16 Jun The Girl With No Name
NARCOLEPSY GIRL by Kay Sera
Once upon a time, there was a very shiny girl. She shimmered and dazzled. She loved the sunshine and
loved to laugh.
She would run into the ocean and swim after the fish
She would pick flowers and then feel a tad guilty about
She laughed and played and ran and jumped and loved and sometimes cried. Shiny Girl even loved crying because she could brush away her tears and start all over the next morning.
Sometimes Shiny Girl would stretch out on her bed and feel the luxury
of the sheets under her. When she went to sleep, she would find the
sweet spot cradled in her bed. When she woke up, she danced around,
put on her running shoes, and and went to run on the beach.
That was back when she was alive.
One day, Shiny Girl woke up and just couldn’t get out of bed. That’s
okay, she thought. I LOVE to be in bed. I’ll wake up tomorrow.
Tomorrow came and still, she was tired. The thing was though, she
didn’t want to be in bed. She didn’t feel like a purring cat nestled
into her own domain. Instead, she felt like an overworked employee to
sleep who hadn’t been paid. I’ve slept for days, thought
Shiny Girl, why am I still tired?
Shiny Girl’s friends called her. Why hadn’t she come to the party? It
wasn’t the same without her. Shiny Girl said she was tired. She didn’t
know why. At first she thought it was a passing phase. A week, a
month, this will pass . . .
Several months went by. Friends stopped calling. There were whispers
around town. Shiny Girl is depressed. Shiny Girl is lazy. Shiny Girl
has gotten fat and stopped plucking her eyebrows. Have you seen Shiny
Girl?? I don’t even recognize her.
Shiny Girl kept hoping that the tiredness would go away. She pushed
herself to exercise, sometimes with disastrous results. She began to
stumble and fall. it was infrequent, but became more and more
troublesome. She fell down the stairs. She broke her ankle. Soon, she
became afraid to even walk.
Shiny Girl had a husband and a daughter. They were both understanding
and kind. The thing was, they both deserved more than Shiny Girl could
give. Shiny Girl spent her time loving them without being able to DO
anything about it.
Because Shiny Girl couldn’t sleep (even though she was sleeping all
the time), she became cranky, irritable, spacy, and antisocial. She
had gone from loving people to hating them. They hated her in return.
Whereas Shiny Girl’s mantras had always been to love and to laugh,
people who knew her reacted with scorn. Why would I want to be
miserable like that girl? They didn’t know the battle Shiny Girl was
fighting just to go out for a couple of hours. They didn’t understand.
The friends that cared didn’t understand either. They tried to help.
They suggested the gym and gluten free diets. They had forgotten how
much Shiny Girl loved to run and thought she needed motivation. Shiny Girl
wanted to scream “DONT YOU THINK I WOULD IF I COULD!!” Instead she
smiled and thanked them for their advice.
Shiny Girl went to doctors. They said she was depressed. When Shiny
Girl said, “I think it is something else”, they scoffed at her. Why
won’t you take the medication we are giving you? In Shiny Girl’s
weakest moments, they refused to listen to her. They refused to look
into other possibilities. With Shiny Girl’s last bursts of strength,
she insisted. They finally did the tests half heartedly. With scorn,
they scheduled the tests she had insisted upon. With each negative
test, they challenged her. “When will you accept that this is all in
your head?” they silently stared through her. When she asked for a
test, they asked her what disease she was inventing now. They wondered
if she was a drug addict or looking for a lifetime of welfare. They
would not say it out loud, but their eyes screamed the accusations. As
did their sighs when Shiny Girl begged for a few more tests. They did
them grudgingly, then shoved them to the side of their desk with the
rest of the paperwork. NOW will you leave me alone, Shiny Girl? Shiny
Girl felt as discarded and ignored as the medical files that bore her
Shiny Girl became Complainer.
Nobody could see how shiny she had been or still could be when she was alone with her husband.
Only her husband had the magic glasses of compassion to see Shiny Girl hiding underneath.
The rest of the world saw Complainer.
They really hated her, and sometimes with good reason.
Complainer would try to involve herself in normal functions. She hoped friends
would come to visit. But when they came, she left them to themselves.
She was too tired to be a hostess and too irritable to explain why.
Complainer would go to social functions but always had to leave early.
