By Stephanie Allen Crist
As published in Mosaic 2014.
Tin rattled against the rough-hewn boards of the picnic table as I crushed my cigarette into the upside down trash can lid, chasing down each fleck of glowing red cherry. I didn’t want to risk a single spark flying into the dry brush. I’d seen the smoke from the summer’s fires as my brother, Patrick, drove us from Denver to his cabin high in the Rocky Mountains. The deck chair rocked and creaked as I shifted my weight. It was a strange contraption made of sticks fastened together with thin, iron bands. My head, feeling too heavy for my neck, drooped over the chair’s back. I sucked in the thin, dry mountain air until I’d filled my lungs, but somehow it wasn’t enough. A marching band with a big bass drum thudded across my temples.
Threads of conversation wound through the air like wisps of smoke, and I tried to grasp at the threads, maybe follow along. Maybe even participate. My mother asked my brother about the little birds flitting around the edge of the deck. Patrick discussed the natural beauties surrounding his mountain cabin with gushing enthusiasm. He liked the birds, but he didn’t know what they were called. He eagerly moved on to the moose, the bears, the stars. He couldn’t wait to show us the stars.
We decided to wake my son, Willy, to see the stars if he didn’t wake for dinner. He was napping, which shouldn’t have surprised us quite as much as it did. We left our home in Wisconsin’s City of Parks quite early. Willy slept most of the drive to the airport in Milwaukee. It was his first visit to an airport, his first ride in an airplane, his first daytrip through Denver, and his first taste of the mountains—a lot of firsts for anyone, especially a boy with autism.
Patrick was excited to show off his mountain. But all these firsts overwhelmed Willy long before we’d reached the cabin. He explored the cabin rooms momentarily and then climbed into the loft, falling asleep on the mattress without his special blanket or pillow. Patrick wanted to show Willy how intense the stars could shine so far from city lights, so we’d definitely wake him for that. That is, if my pulse would stop rumbling in my head like a locomotive rushing over rickety tracks.
My mother and brother were discussing dinner preparations as they stood and walked inside. I leaned forward, ready to push myself up, but the world swarmed around me and my stomach churned, reminding me of a childhood ferry rides in choppy waters across the Long Island Sound. Pressure squeezed my head. I pushed myself out of the unstable deck chair and almost fell as my head wobbled on my neck. I tottered two steps to the left until my hand found the railing. I gripped it hard enough to imbed splinters in my hand. I held my head perfectly straight and my vision cleared. I took one step. Then another. Two, maybe three more steps. Then I ran out of railing. I had to cross the deck to reach the door—wide open space with nothing to hold on to.
“I need help,” I said.
My brother poked his head out of the door. “What’s up?”
“I’m dizzy. My head hurts.” I squeezed the words out against a tide of nausea. “I need something to hold on to.”
My brother’s cheerful face crumpled as he stepped away from my mother’s banter and took me by the hand. I tried not to lean on him because I knew his knee hurt from the extra work he’d been doing to get things ready for our visit. I couldn’t help it though. I needed the support.
“Something’s wrong,” I said. “I’ve had sinus headaches. Migraines. I know my head. It’s never hurt like this. Except when I had a bike accident.”
I knew I was babbling, but the sound helped orient me, keeping the focus off how perfectly straight I had to hold my head to avoid throwing up. Wings rustled as birds settled to the right. I couldn’t look. They probably landed on the fence that provided the porch with a modicum of privacy from the wilderness beyond. A slight breeze blew wisps of spider-silk hair, tickling my face, but I couldn’t risk pushing them back behind my ears for fear that I would slant my head to one side or the other.
I thought about how much I’d looked forward to this trip. I thought about my husband and the two children I’d left behind when my mom and I took Willy to visit my brother. Alex and Ben were autistic, too, both more severely than Willy. Neither of them was ready for a trip like this, and my husband Mark had little interest in traveling. This was our last chance to visit Patrick’s cabin in the mountains. Soon he’d move to New York City to start graduate school.
