I try to imagine what scientists tell her, that instead of opening when she stands, the blood vessels around her heart squeeze tight. Little heart attacks aren’t unusual. That’s partly because the sheaths of myelin that are supposed to protect her nerves don’t form quite right. Her nerves are literally raw, inflamed, and as a result her arms and legs go numb and tingly, the way ours might when we sleep or sit wrong, except for her it just happens. There are some days when she can’t walk because the pain in her feet is excruciating. There are days she can barely get out of bed, and if she gets sick, her immune system attacks her illness— and then attacks her. Plus, there’s her curious skin.
Doctors say, we can see what is going on, we just don’t know why. And we don’t know what to do for you.
“I’m a mutant.” She answers.
She can’t work any more. A powerhouse in the biotech investing realm, she travels the world pitching, negotiating, and sealing deals until a cortisone shot lights up her immune system. She crashes hard, almost dies.
Like all visitors I sanitize in the foyer. Some days we play ball before sitting and talking and writing or drawing. Other days she lies on the couch. Even exhausted she is sharp and articulate and focused, but on our first visit what to do next isn’t clear. She says, “I don’t know what I need. I’m just not ready to die quite yet. I’m trying to figure out what to tell my clients. They think I hurt my foot. I can’t tell them I’m sick like this. I want one last wave to ride. I have to get better enough for one last wave.”
“Who else knows about your condition?”
“Just my husband. And the doctors of course.”
“And how long have you had it?”
“My whole life.”
“What if you could somehow get comfortable telling people?”
“Oh, that would be very good.”
It seems the next wave won’t be coming right away so we settle on one simple goal: Rewrite the story of her illness until she’s no longer ashamed of it. “How would you tell a colleague? Okay, we won’t start there, what would you want to be able to say to a close friend?” She practices out loud a few times. It comes out all stiff with science jargon. We practice some more.
By our next visit she’s told her friends who either retreat or pour love on her. Soon enough her colleagues do the same.
(Her bravery is unusual.)
We set up a blog, and she writes her story. She describes the evil that lurks, the ghosts she battles, and the angels she wraps around her husband each day. Each post she lays like paper into a stream. She has no need for them once they are out.
There are weeks of silence when she crashes. I wait. Then she emerges worn out but ready to keep working.
She hardly leaves her room except to see doctors and healers and, if she has the energy, to walk the labyrinth at Grace Cathedral in prayer. She visits God all the time.
Then another crash.
And this time when she emerges, something is different. She’s told everyone who needs to hear her story, but it seems almost irrelevant. As she puts it, she’s passed through the eye of the needle. She has no shame. She has released herself. She is sensual. She is serene.
“The pain is gone, but I’m having trouble getting nourishment into my body… I think I may be dying soon.”
“I love you. I don’t want you to go.”
“I know you don’t.”
My eyes deliver some unprofessional tears.
“Before I go, may I?” I make a gesture. She pushes up her sleeve and fearlessly offers her arm to me, and for the first time I hold her hand. Even though she keeps the room at 75 degrees, her fingers are cold. I slide my hand over her smooth skin which is modelled with patterns and spots like a leopard or a Rorschach or a butterfly wing. I gently squeeze, pressing my thumb into the flesh between her thumb and forefinger, then past her wrist and into her forearm. I squeeze again. Her flesh quietly pushes back. This woman has vitality left. At least that’s how she feels to my hands. When I look up I say so. She’s willing to hear it. My words feel empty.
“Yes, no pain.”
“And the shame…”
“All gone… See you in two weeks?”
“Yup.” And I go.