“What’s wrong with me?”
“Danielle, you have amyotrophic lateral sclerosis. ALS.”
My eyes go wide. Alex makes a mewling sound next to me. My primary doctor is just looking at me with sympathy.
Alex leans over the bedrail and buries his head in my chest. He’s sobbing now, his body is shaking. “No. I just got you back,” he whispers.
I still haven’t said anything and I’m not crying. I must be in shock.
“I thought only men got ALS? I thought it was hereditary?” I say finally.
“It’s more common in men, but women can get it. It is sometimes hereditary, but in your case, it doesn’t look that way.” Dr.Miller’s voice is filled with empathy.
“Well, are you going to test my kids? They need to be tested.Right now!” My brain is going a million miles an hour. Soon, I won’t be able to communicate all the things I need to say.
Dr. Miller comes to my side and puts his hand on my shoulder. “We can do genetic testing on your children to see if they carry the gene. But right now, Danielle, you can go home and live your life. In fact, I urge you to resume as much of your normal activity as possible. We’ll send a specialist to your house to talk to you about what might happen and how you’ll be treated, but for now you’re okay to go home and be with your kids. You’re okay to work, if you want.”
“I’m not going to work, are you kidding? I’m gonna charter a super yacht in the South of France. I’ll spend my days snorkeling and my nights gambling in the Mediterranean casinos with James Bond.”
Both doctors smile piteously. It feels like they’re patronizing me even though I’m not joking, only exaggerating a little. I wonder if everyone will patronize me from now until the end. Alex still looks inconsolable. His face is buried in his hands and he’s crying.
“How long do I have?” I ask, looking to Dr. Miller.
“It’s hard to say right now. About seventy percent live three to five years after diagnoses; ten to twenty percent, ten years or more. Beyond twenty years is very rare.”
Alex looks up from his tear-soaked hands. “But it is possible.” Alex is not asking the doctor a question. He’s making a statement. He looks at me. “That’s what’s gonna happen, Dani. Obviously. You are rare, and you’re going to Stephen Hawking the shit out of this.”
That’s what has finally brought me to tears. The hope in Alex’s eyes. The futile hope. This is going to be the worst part, watching the people I love be crushed by the fact that I’m dying.
“We’ll leave you two alone. Let us know if you have any otherquestions. We’re putting together a packet for you to take home. You’ll be discharged in a few minutes.” The doctors leave the room.
Alex watches them walk out. He’s standing still, just staring at the sliding glass doors. He’s in shock too. “Alex?” He looks down at me and starts to cry again. “Come get into bed with me,” I tell him.
He doesn’t hesitate. He lowers the bed rail and slides in as I peel the blanket back. Nothing matters anymore. Rules don’t apply. He curls into my body as I cover him with the blanket. The nurse walks by and turns off the light, then closes the door behind her.
We lie, holding each other…hearts broken, terrified…glued together in pain…sobbing.
33
i’m right here
Alexander
It’s September now. Los Angeles is unbearably hot. This morning, Dani asked if I could move her chair into the garden again for the fourth time this week. She’s been sitting there for hours. The peach tree she’s next to is fruitless and the tomatoes have all come and gone, but Dani likes that spot. I think she spends a lot of her time now imagining chapters in our story that don’t involve her having ALS. I think that’s how she’s coping.
We gave up the apartment a couple of months ago because we needed the money to pay for Dani’s care. It’s better for all of us to be together in one place anyway. Dani didn’t argue with that.
I buried the girls’ ashes under the peach tree and had some marble engraved and placed there. Dani chose the inscription,Angel Babies—Jane and Lucy.
When Dani and I told the boys that she had ALS, they went through all the stages I did. There was a lot of denial. Noah looked for alternative medicines and researched possible cures, while Ethan would repeat over and over to Dani, “You’ve gotthis, Mom! You’ll beat this.” It didn’t matter that we repeatedly told him there was no way she could actually beat it, he still believed she could, because Noah and Ethan believe that Dani is superhuman. She has showed them how to solve every single one of their problems, except for this one.
Outside, in the shade, Dani watches the boys play catch or jump on the new trampoline while she sits in her chair in the garden, dreaming up Noah and Ethan’s perfect futures that she’s going to miss.
Her disease progressed much faster than we expected. Over the few months after she was diagnosed, we carried on the way we had been. Falling in love again, enjoying our lives, and trying to avoid the idea that we were going to lose each other. But it wasn’t long before regular tasks started becoming more difficult for her.
Dani can still talk, but it’s very hard to understand her. She can still walk a little sometimes, but that’s deteriorating quickly. She has to be fed with a feeding tube connected to a port in her stomach, and most of her personal needs are assisted by a caretaker who comes in four days a week.
An ALS specialist came to the house yesterday and set up a system that would allow Dani to communicate on a computer since she cannot type anymore and her speech is also progressively getting worse day by day. The computer tracks Dani’s eye movements as they move around a keyboard to select words. There is a very large learning curve and she has to train the computer to know her most common phrases. It’s tedious, and for a woman who wrote as a career, sometimes ten thousand words a day, it’s frustrating for her that it takes fifteen minutes to form a sentence. We are reassured by the specialist that Dani will get the hang of it. Privately, Dani told me that she’d rather not say anything at all.
