The Stories We Tell
It is only with the heart that one can
see rightly, what is essential is invisible to the eye.
"Tell me the story of Casey," my four-year-old daughter Merlin demands.
This is a request that still takes me by surprise and leaves me fumbling for a fluent answer. It is not like my retelling of Snow White, a simple chain of events leading predictably to "happily ever after." For Casey's story, different details emerge with every telling. It doesn't always begin with the nurse's shocked reaction to her tiny, twisted form at birth or with the doctors carelessly remarking, "If she survives the night, we will transfer her to the Children's Hospital." These are events I wasn't present for, after all, and though I have the information from firsthand accounts, they are not my version of Casey's story.
I was twenty when I first met my future husband's little sister. He had prepared me so thoroughly for her unusual appearance, due to congenital scoliosis, that I was perhaps "over-prepared" and quite surprised to find her lively, physically capable, possessed of a sly wit and practical sense of humor. She had a habit carried from early childhood of making up statistics to support her arguments (she often claimed she had heard them somewhere.) She began one of her arguments with, "As a scientist, I can't accept...", and we laughed at her and teased her for years over it. She was an active member of her church, teaching Sunday school even after she had stopped attending services and begun investigating paganism and Wicca. She challenged her father in a way that was direct and loving, yet made clear that she thought he was an idiot. She was her mother's best friend. She was the maid of honor at my wedding. She patiently endured birthday parties at the Magic Time Machine and gifts of collectible dolls years after she had outgrown them because she didn't know how to break it to her family that she was an adult. She finally dropped enough hints, and when they asked her where she would like to go instead, she chose Dave & Buster's. Dave& Buster's. She is the only person I know who owned BioDome on both video and DVD. She loved teaching, coaching volleyball (which she never played in school), scrapbooking, Sea World, embroidery, traveling, playing 42, dolphins and keeping everyone in line.
When I think about her life, I feel the greatest admiration for her because she accomplished so much that she wanted to do, and she did it with her spine working against her -- always the physical, powerful, persistent adversary to her strong and struggling will to define herself as a whole, independent person. She went to college, transferring from Shriner College in Kerrville to Incarnate Word in San Antonio after one semester because she missed her family too much. She found a job teaching after a year-and-a-half of interviews with principals who really liked her, but did not hire her. She worked a grueling year in Galveston at a school that was falling apart in a town where she knew no one. But that move bought her independence. When she moved back to San Antonio to teach and live closer to her family, she moved into her own apartment, a feat her brother quietly worried that she would never accomplish. I think she believed she had achieved everything she could without the next step of spinal surgery. It was her great hope to be pain-free, taller to have a family. She was willing to risk her life for the chance to be normal.
"But how did she die?" Merlin asks mournfully, knowing the answer already.
The first day, Casey woke up on a respirator, but in good spirits. She grinned at our stupid jokes and spelled messages with her fingers.
"Well, after her surgery, her kidney grew weak and stopped working. Then she died."
My shortened version of the horrid week of baffling medical jargon that left us bewildered, unclear on the actual cause of Casey's decline.
"But how did she die?"
There are elements to Casey's story that Merlin has fixed in her mind. While I may recount different events each time she asks me, there are some plot points that she insists on.
"Her heart stopped."
Merlin will continue asking "how" until I provide this response. This is the only answer my daughter will accept.
"She had a heart attack?"
She actually had several before we could bring ourselves to agree to a "Do Not Resuscitate" order.
"And she returned to the earth?"
My explanation returned to me.
Over the last few months, this dialogue has evolved into a sort of remembering ritual that Merlin is likely to start up anytime we are in the car for more than an hour. Like the other stories she is familiar with, it has a princess who struggles against overwhelming odds. As it develops, I recount funny moments and first impressions, sometimes recreating Casey's raspy timbre and rising inflection. It worries me when I can't call up the things she used to say, the gestures she used to make. What else might I have forgotten?
I did not mean to forget anything. Right after Casey died, as we waited in the hospital to say "goodbye" to the part of her that would "return to the earth," I began writing. While the part that was "essential...invisible to the eye" slipped away, I tried to record everything. Then I poured my disbelief and resignation onto the pages. Writing was not big enough to swallow my grief. It was not loud enough. It did not stop time the way I wanted it to. When someone is just gone, it is hard to accept that there will be sunny days, celebrated births, people running mundane errands.
The writing did not stop people, so I started talking.
It seemed like I had to tell everyone who passed me on the sidewalk, "Casey is dead." I told people asking for change, store clerks, nurses and doctors at my regular appointments. I told telemarketers and bill collectors. There was no conversation in which it did not come up. The topic lurked in my mind, waiting to spring out at anyone who would listen. Some people didn't care. Some expressed their regret or sympathy. Some shared tales of their own losses, complicated webs where every silk thread joined another at just the wrong place. Their reactions neither comforted nor offended me. It seemed I had to talk about it whether I wanted to or not. Then as time passed, I had to worry every time the phone rang - would whoever it was know already, or would I have to tell them? When could I stop talking?
Apparently, not yet.
My mother cried the whole week she kept Merlin while William and I made the funeral arrangements that our parents couldn't bring themselves to be a part of.
Merlin asks, "Is it about Aunt Casey?"
"Yes," nods Mom.
"Well, don't tell me about it. I don't want to be sad right now."
Seven months later, I don't want to be sad right now, either, but I cannot help it. My children will not remember their Aunt Casey, except through the words and pictures we provide. They are a poor substitute, but they are important nonetheless.
My son Gavin was only two-years-old. His story will include only the glimmerings of Casey, sustained by what we share with him about her.
Merlin, being four, will hopefully have at least a few snippets of concrete memories to build on.
My husband's narrative perceives Casey's life and unexpected death as a story with the wrong ending. When you work and try and fail and heal and believe and try again, you should be guaranteed some happiness in the end. His story has to go on without one of the main, beloved characters.
In the story of my life, Casey's death is like having lost an important competition. We left the hospital without the big shiny trophy, without Casey and her improved spine and quality of life. We tried, but we did not win. Every day becomes our consolation prize for losing a person we loved and needed, perhaps in more ways than we realized. In recognizing my loss and powerlessly witnessing the affect on myself and others who were left behind with me, I have come to understand that I will continue to lose until the day I die. My death will be someone else's loss. If I am lucky, it will be my children's loss because they will outlive me by many, many years.
"Mommy, I don't want you to die."
I am surprised and saddened that Merlin has made this connection, but I only respond, "I know." These days I am careful not to promise anything more.
For myself, I do not fear my own death. I
worry more over the life of second place. The life that wonders,
"what if..." the life that regrets, "why didn't
I..." the life that must continue to get up the next morning and
settle for this inferior product. My trials have not killed me, nor have
they made me stronger, they have simply diminished me and reduced the
richness and beauty of my imagined future. This is not to say that I am
not grateful for the life I have and the people I share it with. Just
now, though, I get up every day because I have to. I fill my time with
activities which distract me from thinking too much on the experiences I
wanted, I expected, Casey to share in. I attempt to forget what I have
learned about the true nature of life so that I may return to taking my
loved ones for granted.