Through the Eyes of A Child
The Memories of my father and his death are so clear, yet so unclear. Time has been erased and moments amplified greater than my being can sometimes bear. My father meant stability, decency, tradition, and continuance. When he died at the age of 43 after nearly a two year battle with CJD I died along with him. Watching him Jerk, shake, hallucinate, struggle for his sanity, and die a smelling sack of bones broke me. I was 15 when it started and at his grave site at the age of 17, August 29, 1979 on a sweltering summer day. I do not have the medical details so many others are able to offer because this all took place through the eyes of a child. I had no place to turn, no one to talk to, so it followed me and haunted me in ways that are only between God and me. When I was in college I had to write a paper, so I wrote it about Daddy. I offer it to you. It is not well written, eloquent, or particularly good. It is just my feelings.
The Six o'clock Ritual
The memories of Daddy permeate my very being. Daddy, next to God was necessary for my life. He was not interchangeable. Daddy didn't shower me with gifts, toys, money or the like. He provided the simple things that make life so rich, so sweet: a simple day, a simple meal and the six 0'clock ritual of him coming home each evening. It was all I wanted as a little girl and all I needed. Never, ever, even in the deepest and darkest moments I had as a child, would I think, or believe that one day he wouldn't come home, that he would break our date, our secret six o'clock ritual.
The sun streams through the window and bounces off the face of the little blond girl inside. She stares out the window in anxious anticipation down the narrow tree lined street. Her heart races rapidly, and her cheeks flush, as she surveys her street. Barreling down the street towards her is her best friend, Fish. He is running so hard that his belly is shaking, and his thick coke bottle glasses are rolling off his freckled nose. Fish waves his stubby little hand in the air to get her attention through the window. He holds on tightly to a brown paper sack with the Kmart logo on it. He thrusts his hand eagerly into the sack, and produces his treasure. It's the new Donny Osmond album the little girl has been saving for, for months, and fish has it first! "what a show off" she thinks, yet never before has she seen so many white teeth on one album cover. She smiles at him through the window but waves him on as she points to the clock.
Fish knows it's the most important time of day for his friend. That's when her Daddy comes home.
The Little girl watches and waits for him. She continues to peer out the window in giddy little girl anticipation. The sky is blue, and the house smells so good. mama's in the kitchen cooking supper. Mama's stick straight hair is smoothed and pinned up on the top of her head, thanks to the wonder of Dippity do. Her lips are bathed in cranberry red and she wears a stiff starched apron. mama's apron never got wrinkled or dirty, ever. Mama's making a pot roast in the oven. The smell of garlic and bayleaf fills the little girls nostrils. The cracked, yellow linoleum floor under her feat feels like heaven, well almost, soon enough.
At 6 PM sharp, the green station wagon pulls into the cracked, June bug littered driveway. It's a cool Indian summer evening, and the sky's as rich and orange as the pumpkins that grow in daddy's garden outback. The station wagon comes to a halt. The door swings open gently, and out steps the most beautiful creature she has ever known.
He steps out of the car and strides towards the back door. He steps on the little stones with his big man shoes, spit shiny black. he wears a blue pin striped suit with shades of gray woven throughout it. His beautiful brown, wavy hair attempts to hide the lines that dance across his forehead. His eyes are as soft as cotton and washed in green. Before he can reach the back door, the little girl throws her arms around him, and buries her face in his warm belly. He gently puts his arms around her and pulls her in.
Now her day is complete. She breathes in his scent, thinking, if she breathes in deep enough, maybe she can suck in his soul, his very being.
Still today, as an adult, I can close my eyes and relive the memories of my father. If I can close my eyes tight enough, I can see him, touch him, and smell him.
Daddy always smelled like my daddy. He wore Avon's ''Wild Country" Cologne. Mama bought it from Betty Jo the neighborhood Avon Lady. Betty Jo sold Avon around our town for ages. She pulled a little, shiny, red wheelbarrow around the town and hawked her wares. One had to admire Betty Jo, and her tenacity. She was rather short, with a ruddy complexion, and her teeth looked like a Chihuahua's. To top it off she was brain damaged. God creates all kinds but he created Daddy perfect.
Daddy was dependable, decent, God fearing and Catholic. He came home each and every night at the same time. Daddy kneeled with us each night, next to our beds, on the cool floor. We learned the secret rituals and prayers to offer to our God, and in return God would watch over us. Daddy always looked out for the unloved and colored. One balmy evening, in a desert town of Arizona, where us kids were born, Daddy gathered us around the Kitchen table. he told us a child was sick, a colored girl from across town. We had never met her. He then instructed us to pray the rosary for her, so we did. We recited the rosary, and prayed for her feverently. Our prayers were answered.
We prayed together as a family. As we prepared to leave Arizona for a new life in Texas, we attended our last mass there. It was on a ranch in the mountains. It was a beautiful luau and a beautiful night. The luau was complete with roasted pig, all the fixings, and leis. We had a beautiful sit down outdoor mass. It was attended by our priest, friends, and congregation. They were all there to bid us good bye and to pray for our safe trip to Texas. Since we traveled to Texas in a 1962 Rambler with no airconditioning, toting a hamster, and a dog, we were thankful for the prayers. Mr... Calloway our host, frightened us with Ghost stories about the goings on in his cellar, as usual, as we sat around the smoldering fire. We chased Huge bullfrogs, rode stallions bareback, fought with each other, and sat together as the sun set.
We never started much of a life in Texas, Daddy fell ill. He lost his memory, his coordination, and became angry. The doctors failed to diagnose him properly. One doctor claimed he had a wet brain. Others hung their heads and said nothing, Daddy got worse. He couldn't talk, swallow, and he ceased to walk. He screamed at night as he fought off the demons that have come for him.
Demon's are not suppose to come for good Catholic Daddies.
Daddy's becoming demented, his brain is damaged, Daddy is dying.
How does one say good-bye to someone who was so vital to ones very existence? One can't and doesn't for many years. It then begins to gnaw at ones soul. It has been over half my life that he has been gone. Today, I refuse to dwell any longer on the affliction that took his life at age forty three. This affliction is the human variant of mad cow disease, and is called Creutzfeldt-Jakob disease. CJD occurs when a brain protein, called prion protein is changed into an abnormal form. The disease strikes about one out of a million people world wide. There are no known therapies or cures, and very little research is being done. I hope to change this one day. I am aware of a few compassionate researchers out there who are trying to develop therapies and find a cure.
I still long for those simple days and times, and I miss our six o'clock ritual deeply, but that time has simply passed. My children and I have our own rituals now. I choose now to say good-bye to him, something I never did as a child. I say good-bye now, so that I may live, but to never stop living and breathing him again in my memories. If I can just breathe deep enough.
I Love you, Your daughter Lisa
My hope at this point is that other children will not have to endure what I did. I wish to walk along with any child and offer my support and guidance if they are dealing with cjd also. Sometimes in all the confusion, hurt and pain they are left behind to try to figure it out and are called upon to take in things that no child should ever have to see. If I can help I am here. [email protected]
I would like to thank my father for being a upstanding kind of guy, for always doing the right thing, for laughing at my crummy jokes, loving his family, and for passing on to me one of the greatest gifts he could give me, my religion. He taught me that being a Catholic is being a generous spirit, giving of time, money (that he didn't have), love, humor, dependability, morality, and grace. He never said these things he showed them by example. Never has such a common man done it so well.
And no, the one in a million theory just does not wash.
Please contact me at:
[email protected]