Saturday, September 28, 2019

LISTENING FOR FATHER'S VOICE

1The Lord came and stood there, calling as at the other times, “Samuel! Samuel!
Then Samuel said, “Speak, for your servant is listening.”
I Samuel 3:10
"I don't think I can do this much longer," says Allen. He sits in a dining room chair, the image of discouragement; head down, elbows on knees, tall body leaning forward.

"Do what?" I ask. I am trying to remember if it is Chicago or Terbium that uses footnotes as I scan a new document. I turn in my own dining room chair to look at my son. My lack of energy to negotiate space in my office the past few weeks has moved my laptop and printer to a fold-out Ikea table in a corner of the room that was so recently Ron's. Allen now fights space aliens on the desktop HP upstairs.
 Maybe I'll take it back someday. Maybe I won't. Maybe I feel closer to my husband down here, where he spent his last nine months.
"You know," Allen shrugs. "Trying to get Dad back."
"Oh." I sigh. I remind myself many times a day that autism grief is not neuro-typical grief. In the last two months--almost three--Allen's magical thinking has kept the hope alive that his father will return from the dead. Even though he participated in the funeral and saw his father's body lowered into a grave, he continues to hold onto the possibility of a Bible type miracle.
"It's just not fair that I can't talk to him anymore," my son continues. "No matter WHAT"-- and he emphasizes the word by raising his hands up--"I could always talk to him." Tears form in the corners of his eyes.
He, like me, is remembering phone calls from hospital rooms when Ron would call to say "good-night," days he sat in his easy chair in the living room and called out a booming, "Hello!" to whoever entered the house. I hold back my own tears. I, too, miss my husband's voice.
My heart aches for my youngest child. Injured when Allen was young, Ron was never able to run and play with him the way he did with Bonnie and Dennis. The only father Allen has ever known has spent more time in hospital rooms than home.
But a Dad is still a Dad. 
"What do you think we should do?" I ask Allen, whose position on the upper end of the autism spectrum makes the finality of death a difficult concept to grasp. Almost every Saturday has found us engaged in another magical outing, gathering clues for his father's imminent return.
Allen sighs. "We'll try the train station one more time," he says without much hope. "Then maybe we can figure out a way to talk to him. Even if he can't come back, at least he'll be able to hear us."
"He hears us," I assure my son. "We can still talk to him.All the time. Anytime we want."
He nods. "I know. I do. But I would like to hear HIS voice." He pauses. "Do you have, like, an audio of Dad's voice anywhere?"
"Maybe," I say. Somewhere there are video tapes of family vacations. Do we still have a VCR? Does anyone? And there is a audio recording of our 25th anniversary service. Do I have a tape player?
Allen is now warming to a new project. "It would be so cool if we could just hear him! Just hear his voice sometimes. Then I would still feel like I had a Dad." A tear slides down his cheek. "I still need a Dad."
"We all do," I say. Then I recall a lesson at Wednesday Mission Possible, the story of young Samuel who heard the Lord calling. In 1 Samuel 3, the boy Samuel is serving at the Temple with the priest, Eli. When he hears a voice calling his name in the night, he assumes that it is Eli and runs to him. But Eli tells him it is God calling to him. Samuel learns to listen to the Lord.
Now, in this new season of my life, I, too, am waiting to hear from God. 
"You know," I say to Allen, "I'll bet that if you listen really closely, if you are really quiet, I'll bet you can hear Dad's voice."
My son is skeptical. "How would that work?"
I think quickly. "Well, let's remember what his voice was like."
"Loud!" says Allen. "But gentle, too. Like he was always happy to see us. Even when he was hurting."
"That's good," I say to Allen. "I remember the way he would hold up both his arms and say, "You're home!'"
"Yeah," says Allen. He smiles. "And then he'd say, 'There you are!' Like we'd been gone a really long time."
"Let's be really quiet for a moment," I tell him. "And we'll just listen for Dad's voice."
"Okay."
And for a few moments we sit in the dining room where Ron's hospital bed so recently stood, where a walker and a wheelchair were at the ready, where boxes of medical supplies usurped the room. And we listen. With all of the love we both still hold for Ron, with our memories of him close to the surface, we listen.
"I hear something," Allen whispers.
"So do I," I whisper back.
Allen smiles. "Maybe it's Dad," he says. "Or maybe it's God."
My heart swells. A Dad is still a Dad. 
 

Sunday, September 15, 2019

LEAVING: THREE VIEWS

Ron

This part will be bad.

I don't know how I know it. I have fallen asleep in the lift chair Linda and Allen bought me six weeks ago. Linda said they needed to bungee cord it to the tail gate of her SUV and then Allen had to maneuver it up the hill and into the house. It is a comfortable chair and for the first time in a very long time I am feeling content. The constant pain in my chest and belly is gone and I am dozing. I could have gone to bed, getting myself into my wheelchair and transferring into the hospital bed that hugs the wall in the dining room. My room. But Linda and Bonnie will be home from the beach soon and I want to see them before I go to sleep.

