32 I Need You

32

i need you

Danielle

I’m lying on my back, about to enter an MRI machine. The doctors have run a battery of tests on me. The weight loss, tremors, and difficulty swallowing could be a whole plethora of things, but they want to rule out all the worst-case scenarios.

“I need you to keep still,” the tech says over the speaker.

“I’m trying,” I say, but both of my hands are shaking. When the MRI is over, I scoot off the table, and the moment my feet hit the floor, everything turns to black.

“Danielle, it’s Dr. Richmond,” I look up into the eyes of Rob Lowe circa St. Elmo’s Fire, minus the bad hair.

“Wow. I knew it. I knew my personal heaven would involve eighties’ heartthrobs playing doctors in medical dramas.”

“Well, I’m glad to hear you’re speaking well. This isn’t heaven, unfortunately, but it is Saint Joseph’s Hospital in Burbank.”

“How did I get here?” I’m genuinely confused.

“You were getting an MRI upstairs and you passed out, so they brought you down here to the ER. ”

“Did you say ‘ER’?” George Clooney is going to walk in next. I’m crossing my fingers under the blanket.

“Yes, the emergency department. A neurologist and your primary are on their way here to talk to you about your scans. I’m just here to find out how you’re feeling right now. Are you comfortable? We’re giving you some fluids. You were very dehydrated.”

It occurs to me that this doctor is acting strangely, and I’m thinking it’s odd that my primary and a neurologist are rushing over when I seem fine.

“Is something wrong with me?” I say in a paranoid voice.

“Your doctors are on their way to talk to you about your scans,” he repeats. He can’t tell me anything. It hits me. He can’t tell me I’m okay, because I’m not.

“Can you hand me my phone, please?” He does, then leaves the room. I dial Alex.

“Hello?”

“Come to St. Joe’s. I’m in the ER department. I need you.”

“Dani, what’s going on? Are the boys okay?”

“It’s not the boys, it’s me. The doctors are coming to talk to me about my MRI. A neurologist, Alex. Something is wrong with me. I need you!” I shout, and then immediately hang up.

I suddenly feel lightheaded and sick to my stomach. “Nurse!” A nurse enters the room. “I’m going to throw up.” She hands me a vomit bag and I heave into it, but there’s hardly anything in my stomach.

Dr. Richmond comes back in and says to the nurse, “I just put the order in. Five milligrams of diazepam.”

The nurse leaves the room while I’m still heaving. A minute later, she’s back and messing with my IV. “What are you giving me?”

“It’s diazepam. Just to calm you down a little bit. ”

And it does. I lie back on the pillow and close my eyes. Something is really wrong with me. What is going to happen to the boys? To Alex? Am I going to have to watch them watch me die? The thought is excruciating.

Time is imperfect in these moments. I feel Alex next to me. I open my eyes. He’s standing by the bed with his hand over mine. My primary doctor is there, she’s in her sixties, about to retire, and she’s next to a man whom I assume is the neurologist. He’s probably around the same age. All salt, no pepper. No more hopes for George…no more jokes. Nothing will be funny ever again.

“Hi, Dani, how are you feeling?”

“What’s going on?” I ask.

“I’m one of the neurologists here at St. Joe’s. My name is Dr.Miller.” He reaches out and shakes my hand.

I feel droplets on my hand and look up. I can only see Alex’s profile, but I can tell that the tears are his.

“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 other questions. 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.