Fireflies: A Father's Classic Tale of Love and Loss Page 2
“Life is suffering.
“As I finished typing those words at three-forty-five on a beautiful Thursday afternoon in autumn, I turned to glance out my study window and frowned at the sight of my fifteen-year-old son, Matthew, staggering across our front lawn. He was doubled over, his left hand pressed against his right chest. I rushed to meet him as he stumbled into the house.
“ ‘I can’t breathe,’ he said. ‘The pain. There’s something wrong with my chest.’
“No doubt I broke several traffic laws, speeding to our family doctor. Really, I don’t remember. A lengthy exam made it seem that Matt had pleurisy, an inflammation of the lining of the lung. Antibiotics were prescribed. The pain went away.
“But as the Buddha says, life is suffering. During Christmas vacation, the pain came back, not in his chest this time but in his back. An X ray revealed that Matt had a tumor the size of two fists.
“And so the horror began.
“Matt had bone cancer, specifically a type known as Ewing’s sarcoma. We hadn’t detected it sooner because Ewing’s is sneaky. The pain comes and goes. Often it isn’t at the site of the tumor but rather at various other sites responding to presssure from the tumor. For a brief time, the explanation for the pain seemed to be that Matt had hunched over too long in marathon guitar-practice sessions.
“Ewing’s is an uncommon form of cancer, but when it develops, it’s usually in an arm or a leg. In this case, the uncommon cancer had chosen an uncommon spot, the underside of Matt’s right sixth rib. Even so, Ewing’s had been known to respond to chemotherapy. His chances of surviving were judged to be eighty percent.
“In January, he rapidly learned to familiarize himself with the names of arcane-sounding drugs. Vincristine. Methotrexate. Adriamycin.
“Cytoxan. The last part of that chemical’s name—not its spelling but the way it’s pronounced—says everything. Toxin. These substances were poisons intended to kill the tumor, but unavoidably they hurt healthy tissue as well.
“By early February, Matt’s long curly hair, grown in imitation of his rock music heroes, had begun to fall out in huge disturbing clumps that littered his bed and clogged the drain when he took his morning shower. It’s a measure of Matt’s spirit that he decided to cut this ugly process short by having a party in which his friends ceremonially shaved him bald. Some of them still have his locks. His eyebrows and eyelashes were less easy to deal with. He let them fall out on their own. He never tried to disguise his hairless condition. No wig for him. He displayed his baldness boldly for all the world to see and sometimes stare at and on occasion ridicule.
“It’s a further measure of Matt’s spirit that the weakness, disorientation, and vomiting produced by his medications never slackened his determination to persist at school. A straight A student soon was making grades that a few months before would have embarrassed him.
“But he hung in there.
“Chemotherapy was infused through an intravenous line, a tube surgically implanted beneath the skin of his left chest. You couldn’t see it. But you could feel it. And for sure, every day, Matt was terribly aware the tube was present. The chemicals didn’t take long to be administered, an hour for each, but their damaging side effects to the bladder required a prolonged irrigation of saline solution to flush the chemicals from his system. Thus the beginning stages of Matt’s treatment forced him to stay in the hospital for three days every three weeks and to recuperate at home for another three days. A small price to pay.
“Except that after several applications, it became frighteningly manifest that the treatment wasn’t working. The tumor had continued to grow. More aggressive chemotherapy was called for. His survival chances were now fifty percent. But as the weakness, disorientation, and vomiting worsened, he still didn’t lose his spirit. He began to think of the tumor as an alien within him, a monster whose strength, intelligence, and will were pitted against his own.
“‘But I’ll beat it,’ he would say. ‘I’ll win. I want to be a rock star when I get older.’
“Life is suffering.
“The more aggressive chemotherapy didn’t work either. His physicians moved from chemicals that under ideal circumstances gave cause for hope to agents that are called ‘investigational,’ that is they’d been used so seldom that permission from the hospital’s ethics committee was required before Matt could receive them. Nonetheless, of the twenty-two cancer patients who’d received them, eighteen had experienced dramatic results. Sounds good. But you don’t receive investigational therapy unless you’re in the twenty percent of patients predicted to die.