I'm so tired though. So tired of the pain and the medication and the doctors. So tired that Linda needs to do so much for me. And my chair is just so comfortable. I push the remote and lean back as far as I can.

Then, even though my eyes are closed and there is a wall between us, I see Linda and Bonnie out front. They are just getting out of the SUV, dragging suitcases and a bag from Dolle's. Caramel popcorn. Linda has promised me some. She always remembers. Bonnie puts her bag in her red Civic parked out front and for a moment I think she will get in her car and leave. Come in, I think. Say good-bye. And maybe she hears me or maybe she loves me because she walks up the path with Linda and they open the door.

Now it gets really hard.

"Hello!" they say and they drop their bags on the porch. "We're home!" They are at my chair now and I am trying to open my eyes and find my voice but I cannot seem to move. I feel--well, I'm sure Linda could think of a better word for it--but I feel absent, like I'm not even there.

Bonnie shouts at me. "Dad? Daddy?" and Linda shakes my arm. I hear Allen coming down the stairs, Allen who went up to WaWa to buy me a soda and a pretzel a while ago then went upstairs to play a computer game. "What's wrong?" he says.

It gets really confusing now.

Linda grabs the phone and I know she is calling for help and she says she thinks I am not breathing and I want to tell her that I am, too, breathing but then I think that maybe I am not. Bonnie continues shaking me and Allen gets a glass of water and pours it on my feet to wake me up and I want to wake up or maybe I don't want to wake up because sleeping or whatever I am doing is so nice.

Then there are people coming into the house and they have black bags and there are blue lights flashing outside and I think how they will confuse Allen and I want to tell them to turn them off but everyone is talking and Bonnie is crying and Linda is controlled because she has had to be. There are cold things against my chest and people--paramedics, I guess--are pulling at me and one of them tells my wife and kids to leave the room.

I am warm. I am floating. I hear a voice. It is a little like a warm summer breeze and I know that no one else can hear it.

"Son," says the voice and it sounds a little like my dad and a little like Harry Callas, "it's time to come home."

And I want to say, "I am home. I have lived here with Linda for 44 years." But I know that it is not true, that this little house has never been home, and as the people--what are they called again?--are trying to bring me back, I am already gone.

Linda

The obituary will say that Ron passed away quietly, but it is not quiet here now. There are paramedics who have asked us to leave the room as they assemble their equipment and try to bring Ron back; I want to tell them to leave him alone, his body has been through enough. But I am busy answering questions for a police officer and showing him Ron's ID and wondering where the cat is. Bonnie and my best friend Chris are in the kitchen and Allen is in the dining room, telling and officer that his dad has just fallen asleep.


Then the policeman sadly shakes his head at me and says, "Time of death, 9:43" which is ludicrous because Bonnie and I walked in the door at 9:10 and found him in his chair, already still. Allen shouts, "My dad's not dead!" and runs up the stairs. Chris hugs Bonnie and Bonnie takes out her phone to call her husband and her older brother and I know I need to make phone calls to Ron's family but I cannot find my own phone. I walk back into the living room; Ron has been covered with a pink sheet and it seems an odd choice for my big, burly husband. My purse is on the floor where I dropped it and I take out my phone but the battery is running low. A policeman is at the door and he tells me the medical examiner will need to come out because Ron's death was unattended. I want to protest, because Ron has always been tended. The Saturday aide was here until 5 and Allen was upstairs and Bonnie and I were on our way home. But I nod my head and agree not to move or touch Ron--as if I could move a man who weighs over 300 pounds--and I grab the landline. The front door is open and I spy the cat crouching at the open door. I scoop him up and hand him to someone--Jared, maybe?--and tell him to put the cat in my room. 

Bonnie's husband puts the cat upstairs and goes to join Bonnie on the porch and I heard other voices on the back deck. Dennis and Laura. All of my children are here. I think of how many times we have all gathered for a surgery or an emergency and how they have always come, pacing floors and offering hugs and holding hands.

I start to cry.


I sit at the kitchen table and call my father, who thinks we are calling to tell him we have arrived home safely. He is surprised, but not stunned. On some level, we have spent years expecting this. Dad murmurs sympathy and love. Then I call Ron's brother Tom and he thinks it is Ron calling at 10:02 to talk sports but when he hears my voice, he says, "What's wrong, Linda?" and I tell him. He shouts, "What?" then he is calm. Tom says he will call Ron's mother and I am relieved. How do you tell a 92-year old woman that she has outlived her son?

