Love is Remembering

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!)

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.