“Again Matt familiarized himself with arcane names. Ifosfamide. Mesna. VP-16. Now, in April, the length of his stay in the hospital while receiving chemotherapy was five days every three weeks. And the hangover from these drugs took another five days. Between treatments, he had only eleven good days, if ‘good’ is a word that applies here.
“For once, the treatment worked. The tumor shrank fifty percent. Imagine his elation.
“Imagine his equal and opposite distress when the next time he received these chemicals, the tumor—the alien—adjusted to them and began to grow again.
“Surgery was the only option. In late May, four right ribs and a third of that lung were removed, along with the tumor.
“Or rather most of it. Because the alien had spread seeds, and to kill them, the doctors had to use even more aggressive treatment. A pint of Matt’s bone marrow was extracted from his hips. A tidal wave of chemicals was infused, enough to kill all his white blood cells. His healthy bone marrow was returned to him. Eventually it would produce healthy blood. All things being equal, he would regain well-being. The cancer, viciously assaulted, would be killed.
“But all things weren’t equal. Normally harmless bacteria in and on his body bred out of control. No longer held in check by his usually vigilant white blood cells, they stunned him with a rampant infection known as septic shock. The top number of his blood pressure plummeted to forty. His heartbeat soared to a hundred and seventy. His temperature surged to one hundred and five.
“But he hung in there. Antibiotics killed the bacteria. Conscious though struggling against an oxygen tube in his throat, he used a trembling finger and an alphabet board to spell frantic words of conversation. Morphine was used to ease his struggles against the oxygen tube. He was last conscious a week ago Sunday. But even after that, he reflexively gripped the hands of sympathizers with unbelievable strength. Until last Saturday evening, when after eight days in Intensive Care and six months of unremitting ordeal, something in him wore out.
“Life is suffering.
“Only Matt knows how much he suffered. His mother and I, his sister, his relatives, his friends, his teachers, his nurses, his physicians, all of us can only guess. Because he never complained, except to ask ‘When am I going to get a break?’ And even then he’d add, ‘But I’ll beat this damned thing.’
“Maybe he did. Maybe the cancer would never have come back. In the end, not evil cells but normally innocent ones defeated him. As I said at the start, life’s ironies can sometimes kick you in the teeth.”
David had trembled at the lectern in the church. After another agonized gaze toward the urn containing Matthew’s ashes—and the photograph of Matthew in his long-haired robust prime—David had dizzily faced the mourners and struggled not to faint.
“What I’ve just described to you was hard to write and more hard to say. But I didn’t do it out of perversity, out of some horrible need to make you feel my hurt. And his mother’s hurt, and his sister’s, and that of all the rest of you who were close to him. I did it because there were many who saw only the carefree, good-natured, happy-go-lucky pose he bravely demonstrated to his associates. Many had no idea, not the faintest notion, of what he was going through. He wanted it that way. And he succeeded. He even successfully completed his ninth grade of school.
“His spirit, his bravery, his humor, his determination ought to be models to us all. Life in the last analysis
indeed is suffering, but the lesson Matt gave us is that pain and disease can destroy us. But they need not defeat us. The body in the end must die, but the spirit can endure.”
David had paused again, trembling, struggling not to faint. Through tear-blurred eyes, he’d mustered strength to focus on the swirling words of the text he so fiercely wished he didn’t have cause to recite.
“When prolonged unfair disaster strikes, the obvious question is why? I read in the newspaper about mothers who strangle unwanted newborn infants, about fathers who beat their children to death, while we wanted so desperately for our own child to live. I ask why can’t evil people suffer and die? Why can’t the good and pure, for Matt truly was both, populate and inherit the earth?
