Sunday, August 29, 2004

Tales of Prayers, Repairs and i-Pods

We devote an enormous amount of time to simple maintenance. The house we live in always has something that needs fixing. If it's not the plumbing,it's the electricity. The shower door in the master bathroom needs rubber seals.I have ordered various sizes from an outfit in San Diego, each time with reassurance that this was finally the right size. Well, it never was and we finally hired The Shower Door Doctor to solve the problem. Dr. Jose sports two silver earrings and a gory Christian tattoo on his forearm. I paid Jose way too much money to slam thin strips of plastic on our shower door. But I did it because Karen and I cannot bear to live in the midst of broken things. We both come from homes where a broken air conditioner was not really broken. It was just... resting. We both come from homes where changing a burnt out light bulb was cause for a solemn family council. We both come from homes where the complexities of the Talmud pale when compared to a flat tire--a disaster beyond imagination. And so, when something goes wrong in our house, Karen and I spring into action the way Superman does when Lois Lane is threatened. There's no time to waste, for if we let these problems go, if we let them slide, they will multiply and we will drown in chaos.
The other day, the i-Pod that was a birthday gift for Karen, froze. Karen and I exchanged looks of pure terror for there is nothing as frighteningas a machine that seems to have a mind of its own. We are children of the 50's and as such we are reasonably literate about computers and bits and bytes, but technology is not second nature to us. Karen and I still vividly remember college and pounding away on manual typewriters to get our papers done. I wrote my first screenplays on legal pads and then spent weeks hunting and pecking on an ancient manual that I inherited from my mother. Karen wrote her dissertation on a more advanced machine: an electric typewriter.
Karen has a series of lectures on psychology that she listens to when she exercises. I downloaded the lectures to my Powerbook and from there to her i-Pod. Karen was relieved that we finally found a way for her to listen to the lectures in a way that enhanced her exercise time. And now the i-Pod was frozen.
After work, Karen came home with that determined expression on her face that I have come to recognize. It's the look that Olympic athletes have when they dig deep to achieve their goals; it's a look that I admire for when Karen makes up her mind to do something, it gets done.
Karen told me that she was going to The Grove, to the Apple Store, to have the i-Pod fixed. I was tired after a full day of working on a script for an animated film about the Baal Shem Tov for Rabbi Berel Wein's Destiny Foundation. This script has exhausted me; it has sucked the energy out ofmy brain in a way that no script has ever done before. How do you write about the Baal Shem Tov? How did he talk to his wife? How did he talk to his brother-in-law,Reb Gershon, who at first had contempt for the great founder of Chasidus? A thousand problems on each page. I was only able to crack the story when I imagined Ariel as the Baal Shem Tov. Once I saw my son Ariel in the role, everything fell into place. But as I said, I was exhausted and all I wanted to surf the blogs I like to read every day, and unwind. I told Karen that I was too tired to go with her. Karen was disappointed, I could tell by the way her shoulders sagged for a fraction of a moment. As she dressed to go, I realized that I was making a mistake. Here I had the chance to spend more time with my wife, even if it is just running an errand, Karen and I have a way of making the ordinary a bit extraordinary. And so, I told her that I was coming with her. You don't have to, she said. But I could tell, she was happy, relieved.
At the Apple store in the The Grove, you sign in at the Genius Bar. We had to wait for over an hour. Karen sat down and worked on a few of her psych reports. I attended the lecture given by a perky Apple girl about the i-Photo program. And then it was our turn. The Genius pressed two buttons on the i-Pod and zzzip! It was fixed. A simple reset problem. Karen and I laughed.
"That's all it takes?" we said.
"Yup."
Karen and I were seized with the same thought at that moment: why couldn't Ariel be fixed in the same way? Wouldn't it have been just and good if some gentle geek could have reset Ariel and poof, the brain tumor would have just disappeared?
How is it that we can fix our i-Pod, but not our child?
We drove home and talked about Ariel. Karen is only now beginning to feel his absence. She maintained faith in his ability to cheat the angel of death until the very last moments of his life. I was prepared for his death months before it happened. Something in me did not permit a belief in further miracles. Somehow, I sensed that Ariel had used up his allotment of miracle. At a certain point, the statistics outweigh even the most stubborn and righteous beings.
Back home, I wondered if Ariel's soul is hovering in his room, in our house. And if I know for certain that it is, that his soul is here, why don't I feel it on a deeper physical level? Is it because I lack faith in Hashem, or is it because a soul without a body does not have the authority that the soul with a body commands?
In our house, where Torah is the primary authority, the rational and the irrational bump into each other on a daily basis. But ultimately, the religious, the irrational, is the only comfort that endures.
That night, I was unable able to sleep. I padded downstairs and crept into Ariel's room. I clamped the i-Pod to my ears and listened to the MiamiBoys Choir, some of Ariel's favorite music. I stretched out on his bed andsoon I crossed over into a heavy twilight. I recalled a Chasidic tale I heard as a child.
Once upon a time, The Baal Shem Tov and his disciples met at shul to say the morning prayers. Just as the Baal Shem Tov was about to enter the shul, he hesitated. He refused to cross the threshhold.
"What's wrong, Rebbe?" asked his disciples.
"It's too crowded," answered the Baal Shem Tov.
"But Rebbe," said his perplexed followers, "the shul is empty."
"No," exclaimed the Baal Shem Tov. "The shul is crowded with stale prayers."
Perhaps that's my problem. My life is crowded with a lifetime of stale prayers. Maybe it's my stale prayers that need to be repaired. But I cannot fix them because Ariel is no longer here. I was the father, but Ariel was the teacher.
Karen Comments. Robert, you neglected to mention that just two days before, I went with you to the Apple Store to fix your i-Pod,and we spent two hours there. I also felt somewhat entitled (childishly)that I should get some company fixing the i-Pod, since after all, it was a present from you. But I also felt frustration that even when it seems so complex, when the computer genius was showing us how he cleaned up all yourprograms, and gave the computer a clean bill of health, we couldn't do the same for Ariel. We could not find the replacement part, the lung he needed,and we were helpless. The flip side, however, is somewhat reassuring. We are not machines, there is something beyond circuitry and electronics. We have an eternal neshama. Even when we are alive you know you feel your soul apart from your body, it is that internal voice that makes you, you. I know that scientists are working on artificial intelligence prototypes, but I don't think they will ever succeed. I know that despite current brain research,no matter how specific brain functions are located, they will never find the locus of the human soul.

