My sister has Prader-Willi Syndrome (PWS), a disorder of chromosome-15. Dinah is 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 that ridiculous question.
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 our children. I tell her every obscure detail I can think of. 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 at 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 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.
“Blessed are the poor in spirit, for theirs is the kingdom of heaven. Blessed are those who mourn, for they shall be comforted.”
The divorce rate for parents with a PWS child is eighty-percent. Siblings of a PWS person are most likely to be estranged from their brother or sister. People with Prader-Willi Syndrome, their parents, and their siblings are all usual candidates for chronic and severe depression. My family beat the odds on two-out-of-three of those statistics. My parents maintained a loving relationship for sixty-four years. My sister and I are extremely close. But, my sister, my mother, and I have suffered from life-long chronic and at times severe depression. It took me fifty years to admit that, seek help, and then have the courage to say that publically. My family has been poor in spirit. And we have suffered grief.
Grief results from loss. Typically we think of grief being associated with loss from the death of a loved one. My mom, however, suffered depression from the loss of “what she had hoped for and what might have been.” She suffered as well from the simple and complex daily life of living with a mentally and physically handicapped child. Depression can be the result of grief, though not always. Sometimes depression just is—there is no cause—it just exists in someone’s life. Depression is not cured—it is only managed.
One of the tragedies that exist in our world today is that depression and all other forms of mental illness are typically hidden and rarely talked about. It’s okay to admit that I have some physical illness. People even offer to pray for us.
But what about mental illness—it’s not something we are typically willing to share with others. And usually if we do, people feel awkward around us when we talk about it. So what do we do when our family or friend tells us they are suffering from depression or some other form of mental illness?
First, be present by listening to them. Truly listen. And don’t offer any advice, like, “Just turn it over to God and everything will be okay.” That is not helpful. The most frustrating thing in the world for me is when my sister says, “You no hear me.” But, honestly, I feel equally as frustrated when I’m trying to explain to someone what it feels like to be depressed and I know they just can’t or won’t listen. I probably should start saying to them, “You no hear me.”
The second thing you do is to take their illness seriously. People who are depressed or suffer from other mental illness need support and care. Tell them you will pray that they will find the help they need so that they will have relief from their suffering.
It’s strange to think that Jesus said, blessed are the poor in spirit for theirs is the kingdom of heaven. Being poor in spirit doesn’t feel very heaven-like. But, when someone really listens and is present—that person feels like they are being God for me. I feel blessed when they listen. Maybe that’s what Jesus meant?
Amazing Grace Redux | Cyndi McCoy
5 days ago