“If we view the problem from a secular point of view, the unwelcome answer is simple. Disregarding religious solutions, we’re forced to conclude that there is only one cause for what happens in the world. Random chance. Accident. That’s what killed Matt. A cellular mistake. A misstep of nature. If so, we learn this as well. Given a precarious existence, we ought to follow Matt’s example and prize every instant, to make the most of the life we’ve borrowed, to be the best we can, the bravest, the kindest. For at any moment, life can be yanked away from us.
“There are those who would have lapsed into hedonism, into alcohol, drugs, and other forms of reckless self-indulgence. That was not Matt’s way, for he worshipped creativity. Strumming on his guitar, dreaming of a career in music, he knew with a wisdom far beyond his years that beauty, good nature, and usefulness were the proper values.
“But from another point of view, a religious one, we learn something else.
“Life is suffering, the great Buddha says. That was his first truth. He had three others.
“Suffering is caused by the wish for nonpermanent things. All living things die. Everything physical falls apart. That was the Buddha’s second incontrovertible truth.
“And the third? Suffering ends when nonlasting things are rejected. No person, no object, no career can finally bring happiness. In a world of eventual destruction, only eternal goals are worth pursuing.
“Which leads to the Buddha’s fourth and last great truth. Seek the eternal. Seek the forever-lasting. Seek God.
“Matt wasn’t religious in the sense that he belonged to an organized body of faith. He was baptized as a Roman Catholic. He was trained in that religion to the point of what Catholics call the sacrament of Communion. But to him every other religion had value as well. He did believe in God. He wore a small crucifix as an earring. On one of his last conscious days, he received what the Catholic Church used to call the sacrament of Extreme Unction, the final rites, what it now calls the sacrament of the sick. We know Matt’s body was sick beyond belief, but I assure you his soul was wholesome to its depths, and I’m convinced the sacrament spiritually and psychologically eased his passage.
“Poor dear Matthew, how we grieve for him. But in addition to his hopes of being a musician, he had three final wishes, which I’ll share with you.
“ ‘If I die,’ he said, ‘I want to be surrounded by a communion of my friends.’
“Today, with love, we’ve achieved that wish for him.
“His second wish?
“ ‘If I die,’ he said, ‘please remember me.’ With all the tears in my heart, son, I swear you’ll be remembered.
“And his third wish?
“ ‘I hurt so much,’ he said. ‘I want mercy.’
“My unlucky wonderful son, in a way I can barely adjust to, you received that wish also. You did gain mercy.
“Sleep well, gentle boy. Be at peace. We’ll think of you with fondness till we ourselves pass. And if there is an afterlife—I confess I’ll never be sure till I find out—I know you’ll forever be in loving tune with us.
“Say hello to Jimi Hendrix for me. John Lennon. And Janis Joplin. All the other departed music greats. Pal, I bet you’ve got a hell of a band.”
5
So David had read at his son’s memorial service. Next to him on the altar, beside the photograph of a glowing son and an urn filled with ashes, had stood Matthew’s favorite guitar, a white combination acoustic-and-electric made by Kramer, the instrument Donna had purchased for Matt the day of his extensive surgery. Waking from sedation after being monitored in Intensive Care, not yet knowing that the cancer had not been fully removed, he’d been shown the guitar and, too weak to hold it, had managed a tearful grin of joy, his weak voice breaking. “Isn’t that beautiful?” David, about to die now forty years later, still heard those heart-choking words reverberate through the morphine swirl of his mind. His son had survived to play that guitar only four muscle-weary times, discouraged because his fingers no longer retained their skill.
In the eulogy, David hadn’t included the further agonies his son had endured. After the chaotic heartbeat, respiration, temperature, and blood pressure that were part of the septic shock, Matthew’s kidneys had failed. Dialysis had been required. Not the kind in which a machine is used to filter poisons from the blood. That type of dialysis couldn’t have prevented Matt’s failed kidneys from causing excess fluid to accumulate in his body. Choosing a different method of dialysis, a surgeon had desperately slit open Matt’s abdomen and inserted a tube through which liquid was poured, its special properties establishing a correction of blood chemistry by means of a process called osmosis. The liquid sucked not only poisons but excess fluid through Matt’s abdominal lining, and every hour that poisoned fluid was drained, replaced by a fresh solution. But the poisons and excess fluid had resisted treatment, not leaving his body quickly enough.