Chris has fixed tea and hands me a mug and I think I smile my thanks, then I call my brother in North Carolina. He does not answer his cell phone and I do not know if he is home or away on business but I call the house phone anyway and he answers on the first ring. I can feel his love through the wire: "I wish I was there with you, Linda. I wish I could help you." I tell him I will let him know when we make arrangements and he says he will round up all his kids--three boys, one girl--and they will all come.

I am heading out to the deck to be with my kids when the phone rings and it is Ron's mother and her voice is heavy with sadness but she says she is okay and she wants to know if we can use Bateman's for the funeral and she offers to pay for it and I am still too numbed to think of it all. We agree to talk about it on Sunday.

I am almost to the deck to be with my kids when I notice that Allen, an adult with Asperger's Syndrome, is sitting in what has been Ron's room for the last nine months. He is holding an ice cube in each hand. Stimming to calm himself. I ask Jared to keep an eye on him. Finally, I join my older kids on the deck.

Bonnie is crying and hugging Laura, Dennis' girlfriend, and Dennis is leaning against the deck railing, tall and thin and pale. I go to him and I reach up to put my arms around him. He folds himself over me, tears streaming down his face.

"You sacrificed your life for Dad," he says. "No one could have done more for him that you did. You are a good, good woman." I hope that it is true and we stand there for a long time, hugging and crying until the mosquitoes attack us and the medical examiner arrives and we head into the kitchen.

She is young, the assistant ME, and kind. She asks for Ron's ID and I produce his wallet. She asks about his medical conditions and I give her the litany of surgeries and illnesses of the last 19 years.

Impressive, she says. 26 surgeries in 19 years. Twice as many hospitalizations. Then she says she needs to take picture and I should leave the room again because the paramedics will need to move the body--not Ron now, just the body.

We are back in the kitchen again and someone--Laura? Jared?--goes for coffee. We talk and share stories about their dad. We laugh. We cry. The ice cubes have melted in Allen's hands and he is sitting very still, clutching the blanket that was on Ron's bed.

We are going to be okay, I think. We are numb, still processing, but the kids are saying, "Remember the time Dad..." and sharing their childhoods.

In my mind, I say to Ron, Your kids loved you, and I know that he hears me.

Then the ME, Jenny, asks me to come back into the living room and says she would like to take the body--Ron's poor, broken body--back to the office but she is sure he died of natural causes. She wants to do an external autopsy to rule out any mechanical defect in his pacemaker. I can have the funeral home pick him up in the morning.

But it is morning now, and still we are talking about Ron. The police have left and the cat has been freed from my room, but is is cowering under the couch. Chris promises to call on Sunday and talk to the minister after church and she leaves. We sit in the kitchen, and it is suddenly 2:30 and someone says, "We should get some sleep," and the older two children and their partners leave but will be back in the morning. Jared and Dennis move Ron's heavy chair into the dining room because I cannot look at it.

There are more hugs and tears at the door and Allen shakes hands and gives hugs. I turn off the porch light and lock the door and ask Allen if he is doing okay.

He shrugs. "I'm going to go finish my game," he says. Then he turns to me, adamant. "Dad's not dead. People should stop saying he is."

"Okay," I say and nod.

"He'll wake up," says Allen. "You'll see." He heads up the stairs and into the office and I hear the sounds of a computer war.

I try to sleep. I can do this, I think. For the last 19 years I have done the impossible. I can do this.

Allen

The policeman tells me that Dad is dead but I do not trust him. Last year when I was trying to change my flat tire the same policeman said I was acting in a "threatening manner" and took me to the hospital because he said I was "talking crazy." I was only telling him what the directions on the Fix-a-flat can said and he thought I meant the can was talking. Now, that WOULD be crazy.

But this is different. People think I don't understand because my mind gets scrambled sometimes but I know what I know. And I know they all think Dad is dead, even Mom who should know better. But Dad gets really tired and he sleeps for a long time and we just need to let him sleep and then he'll be okay.

Mom said the lady who came to examine Dad--Jenny?--took him someplace to sleep for as long as he needed. But I do not know why he could not just sleep here. His bed is here. He'll wake up, everyone will see. I just need to believe it, that he can wake up. 

Mom says we will have to plan his funeral tomorrow with Dennis and Bonnie and Mom Mom and Uncle Tom. I don't care about it, but I will do what Mom wants me to do. It's going to be really funny when we plan it all and then Dad wakes up.

He's just got to wake up.




Tuesday, September 10, 2019

VOICES FROM THE EDGE: Waiting for Dad


"As it was in the beginning, now and ever shall been
world without end. Do we get more comfort than that?"
                                          
                                          Joan Didion, The Year of Magical Thinking

Allen jumps out of the car, excitement in his step. "The train's coming!" he says. "It worked!" And for a slice of one instant I am nonplussed: it can't be real. My son runs along the sidewalk next to the train track, rushing towards the station where a gray-haired woman waits with a suitcase.


