How can it be that the
sun is still shining? And have the stupid birds not heard the news? Life somehow
keeps going on. Not the life that I would choose.
‘Ugh,’ I think as I crumple up the paper. “Write it down,
whatever you feel. Just get it all out.”, said the therapist. “It will help you
heal.” I know she meant well and I’m
sure it can help, but after writing a certain four letter F-word a thousand
times I have only been able to move on to crappy poetry that my inner fifteen
year old self is immensely proud of and makes my thirty something self cringe.
I wanted a little sister so bad. I remember begging my mom
and dad for one. As it was with most of my childhood, I got my way. She was a
beautiful blonde thing with large brown doe eyes. Always content to follow my
lead, except when I refused to allow her into my room and she threw a ceramic
pencil holder at my head. At the age of four she had remarkable aim as the
subsequent goose egg proved.
Have you ever thought what it would be like to be twenty-two
years old and told you have brain cancer? Imagine for a moment that you are a
small town Oklahoma girl and you have a flight booked to Ireland. Lately,
you’ve noticed something going on with your eyes so you decide to fully enjoy
your trip you’ll go get a check up before you leave. No big deal.
Next thing you know you are told to go to the ER. Then
before you have time to make the necessary calls you are taken to the nearest
major hospital and prepared for brain surgery. The blonde bombshell doctor with
a no holds barred approach to cancer tells you that if you had gotten on that
flight to Ireland you wouldn’t have come back alive.
Brain tumor. Of all the rotten luck.
As much as I tried to listen and be there for her, no one
but she can truly know the internal struggle she faced. From the outside I saw bouts of fear and
anger, but more than that I saw immense courage and faith. She endured
surgeries, radiation (during which she wore a custom made Hannibal Lector type
mask that was bolted to the table) and chemotherapy. She graduated with her
bachelor’s and began pursuing her master’s in Art Therapy. She planned to work
with children who had cancer and help them explore their feelings through using
art. She would have been damn good at it too. One day we stopped by her
apartment to pick up a few things. In her art room, I noticed there was a wall
of pictures. Horses. In oil, pastels, highlighter, charcoal, pen, pencil, and
watercolor, tons of horses sketched, drawn and painted by her own extremely
talented hand. Horses with their legs shackled to the ground, some whose hooves
had grown into roots, horses with their noses stuck to the ground, emaciated
horses with their ribs protruding, horses struggling to break free. Once proud,
carefree animals, now worn to the bone, weary, yet the eyes still fierce. It
didn’t take an art expert to interpret their meaning. It broke my heart.
“Hope is the thing
with feathers
That perches in the
soul,
And sings the word
without the tune,
And never stops at
all.”-Emily Dickinson
I’ve loved Emily Dickinson since I was ten and had the
beginning stanza of this poem as my email signature for years now. I noticed my
sister used it as a theme in many of her paintings. Birds supported on branches
singing about hope. Hearts filled with hope. “Choose Hope.” There’s always
hope. Hope lives. Hope floats. Hope. Hope. Hope. My sister had hope. Hope for
marriage. Hope for kids. Hope to die of old age after kicking cancer’s scrawny
ass. Nope. Nope. Nope.
Instead here we were, her unconscious and struggling to
breathe while I held her hand and played her a playlist of her favorite songs.
No more concerts. No more, “Have you heard this band? Listen to this!” Just me
holding her hand, telling her that I was the luckiest person in the world
because I had the best sister ever. Dad read the Bible to her, friends visited
and sang hymns, mom sobbed, my sister choked on the fluid that kept filling up
her lungs and I begged silently for her to give up the fight thinking that we
are kinder to our animals than people sometimes. Then I lay awake at night,
racked with guilt.
“It just takes some
time,
Little girl you’re in
the middle of the ride,
Everything, everything
will be just fine
Everything, everything
will be alright
Alright”
She loved that Jimmy Eat World song, ‘The Middle”. I think
it became her mantra. She never gave up. She kept fighting until the very bitter
end. If I had to say what the most remarkable thing was about my sister during
all of this I would say it was her sense of humor. When I helped her bathe and
shave her legs she teased me about feeling her up. When she couldn’t feel her
left arm and her hand was resting on her dinner plate in the middle of the peas
and mashed potatoes and I lovingly pointed this out, she claimed it was a new
spa treatment. Even when she phoned me
from the National Institute of Health, where she had been undergoing clinical
trials, to tell me that the doctors had said they did not expect her to get
better and there was nothing left to try; she was still making me laugh through
the tears. She said something about cancer needing a script and joked about us
changing her diapers and how she was sure as hell getting a free pass on
everything from here on out. She made plans to play the “C” card to score a
date with the intern that vaguely resembled “Raj” from The Big Bang Theory.
Another one of her favorite things to recount was what a friend said to her
when they learned her cancer was back, “That sucks balls.” Indeed it did.
