“Grief walks through this hotel like a ghost. It is 5:50 AM. Tia texted you earlier, saying she couldn’t sleep. You barely slept either. Instead, you walked through the dining area, shoeless and thirsty, but instead of water you found Bill. He lost his wife five months ago, and now he spends the dark hours of the night reading on the couch, his head in his hands. He is a nice participant, but quiet.

In thirty minutes you will have to put on your coordinator face, all smiles and patience. You will make jokes, drink coffee, try to push the thought of her back until you have time to breathe.

Just be tough, he instructed you the night before. His voice low and soothing as you sobbed. Just be tough, you’ll be home soon.

So you put on your shirt that says “Tandana Staff” and you walk, shoeless and thirsty, into the garden and watch the hummingbirds. Their long tails, metallic coats. And you think about how hummingbirds die young too, their little hearts exploding from the exhaustion.”

–  My journal entry from March 28th, 2013.

On March 28th, 2013 Meggan Elizabeth Moore died of Cystic Fibrosis.

I have known since I was seven years old that I would write this. Knew, like we all did. That one day we would lose her. Later in that same March 28th entry I would write:

“She is lost.”  I keep saying this, as if it makes it easier, as if it suddenly gives sense- darse sentido- to something that will never make sense.”I’m so sorry we have lost her.” I wrote to her mother, as if she was grains of sand between our fingertips. As if she was a hairdryer, lost under the couch. 

As we grew up together, through those precipitous middle school years, I knew. As I grew and she didn’t. As my sheer physicality put distance between us. Me: all growing pains and track team. Meggan:  all attitude and inhalers. A spark in her eye that said she was here to cause trouble, and me always worried that we would.

When we went on the Make-A-Wish cruise, I knew. But we were twelve, and for seven days it wasn’t about enzyme pills or treatments or IVs. We roamed the ship, exploring the lower decks, winning $60 at slots, swimming with sting rays, talking about boys. She tore around the giant ship with vigor, while I just tried to keep up. One night her mom, Judy, wrangled us into dresses and makeup and we had dinner at the captain’s table. We ate cold tomato soup and snails and giggled at how fancy everyone looked. We chronicled all of our adventures in a matching set of Deadjournals, a website that allowed us to have online diaries that only a few people could read.  We filled the website with inside jokes and colorful font, and sometimes it was in that little portal where we would talk about dying, about death. About the illness we knew would kill her. Just little girls, trying to figure out the universe. “Promise me you’ll come to my funeral.” She wrote to me.

When I visited her at the hospital, I knew. She missed a lot of school for her “tune-ups.” It was painful and usually lasted two weeks. My mom would drive me up the sloping hill of OHSU a few days a week. Meggan and I would run around the halls of Doernbecher, peeking in people’s rooms, buying junk food, and searching for the morgue. When I couldn’t make it up I would call her, and we spent hours gossiping about school, her raspy voice always catching once or twice when she ran out of breath. Even as pre-teens talking about boys, her Cystic Fibrosis couldn’t be forgotten.

On the rare days she was at school, I would sometimes forget. She treated middle school like her own show, she swore and danced on tables and seemed to have a constant seat in the counselor’s office. Meggan was enigmatic figure at Inza R. Wood Middle School. For a few weeks at a time she would be in the hallway drawing on the walls, taunting teachers, and breaking up with boyfriends: and then she would be gone.  A 4’8 sized hole in the student population. When someone would ask where she was, I would just say: “In the hospital.”

I always knew.  In high school, she moved away. And got sicker. It seemed like every few months we were wondering if this was it. I would get a call and she would say, “I’m in the hospital.” Another day, “I got a tattoo.”  Then she would say, “I’m getting engaged.” Her life moved faster than mine.  Even if I understood that one day I would write this, no one knew it better than Meggan.