Tuesday, August 24, 2004

The Name

Even now a year after Ariel's death, I wake up every morning with a sense of disbelief. Is this my life? Did it really happen? My stomach clenches like a fist, and I have the urge to pull the covers over my head and just stay in bed--forever. I move through my morning rituals like a sleepwalker. Daven. Eat breakfast while reading the newspaper; wonder why I'm reading the newspaper when the stories seem written by a committee of fools, men and women who have not the least understanding of the evil that now crouches at the door of civilization.
Being a screenwriter is not steady work, but it gives me the freedom I cherish. I walk into my office, fifteen paces from my house, sit down at my desk and wrestle with whatever script I'm working on at the moment. But the words that use to flow like water come harder now. I measure each word with the precision of a finicky chef. I write and rewrite and rewrite some more. I am no longer able to lose myself in the plots and make believe lives that I am creating. My reality has become so powerful, so overwhelmingly real that each foray into imagination seems like a flight from my true memories. And I don't want that to happen. I want Ariel's memory to remain more real than anything else. For anything else feels like a betrayal.
I sit before my computer, study the dialogue I'm writing and sometimes just say his name. Ariel. I say it again. Ariel. I chant it over and over again like a medieval Kabbalist repeating the sefirot. Ariel. Ariel. Ariel. Karen steps into the office to say hello. She takes one look at my face and she knows.
"Are you okay, Robert?"
I shrug.
"I was just thinking about him too," she says.
We look at each other.
"I have to get back to work," she says. "Will you be okay?"
I nod.
She turns to go. I reach out and hold her. I have been in love with this woman since I was ten years old. We have gone through so much together. If anything happened to her I would stop breathing.

Tuesday, August 17, 2004

Transformed

Karen and I enjoy the coziness of our home. We keep odd hours, idiosyncratic schedules that invariably finds one of us wandering around the house at three, or four in the morning. So, it's not easy for us to have guests, especially sleep-over guests on Shabbos. But when Yachad, an important Jewish organization which organizes tours and social groups including both disabled and abled youth, called and asked if two counselors and two campers could stay with us for Shabbos, we had to overcome our habitual impulse towards privacy. Clearly, this was a special situation, and our answer was clear.

