Fear struck hard. A new diagnosis?
“No,” I replied. “What’s that?”
“Your eyes shake erratically, particularly when you’re looking to either side.”
“What does that mean?”
“It could mean a lot of things. It might just be a reaction to your medication. I’d need to run some more tests.”
I shook my head. “No. No more tests.”
I was tired of the poking and prodding; I wanted to be left alone. I had a job. I had a life. I was not going to become a professional patient. I promised that I would talk to Craddock about this eye problem when I returned to Swarthmore.
Strauss put up no argument. I was the patient; he couldn’t order me around. “But you need to have this checked as soon as you get back to college,” he said.
I agreed, but deep down I knew I would procrastinate.
* * *
—
My mother telephoned Strauss at his office later that day. “What do you suggest he should do?” she asked.
“It’s not up to me,” Strauss replied. “He’s made it very clear that I’m just a consultant to Dr. Craddock while he’s in Chicago.”
“Forget that,” my mother said. “How would you handle Kurt if he was your patient?”
Strauss was quick to answer. “I’d hospitalize him immediately.”
An audio diary from
ELVA EICHENWALD, 1982
He went to Chicago, and we begged him to come home, but he refused, saying that he could get just as good care in Chicago as he could in Dallas. I couldn’t disagree with him. We hadn’t been too successful with what we had tried to do. He saw a neurologist in Chicago and called and told us that he was going to maintain him on the medication and wouldn’t see him again for five weeks. At this point, I became very angry, and Heinz became very angry and told him that he had to see him sooner, and the kid was just bogged down from dealing with a bunch of idiots, I think. I called Dr. Strauss, who told me that if he [Kurt] were his patient, he would hospitalize him. I asked him to please do that, and he told me he would, with Kurt’s permission.
Kurt was angry, but he agreed to go to the hospital in Chicago in June of 1981. I went to Chicago, and I guess it was all still a pretty nonchalant thing, figuring we’d get a diagnosis and get him on medication. I was going up to stay with him while he was in the hospital and then go on to the East Coast to a seminar and to visit my mother. I never made that trip, not after everything went to hell in the hospital.
CHAPTER NINE
I arrived angry and numb in my room at Northwestern hospital, carrying a sports bag filled with neatly folded clothes. Usually, I would have just stuffed the shirts and pants into the duffel—a lazy trade-off of time for wrinkles—but my mother had packed for me.
She had telephoned me after speaking to Strauss, recounted their conversation, and announced she was flying to Chicago. I protested—going to the hospital would force me to abandon my job and might get me fired—but she brushed off my protests. She would be on the next flight, she told me. Then she doubled down, saying if I refused to check in to Northwestern, she would contact the BGA and tell them I was too sick to work. I was appalled—she was threatening to make me look like a child to my bosses. I considered calling my father to complain but thought better of it. I had never seen my mother act with such assertiveness, and I had no doubt my dad was already furious at her for leaving him alone in Dallas. He hated when she traveled without him, so I was sure he had already lost an argument.
I threw my bag on the hospital bed and greeted my roommate, an obese fortysomething man who stank of stale cigarettes. My mother walked in a minute later. We had arrived together, but she had stopped at the nurses’ station while I stormed off. I didn’t want to be here. I didn’t need to be here. What was the point? More tests, more prodding, another false proclamation by a neurologist that he had divined the secret to stopping my seizures. I had learned to dread hope. As long as I didn’t trick myself into thinking things could improve, no one could disappoint me. I had made that mistake too many times, falling for assurances that a new treatment would work; my emotional devastation always lasted for weeks when I realized they had lied. Lied, not made a mistake. If they didn’t know whether a drug would stop the seizures, why didn’t they say so? What arrogance drove these doctors to make promises they couldn’t keep?
I glanced at the wall over my bed. A tongue depressor wrapped in gauze and surgical tape had been fastened there. What the hell is that? I dropped onto the mattress as my mother bustled around the room, unzipped the duffel bag, and unpacked my clothes into a small closet that resembled a gym locker.
“So, what are you in for?” Stale Cigarettes asked.
“I have no fucking idea,” I snapped.
My mother turned to him. “I’m sorry. He’s just upset.”
Don’t apologize for me! I thought. I stomped toward the closet to inspect how my mother had arranged my clothes. I wanted to cry but shook off the urge. I needed to feel anger, not self-pity.
A nurse with strawberry blond hair stepped into the room and smiled at me. She was stunning. As she introduced herself, I decided maybe it was time to behave myself.
She placed a hospital gown beside me. “You’re going to need to change into this, Kurt.”
“I can’t just wear my regular clothes?” This was my first hospital stay; I didn’t know the procedures.
“No,” Strawberry Blonde replied. “The doctor is planning a number of tests and they need you in the gown.”
With anybody else, I would have argued. But Strawberry Blonde? “Okay.” I smiled.
“Also, never be in bed with the guardrails down. We don’t want you falling onto the floor if you have a seizure.”
