Showing posts with label cystic fibrosis. Show all posts
Showing posts with label cystic fibrosis. Show all posts

Wednesday, March 1, 2017

The Ocean Has Taken Her


What a book to read in the weeks I've been staring down death for the first time. Molly's casket was open, my first experience of one. It was bizarre.

I kept looking around, afraid of offending someone, and wanting to whisper, "It doesn't look anything like her." I didn't dare. Did I think the mortician was hanging around, might be insulted?

The body didn't look anything like the human I remembered seeing just over a year ago. Yes, the disease had ravaged her: made her thin, allowed sores to pop up around her mouth. But I'd known Molly on acne-plagued, hungover days without makeup. I'd known her to fluctuate between skinny and a little bit chunky. The changes were more than cosmetic. Molly simply wasn't there.

Which begs the question: where did Molly go?

I struggled with questions like this as a young person -- middle school, high school. I had the Catholics' answers to wrestle with then. By the end of college, I'd adopted a wholistic spirituality inspired by books like The Celestine Prophecy and The Secret, with a little Kerouac thrown in. I trusted my own subjectivity and the power of my mind and my life force to drive compassion, integrity and decision-making. They haven't let me down.

My questioning today feels less like a struggle and more like a point of curiosity, something I wouldn't hesitate to bring up at a dinner party. You know, the nature of mortality. Let's talk about it.

Enter The Ocean at the End of the Lane. In this lovely, scary tale reminiscent of A Wrinkle in Time, a seven-year-old boy discovers truths that remain hidden to the adults around him. He also befriends a girl named Lettie Hempstock.

Lettie looks like she's eleven, but she and her mother and grandmother are older than the world. They get our main character twisted up in other dimensions. A window to another world becomes embedded in his heart, quite literally and quite dangerously.

Lettie ultimately has to sacrifice herself to save the little boy, but the exact nature of that sacrifice remains blurry. Lettie's mother wades with her limp body into the backyard pond. The body floats. We hear about what happens next from the seven-year-old boy.
The great wave came, and the world rumbled, and I looked up as it reached us: it was taller than trees, than houses, than mind or eyes could hold, or heart could follow.  
Only when it reached Lettie Hempstock's floating body did the enormous wave crash down. I expected to be soaked, or worse, to be swept away by the angry ocean water, and I raised my arm to cover my face.  
There was no splash of breakers, no deafening crash, and when I lowered my arm I could see nothing but the still black water of a pond in the night, and there was nothing on the surface of the pond but a smattering of lily pads and the thoughtful, incomplete reflection of the moon.
If only all sendoffs from this world came complete with erratic, otherworldly weather. In fact, as Molly's brother spoke at her "celebration of life" last Saturday, it started to downpour. As he was wrapping up, a clap of thunder shook the Irish center.

"That's Molly telling me, 'that's enough sad talk,'" her brother said.

She's in the weather. She's in the ether. But where is Molly really?

Lettie's mother has an explantation for what happens in the end, to a girl whose spirit is as old as time itself.

"Lettie's hurt. Very badly hurt. The ocean has taken her. Honestly, I don't know if it will ever give her back. But we can hope, can't we?"

Thursday, February 23, 2017

It's So Good to Be Alive


These are the flowers Sonia and I got one another for Valentine's Day. Most of them are still going strong.

Last Friday, I lost a friend. Molly was diagnosed with cystic fibrosis as a child, and lived her life on borrowed time. She was diagnosed in the 80's, when it was rare for people to live past their teen years. She made it to 35.

Cystic fibrosis affects the lungs and digestive system. It's a hereditary condition in which the body produces heavy mucus and eventually shuts down multiple organs.

We lived together for three years, in a three-bedroom house in Center City with two different roommates. The first roommate was standoffish; the second became a friend.

Molly loved the Steelers, and she loved to drink. She was gorgeous and vibrant and blonde. She mastered the art of the flowy shirt to hide her CF-bloated belly. She was welcoming of my partners and curious about my queer identity. It seemed to me as though she simply hadn't known many gay people, especially women. Molly also loved men.

It was the early days of my nonprofit job. I went about three years without a day off, besides the common holidays. I remember one of the first weeks I took off, for a trip to Florida with my partner to see friends. It wasn't even a whole week.

Molly said, "You work so much. You deserve some time off."

At the time, I remember thinking I had her fooled. I didn't really deserve it.

I didn't have a clear picture then of how lazy many people are in their jobs. Instead of competing against humans, I was competing against my own best ideal of what I could do. I fell short every time.

Her words stayed with me. They brought tears to my eyes, even as I denied them. Over the years, they have rung in my ears whenever I'm being too hard on a friend, partner or coworker. I give myself permission to be generous in the way that Molly was to me. Even though I didn't think I deserved it, it felt nice to have someone else believe in both my hard work and inherent worth.

Just as we'd settled on what felt like a comfortable, drama-free household, our ancient landlady showed up one morning. She hadn't seen the neighborhood in 10 years, but that didn't stop her from using her own key to enter our home as Molly and I ate breakfast. She couldn't believe how the neighborhood had changed.

Within a month, we received notice that she would be selling the house. We needed to find a new home. Our roommate moved in with her boyfriend. Molly stayed with family for a brief time, then with the boyfriend who became her fiancé. I moved to West Philadelphia and made new friends.

Since Molly died, I've found myself reaching for Sonia more often, more desperately. The way I feel reminds me of the Stephen Dunn poem, I Came Home Wanting to Touch Everyone. Even in her death, Molly brings me an appreciation of each breath.

It's so good to be alive, to be able to work and love. No qualifications.