When Ariel was sick, people took the time to visit him day after day, month after month. Karen and I recognized that visiting the sick, helping those who need it, is a mitzvah of paramount importance. And so, when our guests finally did show up, imagine our delight when we fell into easy conversation with each of them. David has a huge smile and a wicked sense of humor. Kobe knows movies backwards and forwards. Counselor Aaron, an audiologist when not volunteering his time to Yachad, smiled happily when he learned that I wrote and produced A Stranger Among Us. It was, he said, one of his favorite films. Jason, Director of Community Affairs for Yachad, is active in national politics and opened my eyes to a whole range of halachic questions that have arisen because of the new activism of Orthodox Jews in American politics.

Kobe and David shyly asked if it would be okay if I took their picture with the Emmy I won a few years ago for The Devil's Arithmetic. They grinned and chuckled as I took the picture and instructed them to thank the academy. Right before Shabbos, David asked who owned the Transformers. "They belong to our son, Ariel, " we answered. David told us that he absolutely loves Transformers. We did not tell David that Ariel died. That our son is no longer here to reminisce about his childhood toys. But for one brief moment I was tempted to give David one of them. Would Ariel have wanted me to? I just couldn't decide. Ariel never threw away any of his toys. And the truth is, I need them. I cannot imagine the space in Ariel's room without them. Right before Shabbos, David and Kobe presented themselves in their Shabbos clothing. Without thinking, I shot forward and fussed over the boys: I meticulously buttoned David's collar, straightened Kobe's waistband. I complimented them on how handsome they looked and I remembered how I used to take such pleasure in helping Ariel knot his beautiful silk ties.

After the Yachad group left for their Shabbos program, Karen and I felt hollowed out. Ariel's absence was more pronounced than ever before. We actually sat up on Friday night, and waited for the boys to return. At the end of the weekend, after our guests went home, we experienced the emptiness of the house in a new and raw way. I am father to two wonderful girls and I relish each and every moment with them, but I miss, oh how I miss, being father to a son. I am still Ariel's father. I will always be Ariel's father. But the small, intimate male rituals are gone, and life without them is a pale shadow of what it once was.

Karen Comments: I had the same thought, I contemplated whether we should offer one of Ariel's transformers to David. I did not raise the idea because I sensed that I would be putting Robert in an awkward dilemma. But there was another reason. I feel attached to Ariel's favorite belongings. Ariel was a generous person, but these objects were precious to him, he loved to talk about the process of acquiring his favorite, humongous Transformers. I kept quiet because of my own need as a conservor, a guardian of the few material objects that Ariel loved. Sometimes love causes me to be selfish. Guilt ensues.

Thursday, August 12, 2004

Cardiac Event

Karen and I have learned to keep busy. Work, projects, errands, anything to keep the mind busy, to keep our thoughts racing along so we don't have time to obsess over Ariel's absence. I write my scripts in the morning. The afternoon is devoted to Seraphic Press, our new publishing company, established as a memorial to Ariel and his desire for fine literature appropriate for observant Jewish teens. Memories of Ariel are inevitable whenever I'm in a medical setting. A few months ago, I was in for a routine cardiac evaluation. A dozen wires were hooked up to my body. I thought about Ariel. In the last weeks of his life there were so many wires and tubes running in and out of his poor body that just turning over in bed was a major move that required the assistance of two nurses. I would help Ariel shift positions and marvel at his patience. I'm sorry this is such a pain, I said to him as we tried to maneuver through the chaos of wires. Ariel merely smiled his adorable half smile and said, No problem, it's a challenge. As the cardiac nurse ran tests on me, the tears started sliding down my face. I tried to hold them back, but once you start crying for a dead child, well, it's almost impossible to stop. The nurse looked at me and asked if I was in pain. No, I sobbed. She bolted out of the examination room, certain I was having a cardiac episode. The doctor entered. My doctor is also my friend and goes to synagogue with me. He and his wife visited Ariel a few times a week. They are close friends. The most decent and fine people I have ever known. And so as I lay there crying, he tried to comfort me, but soon he too was weeping. Ariel was a tzaddik, he sobbed, he was a tzaddik. The machines beeped. My heart pumped. The odor of disinfectant, that sickly hospital smell, made me vaguely nauseated. My friend, my doctor, gently removed the connections and sent me home. Why was I crying? I asked Karen when I got home. Was I crying over all that Ariel endured? Yes, but I was also crying because we did not save him. He suffered so much and our job as parents is to protect our children. We tried. We did everything humanly possible to save our son. We got second opinions, third opinions; Karen is probably the world's leading expert on germinoma tumors. The rational part of my brain understands all this. I know that ultimately we can only do so much. But don't you think that after a child suffers so much, endures so much agony that his life will be spared? I keep seeing Ariel's face. Looking at us, I knew that he trusted us. When a decision had to be made, a difficult medical decision--and there were dozens and dozens, Ariel would look at the doctor with his effortless smile and say, I trust my parents. They know what's best for me. I hear his voice a hundred times a day. And I worry that somewhere along the way we made the wrong decision. Karen says that we did all we could. She reminds me that just the other night I assured her that Ariel wouldn't have lived as long as he did, eight years post tumor, if we hadn't done our research, investigated all the options and consulted with multiple specialists. We always opted for the cutting edge treatment, the one that would give him a better chance, even when it meant more cycles of chemo, more radiation. She says she still feels defeated, but does not doubt our efforts. I think she is able to say this because, whenever she felt that Ariel was vulnerable, that the nurses not up to speed, she chose to sleep at the hospital, keeping her vigil. She tells me that Ariel appreciated us, he did trust us, and with good reason. It's just that G-d had a different plan.