Then Matthew’s left lung had collapsed. Then his muscles had begun to contract from lying motionless for too many days. Donna and David had put on and taken off his socks and sneakers every hour to prevent his Achilles’ tendons from tightening. Finally dead bacteria from his septic shock had collected within his heart. A chunk of this debris had broken from within the heart and plugged a main artery. Death after eight days in Intensive Care had not been from cancer, but instead from a heart attack. Ironies. How they kick you in the teeth.
6
So David thought as he came closer to death in Intensive Care. Even now, after forty years, he remembered the autopsy report that he and his wife had received.
Dear Mr. and Mrs. Morrell:
On behalf of the physicians and staff at the University Hospital, I extend our sincere sympathy at the loss of your son. This letter is to inform you of the preliminary results of his autopsy.
1. History of Ewing’s sarcoma with no gross residual tumor identified. Detailed analysis reveals no evidence of malignancy. (David’s translation: The treatment worked. The cancer was cured.)
2. Status post bone marrow transplantation: successful. Healthy blood had begun to generate. (Translation: If Matthew hadn’t succumbed to septic shock, he’d have been home within a few days, on the way to complete recovery.)
3. Endocarditis, an inflammation of the lining of the heart, with abnormal tissue deposits on the valves of the heart. (Translation: Debris from the dead bacteria.)
4. Complete blockage of the left main coronary artery. (Translation: The effects of the treatment, not the disease, were what killed him.)
5. The lungs were heavy in weight and fluid, consistent with respiratory distress syndrome. (The oxygen pumped into Matt’s lungs to keep him breathing would eventually have poisoned his lungs.)
6. The kidneys were swollen. The outer layers were pale, consistent with damage due to septic shock. (If his heart hadn’t killed him, his kidneys might have.)
7. The bladder was inflamed and hemorrhagic. (How much can a poor kid withstand?)
8. Both the stomach and the esophagus had ulcers. (Why not? Everything else had gone to hell.)
9. A cerebral aneurysm was present in one of the vessels in the brain, an abnormal dilation of the blood vessel. He also had small areas of bleeding along the lining of the brain. (Sure, the consequence of the septic s
hock, and if the cancer hadn’t killed him and the heart attack hadn’t, maybe with Matthew’s bad luck, he’d have had a stroke.)
10. The liver was found to be enlarged. (Might as well throw that in. The chemotherapy was extreme, all right. After the removal of four ribs and a third of a lung, he wasn’t strong enough to bear any further stress.)
If you have any questions, please call [the letter concluded]. Sincerely …
7
David did have one question. How can life be so cruel? But the question at bottom was philosophical and an inappropriate response to an autopsy that proved his point empirically. Things fall apart. The center cannot hold. Watch out for the boogeyman. Eat your Wheaties. Say your prayers. Walk around ladders. Brush your teeth after every meal. Stay away from the teddy bears’ picnic. And count every second without pain or disaster as a major stroke of luck.
Entropy. That was the secret. The messiness of the universe.
As Sarie held his weakening hand in Intensive Care, David heard faintly, through the wheeze of the oxygen pump and a humming in his ears, the words she’d recited at Matthew’s funeral. How proud he’d been of her that day, how filled with love. The strength and composure she’d mustered against intolerable grief had made it possible for her somehow bravely to stand before the mourners at the church and to recite that day’s gospel, a text that with bitter irony happened to be from St. Matthew.
Sarie repeated it to him now. God bless her, she’d remembered the passage all these years. She spoke it again as she had with the same trembling voice combating sorrow so long ago. If he’d had the strength, he’d have reached up and hugged her just as he had before the mourners in the church so many years ago when she’d stepped unsteadily down from the lectern. The words were beautiful.