When I was thirteen, I bought a small, blue, canvas-bound book whose title, scrawled in loopy silver script, read, “The Interpretation of Dreams.” I purchased it because every morning, I awoke with vivid memories of three, sometimes four, dreams. About half of them were nightmares, but they didn’t trouble me as much as what I called the Sagas. In those dreams, I lived entire lives, and when I woke up and realized that none of it was real, the resulting devastation was almost as intense as if I just lost actual friends, a husband, children. I hoped that I would find answers about what the Sagas meant and achieve peace by way of the knowledge.
I never found my answers; when I started taking anti-depressants at age fourteen, the Sagas disappeared, so I abandoned my research. However, the nightmares began to run rampant.
Lately, my nightmares have been especially painful. I have three that take turns playing in my nocturnal theater. First, I dream that fierce predators escape from the zoo, lurking the city’s streets, lying in wait for unsuspecting humans to cross their path. Unfortunately, I’m the only one who knows this, so it falls to me to protect my husband and sister even though I don’t have a single weapon.
Next up, I awake on a dark beach. I lay on the rough sand, utterly confused by my surroundings. Then a pair of hands reach down to help me up. I realize too late that they belong to my rapist. Raising a hand to caress my cheek, he says, “We’re the last people on earth. It’s just us. Now we can be together forever.” It’s then that I notice I’m wearing my wedding dress.
The worst dream starts before I even fall asleep. As I drift, memories of the words of my last Lower School Director and the Head of School echo in my head…
“Your students are bored.”
“Their parents lack confidence in you.”
“Maybe your personality is the issue. Go observe the Spanish teacher. Try to be like her.”
“You lack presence in the classroom.”
“Have you considered being a librarian? Then you won’t work with children every day, and you can be around those books you love so much.”
“You’re too academic.”
“Try not to look so frail. Stop hunching over your cane.”
“Are you really teaching if the kids aren’t learning? ”
“Fifth grade is an important year, and we need a teacher so fantastic that families don’t even think of transferring to another school for sixth grade. There are five families thinking of leaving – you’re not a strong enough teacher.”
“I’ve been disappointed in you from day one.”
Then, when sleep finally comes, I am teaching in a classroom with glass walls. I don’t have a lesson plan, and when I see the Lower School Director and the Head of School watching me, I panic, making one stupid mistake after another, knowing each is a nail in my coffin. The dream fades when memory wipes away the fear and reminds me that it’s over now. I survived being kicked to the curb, and – awful as it was to end my career on a low note – they can’t hurt me anymore.
I don’t need the book to pick up the themes these dreams share; in each one, I am caught off guard and helpless. That is the essence of ALS. No one is prepared for the diagnosis (most cases can’t be tied to a family history, and lifestyle seems completely irrelevant). To make matters worse, the diagnosis comes with a decree of helplessness since there isn’t a thing you can do to fight back. I’m guessing that I am reliving the trauma of the diagnosis, but I don’t think it has to continue.
I recently realized that I am not helpless, not by a long shot. How many pieces have I written detailing my commitment to my range of motion exercises, my eagerness to participate in drug trials , my openness to new medications and protocols to manage my symptoms? I use the cough assist to keep my lungs strong, my feeding tube to maintain proper nutrition and hydration, and my tobii to prepare for when I lose my ability to speak. I am not sitting on the sidelines watching this monster consume me. I am fighting the dragon with a small dagger, slashing and slicing bit by bit until I bleed it dry. From now on, I will hold this gruesome, glorious image in my mind as I fall asleep. Maybe then I’ll dream of slaying the beast.