My foot landed on the edge of one of the deck boards that was not quite level with the other, and I tipped, my head tilting to the side. It was such a small movement, but the world swam in a sickening twirl of browns. My brother’s hard grip on my elbow was the only steady thing. “Oh, God, make it stop,” I prayed. “This is supposed to be a vacation!” Hot tears warmed my cheeks. I tried to remember the last time I’d cried in pain. It was when I fell down the garage stairs, alone and in the dark. I landed on the concrete floor, snapping my wrist. I’d called for help, but the garage door was thick and well-insulated. My husband, my mother, and my step-son were just on the other side of the door, playing Monopoly, but they couldn’t hear me.
I finally forced myself to stand and climb the steps, but I couldn’t open the door with my hand dangling from my arm. I called for help and kicked the door. Nobody came. I balanced my hand and broken wrist across my forearm and turned the knob. I cried from the pain, and I could have kept crying; it hurt so much. But after the surgery to set my wrist—even though the pain hadn’t stopped—I had to compose myself because it scared my children whenever they saw me cry. My husband, my children, and even my mother relied on my strength. With three autistic children and a husband struggling from a five-year-bout of depression, I needed to be very strong indeed.
Every time I broke down, every time they saw me falter for even a moment, doubts would creep across their faces and into their hearts. I couldn’t let that happen. I wouldn’t. I would endure whatever came. If it hurt, I would just deal with the pain.
I tried. I really did. But there was a day while my wrist was still in its sling, that I tried to climb the stairs to the upper level of our home. My son Alex—the most severely autistic of my children—stood on the stairs, bouncing and shrieking his excitement over some fragment of the VeggieTales video he had just watched. As I tried to squeeze past him, Alex grabbed onto me as he tended to do whenever he had more enthusiasm than he could contain, which would have been fine—I’m used to it—except he grabbed my broken wrist.
He squeezed as hard as he could with both hands. I wailed out a wordless howl and collapsed in pain. I wept and emitted strange beastly sounds, but I couldn’t do anything until Willy, my older son, pried Alex’s fingers off my wrist. Even then, in those first few moments of reprieve, I couldn’t react, so I couldn’t keep Willy from thwacking his brother in the head and saying, “Alex, you naughty boy! You hurt Mama!”
This time was different though. As I righted myself, forcing my neck into the ramrod-straight posture I needed to hold my head steady, I decided I would prefer a broken wrist to this sickening headache. My brother led me to the cabin and settled me into the soft, cushioned embrace of his favorite chair. He retrieved a hot washcloth that felt good against my face. “If this doesn’t get better, I’m going to have to go to the hospital,” I warned him, keeping my voice soft, as if that would ease my headache.
The washcloth got cool, was heated again, and cooled again several times. I don’t know how long I sat there, thinking that I would spoil our vacation with the need to run down the mountain to an emergency room. I worried about brain tumors. With nearly six years of student loans under my belt, my brain was just too damned expensive to get sick. Besides, damn it, this was the first real vacation I’d had in nearly ten years.
Then, I heard it. Except it wasn’t really a sound, but something prompted me to look up. It hurt to tilt my head, but I looked into the loft where Willy was sleeping. His foot was shaking against the loft railing. A fraction of a second passed while the image registered over the marching band banging through my brain. I jumped out of the chair and rushed to the ladder fashioned from knotty tree limbs. The rough wood dug into my bare feet as I forced myself to climb into the loft.
Willy’s whole body shook. His head and one shoulder hung off the mattress, but he wasn’t drooping because he was so rigid. Foam bubbled up from his clenched lips. His eyes rolled back into his head; he was having a grand mal seizure.
“Willy, Willy,” I screamed, my voice suddenly hoarse.“Willy!
In the loft I cradled my son’s head as his shaggy, blond hair flowed over my hand like a silk mop. His skin was clammy and cold. The loft was stifling hot. My son shook in my arms.
My brother’s head came over the ledge, then disappeared as he grabbed his phone. I half-heard his conversation with the emergency responder, blurting out answers to the questions he shot at me. I wanted to cry for him not me, but suddenly the shaking stopped. Then his limbs flopped around in wild, uncontrollable gestures. I lifted him back onto the mattress.
