In memory

Writing this tonight, I sit by coincidence exactly where I sat eight years ago on the morning of October 23, when the phone rang and a nurse said it was time for me to ask my parents to take my sister off the ventilator and let her go. It's what everyone was ready for except my sister.

My sister had said, "Keep me going." Her answer had, however, ruled only over operating-table emergency conditions. Once she stopped responding to our voices, the decision not to prolong her life artificially lay with my parents.

I would not be them for anything. Some things I have not let go. I have not let go her rasping in her parched voice, "I'm fighting." I have not let go of her spelling it out with her fingers when her voice was gone. Did I give up on her too soon? Did she know we were letting her go?

Did she forgive me for not knowing how to love her better? Did she forgive me for being anxious about her body? Did she understand I was never repulsed by her but was ignorant, confused, and scared? Did she forgive me that as well?

No one knows why her body gained weight as it did. Some think they know. But no one, not the doctors, not science, certainly not the diet industry, knows. The calories in/calories out mythology no longer applied to her. All her equations had broken down and no longer made sense. No matter her behavior, her body had become a weight-gaining machine.

Barely over five feet tall, she carried her five hundred and fifty pounds every day on an upright spine. Her heart, the pump inside her, was strong and resilient. And her eyes, in the last five years of her life, had slowly filled with the misery of physical pain that she could not talk about with anyone. Because all of us tried to talk about her weight instead of listening to her pain.

We assumed it was the same thing.

It was only when she was lying in the hospital bed, drugs helping her to feel relief at last and competent hands touching her body gently, caring for her, that she told anyone. She had not had, she said, any sense of her own body in so long. Not the fat, she said, but this disconnect from her body left her miserable and in pain. She no longer knew the difference between feeling good and feeling bad.

"My body's crying," she spelled out with her fingers from the hospital bed. Six weeks after she first admitted her pain, she was gone.

A few people who read her story think that the tragedy was her fat. It's easy to see how they get that idea, because for a long time, that's what I thought, too. I hated my own body, and I mourned hers.

I can't punish myself for what I didn't know. But I'll always wonder whether we — whether I — could have eased her path with happiness if I had known how to accept her. If I had known that it was possible for whole weeks and months to pass without thinking unkindly of one's own body. If I had imagined that a woman could feel strong and whole and deeply connected to her own body without worrying whether an ounce or an inch changed.

I didn't start running because of my sister's death. It's not what brought me to triathlon. My life's change is not an offset, not a balancing consequence of losing her. Death doesn't have those silver linings.

But because of what my sister taught me in life, I understand that nothing I accomplish is superior to the first single step taken by another person. Because of who she was, I know that dogged belief and the will to fight matter until the very end. Because of my sister, I know that happiness is not a possession but a skill.

Reader, have I smiled at you, greeted you across a finish line? These things my sister taught me are behind that smile. The insistence that you and I can start connecting to our bodies today, no matter what our shape or size, is what I would give to my sister if I could. I can't. I give it to you.

Joyce, you were a good sister.

Thank you.


Anonymous said...

Thank you for giving painfully learned insight, acceptance and guidance to all of us who are Joyce in one way or another. There may be no silver linings in death, but there are millions in being brave enough to understand yourself, appreciate who you are and know what you are made of, inside and out, and then share those enlightenments to family, friends and to the world. I celebrate Joyce’s life with you, because I know that her life has made a difference for your life, she lives indigenously within your words and deeds, and we thank her for that.

Mom Knight said...

Thank you for sharing that sad yet somehow hopeful story. I have just ordered your book.