-Family get-togethers—I know you know all of this already but it is a big resentment of mine. It not only includes you changing the moods of our get-togethers by starting an argument (or more frequently just being uninvolved because a lot of times it was other people who started it!!), but that you weren’t there whether physically or emotionally. When you weren’t there it wasn’t the same. I wanted to cry all through Thanksgiving dinner this year because you were sad. Like I said before, that time is gone now. Who knows if we will ever get that again? It killed me to see you so sad and not yourself. That dinner would have been so much fun if you were there mentally as well as physically. You make everything 100 times better, Benny, just remember that.
Affirmations
-YOU ARE SO TALENTED! I have no doubt in my mind that you are going to be a fantastic writer. Go for it Benny. . . . I know you can do it.
-You’re so damn funny—seriously Ben, Robyn and I all through Christmas break tried to think of all the funny things you would do, and I really missed those things. Even when you weren’t trying to be funny (mashed potatoes on your face, etc.) People love you for that—you’re just fucking hilarious.
-You’re compassionate. You love to love and care about others. Your sensitivity is part of this—because you’re really open to other people’s feelings and don’t want to hurt them. That’s what was so weird about how you acted the past few years. The compassionate Benny was gone from the surface, but I knew that he was still underneath, and still felt bad for things he said or did, but just underneath. Let him out!! You have no idea how much people love him.
-You’re a great brother. You are protective over me and Robyn, which I love because I know I can turn to you if someone needs their ass kicked. Just kidding. But you will always be there for me, care for me and make me laugh. Same goes for you, Benny. Always know that you can count on me.
I love you so much.
Alison
On the last day of the family program, we meet at the treatment center for the “Ropes Course” exercise. The boys join us. We stand outside, where Ben D. and several other counselors blindfold all of us with bandannas and place our hands on a rope. I think Pat and Robyn are behind me and Steve is just in front of me, but we are staggered several feet apart, so I can’t be sure where the voices are coming from. We walk slowly over the frozen ground, slipping and stumbling over rocks or tree roots, heading to an unknown destination. We’re all nervous as we are led up and down some hilly areas and then through a copse of trees, where I stretch my arm out in front of me to avoid the tree branches. The person in front of me is walking too fast, and I hold back a bit, putting pressure on the rope.
“It’s okay,” I hear Steve’s voice just ahead of me. “You can keep moving forward.” Behind me, the rope stretches and tightens, and I find myself echoing Steve’s words: “It’s okay; you’re safe.” We walk through an open area, and a few minutes later, one of the counselors gently removes my hand from the rope and guides me to duck under a different rope, placing my hand on yet another rope. Now we are farther away from each other, spread apart, and I feel alone, abandoned, with just a rope in my right hand and no idea where the others are on that rope.
“You are in a maze,” I hear Ben D.’s voice off to my left. “You need to find a way out of it on your own. Hold onto the rope, don’t let go, and follow it until you can get out of the maze.”
I go round and round the rope in a circle, it seems, and then another circle—how many circles are there?—trying to find the exit point. Ten or fifteen minutes go by, and I’m getting more and more annoyed. I change direction on the rope, and a counselor removes my hand for a moment so I can pass by someone going in the opposite direction. I turn back around and then around again. I’m going to beat this thing.
I hear someone say, “I’m out,” and now the old competitive fire is really heating up, because he found a way out before I did. I was sure I’d be one of the first people out of the maze.
It’s cold; my hands feel frozen. I hear another person say, “I’m out,” and then I hear someone laugh softly. I wonder how many of us are still trapped in this maze. What is wrong with me that I’m not smart enough to figure this out? At one point, I try to climb under the rope, but a voice says, “That’s not the way,” and a hand guides me back into the maze.
I’ve had it. I stop and just stand there, stubborn, frustrated, pissed off. I realize there’s no way out of this damn maze; it’s some stupid trick.