Monday, August 09, 2004

Seraphic AA

Karen writes in her Shabbos note: I feel like I've been in a protective bubble all year. More recently, perhaps because I'm less distracted by work, or perhaps I've been protected because I needed to be gradually eased into the pain. But I am actually beginning to miss Ariel. Before, I felt his presence as an abstraction, now I miss every physical part of him, his voice, his look, his steps. Will the shudder that overtakes my body diminish when I make contact with the pain? Will the physical manifestation of grief fade as the barrier dissolves? I don't know. I just feel that Ariel's death is finally being incorporated into my reality, a bridge is being formed between my old life and my new life. I guess that's what's called "working through" or "integration." Again, the real feeling approaches. Our Shabbos table is very quiet. Karen and I are alone. Our girls are both away. Karen and I chat. Karen shows me the latest kashrus guide from Trader Joes. We analyze the various kashrus logos. I'm fixated on the graphic element; what works and what doesn't? Karen wonders which hechsher our community accepts. The politics of kosher certification is Byzantine. Sometimes, downright ugly. We clear off the table. In the living room, Karen and I sit in our chairs and read. I'm in the middle of eight or nine different books. I read a chapter in one book, put it down, move on to the next. ADD, anyone? Actually, I prefer to think of myself as a restless intellect. My high school rebbeim had another word for it: undisciplined. My reading on Shabbos night is never productive. My body is set to go to sleep as quickly as possible. So I sit in the chair and read the same sentences over and over again. My head droops like a flower after the sun goes down. Shabbos is hard. It is Shabbos without my son, Ariel. The quiet penetrates. I feel Ariel's absence as a physical ache that never lets up. The reality of his non-being becomes more real with each passing day. I keep asking: Where has all his learning gone? All that Torah, all that knowledge? I know, I know, he's in yeshiva shel ma'alah; he's learning with the gedolim. But I'm sorry. That does not make me feel much better. I want him here. I want his flesh, warm against me as I hug him. I want him, not the idea of him, not the memory of him, not his spirit. No words of consolation can fill the void. No abstract angelic images convince. Perhaps I'm not religious enough. One of my best friends in the community is an alcoholic. He's observant, with wife and children, but if he did not go to AA, he would sink into a life of alcoholic debauchery. A few weeks ago I told him that if I could I think I'd like to become an alcoholic, just to drown myself and forget everything. What's stopping you? he said with a smile. I'm allergic to alcohol, I explained sheepishly. I get migraines just smelling liquor. My friend laughed and told me that a real alcoholic drinks no matter what. Maybe a drug addict, I suggested. Anything to get away from this awful reality. My friend, let's call him, Gabriel, took me with him to an AA meeting. It was an astonishing cross section of men: no women at this meeting; this was a AA shteibl. There were business executives, blue collar workers, one genuine rock star, a famous actor. I sat and listened as one after the other they described all the awful things they did because of their addictions. The tales were harrowing. Lies to spouses. Adulteries. Theft. One man, a Russian Jew with the delivery of Henny Youngman, spoke of taking his infant child to a crack house. Buying drugs instead of formula. These men all rely on the support of their fellow AA members. It is touching to see the genuine care and love extended to the most fallen of the group. Several men introduce themselves to me. They assume that I'm another alcoholic. I feel like saying: I'm actually the father of a dead child. But can I stay anyway? IN AA they keep referring to a Higher Power. Higher Power? It's like something from a science fiction movie: Higher Power Battles Godzilla. What the heck is that? Soon, I realized that they were talking about HaShem. I thought to myself, why don't they say, God? That is His name. And after the meeting is over, the men rise, join hands and intone a prayer. Some have tears in their eyes. Others smile with the release of a burden too heavy to bear. Gabriel explained that calling HaShem the Higher Power is AA's way of including everybody, even atheists. Okay, I get it. And I realized that these men have are just another break-a-way minyan. The shul they were going to failed them. The medical establishment, the psychologists, clergy, all failed to understand them. And so, they built their shul. But certain truths follow; and it becomes increasingly clear to me that no matter where you go, no matter what the society, it always comes back to HaShem. Man eventually has to come to grips with his finitude. The world, it is too large. The world, it is too dangerous. The world, it is too overwhelming for us to cope with no other reference outside of ourselves. So, my plans for addiction (never serious, merely the ravings of a bereaved father who has never even tasted beer) are dashed, and I'm back where I started. The AA people speak of a Higher Power. Karen and I believe in HaShem and so we must extend that belief into the final realm. The place where Ariel's spirit now resides. I must go on without him. I can't. I will go on. I don't want to. I write one word after another. Take one breath and then another. I see him. I can touch him. But he is not what he was. And somehow I have to live with that.

