A Mind Unraveled Read online

  “Didn’t they already do that with the nasopharyngeals?” I asked.

  “No, with those you’re looking at the medial side. With the sphenoidal leads, you’re checking the lateral side.”

  My brow furrowed in puzzlement.

  Naarden noticed. “It’s like you’re listening to someone from across a lake, trying to tell what they’re saying. If you move to a different spot, you might be able to hear them.”

  I knew this was a gross oversimplification, but it satisfied me.

  After a few more comments and questions, Naarden left the room. Minutes later, a technician arrived to draw blood, and then White, the hematologist, stopped by. He asked about my experiences at Northwestern and what I understood of their findings, then cleared up a few misconceptions. He explained the details of how he would be monitoring my blood while I was in Dallas and why. He also wanted me to arrange for a doctor to continue a testing schedule when I returned to Swarthmore and have the results sent to him in Dallas.

  “What are you checking for?” I asked.

  “Changes in your platelets, red cells, white cells.”

  “Got it,” I said. “White’s watching my whites.”

  He gave me the pained smile of a man who heard the same joke every day.

  Nurses and technicians came and went. I noticed that all of them introduced themselves and described not only what they were doing but also what they planned to do. At Northwestern, most doctors, nurses, and technicians had fluttered through my room like busboys at a busy restaurant. The few doctors who introduced themselves rarely told me why they were there. I realized: Northwestern was a medical school. Those people had all been residents and medical students. Was that psychologist—you’re crazy because you have clothes on your tray—in training? Was he a doctor or a medical student? Was that doctor who tortured me with two bone biopsies a resident? Had they allowed someone just learning the job to perform such a painful test? Had he rushed the second one, not allowing me to prepare myself, because he was embarrassed for screwing up the first time?

  I tried to remember their faces. Most were young. Omigod. Had it been residents, interns, and medical students with no experience in neurology who relayed their belief that I had faked a seizure? None of them asked me about what had happened. Did they not understand that human beings have emotional reactions to pain and fear?

  I didn’t mind being treated by doctors in training. But how could they not regard patients as living, breathing human beings with real dreads and anxieties? It amazed me that, despite their wealth of knowledge, their basic lack of understanding about the importance of doctor-patient interactions may have led to misdiagnosis. These whoever-they-weres had told me nothing, made assumptions, blithely passed nonsense to attending physicians, and unknowingly pushed me toward suicide.

  Or wait. Maybe I was crazy. Chicago was a split decision, psychiatrist versus neurologist. I decided to wait until Naarden ruled out insanity before condemning the Northwestern doctors. If the physicians in training ended up being right, well, kudos to them.

  As promised, my mother picked up my lunch from The Feed Bag, and I thought it was the best, fattiest food I’d ever eaten. Soon after I finished wiping the drippings off my hands, a man arrived with a wheelchair to take me for some tests. First, off to the lab for one of two EEGs I would have during my stay. The technicians there already knew I would be having one the next morning with sphenoidal leads injected and asked if I had ever experienced that before.

  “No,” I replied. “But I had an EEG in Chicago where they used nasopharyngeals.”

  I remember a gasp.

  “How could you let them do that to you?” one of the technicians thundered, her voice raised in disbelief. “Those are barbaric! No one uses them anymore.”

  I stared at her, trying to hide my emotions. “I don’t know. That’s what they did.”

  For the first time since I’d arrived at Medical City, anger flashed through me, but not toward Northwestern. Instead, my silent ire was directed at the graceless lady who’d just implied I bore some responsibility for doctors’ recommendations. “How could you let them do that to you?” she had cried out. Patients do what they’re told. I’d expected doctors to exercise care. I couldn’t have known I had to protect myself from hospitals inflicting unnecessary discomfort and pain.

  They finished the EEG, and the man with the wheelchair rolled me to the CAT scan. Inside the machine, listening to whirring and thudding, I thought about how commonplace this had become for me. Put electrodes on my head; stick me into a giant donut hole—sure, why not?

  With tests completed, I returned to my room. My mother was waiting there, and I noticed how relaxed she seemed. Then I realized—I felt calm too. I knew everything my doctors were doing, everything they were planning, and why.

  For the first time in months, I wasn’t scared. I knew, even if I had a seizure or whatever they were, I would be okay.

  * * *

  —

  The last thing I remember is walking the hallways with my mother sometime past midnight, trying to stay awake. Earlier, a technician attached electrodes to my chest that connected to the Holter monitor, which looked like a camera hung around my neck. I wondered what would happen if I fell on it.

  After that, everything is blank. I fell into convulsions at 4:30 A.M. near the nurses’ station. A group of people helped me to my bed, then lifted the padded guardrails to protect me. An hour later, more convulsions. My mother hit the CALL button, and five nurses appeared. The night supervisor mentioned that a neurologist named Dr. Steve Lindner was in the emergency room and asked if my mother wanted him to come up. She was astonished—she knew Lindner, having met him at an event she attended with my father at the local medical school.

  “Yes, please,” she said.