I lower the window on the passenger side of my Nissan, letting the early autumn breeze carry in the sounds and scents of the incoming train. The lady smiles at my son.

"Waiting for someone?" I hear her ask.

"My dad," Allen says. He bounces from one foot to another.

"You must be excited to see him," she says. "Has he been away long?"

But Allen is suddenly bereft of words to explain, so he merely nods. As the train brakes with a screech, he moves away.

I watch him from the driver's seat of my car. Despite Allen's dedication the last eight weeks to the art of magical thinking, I know his father will not be on the train. I take three deep breaths, a calming strategy I have used often. I can't let myself get upset now; Allen will need me.

The train comes to a halt and a conductor jumps down, taking the suitcase from the gray-haired lady and helping her up the metal steps. Allen stands to the side, watching closely.

No one gets off the train.

"Help you, sir?" asks the conductor.

"I thought my dad would be on this train," Allen says in a rush. "We did everything right, Mom and me. This was the train."

The conductor looks up and down the length of the train. "Maybe he took another train," he says.

"He was supposed to be on the 906," says my son.

"Ah, that's the problem," says the conductor. "This is the 730."

Allen, dejected, hangs his head and saunters slowly back to the car. I take another deep breath. We have been back to Smedly Park to check the shirt Allen left hanging on a branch; we have found the biggest tree at Rosetree; we've found the strongest horse at Linvilla. In the eight weeks since Ron died--passing away peacefully in his easy chair--my youngest son, who has high functioning autism (Asperger's Syndrome) has handled a variety of "scrambled emotions" (Indiana University, 2019). He's had trouble sleeping, is vigilant about locks and dead bolts, and insists on wearing the same shirt he wore the night his father died. Each of my three children--Dennis, Bonnie, Allen--has had to find their own ways to grieve the loss of their father, but the issue for Allen is compounded by his brain's atypical function, making the finality of death hard to accept.

According to Dr. Tony Attwood, a noted expert on Asperger's Syndrome, an increase in spectrum behaviors helps the neuro-atypical keep calm and block negative thoughts. Allen's belief that his father will come back if he follows a certain procedure of carefully designed steps is called "magical thinking," a psychological concept that protects the thinker from the unthinkable. Writing in The Seven Laws of
Magical Thinking (2012), author Matthew Hutson contends that such thoughts provide an evolutionary advantage, encouraging us to be more participatory in life if we have some control over the outcomes.

At its most simplistic, "magical thinking" is a form of bargaining such as Audry Huff displayed during the 2010 World Series when he wore the same red underwear for every game, convinced it helped the San Francisco Giants win. Writer Joan Didion (2005) used magical thinking to recover from the sudden death of her husband, John Dunne. It took Didion two years to realize that any amount of bargaining would not bring her husband back. Life continues it's cycle. She learned to find comfort in that. 

For Allen, it's only been two months. He slides back into the car. "Wrong train," he says and sighs. "I'm doing everything I can to bring him back. I don't know why it's not working.

I speak carefully, aware that while I grieve for the man Ron was before the car accident stole so much from him 19 years ago, Allen grieves for the only father he's ever known. "Maybe he's not ready to come back," I say. "Maybe he has somewhere else to be."

"Why wouldn't he want to come back to us?" my son asks.

I shake my  head. "I don't know, Allen. But I know he was tired of being sick."

Allen nods and I know he is fighting back tears. I reach across the car console and touch his shoulder, expecting him to flinch. He does not. Then he starts to laugh.

"It would be just like Dad," he says, "to get on the wrong train." He says it without judgment. "He always needed you to tell him what to do."

I smile, conceding his point. "So, what now? Do we wait for another train?"

"No. We need to check again next week."

"Okay," I say and put the car in gear. Each Saturday brings another magical outing. We pull out onto Rose Valley Road. I venture another thought. "Maybe he's not coming back."

Allen's shoulders sag as he considers the possibility. "Maybe," he whispers. 

There is silence in the car. I take a few more deep breaths, telling myself that in time Allen will accept his father's death.

"I just can't stop trying yet," says Allen. "Not yet. It's too soon." And it is too soon,
only eight weeks into the rest of our lives without Ron. 

"Okay," I say.

We drive down Rose Valley Road, past the college where Allen-despite having special needs--earned an associates degree in technology and Ron proudly clapped as his son received his degree.  I spy Hedgerow Theater where Ron and I saw "A Christmas Carol" and "Noises Off" and "Our Town." I make a right onto Brookhaven Road and we drive by the house where Ron grew up. We are all the way to Bridgewater when Allen speaks again.

"I just want him to know much much we miss him," he says with a sigh.

"He knows," I tell Allen. "I tell him every morning and every night."

"Me, too," whispers my son. And this time he is the one who reaches across the console and pats my shoulder.