Wednesday, August 04, 2004

Breathing More Efficiently

It is the middle of the night. I don't know why, but suddenly I'm awake. Something has pulled me out of a deep slumber. I hear someone crying. Am I dreaming? No, no, it's in my right ear. Sobbing. "Karen?" "Yes?" "What are you remembering about Ariel?" "I can't remember what his running shoes looked like," she sniffles. "The blue ones?" I ask. "No, they are black," she says. Ariel went to pulmonary therapy a few times a week in the last months of his life, when he was still strong enough. The idea was that he had to be in the best shape possible to endure the lung transplant. "He has to learn how to breathe in a more efficient way," his nurse explained to me. Karen bought him running shoes. For several sessions he was on the treadmill and the rowing machine in his yeshivish black shoes. Susan Clark, his loving pulmonary therapist insisted that Ariel had to have proper shoes. Karen went out and bought the right shoes for him. I can still see Ariel's face when he finished his exercises: flushed with a healthy pink and a thin sheen of sweat he would smile hugely and say, "I did forty-five minutes today, Dad." Ariel loved going to the pulmonary therapy sessions. It did not take too long for the nurses, deeply religious Christians, to cleave to Ariel. Susan Clark, the director of the unit took me aside and said,"That boy of yours, Ariel, he's special." It is not going too far to say that Ariel loved Susan. He spoke of her with a profound tenderness and respect. It was hard, so hard for Susan to hold herself back from hugging Ariel. He explained the halachas to her, and she was perfectly appropriate, but she told me, "I really want to hug Ariel. It's just killing me that I can't even shake his hand." The other patients peppered Ariel with questions about Torah and belief. Ariel, in his patient and gentle manner, educated these people in a way that was entirely new to them. Here was a whole new universe that Ariel had entered and reshaped through sheer force of goodness. Karen holds me and sobs."I can't believe that it's taken me this long to feel his absence," she says. "I 've gone for so long not letting myself face the truth. How could I have done that?" We stay locked together for the rest of the night. In the morning, I go down and daven, then enter Ariel's room, open his closet and take out his sneakers. They are black. I got it wrong. How could I have forgotten what color they are? What else have I forgotten? What else will I forget? The shoes still hold the imprint of his foot. It is a poignant indentation. More personal than any other article of clothing. I press a shoe to my chest, and I hold my breath. I hold it for as long as I can. My head swims, my heart races, my face aches. Is this what he was feeling? Is this what the fibrosis did to him? I explode and gasp for breathe. I hold Ariel's running shoe to my chest. I gasp for breath and just sit there trying to remember everything.

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