Flowing with the Go (13 page)

After telling me this, she smiled and said that she saw me in the last group—the group that found a way to survive and be happy again. Is it ironic that I started crying? I did not feel like a success story. I was consumed with turbulent ideas:
I'm not done yet. I haven't figured it
all out yet. I'm still scared.

Am I scared because I still can't get my heart and my head around why I feel this was done to me? Is it because death tortures those who are left behind, not those who have left us? Do all grieving parents ask what they did wrong for something this horrifying to happen? Do all grieving parents question every mistake they ever made, every injustice they may have placed upon another person?

We don't want sympathy, and we don't want empathy. To accept sympathy is victimizing. To accept empathy suggests others have suffered what we have suffered, and I personally have a hard time accepting that kind of pain in another person. Perhaps that is why grieving people are so hard to support emotionally, especially in the acute phase of grief. For us to accept empathy brings forth guilt that others have suffered. We are also angry at the suggestion that anyone could possibly have suffered as terribly as we have. And even if someone's story is equally traumatic, our story is ours alone—we are walking in the only moccasins that we give a rip about. It's a vicious mind game where the rules keep changing—we can't cheat and we can't win. And we can't be the ref or on the sidelines—we have to play. And no matter who we are, we can never be prepared to participate in that kind of contest.

The death of a child is the worst imaginable experience a parent can face. Not only do we torture ourselves with the sinful vanity of our pasts, we become consumed with an anger that can easily destroy us. Even when our rational brain tells us there was nothing we could have done to prevent what happened, our irrational brain is full of the acrimonious commentary: if only . . . what if . . . .why didn't I . . . ?

I can picture that night in the hotel room vividly, like it was yesterday. The scene wreaks havoc on any compassion I may offer myself. Did I call 911 fast enough? Did I do CPR right? Should I have pushed harder? Was it something I let her eat? To be completely honest, I admit to a bruise on my heart, a place where I can't forgive myself. A painful bruise of responsibility. A feeling that if I had saved her, then so many people would not have to be sad, would not have to miss their sister, their friend, their teammate. A feeling that when people look at me, I remind them that she is gone.

A mother's heart says we protect our babies at all costs. I tried, but I couldn't save Carly. I was the only one there in the room, so I am the only one to know what it was like. I was the one who had to call her father and her grandparents. And yet, what if I hadn't been there? What if I had decided not to go on that trip? That would have been an even worse guilt. I could never recover. I am eternally grateful that the person who was there with Carly was me and not someone else—me, who loved her more than I loved myself.

It's said that people grieve as hard as they love. To be sure, every one of my trillion cells was proving that, aching with unbearable pain.

As I grieved, I was also tormented with wanting to direct my anger at something or someone. I certainly couldn't direct my anger at Carly. The torment of this conundrum is unbearable at times. In cases where a child is in a car accident, the parent might say, “Why did I let them drive?” Or the parent might direct anger at others involved in the accident. Or let's say a child is dying of a known illness; the parent can be mad at the illness, the doctors, the lack of a cure.

But what about me? Where do I direct my anger? I have no closure because I have no diagnosis. My beautiful, healthy, athletic daughter was completely asymptomatic and then she died—a girl who could run up and down a basketball court for hours, who could solo on a saxophone in an auditorium full of people, who was seldom sick and perpetually full of verve and an enviable passion for life. How does her heart just go crazy in the blink of an eye?

After Carly's death, we put my boys through a full cardiac workup at Children's Hospital. The pediatric cardiologist suggested that Carly had long QT syndrome, but did not see any signs of it in the boys. We learned that this condition is more prevalent in males, but more fatal in females. We learned that there are three variations of long QT. Two of the variants cause “episodes” from which the person can usually be revived. The mildest form causes people to faint often. The moderate form can cause fainting or cause the heart to stop briefly or beat irregularly. The third form is the one where the person has had no episodes—the first symptom is death.

The doctor inferred long QT as the culprit because Carly did not have hypercardiomyopathy, a blood clot, or any microbiological or toxicological evidence to support otherwise.

But that was not good enough for me. We pursued a genetic test, because there are several gene markers that have recently been discovered for long QT. This fairly new genetic test has a twenty-five-to thirty-percent chance of false negative and is still under development (science is uncovering new gene markers almost daily), but I still wanted it done. There is only one laboratory in the United States that does the test, which costs $5,000 and involves mapping of the entire genome. The logistics failed us. Carly's tissue samples were in a North Carolina laboratory, which apparently did not store the samples at the temperature required for successful genetics testing. The genetics laboratory reported that they had tried, but were unsuccessful in getting what they needed from the samples. I knew enough about molecular biology and biotechnology to ask, “How can that be?” It is possible to get DNA from a drop of blood. Science has polymerase chain reaction machines to amplify samples. How can the genetics laboratory not have enough information from Carly's tissue samples? I felt that the discipline to which I had dedicated much of my adult life had let me down—and hard.

I still have no answers. That I may never know haunts me. Some people ask why it haunts me. They say that finding out won't bring her back. I'm painfully aware of that fact. But to have some answers, then I will have somewhere to direct my anger or perhaps more easily embrace some degree of acceptance.

