s ashes into the crypt, I still did not believe Matt was dead.

This isn’t real, I thought. This can’t be happening. It’s a nightmare. I’ll wake up, and Matt’ll be fine. For days afterward, and especially the nights, I used to pray for the terrible hallucination of Matt’s death to end. The only reason I was able to sleep is that I couldn’t wait to wake up and discover Matt’s death had been only a vivid nightmare.

Each morning as my consciousness focused, I’d feel a surge of hope, then realize that the nightmare hadn’t ended, the hallucination hadn’t faded, and I’d plummet back into despair. But still I’d keep saying, “This can’t be real.”

That was one of my reactions. Another was my utter conviction that if Matt’s death impossibly
was
real, there had to be a way to reverse what had happened, to go back in time and save him.

I truly believed that. I thought if I concentrated hard enough I could turn the clock back. I spent many hours praying for a miracle, for a time warp, for a chance to leap into the past and somehow keep Matt alive. Throughout Matt’s treatment, the doctors had given us detailed explanations about his disease and how they were trying to fight it. After Matt’s death, the doctors gave us equally detailed explanations about what had killed him, about the staph and the strep and the septic shock. Every stage of Matt’s treatment had been based on logic.

But a biological accident destroyed him. In case he developed a fever, a wide range of antibiotics was ready to be administered, and those antibiotics
were
given right away, the instant his fever started to rise. The infection
was
killed, but the shock the infection caused had been too strong for his weakened body.

In hindsight, the only way to have tried to save him (and I emphasize “tried” because there’d have been no guarantee the effort would have worked) would have been to administer the antibiotics
before
the fever started, to get a head start on the infection before it developed with the devastating swiftness of a fire storm.

But as a doctor explained, “Antibiotics are toxic when they don’t have anything to fight. Bacteria can get used to them, so if an infection does occur, the antibiotics aren’t effective.” In other words, prematurely administered antibiotics might have made Matthew’s condition even worse. Still, given the fact that Matt died anyhow, those antibiotics (if given before he seemed to need them) were all that might have saved him.

If. Might. Such despair-producing qualifiers. That’s what cancer patients die from, “but ifs.” If only this had worked or that hadn’t happened. If. I believe that Matthew’s doctors did everything in their power to try to save him. I understand how unorthodox it would have been for them to administer antibiotics before his symptoms demonstrated a need for that kind of treatment.

I’m not criticizing. I want to make that clear, and I also want to make it clear that parents of cancer victims shouldn’t try to be doctors or think they know better than medical experts. It isn’t even wise to go through medical texts, because those texts are often outdated (especially in terms of cancer research, which constantly develops new techniques of treatment).

But I keep telling myself this can’t have happened, it isn’t real, Matt didn’t die. And I keep telling myself those antibiotics were his only chance. So finally I wrote this book—to tell you what happened to my son, and at the same time to dramatize my sense of unreality.

Am I still in a faint on my kitchen floor? Has all of this been a nightmare? Will I wake up to discover that Matt didn’t die and I didn’t write this book?

I pray so. Or am I dying forty years from now, recalling the greatest loss of my life, still trying to find a way to bring Matt back? Anything’s possible, because as far as I’m concerned the
im
possible happened to Matt.

That’s what I meant when I said that even the 10 percent of fiction in this book is paradoxically true, because my fantasy dramatizes two phenomena of grief—the sense that it’s all a nightmare, and the need to go back in time and make matters right.

My final scene, in which Matthew dies in 1987 while “David” dies forty years later and their souls as fireflies surge blazing toward each other, illustrates something else I said. I mentioned I’m falling off the fence of agnosticism. I’m starting to believe in God and an afterlife.
Because I need to. Because I so desperately want to see my son again
. Believing in God gives me a hope. Can faith be far behind?

Is there no pity sitting in the clouds

That sees into the bottom of my grief?

—SHAKESPEARE

Romeo and Juliet

I’ve been told that the loss of a child you loved is among the worst agonies a human being can suffer. A subjective statement, of course, and I certainly don’t want to get into any contests about grieving. My stepfather died eight years ago. That hurt me a lot. One of my wife’s sisters died the following year, and
that
hurt a lot. Those were my only experiences of powerful grief. Until now. But those two painful losses can’t compare to my present agony. I shudder at the thought that I might survive my wife. For the moment, though, let’s grant the statement. The loss of a child you loved is among the worst ordeals a human being can suffer. The promise of youth destroyed. The potential for zest and goodness torn away. The unfairness of it all, and you miss the kid so much.