“Willy, can you hear me?” I shouted. “Willy, talk to me!” His tongue scraped across his dry, foamy lips, and then folded out of his mouth like a puppy’s. He blinked, seeming to recognize me, and then closed his eyes, trying to roll onto his side. I helped him and watched as he curled his knees to his chest. I smoothed his hair and tried to talk to him, but the sounds that rolled out of his mouth lacked any recognizable enunciation. He seemed so cold and so weak. His pale face had turned a green-tinted gray.
“Help is on the way,” my brother said. “I’m going to wait by the road so they know where to go.” The secluded cabin would be easy to miss.
How long would it take for the help to come? It felt like forever. Emergency responders from the surrounding area arrived first, but they didn’t bring an ambulance. They came in and helped bring Willy down from the loft. I followed. They had equipment and training. They took his vitals and communicated with the emergency response network. Once they were convinced that Willy wasn’t in any immediate danger, they called off the helicopter. The ambulance would arrive soon enough.
The part of my mind that wasn’t an emotional wreck had to marvel at the system they’d developed. Emergency care up on the mountain could be disastrously slow, even deadly. But these people had worked out a system to provide what was necessary. I was very grateful for the men who were able to arrive so quickly and relieve at least some of our anxiety.
Once we were down from the loft, once Willy was safely in the hands of people who knew what they were doing, it was only then that I remembered that my head hurt. The headache was still with me keeping me company through the wait and the worry. I swam through a sea of questions about Willy, unsure of how coherent my answers were through the fog of pain and the adrenaline that made my heart pound all the harder, all the louder. I fell into a daze until the ambulance arrived. Two friendly men came in, getting up-to-date reports from the first responders. They took charge of Willy’s care. One of the EMTs and one of the first responders helped get Willy into the ambulance and into the bed waiting for him there.
I was slower, trying to make sure my mother and my brother would be following us down, making sure that I could ride in the ambulance with Willy, making sure we had everything we needed. Where was my purse, Willy’s blanket, and his special pillow? I was only a few steps behind, distracted and worried. The back doors of the ambulance had been left wide open. It seemed like a perfectly normal thing to do. An EMT had taken me around the side where there was a set of steps into the ambulance. It wasn’t until I took my first few steps into the ambulance that I saw the moths, hundreds of them fluttering inside the ambulance. All the lights inside had attracted the mountain moths that were used to profound darkness. Some were huge; others were tiny. Moths choked the air, flew into my face, and landed on my son, providing yet another distraction.
Finally, we were moving. While one EMT drove the ambulance, the other took care of Willy. As he talked about what he was doing, I kept waving my hands around, trying to keep the moths off my child, off the EMT, off the equipment my son needed. “I’ll be ready if he starts seizing again,” he said, “but he’s fine for the moment. You can relax.”
Next, the EMT took out some sort of vacuum and started sucking up the moths. Within moments, they were gone. And then the adrenaline started to wear off. I was woozy and my head hurt worse than before as the ambulance bumped and swayed its way down the mountain. I peeked through the back window and saw my brother’s Jeep following closely behind. Good. Good. Everything would be fine. I could relax if only my head would stop pounding.
Apparently the EMT noticed that I was sick, too. He asked me simple questions, probing me for information. I answered, stumbling over my words and backtracking until I’d gotten them right. Finally, he told me my head hurt because I was dehydrated. I’d gone from nearly 80% humidity to a mere 5%. I had thought the altitude change had made me suddenly ill or perhaps a tumor was growing in my brain, but all I needed was more water.
When we reached the hospital, I talked with the doctor and Willy’s treatment began. The EMT put a bottle of water in my hands, and by the time my mother and brother found their way to Willy’s little room, I had consumed half the water. The oceans of pressure squeezing my brain had subsided to a dull roar of waves hitting the shore. By the time I finished the water, my headache was reduced to a stress headache. The pounding, squeezing torment was gone—all from a bottle of water.
If only Willy’s new diagnosis of epilepsy could be washed away so easily.