“I can’t figure this out,” I say, fighting back tears of frustration. A counselor who is walking near me—or has he been walking beside me this whole time?—asks, “Do you need help?” Unable to keep the irritation out of my voice, I say, “Yes, I need help.”
He takes my hand off the rope, lifts it over my head, and lets me out of the maze. Then he unties my bandanna and says, “You’re out.”
“How did I get out?” I ask. I really have no idea.
He leans forward to whisper in my ear. “You asked for help.”
The “out” group stands quietly, watching the two people who remain in the maze, going round and round and round, getting more and more aggravated. They do not ask for help, nor do they voice their annoyance at being trapped in a maze with no hope of getting out. Like me, they are going to try to figure this out, damn it, and they are not going to ask for help. They stop only when they walk into each other.
“Do you want help?” one of the counselors says.
They both nod their heads. A counselor removes their bandannas. Pat and Ben look at each other, hands still holding onto the rope, eyes blinking in the bright sunlight.
12
help me
January–June 2006
Help me, help me. HelpmeHelpmeHelpme.
Here I am praying nonstop—me, the agnostic, the person who responded to the question posed by a teenager incarcerated in the detention center, “But Kathy, don’t you believe in God?” with the words, “I’m not sure yet. My faith is still under construction.”
Do I believe in God? I’m getting closer. Not to the God in the clouds or the heavens, not to the God that dispenses special favors to certain people but not to others, not to the God of Thunderous Judgments, Rapturous Returns, or Purgatory and Perdition.
What God, then? The Unknown God, whom I think I see in the wind moving the leaves in the trees or the grasses in the field. The God of Nature—perhaps the same God Henry David Thoreau met in the woods when he perceived that “every little pine-needle expanded and swelled with sympathy and befriended me.” The Mysterious God, who might have been there before the Big Bang, thus creating the universe, or who might have appeared afterward in an attempt to generate order out of chaos. The Gentle God, who might have—or might not have—created kindness, forgiveness, mercy, and love.
To the God who might be there but who might not be, who might listen and respond but who almost certainly will be too busy elsewhere, to this nameless mystery, this unfathomable ambiguity, I whisper, “Help me.”
And yet, sometimes I wonder if it is God who might need our help. The story about God searching for Adam in the garden haunts me. I know the gist of the ancient legend, of course—the serpent, the apple, the bite, the shame, the running and hiding—but I never understood it, really. What’s the big deal? The apples were sweet and ripe, Adam and Eve were innocents, and evil existed even in the Garden. Why did they have to run away and hide? Why was God so distraught? There was something about this interaction between God and Adam that got to me, worked its way under my skin, into my bones.
One day, while searching around on the Internet, I Googled “God and Adam.” The garden legend popped up, but it was a different version that I hadn’t seen before. At the end of the tale is a question.
“Where are you, Adam?” God asks. I hear the anguish in God’s voice, and I get shivers from my head to my toes. It happens every time I read those words: “Where are you, Adam?” I think about God looking for his beloved son, but Adam is hi
ding away in the bushes somewhere, covering his private parts with leaves or twigs or snake skins—who knows. The point is he is hiding, and he does not want to be found. I have to repeat that—he does not want to be found. And God, who can see Adam in all his nakedness, who knows exactly where he is hiding—because God, it is said, can see everything—has this sinking heart, because he realizes that his son is hiding from him. His child is lost and does not want to be found.
I see my son standing right in front of me. I see his brown eyes and his dark red hair, the color of brick dust, and his freckles, and his big smile, but I can’t find him, because he is hiding from me. He is right there, but he is hiding and does not want to be found.
Where are you, Benny?
At that moment, I want to cry out to the unseen heavens, “Oh, God. I know how you feel.”
Ben is at Gray Wolf Ranch, a residential extended care facility in Port Townsend, Washington, for four to six months. After his sixteen-day wilderness trip—“he did great,” Ben D. told us, “he was a real leader out there”—he spent one more week at Wilderness Treatment Center and then flew directly from Kalispell to Seattle, where a Gray Wolf counselor met his plane and drove him to Port Townsend.
