He is doing it again. Whenever we get into an argument Sam starts nervously cleaning. He just won’t look me in the eye “I can’t deal with your s*** right now! I have to go” I spin around and storm out. I am just too tired from our fight last night. As I get in the car the radio turns on. It seems that they always play the same classical music over and over again. I hate classical. It just makes me depressed, but it does calm me down. As I start driving I forget about Sam and the fight we had. After a song or two, I mustered up the strength to change the channel. While stuck in traffic admiring the warm sunny day, and the sound of the ocean, the Beach Boys “Good Vibrations” comes on the radio. I start to think maybe things will get better.
I am humming along with the Beach Boys as I sit down in the doctor’s waiting room. Having to wait is the worst, just me and my thoughts. As the “Good Vibrations” fade away, my fight with Sam starts to come back. Sometimes it seems like he doesn’t understand what I am going through. I just don’t know why he won’t engage anymore. I wish he was more supportive. The metal chair is digging into my back and when I try to move, my body won’t let me. The doctors said that the paralysis isn’t supposed to start so suddenly. I feel helpless in my own body, the lights are blinding, my head is pounding, the universe seems like it’s collapsing in on itself. Suddenly “Thunderstruck” by AC/DC comes on over the intercom. As much as I love AC/DC, it doesn’t help in this situation. My breathing grows shallow, and the only thing I can think is ‘Why won’t you listen to me?’
“Hey, Maddie you ok?” a familiar voice, low and gravelly, washes over me. My body relinquishes control. It’s sending signals again, I feel lighter, even though I still feel a little foggy still, and tingly. I turn my head to see that gorgeous hunk of a man. “What are you doing here Maddie?” He has big deep blue eyes that I could practically sink into.
“Oh, Blaze, hi”, My voice starts off a little scratchy, “I’m here for a doctor’s appointment. Why are you here?” Blaze is my ex from my bad boy phase. Despite his large intimidating appearance and a grand sense of adventure, he’s a sweetheart. I am shocked to see him. Thinking about our adventures brings back thoughts of Sam and our fight.
“Well, I’m here for you! ALS isn’t something you can fight alone.” This doesn’t feel real. Why would he come back into my life, right when I am talking about leaving and living my life before it’s over? “Good luck,” he says with a smile on his face, as large rubber gloves descend on my shoulders, pulling me into a wheelchair. My world starts spinning.
They race me through a pair of green double doors and into a large dark operating room. I don’t remember this ever being here. They lay me down on the cold operating table, face up, the freezing metal pushed up against my now bare back. When did I change clothes? “What the hell is going on? Who are you? Where am I?”
A man about 6 foot, with a surgical mask, approaches the left side of the operating table. The man sets down a CD player nearby, and presses play. “Rocket Man” by Elton John comes on. The surgeon leans over and whispers in my ear, “You may not want to watch.” He smells like a mixture of peppermint and bleach. I turn my head to the right and I see a window in the operating room and on the other side I can see the first time I told Sam about what I wanted to do with my limited future.
This was a few weeks after the diagnosis, just after the doctors had told us that there wasn’t much they could do for us. I was going to die, and in less than a year it would be impossible for me to continue on with a normal life. Based on my current condition they gave me 3-4 years to live. It took me a while but eventually, I accepted my fate and decided I would make the most out of my limitations. I remember Sam and I were cuddling on the couch as usual. I said, “Sam I’ve been, thinking, things are going to get worse fast. And I know you know that, but I want to make the most of it.”
“Of course, I do too...” He was barely holding it together. He was trying to be my rock, the one stable thing left.
“I want to go to Japan and Copenhagen, and Lollapalooza, I want to see the world and I wanna go now!” He looked supportive. The argument that followed beyond the glass made it seem otherwise. Whatever they were doing was making my head spin.
Blaze walks up to the table, completely outfitted with scrubs. Putting his hand on my shoulder, he says, “It’s going to be okay, Maddie. When this is over we can go climb Mount Kilimanjaro like you always talked about.” I didn’t realize it at first but there is another figure there, some kind of pretty blonde girl waiting behind the giant surgical light. I forgot that despite Blaze's kindness and adventure he was a playboy. I miss Sam.
I look back to the operating room window, hoping to catch a glimpse of Sam, even a painful one. I just want him here. Warm light of an early morning streams through the window, as the scene on the other side came to life. It is our fight from this morning, the last thing I want to see right now. Everything in that room seems to just melt away, all I am concerned about is the scene playing out on the other side of that window pane.
Sam was making breakfast, I had just come downstairs ready to go to my doctor's appointment. He was standing there in his “kiss the chef” apron. The moment I smelled the bacon I practically started to drool, but I was still in a bad mood from the night before. I set my stuff down and leaned up against the island in the middle of the kitchen. “Sam I am buying plane tickets for next week. Are you coming with me to Tokyo or not?”, his energy changed. He kept cooking for a bit, “Hello?”
He stood there, his hands on the edge of the stove, his shoulders bunched up. I couldn’t see his face but it was clear he was crying all over the bacon. “What am I supposed to do when you are gone? Keep traveling? I’m doing my best here. a part of me will die with you, but I’m gonna keep living! How do you expect me to go on without you?!” He’s doing it again. Whenever we get into an argument Sam starts nervously cleaning. He just won’t look me in the eye,
“I can’t deal with your s*** right now! I have to go” I spin around and storm out. The light faded and so did Sam. I just want Sam with me.
I am lying there, helpless, feeling like I am losing everyone including myself. Why did I say that? Why did I think that?! Sam is right we aren’t dying I am. I have been so focused on what’s happening to me. I am not the only person affected by this. I sit up on the operating table. Everyone in the room is gone and the encroaching darkness makes me feel claustrophobic.
Someone is slightly shaking me. Their hands are cold and they vaguely smell of peppermint. “Ain’t No Mountain High Enough” starts to play in the doctor’s office, and I wake up. My doctor standing there with a smile. And when I look over I see Sam sitting there asleep.