  Another severe episode struck, the most violent my mother ever saw, just before Lindner walked into the room. For the first time, a trained specialist witnessed one of my grand mal seizures. Lindner knew my story—I never found out how—and watched as I convulsed, shocked that anyone could have ever misdiagnosed me. He grew anxious that the episode was lasting too long and prepared to load an anticonvulsant intravenously. Before he did, the seizure stopped.

  Lindner decided to conduct a neurological exam. He ran a blunt instrument up the bottom of my foot; rather than turning downward as before, my big toe pointed upward, and the others fanned out. He lifted my arm, held it for a second, then let go. My hand hit my face. He placed his knuckle on my sternum and rubbed hard. No response.

  No doubt. All this talk about hysteria was nonsense. Lindner knew he had just seen an epileptic seizure.

  Someone drew blood to check its chemistry. Then while I was still unconscious, I was wheeled away for my EEG. Needles were injected through my jaw joint in what is usually a painful procedure. I didn’t flinch. Once they finished the test, I was brought back to my room. I never woke up for any of it.

  Naarden reviewed the results. My blood showed changes that can emerge post-seizure. The EEG caught abnormal activity. The focus was in the right temporal lobe, exactly where Naarden had hypothesized based on nothing more than a comprehensive medical history.

  * * *

  —

  I awoke to the sound of snoring. Wait. I’m awake. I don’t snore when I’m awake. I touched a blanket. Why am I snoring awake?

  Time passed. I opened my eyes. I turned my head and saw my mother in a chair. She was snoring. It wasn’t me. She was snoring.

  I glanced around the room. A hospital. My head hurt. Okay. No one talking to me. I was alone. Except for my mother. Body assessment—my cheekbone hurt. I must have hit it. Muscles weak. Okay. Licked my lips. No blood. I touched my head. Nothing sticky. No bleeding. Wait. My jaw hurt. No, it just ached.

  I was in a bed. Of course. I was in a hospital. What led up to this? I needed someone to tell me w
hat had happened, to place me in time. I think I fell asleep.

  I was awake. I heard my mother say my name. I looked at her.

  “Anything good on television?” I asked, my speech slurred.

  She grinned. She had never found my choice to crack jokes as soon as I started recovering from a seizure to be funny, but she understood it was my signal that I was all right.

  I drifted off again. Someone mentioned my name. I opened my eyes. A man I never met before, dressed in a lab coat, stood next to my bed.

  “How are you feeling?”

  “Rather be in Philadelphia,” I slurred.

  I remembered this was a stranger. He might take that line as a sign of a psychological problem. “Old joke. W. C. Fields,” I murmured.

  “I know,” the stranger replied.

  I closed my eyes.

  “Kurt.”

  I opened my eyes and looked at the man.

  “I’m Dr. Lindner,” he said. “I’m a neurologist at Medical City. I was here last night when you had a seizure.”

  Okay, it happened at night.

  “When is it now?”

  He told me. “I know you’ve been told that your seizures might be hysteria. They aren’t. What I witnessed was a grand mal seizure.”

  I closed my eyes. Okay. Says you.

  “Kurt.”

  I opened my eyes. “Yeah.”

  “There is no doubt you have epilepsy.”

  He explained something about the neurological test. The only thing that sunk in was that something weird had happened when he scraped the bottom of my foot.

  I thought I heard him say “Brzezinski reflex.”

  “Like the guy who worked for Carter?” At that moment, I could not have spoken the full name of Zbigniew Brzezinski, former president Jimmy Carter’s national security advisor.

  My mother laughed.

  “No, not Brzezinski,” Lindner said. “Babinski. The Babinski reflex.”

  “Okay.” I wasn’t understanding his point.

  He saw my confusion. “An abnormal Babinski reflex is a sign of a neurological problem. It happened after the seizure I witnessed.”

  “Okay.”

  “Also, I lifted your arm above your face and let it go. People with hysterical seizures don’t hit themselves when it falls.”

  “Did mine hit?”

  “Yes.”

  “Is that why my jaw hurts?”

  “Unlikely. It wasn’t that hard.”

  My mother interrupted. “He had an EEG this morning with sphenoidal leads.”

  “That would leave your jaw aching for a few hours,” Lindner explained. “Is it sharp or dull pain?”

  “Just…” I stopped speaking.

  I heard my mom’s voice. “Kurt.”

  “Yeah?” I opened my eyes. I hadn’t realized they were closed.

  “Is it a sharp or dull pain in your jaw?”

  “Just uncomfortable.”

  I looked to my right. Oh yeah. That doctor.

  “You need to sleep,” Lindner said. “I just wanted you to know, there is no reason for you to question what is going on. This is not psychological. These are epileptic seizures.”

  “Okay,” I said.

  My mother came around the bed and spoke to Lindner. I heard her thank him.

  “Oh yeah,” I said. “Thank you.”

  Sometime later, Naarden arrived. He explained that the EEG with the sphenoidal leads confirmed I had epilepsy with the focus in the right temporal lobe. “So you’re crazy if you think you’re crazy,” he said.

  Confirmed. Almost two years of nonsense, and it had taken Naarden a few days to diagnose epilepsy and find where the seizures started. All the wasted time, all the tests, all the pain, and Naarden had figured out what was happening just by asking questions.