Ben is beyond angry—fury doesn’t even begin to capture it—for agreeing with Ben D.’s recommendation for additional treatment. He’s also pissed that Wilderness decided to delay giving him his graduation coin—a gold medallion emblazoned with the Serenity Prayer—until he’d spent at least a month at Gray Wolf. They wanted to be sure he got there and stayed there. And every day, according to Kirk, his new counselor, Ben threatened to leave. But he stayed, knowing that we were not going to budge from our position that if he left treatment, he was on his own.
Gray Wolf is expensive; insurance doesn’t cover the cost. So, we get a second mortgage on our house and borrow tens of thousands of dollars from relatives. Maybe we’re foolish. Maybe we should let him go out into the world, knowing what he knows now about himself and his disease, and either find his way or stumble and fall. He will learn from his failures, and he will keep falling and suffering until he is sick and tired of it all—until he hits bottom. That’s the advice we get from friends and experts alike, who believe it does no good to throw so much money into treatment and extended care if Ben isn’t ready to quit. I understand the wisdom of that advice, but I also know what happens when people hit bottom. Sometimes they don’t bounce back. Sometimes they die.
The money doesn’t matter. Going into debt doesn’t matter. What matters is that we do everything we can to help Ben find his way. He’s lost now, but somewhere in there is the Ben who wants to be found. I know that. I have to believe that.
And so I pray. “Help me!” I am not praying for God to help me or to even help me; I am praying for God to help me help myself. HelpMeHelpMe. I am praying for strength, for courage. I need help in order to help myself. My prayer is both an acceptance and an acknowledgment: an acceptance of my inability to do this on my own and an acknowledgment that I have to pull my own weight. I can’t leave the heavy lifting to God.
“I say my prayers every night,” Marc, age fourteen, says in the detention group one day. “I ask God to help me. But I can’t blame God when things go wrong. He gives me a path to run down, and if I keep going down the wrong path, He ain’t gonna help me.” Like Marc, I say my prayers every night. I’m praying for reconciliation, reconnection, forgiveness—not just with or for others, but with and for myself. I need to reconcile and reconnect myself to what is rather than what might be or what could have been. I am struggling to let go and, in William James’s brilliant imagery, to give my “convulsive self a rest.” I’m not the one in control here. I have made mistakes. I have imperfections—so many of them, I’ve lost count. And I have wrestled with my lack of control, believing that if I fight hard enough and love deeply enough, I can make miracles happen and bring my son back to me, wounded but whole.
I cannot. I cannot save Ben’s life. That is his task, his challenge, his fate.
I add one more short prayer to my daily routine. Waking up I say, “Help me.” At night, after turning off the light, I place my hands together, fingers interlaced, and whisper, “Thank you.”
Ben has been at Gray Wolf for three months when I get the phone call from my sister-in-law.
“I think it’s time,” Jody says in a voice so soft I have to strain to hear her.
Time, I think. Time.
My brother John’s cancer has progressed. He does not have much time left.
I fly to New Jersey to spend a week with John, Jody, and their daughter, Casey, age fourteen. Casey is dying, too, of a rare neurological disorder called giant axonal neuropathy. She is unable to walk and spends her days in a wheelchair or propped up next to her father on the couch in their log cabin. Patch, her shih tzu, is always next to Casey and often sits or sleeps on the tray on her wheelchair, keeping her company.
There is something about Casey—some angelic presence pervades her, as if she is here on this earth but also part of another world. When someone is sad, she comforts them with her eyes or a hand raised slowly and with much effort, reaching out to soothe and console. Never once have I heard her complain. I’ll never forget when she was four or five years old, watching her siblings and cousins chasing geese at a park. Pat was with her, holding her hand. She looked up at him and said, “I haven’t learned how to run yet. Would you carry me?” He put her on his shoulders, and they ran across the lawn, her pigtails bouncing, her laughter ringing across the open field.
