My sister, Dinah, has Prader-Willi Syndrome (PWS), a disorder of chromosome-15 that has left her mentally and physically handicapped. While the life expectancy of someone with PWS continues to increase, many die in adolescence. Dinah just celebrated her sixtieth birthday as the oldest person with PWS in Arizona.
When our mother died in 2012, I drove the 150 desert miles from Phoenix to Tucson to give her the terrible news. When I told her our mom died, I thought her wailing would shatter the windows of heaven. I prayed her screams would drive God to cower in the corner. A few hours later we drove home together in silence. Within three days, Dinah and I would stand at the foot of mom’s grave and throw dirt on her casket.
Three months after the funeral, Dinah and I were having lunch. Despite her low IQ and difficultly speaking, she has the wisdom of a crone. She also has the connection with God of that of a mystical saint. A few people have dared ask if she really understands that our mother has died. I try not to bite back in anger when I’m thrown the question that I can only hear as ridiculous.
Admittedly, though, even after our sixty years together, my conversations with Dinah can appear like a combination of playing 50 questions and charades. She starts by naming my children. I tell her every obscure detail I can think of about them. She’s always most interested in our grandchildren and our dog, Jesus. On the day of our lunch she worked her best to tell her stories, stringing three or four words together, followed by silence. Then she would say another word or two. I ask a question. More silence. Often, no matter how hard I try I don’t understand what she’s trying to tell me. At those times she usually says, “You no hear me.” Then she ponders her next words. She usually gives me a couple of attempts before she gets frustrated and says, “No mind.” She moves on. I miss my mom the most then because she understood Dinah the best.
Lunch finally arrived at our table. Dinah is always very intent on eating, part of being PWS. There is very little conversation during the meal. That day I idly offered a few rambling stories. When the plates were taken away, she resumed her questions about the family and the dog. Somewhere in the little strands of conversation she told me she had washed her hair that day.
“Do you wash your hair every day?” I asked.
She nodded an affirmative yes, as if to say, “You idiot, don’t you?”
I smiled the sheepish grin of an older brother who has just stepped into a little sister storm. I tried to recover. “Do you blow dry and style your own hair? It looks nice.”
“No, Joey,” she said making reference to her beloved caregiver.
“You have beautiful silver hair Dinah,” I said in truth.
She said without hesitation, “My momma’s hair.”
I wanted to cry, but I held my emotions below the surface. Silence was the best I could afford.
After a few minutes she said, “Momma no more.”
We sat there for five minutes in pristine silence. It was as if the entire restaurant, the outside world, and God herself had stopped breathing, in communal grief, waiting to hear what Dinah would say next.
Then she shook her head as if to drive the thought of her dead mother out of her mind. She looked at me and changed the subject back to the dog.
Driving away from her apartment hours later, I wondered why she said momma no more instead of my momma gone, or bye-bye momma, which she said at the viewing before the funeral. I have heard a few people tell her mom is with God in heaven, but she didn’t say any of those things. No. Just, “Momma no more.”
Was she giving testimony to the cold hard existential reality of death? Or was she making a comment about the loneliness we experience as sister and brother without our mom? Or does she know something about the afterlife? Can she see the other side, or the lack of it?
Listening to my sister is like doing dream work. The conversation is full of odd images, strange messages, and unfamiliar characters. What did that word mean? Did her lifted eyebrow have a hidden meaning? I couldn’t figure out exactly what she was saying. Was that about her friend at work or a neighbor? Maybe she was making a connection to some larger meaning about life? Listening to Dinah is like hearing the collective unconscious deliver some hidden message of archetypal importance.
I can’t always understand what she is trying to tell me. I can only do the hard work of listening and continuing to process and reflect, hoping I will uncover some koan. It’s impossible to know what she knows or feel what she feels. I can only know what I feel when I listen to her. The silence between her words has been transformative in my life.
People tell me I’m good listener. I imagine that may be true only because I’ve spent a lifetime working hard to understand every unspoken syllable trapped inside my sister. Spiritual director and author Margaret Gunther calls that “Holy listening.” I’m convinced such holy listening can transform someone with authority into an adaptive leader. A community that experiences being listened to by their leader—a leader who uses holy listening—will be more likely to invest their energy and wisdom to the cause at hand. The leader who can listen in holy presence to a community struggling to articulate and discern the future of their life together, will be quiet enough in his or her own soul to allow others to hear the Spirit say, “You do hear me.” Those words, heard in communal silence, can move any relationship or institution towards becoming a discerning community. Because truly no one wants to hear the Spirit say, “You no hear me.”