She could feel the wall of sleep coming down on her and had to leave
before she simply fell asleep at the table. Sometimes friends thought
she was rude. They took it personally. Complainer didn’t know how to
explain. She spent her time seesawing between being mad at herself and
demanding that the world simply understand. Neither worked. Complainer
finally gave up and determined to live her life with her husband and
say goodbye to the rest of society. Complainer loved the solitude
anyhow and the ocean waves would embrace her either asleep or awake.
Usually Complainer was in a state of limbo between the two. Complainer
slept constantly while never getting any sleep.
One day, God remembered how much He had loved Shiny Girl. He
remembered when He would shine the sun onto her face and she would
thank Him for life. God had always believed Shiny Girl could handle
things on her own. He decided to visit Shiny Girl to laugh with her
and shine with her again. He had been away for too long. When He saw
her as a Zombie, He was shocked! What has happened to the girl I love so much?, He thought. He wouldn’t
interfere with Shiny Girl’s destiny, but He did decide to give her
hope. Just a nudge. Shiny Girl felt that hope and decided to try one
more time with one more doctor. There wasn’t a lot of hope, but a tiny dying ember
still left. She stoked it a bit and smiled at the warmth. Why not?,
She went to one more doctor. Afraid, beaten, having been abused by so
many others. She felt like a kicked dog waiting for one more kick. I’m
used to the kicks. I’m used to the scorn. What is one more time? Maybe
this time the doctors will include me in the joke so at least I can
laugh along with them about the wretch in their office.
The new doctor spent a lot of time with her. The nurse came in to say it
would all be okay. She has seen other cases like this. Complainer didn’t know
the doctor and nurse were angels at the time. She only saw the same
white jackets she had seen before. She just nodded her head and
the questions. “I’m here to be kicked”, she almost said and waited for
it. Instead, the doctor scheduled another sleep study. She almost said
“no”. She had done a sleep study already. The previous doctor had talked about
REM sleep and abnormal results and shrugged her shoulders. There was
nothing that could be done. The previous doctor had been relieved to
have Complainer out of her office. “Please leave, Complainer, and DONT
But Complainer was was with a new doctor. She had nothing left to lose
and she had the ember of hope from God
flickering deep within her. So Complainer did the sleep study. She
left feeling defeated
as usual. At least she had tried.
The call came the next day. The call that turned Complainer into
Narcolepsy Girl. It was a strange feeling. The first was pure relief.
All of those years that Complainer had insisted on tests and refused
drugs, Complainer was right! The shiny part of Narcolepsy Girl loved
Complainer for Complainer’s strength and insistence. Narcolepsy Girl
had a plan of action to move forward and was excited and hopeful for
the first time in a long time. The angels sent medication for
Narcolepsy Girl to try. It didn’t quite bring back the shiny, but it
helped. Narcolepsy Girl was filled with both hope and despair
Hope that life would get better. Maybe not to the same shine and breeze
as she once had lived, but at least she would be able to escape her
bed. She wanted to see the coffee shop and the restaurants and her
beloved ocean again. She wanted to say hello and make sure they hadn’t
missed her too much. And they loved her and welcomed her back. They
didn’t care about her name. They had seen her in all of her
incarnations and only wanted to be with her. Narcolepsy Girl dug her
toes into the sand and thanked the ocean and the coffee shop for their
patience. She was glad they were still there and had waited for her.
Narcolepsy Girl focused on the ember that God had given her. She kept
clinging to it. It wasn’t the sun, but it was enough to keep her warm
if she remembered to keep it lit.
She also felt despair. She could remember what it was like to shine.
It was so beautiful and effortless. That same feeling would never
happen again. She could glow instead, but it wasn’t quite the same. It
was softer, tinged with sorrow.
Today I remember the past and anticipate the future. I miss Shiny Girl
and love her. I respect Complainer even as I know I have to release
her. I will embrace Narcolepsy Girl, but hope to rename her. Maybe
Fighter, maybe Half There, maybe Waiting for a Cure. Or maybe even
something more noble, like Helper, Teacher, Bringer of Compassion for
Myself and Others. I don’t know yet.
I am looking forward to the lessons this
experience will teach me and committed to enjoying a more mellow
version of myself. I am struggling to admit that medication will be a
part of my life for the rest of my life. That’s a tough one for
someone who doesn’t even take aspirin. I have to say goodbye to the
Shiny Girl I loved so much. I have to say goodbye to the strong
Complainer I trusted. I am not sure what Narcolepsy Girl will be
renamed, but I am looking forward to finding out.
Today my journey begins . . .