When all her cousins, aunts, uncles, brothers, and sisters are gathered together in the same room, all the loving energy radiates around Casey. It’s as if she absorbs that energy and reflects it back, a shining light of love and compassion. I often wonder if she is in pain but somehow doesn’t recognize it as pain, or perhaps the progressive nerve death offers this one gift of taking the pain away, purifying her of everything but love and gratitude. It is a mystery to me, and I am in awe of her.
“Be prepared,” my nephew Steve says when he picks me up at the Newark airport. Dark circles surround his eyes, and he looks at me with tender concern, choosing his words carefully. “Dad is very thin, very fragile. His liver is failing.” He clears his throat, and his voice is husky with emotion. “He’s jaundiced, Kath, and his skin is really yellow. Almost orange.”
When I see John, maybe I am prepared, because he looks stunningly beautiful to me, as if lit up from inside, a candle glowing in a dark place. I give him a hug.
“Hey, Johnny,” I say, willing back the tears.
“Hey, Kath. How are you?” His voice is surprisingly strong, and he places the emphasis on you. I’ve spent hours in doctors’ offices and hospital rooms with John over the past two years, and whenever a nurse or a doctor appears and asks the inevitable “how are you” question, Johnny always responds with the words, “I’m fine. How are you?” They love him, of course. Everyone loves John.
I remember the time, several months earlier, when I walked into his hospital room after the Whipple procedure—what seemed to me a medieval type of torture. In this complex surgery, doctors remove the “head,” or wide part, of the pancreas, which butts up against the first stretch of the small intestine, as well as part of the common bile duct, the gallbladder, and the stomach. After all the various and sundry parts are detached, disconnected, amputated, sawed off (I know, I’m being dramatic, but this is my brother’s insides we’re talking about), surgeons stitch together the remaining intestine, bile duct, and pancreas.
“Can I see your scar?” I asked. I was not morbidly interested; I just wanted to somehow walk this journey with him in every way I could.
“Oh, Kath,” he said, looking at my camera. “Really?”
I didn’t feel the slightest bit of shame at this invasion of his privacy, because in my mind, I was simply recording his enduring will to live. I wanted photographs that I could show him years later—because I had no doubt he would be one of the twenty percent
of pancreatic cancer patients who reach a five-year survival rate after the Whipple. He was strong, my brother—a former national champion swimmer, a self-taught woodworker, father of five children—and both gentle and fierce, quiet and outspoken. I wanted to keep him with me always, Whipple and all, forever.
He lifted his hospital gown and showed me the scar that stretched from one hip to the base of his sternum and looped back around to the other hip. I must have gasped, for he looked down at the scar and then back up at me, a child-like grin on his face. “Maybe it looks like a frown to you, Kath,” he said. “But it’s a smile to me.”
Aw, Johnny. Awe. Johnny.
One day, during that last week I spend with him, we are alone in the cabin, and John asks if I would mind giving him a bath. With my help, he strips naked and steps into the round Jacuzzi bathtub. He sits cross-legged with his head bowed. A small moan of pleasure escapes him as the warm water surrounds him.
“It just feels so good,” he says smiling, looking up at me. In his face, I see a little boy. I picture my mother bathing him when he was an infant and remember the bath-time song she used to sing to all of us in a high, sing-song voice. “Oh, I wish I was a little cake of soap. How I wish I was a little cake of soap. I’d go slippy and slidey over everybody’s hidey! How I wish I was a little cake of soap!”
John asks if I would wash his hair. I put a small amount of baby shampoo in the palms of my hands and massage his head. He doesn’t have much hair left, and he is so thin, so terribly frail, his shoulder bones jutting out from his back, his neck muscles stretched forward. His head feels so tiny, so vulnerable. Again he moans an “ahhh” of contentment, even of wonder. I ask him to close his eyes as I fill a measuring cup and pour water over his head; another “ahhh” of pure pleasure escapes him. He is a naked Buddha sitting under a waterfall—yellow skin, white bones, and shining soul, perfectly content, joyfully serene.
The Only Life I Could Save Page 18
