In my altered state, I couldn’t even begin to comprehend what was happening to me. And scientists are still far away from fully understanding the mechanisms responsible for anxiety, responses to stress, and attention. We do know that they are disrupted in certain mental disorders, including ADHD (attention deficit hyperactivity disorder) and PTSD (posttraumatic stress disorder). We also know that a complex network of neuronal connections between many regions of the brain must operate properly in order to guide a person successfully through the jungle of human experience, which pre-sents all kinds of stressors.
In my damaged brain, even the most innocent of stimuli, something as pleasant as a jazz band, is too much. I can’t handle it.
That night, Mirek and I are watching a movie on the huge flat-screen TV in our basement turned home theater. We snuggle on a comfortable leather couch we bought six years ago when I was getting chemotherapy for breast cancer. We lie so close that we feel each other’s hearts beating, our lungs drawing air, our warm bodies intertwined. Mirek holds me tight, caresses my arm, gently tickles my hand.
I feel safe cuddled next to him like this with his warm, loving hand on mine. But inside my head, a strange and not entirely unpleasant chaos is stirring.
Black and white—death and life—white and black—life and death—black—black—black.
We’re watching a documentary about Nina Simone, What Happened, Miss Simone? The images are flying by . . . the music is blasting . . . her deep, strong voice is entrancing. I’m hypnotized. I can’t move. I’m experiencing this with my whole body. Her voice, her overwhelming persona penetrate me not only through my eyes and ears but through my skin, flooding me with emotions, shaking my insides. I’m mesmerized. I quiver as if I’m absorbing too much for my battered head to consume.
“Too loud for you?” Mirek asks. “I can turn it down a bit.”
“No, no, please! I love it!” I say.
Black and white—white and black—black, black, black.
The images on the screen flash like a monochromatic kaleidoscope, sharp edges, multiple reflections, fast, fast, fast. While it’s hard for me to follow the story on the screen, I can’t tear myself away from what I’m seeing. Simone is beautiful, phenomenal, strong and brittle at the same time, her life passionate, dark, and tragic. I cling to Mirek for support and think about my own impending death.
Black and white, black—black—black.
“Can you pause it for a moment?” I say.
I leap up and race out of the basement and up two flights to my office. I pull open the bottom drawer of my desk and frantically sift through a pile of documents.
There! Found it!
My health directive. I must add something to it, right now. Fast, before it’s too late. Do not resuscitate. I must add those instructions immediately.
I search for a pen and scour the paperwork. Where to add the words? I struggle as I try to read it. Here, I’ll put it here. I try to write but can’t remember how to spell resuscitate. My handwriting is shaky and hard to read. The letters I write are squirming, wiggling. They don’t look like English or Polish or any other recognizable language.
I’m terrified I won’t be able to convey my desperate desire: Do not mess with my body, do not traumatize it, be gentle and leave me alone when the time comes and death is near. Don’t be brutal. Don’t force me to live when my body quits.
I scribble something that’s supposed to be DNR on my health directive and run out of my office. I need to be back in Mirek’s warm embrace. We’ve been such an excellent team throughout the years: through my divorce and the death of my ex-husband, through raising the kids in a strange country and buying and renovating our home when we had very little money, through my breast cancer. And now, through this illness, which looks like it’s going to be the last, most difficult passage in our lives.
I run downstairs, skipping steps, feeling ready. But ready for what? Ready to lie down next to Mirek and embrace? Ready to die? Both? I push away that grim thought. I have edited my health directive. I’ve done something constructive, and I can rest.
10
The Light Gets In
The summer of 2015 continues to torture me and the world around us. The unrelenting heat is killing the grass; flowers are wilting and dying.
One particularly sweltering day, I open the door and a blast of hazy, hot air hits me in the face as if I’ve opened a giant oven that could kill me. But I am not ready to die. I slam the door shut and retreat inside to my cool nest with its air conditioning that hums day and night. Since my doctors don’t want me to drive, I spend most of my days sitting with my laptop on a couch in the living room, taking care of brain-bank tasks or writing my memories.
The steroids I’m on are decreasing my brain’s inflammation. However, they’re taking a hefty toll on my body. My normally slim, long face rounds up like the moon, which is typical for patients on steroids. My body shape changes too, dramatically and so fast it is terrifying to watch. Within weeks, my muscles and athletic figure are gone. My body becomes heavy and inflexible. I look down with dread at what used to be my cyclist’s thighs and runner’s calves and don’t recognize them—they’re emaciated and weak. My flabby belly sticks out no matter how hard I try to suck it in. My swimmer’s muscles, of which I was so proud—triceps, biceps, and latissimus dorsi, the large shoulder muscles—disappear completely, and the skin fills in with Jell-O-like fat. I gain another slab of fat on my upper back just below my neck, turning me into a kind of hunchback. I go from size 4 to size 8
