Beginnings, Endings and the Surprises in Between

When I was a little girl, I had a recurring dream that a beautiful woman with dark hair smiled benevolently down at me.

“Would you like to see your life?” She asked. “How you live, and how you die?”

I can be a bit on the impatient side. I’ve always struggled with the urge to read the last page of the book first, so I let the woman take me by the hand. She led me into an ornate theater. Twin angels stood on either side of red curtains.

“Just say the word,” she waved toward the angels, “and they will open your life for you.”

As I sat in my velvet seat, I began to have my doubts. I was curious, but to lose the anticipation of Christmas mornings and new school years might be a terrible price to pay for having it handed over upfront. Eager as I’ve always been to know how everything turns out, there is nothing I love more than the surprise of a new beginning. To have loss and fear and hurt discovered at once didn’t sound so great either. And death? I didn’t want to think about my life ending at all.

“No,” I said.

And the dream disappeared. Every time.

A few weeks ago, I was standing in a little Chicago toyshop buying stocking stuffers for my children. My cell phone rang, and I dug through my purse for it. As usual, I couldn’t find it under all the mess, and I missed the call. It was the doctor’s office, and I’d been waiting for the results of a recent CT scan of my kidney. When I called back, the receptionist transferred me straight to the doctor.

As soon as I heard her voice, I knew something was going to be wrong.

“The good news is that the CT scan shows it is only a benign cyst on your kidney.”

I let out a huge breath. It wasn’t a tumor.

“The bad news is that the CT scan also picked up the lower half of your lungs, and they are covered in the same cysts.”

“What does that mean?” I dropped my basket of gifts and stepped outside, surrounded by the noise and the wind of the city. That will always feel like home to me.

“Well, it’s very abnormal. I had to consult with the pulmonologist. He thinks it is consistent with a very rare lung disease called lymphangioleiomyomatosis. We need to schedule you immediately for a CT scan of your lungs, and the pulmonologist is clearing his schedule to make room for you as soon as possible. This is urgent.”

Urgent.

Nothing about my body had ever been urgent. I’ve had colds and flus, a broken nose and plenty of torn muscles. I’ve given birth twice. Never urgent.  I was a dancer. I thought my body was under my control.

Urgent

I heard the word over and over in the rhythm of the train ride back to where I was staying. I heard it in the hum of my computer as I waited for it to turn on. I heard it in the click of the keys as I typed LAM into the Google search bar.

8-10 year life expectancy

Diminished quality of life

Lung transplant

Suffocation

Those were the words that stood out as I sat alone and tried to comprehend how what I read on the screen applied to me. I couldn’t. I went out and drank far too much wine instead. After that, I went for lashing out at people I care about for things that didn’t really matter. Everything seemed so immediately important. Every happy moment was ten times happier and every hurt feeling ten times more painful. My skin and heart and mind were supersonic and there was no way for me to control it. Why was everyone else so healthy and willing to thoughtlessly waste my time?

I know that wasn’t reality, but it was my reality.

At 5:00 pm on the night before Thanksgiving, I sat in the pulmonologist’s office for my official diagnosis of lymphangioleiomyomatosis. I actually beat some odds. I passed all the breathing tests, and I am still in the very early stages of the disease. Researchers have learned a great deal about LAM over the last few years, and I am in a great place to beat those 10 year odds. No one knows when or if I will ever suffer the debilitation of LAM. It’s too rare a disease, only 1500 cases diagnosed in the US.

And I’m still dancing in The Nutcracker this weekend so it doesn’t have me yet.

I haven’t gotten over that immediacy of life part yet. I’m still quicker to happiness or anger or sadness. I still feel the need to say what I might have held back before, or do what I might have left undone. I’m not the same person I was before that Tuesday afternoon phone call. I suppose it’s going to take some time to discover this new version of the best and the worst of me.

I’ve been going once a week to the Chinese acupuncturist. On my first visit, he flicked his needles all over my body and dimmed the light.

“Sometimes life brings us a challenge that is bigger than we think we are,” he said. “But we still fight.”

He patted me gently on the knee, closed the door, and left me alone to do just that.

As I lay there, I thought…this is my life! The one that waited for me behind the curtain when I was a little girl. The moments between beginnings and endings that I’ve been able to watch unfold with the precious gift of time.

This is my life.

Maybe it was just a little girl’s dream, but I’m glad life didn’t fall into my lap all at once. I’m glad I’ve been able to collect my memories and carry them with me one at a time. And I do carry them. All of them. The people I’ve met are precious to me. I used to think love was my greatest weakness and that when the world stopped amazing me I’d have an easier time of things. Now that I know how fleeting life is, I’m glad I still have a sense of wonder.

Last night, I had a new dream. I was in my backyard spread out on my back in the snow, but it wasn’t cold. There was a white cloud above me, and I watched it give birth to new snowflakes. They fell toward me, taking shape as they got closer, each one a beautiful, individual surprise. Every flake landed on my body. Some felt wonderful as they melted against my skin but some of them burned too. I knew if I got up and went inside, I wouldn’t have to feel anything at all…but I wasn’t ready. It was worth it to witness the beauty and wonder between the beginning and the end.

I’m sorry lymphangioleiomyomatosis. I know you want to take my breath away, but you’ll have to get in line. Life already got here first.