“There are no words,” we say sometimes, when the depth of our sadness is uncapturable or something is beyond our ability to communicate sympathy, empathy or understanding. We are speechless, and we say so.
Should we not try? Can we find some words?
A writing coach who read early drafts of my journey accompanying my little boy Brian through neuroblastoma treatment and eventually leaving his body, said he was surprised I would be making a memoir out of such an unspeakable, unfathomable experience. “It’s something most people can’t put into words, like “a tear in the sky,” he said, emphasizing the word tear as in torn, not teardrop. A tear in the sky. As he spoke, I wrote down his words on my yellow legal pad.
I wasn’t sure I would be able to form words out of my experience, either.
At B’s service, chords undulated through the sanctuary from Peter Johns’ piano alone on the stage, as his deep, mellow voice sang solo,
I'm finding myself at a loss for words
and the funny thing is it's OK
the last thing I need is to be heard
but to hear what you would say.
Word of God speak
would you pour down like rain[1]
…
Scott and I didn't know what song to play for the people who were going to come. We listened to a bunch of songs: Amazing Grace, hymns, the Beatles. Brian’s favorite song was “We will Rock You” by Queen. I remembered him rocking his bald head to it in the basement of the Ronald McDonald House in New York, holding a slice of pizza in his hand. The song was obviously not appropriate for the service. “I can only imagine,” the popular ballad by Mercy Me, didn’t fit; I did not know if I believed Brian was running into the arms of Jesus. We went to a Methodist church, but we weren’t “Christian music” people. But one of us found this song about not having any words and had the other one listen to it and I guess it fit, at least better than anything else. So we emailed it to Wick.
The other solo we chose was the Lord's Prayer, not knowing that after it was sung at his service I would be unable to even utter a word of it, even though it was said regularly at the end of most twelve-step meetings I attended. I stopped reading the Bible, too. I was tired. We stopped going to church, but not from lack of trying. I attended Easter service by myself, then Brian’s sister Lauren was “confirmed” five weeks after Brian’s service, after attending weeks of confirmation classes while her brother was dying. I had no idea what she was taught, as all my hours had been spent in the hospital. Scott and I sat off to the side during Lauren’s confirmation service, at a different angle than in Brian’s service, but all I could see was the coffin with the blue hydrangeas draped over it. We were still raw and broken. Scott’s tears flowed on and off as confirmation readings that sounded like more promises were read.
That fall, we attended a service called “the dark night,” an annual event held the night before All Saints Day, for people who had a loved one die that year. A few days before, Wick brought me a beautiful long, four-inch-wide red satin ribbon with Brian’s full name printed on it. Brian William Locher. I thought it was just for us, but learned the church had made a typo in some dead person’s name, so they cut up the correctly spelled names into cloth strips and had them hemmed for their families. I was still grateful he brought it. Still, I pictured the long, fully intact banners from all the years hanging from the ceiling in the sanctuary, Brian’s gangly-boy body among the all the gray-haired people with wrinkled skin.
I hung the satin sash in his closet with his clothes.
If I turned away from church, would I be forsaking God?
Maybe. But what kind of God would I be turning away from? One of broken promises, of shattered dreams? The God of a dead nine-year-old? The word “heal” appeared 380 times in my caring bridge posts over a four-year period. My own words echoed by our supporters.
April 3, 2014. Do not I fill heaven and earth? saith the Lord.. . . I will restore health unto thee, and I will heal thee of thy wounds, saith the Lord; And ye shall be my people, and I will be your God. Jeremiah 23:24; 30:17.
What had I believed? I knew my beliefs had to change, if I would ever find anything close to peace.
I had been raised in a fringe religion, the Church of Christ, Scientist, founded by Mary Baker Eddy in the late nineteenth century. Its teachings ran deep in the veins of my body (a body that was not real). Even though I had left it as an adult, its childhood indoctrination came rushing back to save my child when he got sick. And not just my own religion, but everyone else’s, which seemed to be everywhere. Whose words were correct? Was it the little book by Dodie Osteen, Joel’s mother who was healed of diagnosed terminal liver cancer by repeatedly declaring “the Word of God”? Or was it those of the prayer groups, the caring bridge sites, the incredible stories of mothers who handed their child over to God, the hole in the heart miraculously closed, the rare bacteria discovery, and then praising a God who loved them and had answered their prayers? God was the reason their child had lived.
I had to untangle not only the questions of my own beliefs, and actions therefrom, but of others and their actions. And all those words.
My writing coach’s words made me ask, “Yeah, why am I writing about this for so long?” I’ve thought hard about that question. Writing is not easy. But there are several reasons. One, writing is healing. The use of language helps to unwind complicated thoughts and feelings. Reading other people’s writing about grief, spirituality, what it means to live well, has helped me heal. Two, even though incredibly painful, parts of the experience were beautiful, and there were undeniable gifts. What happened was so monumental that it motivated me to live my own life with intention, a change from before. Three, it transformed my worldview on death. I haven’t found all the answers, but the value is in continuing to ask the questions. There is so much that isn’t talked about. Hopefully, my writing can inspire even just one person to expand their own beliefs by just being open to asking.
For a long time, I could not find words for any of it. The depth, width, and breadth of Brian’s absence, of the silence in our home, was overwhelming. It rendered me, like most others, speechless. Daily waking up to dread, my first inclination was to pray, out of habit, but my weary soul said, “whatever…I don’t feel like talking right now.” I had no words.
Gradually, after a lot of pounding my shoes on pavement, of feeling the sun’s warmth, the wind brush against my sweat, the air breathing in and out of my lungs, of reading more — new – words and of course, with time, I started to say, “ok, universe.” The only thing I knew is that the universe is way bigger than anything I can understand. It slowly became, maybe B is there (or here) somewhere, among the stars, in the light, still a part of the grand, infinite, unfathomable, universe, an expanse too mysterious for science or numbers or religion – or words – to explain.
But I knew I would have to try.
[1] Lyrics by Mercy Me.