Oh black humor. As a registered nurse I know it all too well. As a sister, I had difficulty coping. I
watched an episode of Boy Meets World the recently where Topanga has to move
away and Eric says to Corey, “Look, I
know I’m your older brother, but I don’t know how to protect you from this
one.” Amen.
I asked her a few times how she wanted to be remembered. She
never did really give me an answer. I think that’s because, to be honest, she
didn’t want to be remembered. She wanted to be.
Here. Living.
But she did die. She died on a Friday and I was back at work
the following Monday which in retrospect, may have been a mistake. But after
over five years of expecting this and two weeks of knowing the inevitable
outcome, I just wanted to get back to “normal”. I have since learned that there
truly is no such thing as normal after you lose someone this close to you.
Normal ceases to exist except as a memory of a long ago promise. I told myself
it would be okay because it was going to be a short working week with the
Thanksgiving holiday. An entry from my
journal at that time reads, “Don’t feel much like Thanksgiving this year.” Upon
further reflection that feels like quite the understatement.. I remember that
we had Cornish hens that year instead of turkey and no Stove Top stuffing
because that was her absolute favorite and we all would have choked on it.
When she died I heard it all from “She’s in a better place.”
to “Heaven needed another angel.” I appreciate so many thoughts and prayers,
but none of it really hit home until I heard this, “They say you die twice. Once when the breath leaves our body and once
when the last person we know says our name.” -Val, as
played by Al Pacino in Stand Up Guys. So I know she still lives within me
through my memory. I want o share that with the world and so with that in mind
I began another writing project, “What You Need to Know About My Sister.”
Here's what you need
to know my sister:
She loved animals. Cats, dogs, horses, birds, rabbits, snakes, rats...she had all of the above at various times.
I used to be left in charge of her often and I would usually make grilled cheese and tomato soup because it was easy & my favorite. She didn't tell me until just a few years ago that she hated grilled cheese sandwiches. I asked her why she didn't say something before & she said, "It made you happy."
Her least favorite song was Tim McGraw's "Live Like You Were Dying".
In high school she wore those stupid skateboarder pants and dated idiots. In my opinion she never did date anyone worthy of her.
She played flute in the high school band and even after her diagnosis and treatment she returned to Hope Lodge in Kansas City to play for the patients and their families.
Like me, she was a reader. Devoured Dean Koontz, Michael Crichton & Stephen King as if it were candy.
Unlike me, she owned a gun and liked to target practice with her compound bow. She would have been handy to have around during a zombie apocalypse.
She was an amazing aunt. Taught my daughters to play chess and always brought a craft for the girls to do. She was the one responsible for helping them make gingerbread houses every Christmas and getting candy sprinkles all over my floor.
One thing she could not do to save her life was spell. She also flatly refused to use capitalization or punctuation in texts and emails. It drove me nuts!!!
A lot of people say they are non-judgmental, but she lived it. She was friends with everyone from all walks of life and supported those friends whether they were believers, Buddhists, atheists....I never heard her tell a racist joke or make fun of anyone for any disability or poor circumstances. She would literally give her last dollar to help someone else.
She raised thousands of dollars for a Relay for Life. She delivered meals on wheels and took a group of grandmas from her church out to lunch every Sunday. (With her brain tumor she probably drove worse than any of them!)
She loved animals. Cats, dogs, horses, birds, rabbits, snakes, rats...she had all of the above at various times.
I used to be left in charge of her often and I would usually make grilled cheese and tomato soup because it was easy & my favorite. She didn't tell me until just a few years ago that she hated grilled cheese sandwiches. I asked her why she didn't say something before & she said, "It made you happy."
Her least favorite song was Tim McGraw's "Live Like You Were Dying".
In high school she wore those stupid skateboarder pants and dated idiots. In my opinion she never did date anyone worthy of her.
She played flute in the high school band and even after her diagnosis and treatment she returned to Hope Lodge in Kansas City to play for the patients and their families.
Like me, she was a reader. Devoured Dean Koontz, Michael Crichton & Stephen King as if it were candy.
Unlike me, she owned a gun and liked to target practice with her compound bow. She would have been handy to have around during a zombie apocalypse.
She was an amazing aunt. Taught my daughters to play chess and always brought a craft for the girls to do. She was the one responsible for helping them make gingerbread houses every Christmas and getting candy sprinkles all over my floor.
One thing she could not do to save her life was spell. She also flatly refused to use capitalization or punctuation in texts and emails. It drove me nuts!!!
A lot of people say they are non-judgmental, but she lived it. She was friends with everyone from all walks of life and supported those friends whether they were believers, Buddhists, atheists....I never heard her tell a racist joke or make fun of anyone for any disability or poor circumstances. She would literally give her last dollar to help someone else.
She raised thousands of dollars for a Relay for Life. She delivered meals on wheels and took a group of grandmas from her church out to lunch every Sunday. (With her brain tumor she probably drove worse than any of them!)
But, like I told my therapist today, the main thing you need
to know about my sister is this:
Her name was Amy Jo. And she was spectacular.