It was all monstrously unfair. Cystic Fibrosis doesn’t just make you sick, it takes away your ability to be normal. No full school years, no promise of adulthood. All that is guaranteed is the hospital bed. Endless hours of painful and invasive treatments. While I went to dances and fell in love with a shy blonde boy, Meggan hopped from town to town, hospital to hospital, searching for a glimmer of happiness. She switched from Deadjournal to Livejournal, where she narrated her life with humor and humility, seeing where her faults lay and acknowledging the darkness that sat deeply inside her chest. I followed her journal, and she followed mine. Writing became an activity inextricably linked to Meggan. If I was writing about college, I could switch over and see Meggan posting about her new rottweiler. If I was writing about love, I could read about Meggan’s boyfriend.

When we were 21, Tia and I made the drive up to OHSU to see her. Tia had been Meggan’s close friend in middle school too, but when Meggan moved Tia and I had grown close. She looked tiny in her hospital bend, all thin limbs and tattoos that snaked down her arms and across her little feet. The spark in her eye had dulled, life had been hard. She had gotten married, then divorced, then her ex-husband had died in a freak accident in his home. Escape had opened itself to her in the form it always does to people, and she had fallen down that rabbit hole. But we all sat and talked about things all of us could relate to: music and men. I told her about my most recent heartbreak, how it felt like tiny cracks were burrowing through my chest. She nodded, she understood. Her heart had been broken quite a few times too.

 

When we were both 22 she called me. “I’m pregnant.” She said. “I’m scared.” She said. “I’m keeping it.” She said.

“It’s a boy Lizzie, I know it. I didn’t even know I could get pregnant, but here it is. Isn’t this amazing? I want you to be the Godmother” She said.

“Yes.” I said.

Later that day I wrote on her facebook:

“I am so, unreal happy for you. I love you. And I have loved you since we were…what…seven? Eight? It doesn’t matter. I’ve loved you for decades.”

I never saw Meggan again.

I guess I always expected I would know when she was about to die. Her life, her illness had been such a part of who I was that I couldn’t imagine  not knowing it was coming. Not having a moment to say goodbye. To tell her that even though we had grown up into very different adults, I still loved her. That because of our deadjournals, I learned to write. Because of  her bravery in the face of an illness she would never beat, I stood taller. I thought I would have a moment to tell her these things. I had imagined this moment my whole life.

But I didn’t.

Meggan died when I out of the country. In the middle of a five-week stint as lead coordinator. I found out while I reclined on a couch in Otavalo, Ecuador. I was perusing facebook. Her mother’s status told me she had died.

I screamed.

From the backyard of the hotel I skyped my father.

“God damn it.” He said. “God damn it.”

The next week Jeff picked me up and we drove to Spokane.  I thought about writing something to say, but instead just stared at my hands. At the funeral, I hugged her mother and her sister as tears leaked down our faces. They were so kind to me, introducing me to Meggan’s other family. “This is Meggan’s best friend from when she was little.” They said. We cried.

Her things: aviator sunglasses, studded boots,  DSLR camera, were on display in the back.  I thought about throwing up. I watched as her one-year-old ran around the room, giggling. Not knowing he was at his own mother’s funeral. We sang hymns and watched a slideshow of Meggan’s life. On the drive home I thought, “I should write something about this.” But instead just stared at the window, at the place where flat land meets the sky.

And now, it has been a year. She has been gone for over a year. After a year where I ignored my journal, where writing seemed to be a space in my heart that ached with the absence of her, I am taking it back.

None of us who were born healthy can understand what it is like to live with a terminal illness. Writing this entry I find myself overcome with just how small  of a piece of Meggan I can actually convey in words.  So much I am leaving out.  Cystic Fibrosis was the third person in the room with us, always. Always casting a shadow. Never leaving her alone. Always reminding her that one day, it would come for her. We both knew it would. But sitting here, at the beginning of my 25th year of life without her, I still feel very surprised. I still feel very sad.

But I always knew that I some day I would sit, and I would replay our memories and our stories and I would try to write something about it. But here it is, almost done. And all I can think is how grossly inadequate this all is. At the end of the day, I can write as much as I want about her, but she was a person. A bright, tormented, intelligent, loving, hateful, sensitive human, whom loved I very much. And as much as I want to capture that, I can’t.

 

Meg, I really hope this is good enough.