27
Butterflies

W
hen Carly was in kindergarten, she wrote a little piece of piano music with lyrics as an entry for the school district's Reflections contest. The Reflections contest is sponsored by the national parent-teacher-student association to bring notice to student work in the fine arts: music, drawing, painting, and photography. Each year, the contest has a theme and the submitted works must reflect the theme as interpreted by the artist. That year the theme was “Wouldn't it be great . . .” Carly's piece of music was titled, “Wouldn't it be Great if I was a Caterpillar?” The music exceeded my nonexistent musical ability, but was certainly age-appropriate and skillful for a kindergartener. I loved the lyrics. It told the story of a little caterpillar on a leaf; the caterpillar eats the leaf and goes into a cocoon, and the lyrics end with, “Wouldn't it be great if I was a caterpillar because then I could turn into a butterfly.” The lyrics describe coming out of the cocoon with beautiful, colorful wings and flying away.

My memory of this song is reinforced by a story my mom likes to tell. While visiting friends at holiday time in the San Francisco Bay area, my mom, like any proud grandparent, asked Carly to “do” her “Caterpillar Song.” Carly agreed, then became perplexed when she realized my mother's friend did not have a piano. “That's okay,” she chirped, “I'll do a dance with it.” And off she went singing her song and doing an interpretive dance. She got down in a little ball when the caterpillar was in the cocoon and then rose up as the butterfly was emerging. What I wouldn't give for a video of that performance. Carly was so spontaneously creative.

And so butterflies have always been associated with Carly. She would sit, still and patient, in the butterfly museum of the local zoo and wait for as long as it took for at least one to land on her.

The longer we are on this Earth, the more time there is for extraordinary pieces of our life to entwine themselves and bring to light an even greater significance than any event has on its own.

During one of my sessions with Kathleen, she shared an insight she had while attending a presentation given by a lepidopterist (a butterfly expert). The expert was describing how butterflies develop when Kathleen was struck by a revelation that butterfly development paralleled the experiences of her grieving clients.

When a caterpillar is wrapped up inside its cocoon, it becomes a gooey mess. Nothing is added to the gooey mess during this stage and nothing is taken away—it is a protected mess of churning protoplasm.

This is how people who are grieving feel. Our insides are a churning mess of emotional soup: chunks of anger, slices of pain, a dash or two of guilt, pinch of doubt, all agitating in a thick broth of sadness. So we cocoon ourselves. We close up with avoidance tactics. We wrap ourselves tightly in our own arms because we are the only arms that can do the job that needs to be done . . . the waiting job. During this stage, no one can help us. No one can give us anything. We are closed off.

Growth is all about timing. As the protoplasm churns, it begins to piece itself together into essential butterfly parts. The reassembly cannot be rushed. The butterfly cannot come out too soon. And the butterfly must get itself out of that cocoon as well. There is no assistance from other butterflies.

Moving through the grieving process is also about timing. Each person, like each species of butterfly, has a reassembly pace that only they endure. As much as the people outside of our cocoon would like to hurry us through reassembly, we cannot. To rush the healing process risks placing gaps in our stability. And likewise, no one can assist us during our own reassembly. It is for us to do alone.

The effort taken by a butterfly to exit its cocoon is part of the developmental process. The effort is exercise, which squeezes vital fluids to their organs and aids the elimination of lingering wastes. The protoplasm looks like a butterfly now. It emerges and rests. It is not ready yet to fly away. Given some time to dry off and move the last of the internal fluids through its new delicate and colorful wings, the butterfly will eventually launch and begin its new life. The caterpillar has been transformed.

With time and protection, grieving people also exit their cocoons. We come out only when we are ready. We come out whole, but new.

28
Succeed Not Cede

S
ometimes when you feel like giving up, you have to remind yourself why you held on for so long in the first place. I remember a training session where I had really wanted to give up. Jeff B ran the competition team class, and we'd had an especially tough workout that day.

Of note, Jeff's workouts are approached by prudent team members with respectful trepidation. Most sessions end with, “For all of you who puked, thank you. Way to go hard.”

Jeff is about five foot four and “a buck thirty-five,” but his presence looms about the gym as if he were Kratos, the winged enforcer of Zeus and god of strength, might, and power. He is in perpetual motion, buoyed by four pots of coffee and four hours of sleep a day. He has trouble getting his body fat above two percent. Jeff has a brown belt in Jiu-Jitsu, and in addition to his own fight training, he coaches fighters; directs, promotes, and officiates the local BJJ tournament The Revolution; officiates for the International Brazilian Jiu-Jitsu Federation; and has a “regular” job, a beautiful wife, and a couple of kids. Jeff was a featured fighter in the independent film Walking to the Cage (directed by Matt Hickney) and sports the cage name “Corporal Punishment.” Just in case you might fear Jeff, let his image be properly balanced by the fact that Jeff has strutted to the cage to the beat of the Sesame Street theme song. Lastly, Jeff has tattoos on the top of his feet. On one is the kanji symbol for honor, and on the other, the symbol for courage. Jeff is, quite literally, a man who walks his talk.