I hate Galveston.
When I look out over the seawall, I find no peace in the sounds of wind and wave or comfort in the roiling swirls of water gently crashing into the jetties. I see only the bodies of children being dragged and slammed with senseless violence against the sand just beneath the waves. As I look out over the Gulf of Mexico, I see only a sadistic child-eating monster mocking the hole in my chest.
And May is the cruelest month, because it was Mother’s Day in 1992 that I lost my niece and nephew to the powerful spring rip tides along the coast of Galveston. My niece, Cindy, who was seven, was pronounced dead on the beach, but my nine-year-old nephew, Doug, was flown to John Sealy hospital and placed on life support. Although the doctors offered us no hope of his recovery, he was kept on life support for 72 hours to monitor his brain activity.
During that agonizing 72 hours, we did what most families do. We held his hands, stroked his hair, talked to him, read to him, took him his favorite stuffed bear, massaged his legs, and loved him with every ounce of strength we had. At the moment they stopped life support, the Galveston radio station played his favorite song, “Born in the USA.” Yes, we were on the radio. We were on the news. Our family’s grief was broadcast on the nightly news. I avoided the cameras, but the children’s father was there, tears cascading down his face, explaining how he felt about the death of his children. Who needed this explanation?
Perhaps it is surprising, and perhaps it is not, that I decided to enter the medical humanities program at the University of Texas Medical Branch in Galveston. I spent years driving to Galveston and going into the hospital where my nephew died. Sometimes I avoided the building, but other times I went there and sat in the garden specifically to think of what had happened before. When I completed my required ethics practicum, I went on rounds with the doctors in the pediatric ICU—of all places.
As part of this experience, I was able to witness conversations with doctors and the parents of children who would never recover. The doctors were kind, caring, and professional, and every word destroyed me a little. I imagined the conversations the doctors and nurses must have had regarding my family in 1992. I imagined how they debated the proper course to take: how long to keep him on life support, how to break bad news to the family, and how to prepare for the death of a nine year old. I had thought this experience might help me come to grips with my past trauma, but I honestly cannot say it did.
As medical humanists, we study the ways people make meaning of suffering, but I want to tell you with great heartfelt certainty—there is no meaning in the death of a child. And when you try to make meaning of it, you rob me of my grief. I am entitled to my grief. My pain is my own. When you tell me the children were on loan from God, and he has called them home, I am only amazed that you worship a monster and call it God. When you tell me they are in a better place, I want you to know that the world they left behind is immeasurably worse for their absence. When you tell me anything, you amplify my pain and submerge me in the depths of despair with no comfort and no meaning.
What does someone grieving the death of a child need? Solitude. And comfort. Silence. And conversation. A distraction. A project. Time to do nothing. Time to think. Time to cry. Time to scream. Time to fall apart. Time to get it together. There is nothing you can do. But, really, you should try. And you should know when to back off.
I can remember talking to priests, ministers, social workers, counselors, and well-meaning friends. No one can really offer any comfort, but a few people managed to refrain from intensifying the pain. In particular, Robert Schaibly, who was the minister at First Unitarian Universalist Church in Houston at the time, offered sincere condolences with no advice, no explanation, and no demands. He was empathetic and shared my pain without taking it as his pain. No other clerical person I met was able to achieve something that seems so simple. Perhaps the simplest acts require the greatest art.
- Know your limits. If school is too demanding or overwhelming, set aside two hours each day for meditation and exercise.
- Learn to say no. If your job is draining too much energy, take an extended vacation or, if that is not possible, start leaving work in the early afternoon to have a walk in a park.
- Reduce your to-do list. If unemployment and search for work is stressful, set aside a couple of hours each day for watching a movie and eating snacks.
- Stay connected. If you are feeling lonely and unlovable, remember to discuss it with a friend or trusted family member.
- Avoid the people who stress you out. If your marriage is creating too much anxiety and uncertainty, abandon your spouse, children, pets, home, and reputation in order to gain some “me time.”
- Remember the silver lining. If being ill is stressful, remember to focus on the positive things in your life such as pain reliever and warm blankets.
- Focus on the big picture. If a diagnosis of a terminal illness is causing stress, remember it won’t last forever.