  “Okay,” I declared excitedly. “Now what?”

  “We proceed as planned.”

  An unspoken fury exploded inside me. While I understood the importance of confirming a diagnosis, at that moment, I was enraged that every diagnostic test—not just the ones at Medical City, but all of them from day one—had been useless. All the needles and electrodes and blood and pain, all the claustrophobia and fear as I stayed motionless inside of giant machines, all the accusations and false assumptions, all of it was less important than asking me questions. These doctors thought their electronic toys and numbers and charts were the key, so they shortchanged digging for every detail I could provide or teaching me what I needed to know so I could help fill in the blanks.

  They gained no greater insight into my medical problems by subjecting me to so much discomfort and pain. Everything they had done to me, in the end, was for nothing.

  In a conversation with

  THERESA EICHENWALD, 2017

  My wife

  As an internist, I learned that taking a good medical history is the most important part of diagnosing a patient. That’s what Naarden did with you, which is why he could figure out what was happening. Medicine is a puzzle, and there are lots of pieces to it. You have to observe people and pick up clues from them, and their behavior, and how they sit, and what they say, and their history. You just have to listen for some of the pieces and know the right questions to ask.

  There’s no way a machine can do it. People will explain things differently that a machine would not be able to recognize. The machines provide just another piece and usually should just be confirming or disproving the doctor’s preliminary diagnosis.

  I know from my own patients what people go through when other doctors are careless or inattentive or sloppy. I see suffering, and I see fear. I see it in my patients the same way that I see it in you. And I hate it. I want to erase it from you, and I want to erase it from them. Physicians have no right to play with people’s lives and pretend they know when they don’t. Writing a prescription has a consequence; it’s not just a scrawl on a piece of paper…It translates to a pill that can hurt somebody or help them. Physicians have to care enough to recognize that even what they say to patients matters, that it can make the difference between hope and hopelessness, between a patient living a good life or throwing it away.

  The doctors who did not treat you correctly, who robbed you of your hope and your health for all those years, make me so angry. I would like to go back and protect that person who went through all of that abuse, because it was unnecessary. The answer was much simpler. I am embarrassed for medicine, because this is not who we should be. This is not what medicine should be. Those people had MDs, but they were not doctors.

  CHAPTER FOURTEEN

  The day after my release from the hospital, I returned to Naarden’s office. While there was no longer a chance I would run out of the room, I still asked my mother to join us. I wanted her there to help me recall what Naarden said. While certain events, such as emotional or humorous experiences, lasted as memories, instructions did not.

  Naarden began by repeating his findings from my hospital stay. A cardiologist had reviewed the results from the Holter monitor—no problem. White had confirmed my bone marrow was recovering from the previous onslaught of toxic drug levels, and my condition had improved since the last tests in Chicago.

  “I’m going to be prescribing Dilantin,” Naarden said. “It has been around for decades and is very effective.”

  “Does it do anything to bone marrow?” I asked.

  “There have been some reports in the medical literature that there can be hematopoietic complications…”

  I stopped listening for a moment and marveled at his words. “Reports.” “Medical literature.” I didn’t know what “hematopoietic” meant, but I assumed it was a blood problem. I knew I could ask, and that Naarden would delight in telling me—and perhaps be embarrassed that he had used a word beyond his patient’s vocabulary—but I didn’t need to know spe
cifics. He was answering my question, based on research he could cite off the top of his head. All those academics never mentioned medical literature. They just threw drugs at me.

  “…so you need to see Dr. White frequently while you’re home. He wants your blood checked three times a week.”

  “Will you be taking me off phenobarbital?”

  I should have known the answer to that question. My anticonvulsant had already been boosted back to previous levels. But I could see in Naarden’s expression that he was going to use my thoughtless query as an opportunity for a teaching moment.

  “No one seems to have ever told you the words ‘everything in moderation.’ We’re not going to rush you on or off a drug. We’re going to build up the Dilantin slowly and see if it decreases the seizures with limited adverse effects. If we do more than one thing at a time, and there’s a problem, we have no way of knowing the cause. That’s why no one knows if it was Tegretol or Depakene or both that caused your bone marrow problems, because the dosages were increased simultaneously. And the result of that rushing in and adding medications is that, at least for now, we can’t use either one anymore because of the potential danger to you.”

  Again, the proper approach seemed so obvious.

  “Now, I do want to take you off phenobarbital once we get the Dilantin set,” Naarden said. “Maybe you won’t need anything else, but if you do, phenobarbital is not the best choice. Hopefully by November, if necessary, I want to start switching you from phenobarbital to another drug called Mysoline. It metabolizes into phenobarbital and other anticonvulsants. It’s a better drug.”

  “What if the Mysoline doesn’t work?” I asked. “Are we out of options after that?”

  Naarden smiled. “No, not at all. If the Mysoline causes problems or the seizures aren’t better, come spring we can try another drug called Tranxene,” he said. “But this is all up to you. You know, anticonvulsants have side effects. The idea is to get the best balance between side effects and seizures. You’re the one who decides the right balance.”