I looked at the looping tubes of metal as she raised them on each side. “Won’t I just end up getting wrapped up in them?”
She raised her index finger. “That’s why we always do this.”
Two white blankets appeared. She tightly wrapped them around both guardrails. I squeezed one; the padding was thick. Definitely, if I hit those during a grand mal seizure, I would be fine. I should have thought of this years ago.
I pointed at the wrapped tongue depressor taped to the wall. “What’s that for?”
“It’s a bite stick. If you have a seizure, it’s better for you to bite gauze than your tongue.”
“I bite my lip.” That sounded goofy.
“Your lip, then. We don’t want you getting hurt.”
She ticked off a few more instructions, told me she would return soon, then whisked out the door toward some other lucky patient’s room. Doctors I hate. Nurses I like, I thought.
I changed into the gown, feeling uncomfortably exposed. I climbed into bed and covered myself with the blanket. My mother told me she had some things to attend to but would be back in an hour. After she left, I glanced around the room. Drab, dreary place.
Stale Cigarettes spoke. “So you have seizures, huh?”
“Yeah.”
“That sucks, man.”
I nodded. “Yeah.”
Since we were getting all disorder chummy, I asked why he was in the hospital. I recall thinking that, based on his size and smell, I could diagnose his problem myself.
A woman walked into the room rolling a cart loaded with tubes capped with different colored rubber stoppers. I’d seen those before, so I knew why she was there.
“The vampire arrives,” I joked.
She prepared a needle. “Well, I’m not going to take all your blood.”
She asked if I had a preference of which side to stick, and I told her to use the right. She wrapped a rubber tube around my upper arm. “Nice veins,” she said just before she slid in the needle.
She filled a number of tubes, drawing more blood than anyone had before. I knew they didn’t nee
d such a large amount to measure drug levels.
“Why do they want so much? What are they checking?”
She tilted her head toward a form someone had filled out. “Pretty much everything.”
* * *
—
Within the hour, Strawberry Blonde inserted an IV saline drip into a vein, telling me this was in case they needed to load my bloodstream with Valium, a treatment hospitals used to stop a seizure quickly. Once that was done, she told me someone would be coming to take me to the EEG lab. Wonderful. Electrodes glued to my head again.
It was worse. After an orderly brought me downstairs, the technician explained they would be using nasopharyngeal electrodes in addition to the usual scalp attachments. I had never heard of them.
“Let me show you,” she said. She brought out two pieces of metal that looked like bent coat hangers. I ran a mental inventory, moving down my body; I couldn’t imagine where these went.
“We put them up your nose, then slide them down closer to the lower side of your brain.”
What? “How can something that big go up my nose?”
“We do it all the time. Don’t worry.”
About ten minutes later, the technician finished wiring me up. Inserting the nasopharyngeals had hurt. She’d slid them so far up my nose that I couldn’t tell where the tips had ended up in my head. The rubber bands used to open up spots for the electrodes across my scalp pulled my hair. Then the technician brought out a block of wood wrapped in gauze and tape and told me to place it in my mouth. I didn’t ask why; this was a crueler version of the bite stick hanging over my hospital bed.
I was thinking that this getup seemed like something out of a torture chamber when the technician spoke. “Okay,” she said. “Now I want you to go to sleep.”
I removed the block of wood from my mouth. “Are you kidding? How am I supposed to sleep like this? Everything hurts.”
She told me she would give me a sedative and poured a capful of a pink liquid that she identified as chloral hydrate. I asked if the drug would cause problems with my anticonvulsants. After she assured me there would be no problem, I drank it. Then she put the wrapped block back in my mouth.
I woke later in my hospital room. No confusion, nothing injured; my speech was fine—definitely no seizures. I figured that the pink liquid either put me to sleep or just wiped out my memory of the EEG.
* * *
—
The next morning, Stale Cigarettes disappeared. I never saw him pack or leave. I looked around the room, uncertain about my surroundings. I was in the hospital, at Northwestern, but something seemed wrong. I knew I was supposed to be here but couldn’t fathom why. Of course, there were the seizures. Had I been hospitalized for that? Wait. Did someone say something? It was a voice from far off, detached from my surroundings.
“What?”
“I asked if you’re okay.”
I turned my head and saw my mother in a chair.
“Yeah, I’m fine,” I said. “I just woke up.”
“Do you remember talking to me before?”
“No.”
I closed my eyes. Body assessment. Nothing hurts. But things weren’t right. Very weak. Better than after a grand mal seizure, worse than after a drop attack. Something had happened. I couldn’t figure it out.
“When did that other guy leave?” I asked.
“About an hour ago.”
“Is he gone for good?”
“Yes, he’s been released by his doctor. He said to let you know he hopes you get better.”
Okay. So, I guess I was asleep.
My mother walked to the guardrail by my bed. “You don’t seem right. You don’t remember talking to me this morning?”
“No. But I forget a lot of things.”
“Do you think you had a seizure?”
“I don’t know. Everything seems weird. But I don’t feel the same way I usually do afterward.”