There have been days when I didn’t think I could survive the pain. I contemplated suicide. What stopped me is that a month to the day after Matthew died, my daughter found the body of a friend who’d shot himself to death. He’d placed a towel beneath his head before he pulled the trigger. To minimize the blood. I couldn’t put Sarie through more torture. I couldn’t bear forcing her to attend the funeral of her father.

So I survive day by day, and the thoughts that help me are as follows.

The world is based on entropy, the messiness of the universe. Physicality is imperfect. Disintegration and random chance are the rule. If you have a good day, count yourself lucky. And if you wonder how God could cause something so devastating as the death of your son, you’d better rephrase the question, because God didn’t cause your son’s death. The chaotic nature of the world did. God is perfect. The world is not.

You could say that God should have done a better job when creating the world. But Perfection can’t create Itself. It can only create a lesser version. You could also say that God should have intervened to prevent the death of your child. But that would be a miracle, and no one has a right to expect a personal miracle.

I remember praying for a miracle. When Matt was close to death, I tried to make one of those bargains that Elisabeth Kübler-Ross refers to in her books about the nature of death and dying. But I couldn’t think of a reason for God to help
me
instead of all the other troubled souls in this world. I finally thought I’d found an argument that couldn’t be refused.

Dear God, I prayed, just as you’re supposed to be a father to me and to love me as your son, so please identify with the love I feel for
my
son. Please help my son, because
Your
son is asking
You
.

The prayer didn’t help. But I’m not bitter that it wasn’t answered. After all, I was trying to make a deal, and maybe that’s the wrong thing to do, to try to make a deal with God. Maybe if I’d believed in Him totally before Matt got sick, maybe if I’d had faith in Him to start with and not just now, Matt would have lived.

Well, that’s another issue. The miracle did not occur, and God neither caused nor took away my son’s cancer, because the nature of the universe He created doesn’t permit His intervention. That’s why there’s a heaven, I want to believe, because it’s a goal, a step up from the chaos of earth.

If you believe in Original Sin, you understand why the world’s imperfect and why God tests us instead of intervening.

But if you
don’t
believe in Original Sin …

Compassion.

I’ve said that Matt believed in the value of good nature. If everyone every day showed good nature to everyone else, most of society’s problems would disappear. Recently an editor acquaintance called me and paraphrased a quotation from a book whose title he no longer remembered. “From the start of human history, there’s been so much pain and suffering the stars should have stopped in their tracks.” My acquaintance ought to know. He’s suffered twice my tragedy.
Two
of his children have died. I don’t know how he keeps going. But my acquaintance (I keep using that word because I see him but once a year, and that’s what impressed me—he wasn’t a
friend
and yet he was phoning me) spoke only briefly about his own tragedies. He said he was calling because he’d heard about
my
son’s death, and he wanted to tell me how deeply it filled him with sorrow.

Compassion. If you think about it, every person you know, every friend, every stranger, in every building you pass, will one day (and perhaps even now) have a devastating personal loss. My acquaintance exemplified what we have to do. Show our compassion. We have to say, “I’m filled with sorrow for what you’re suffering.”

We have to weep for the pain of our fellow mortals. You’ve probably seen those bumper stickers that ask, “Have you hugged your kid today?” You bet. And our fellow sufferers. The letters of consolation my family received, not only from friends but sometimes from strangers, were powerfully helpful. They showed my wife, my daughter, and me that we weren’t alone, that someone cared, that shoulders were there to lean on.

Lately I’ve found that I’ve been hugging people a lot, and until Matthew’s death, I wasn’t what you’d call a touchy person. I hug them impulsively, and it seems to help me and
them
feel better about the day, about persisting in this tenuous universe.

“Life is suffering,” I said in Matt’s euology, quoting the first of the great truths of Buddha. Let’s face up to that and show the best of our human qualities—not intelligence; I think that’ll doom us, if nuclear weapons and worldwide pollution are any evidence of our stupid cleverness. Not intelligence but compassion.

What else have we got to depend upon except each other? If someone you know has pain, tell him or her you’re sorry. Don’t keep a distance. Be human.