“What’s today’s date?”
That’s not fair. “I never know the date.”
“What month is it?”
“June.”
She questioned me until I asked her to stop. There was no reason to test my cognition and memory. Obviously, some sort of seizure had occurred. Maybe if I had been standing, it would have been a drop attack. I didn’t know what one felt like if it happened while I was in bed.
We talked for about twenty minutes, and I described my investigation of the alcohol program. She pressed for details, never explaining that she was trying to help me regain the focus I lost post-seizure.
The door swung open, and Strawberry Blonde appeared.
“How are you feeling?” she asked.
“Fine.” I wasn’t lying. The confusion had mostly cleared up, though the strange feeling hadn’t passed. I couldn’t think of words that would properly explain what was wrong. “Fine” struck me as close to the right answer.
“They’re taking you for a CAT scan today. Have you had one of those before?”
“Yes.”
She made a few more comments and then was gone. I wondered if I should have answered, “I feel strange” just so she would have stayed longer to ask more questions. She was so cheery. I loved having her around.
Not a minute passed before a man in scrubs appeared and told me he was there to check my bleeding time.
“What’s bleeding time?” I thought of a joke: Maybe if the technician were British, I could tell him the bleeding time. About 11:00 A.M.
“I make a couple of small cuts in your forearm and then time how long it takes for the bleeding to stop.”
“Why do they want to know that?”
“I don’t know. I just have an order to get it done.”
“Will it leave a scar?”
“Maybe a hairline one, but nothing so bad you could see it without trying pretty hard.”
He wrapped a blood pressure cuff around my upper arm and inflated it, then brought out a small device that looked like a white box.
“This is spring-loaded,” he said. “The blades shoot out and retract very fast. It stings for a second.”
He pushed the box into my inside forearm. I ignored the slight pain; I was distracted by how quickly the blades cut the skin. The technician clicked a stopwatch. I looked at the spot where he’d cut me. Two red slices, like squinting cat’s eyes. He brought out something that resembled a flat, circular coffee filter and dabbed at the blood. I realized my mother was standing beside the bed across from the technician.
“Mom, this is nothing. You don’t need to stand there.”
“Humor me,” she said.
I glanced back at the technician, who was still sopping up my blood. I couldn’t think of anything to say.
“What’s the usual bleeding time?” I asked after a moment.
“Most people tend to be around three to five minutes, although I’ve seen some go as long as nine,” he said.
Silence again. We would be standing next to each other for five minutes? I inquired about his job, how he had chosen it, and anything else I could think of to pass the time.
Three minutes. Still bleeding.
At five minutes, he took out another coffee-filter dabber. To me, the bleeding seemed to have sped up. In fact, I couldn’t remember ever bleeding so much from such small cuts.
By seven minutes, his casual demeanor turned serious. We were no longer chatting.
Nine minutes. The blood looked to me as if it was pumping out of my arm, not just seeping. He removed the pressure cuff.
Twelve minutes. “So am I your career record?” I asked.
“I think so,” he replied, his tone signaling he was in no mood for jokes.
Fifteen minutes. He had used several dabbers. He brought out a gauze pad and pressed down on the cat’s eyes. The cotton mesh was quick
ly sopped in red; he grabbed another and pressed again. Blood dripped down the sides of my arm. He threw the second pad on my rollaway table when it was soaked, then reached for a third one and pressed it down hard on the cuts.
At about eighteen minutes, he hit the nurse’s call button.
A woman’s voice came over a speaker. “Yes?”
The technician identified himself. “I need help down here.”
“I guess this isn’t going so well,” I said. He didn’t respond. A nurse appeared. It wasn’t Strawberry Blonde. The technician told her I had been bleeding for close to twenty minutes.
I glanced at my mother’s frightened face. Her fear struck me as odd. Why was she worried? I was just bleeding. It would be okay.
A few minutes passed before the nurse and the technician finally succeeded in stopping the flow, placed a thick pad of gauze on the cut marks, and wrapped it tight with surgical tape. The technician threw out the bloody mess, put away his equipment, and darted away without a word. The nurse asked a few questions, checking to see if I was frightened or confused about what had happened. I assured her I was fine. She told me she needed to change the bloody sheets. I stood and gave my mother a hug; I could tell she needed one. The nurse was fast, and in a flash, I was in a clean bed. She instructed me to click the call button if the bleeding resumed, then left.
That wasn’t epilepsy, I thought.
I watched my mom and could tell she was trying not to cry. I felt nothing. I had shut down emotionally again. Nothing. Not scared, not sad, not concerned for my mom. Nothing.
Guess I’ve got some new disease, I thought casually. I wonder what it is.
* * *
—
A new doctor showed up and asked to speak to my mother in the hallway. There was lots of dashing in and out. I realized no one ever took me for my CAT scan. I’d have to talk to Strawberry Blonde about that.
My mother returned to the room trying to hide her tears. The new doctor followed her. He introduced himself, but I forgot his name almost as soon as he mentioned it.
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