Dec 192012
 

By ELIZABETH GLASS

Every night when I was 10, the Illuanda Indians got me out of my bed and took me across the street to the Reed’s yard, which was five acres in the middle of our neighborhood. I was their new leader, an old soul, born anew in 1967, and it was 1977 when I was old enough to be so special they took me in as their medicine woman. The Illuandas were an ancient tribe that had lived on that property hundreds of years earlier. They wore orange leather pants and tops with beautiful fringe. The tops had intricate beadwork that the women taught me how to do so that I would be able to make it by myself when they were no longer able to appear to me. They taught me their ways: how to hunt buffalo, tan their hides, and make clothes and instruments out of the leather. Some nights I wore my headdress I had gotten from the South Union Shaker Museum with my grandmother and carried the American Indian doll purse, which was a dark-skinned doll with a purple leather dress around it that zipped up the back. Other nights I took the drum with stretched cream-colored leather, or I took my handheld drum there. I hadn’t wondered why a Shaker Village museum sold those things; I just knew they were important because they brought me closer to the Illuandas.

I tried to tell my grandmother that summer when we went to the Shaker Museum how important the Indian items were to me, and how much closer I was to the Illuandas, but she poo-pooed me and dismissed it. The school counselors, though, were very interested in them. I went to them every day to tell them about the Illuandas, and how important I was to them. I loved making the trip down the hall to the office where I would be taken seriously and listened to. I told Mr. Abbott* and Mrs. Matchem, a rapt audience, about the flowers the Illuandas taught me how to make into a poultice to cure ailments, and to make soup out of wild onions and flowers that I practiced making in my mom’s cast iron cauldron during the earlier days of summer break. I taught my sister Callie how to make the soup, but when I tried to teach her other things, she hollered for Mom. It was important for me to teach everything to Callie. The Illuandas were willing to have her join the tribe if she would believe in them, but she had to get second-sight before they would take her to the Reed’s yard at night and begin training her. She wasn’t willing to open her mind that way, which worried me about when the end of the world came.

The day came when Mr. Abbott told me that he would like to send me to the University of Louisville for them to study me. I was so proud. I was in touch with other worlds, and they were going to learn from me. I told my mom with a puffed up chest of importance. “No,” she said. I argued. She told me, “I’ll go down and talk to the counselors tomorrow.”

I was sure that she’d see their insight, but when she got there, she asked, “Does this happen at a certain time each day?” Mrs. Matchem checked her calendar. She was surprised to learn that it was always just before 10:30 a. m. “What subject does she have at 10:30?” Mrs. Matchem went to my classroom and asked Mrs. Caruso, then came back and told my mom, “Math.” My mom humpfed and said, “Elizabeth doesn’t like math” and left.

She told me not to go to the counselors anymore, and when I tried they turned me away. The Illuandas still visited me nightly until we moved when I was 11, but I didn’t mention them often after that.

It wasn’t until I was 22 that I did get studied. I was reading a chapter for my Abnormal Psychology class while I worked on my masters in counseling psychology; a small paragraph of no more than six sentences described temporal lobe epilepsy (TLE). It was a type of epilepsy that caused heightened sensations, feelings of uniqueness, and seizures that resembled “temper tantrums” with flailing hands, screaming, hair pulling, kicking and other psychomotor activities. The seizures could also be small, involving staring, and the patient could also be unreachable during those times, or experience déjà vus, where you feel like you’ve done something or been somewhere before, but you haven’t, and jamais vus, which is when you have done something repeatedly, but have the overwhelming sensation and thought that you haven’t ever done that before. Although TLE mirrors bipolar disorder in many ways, it is caused by seizures and not a chemical imbalance. I read that paragraph and immediately knew what was wrong with me, something I had been searching for since I was a child.

I went to a therapist at the University of Louisville Counseling Center and told her what I thought. The psychiatrist, Dr. Stein, was there and asked me to describe my seizures. I told her of all of the times I had no control and when I had what seemed to be horrible behavior outbursts, and that I never remembered them afterward—I pieced them together based on what those around me said—and that I had to take a nap afterward. She told me that TLE is quite rare, but it did sound like I had it, so she referred me to a neurologist.

The neurologist I saw, Dr. Botts, didn’t do a physical exam. He took me into his large office and sat me across the desk from him. His office resembled that of a lawyer’s more than a doctor’s and seemed set up to be intimidating.

“When did you begin having these so-called seizures?”

“All my life,” I answered. “I’ve always had them.”

He had me describe them, then said, “You’re just having temper tantrums and want an excuse for them, aren’t you?”

I could have cried. I felt helpless, finally having found out what was “wrong” with me, feeling in large part insane; I wasn’t being taken seriously. “No, that’s not it,” I said.

“Well, you go on home to your husband and straighten up. There’s no reason to think you have temporal lobe epilepsy. It’s very uncommon. You read in your book what you thought would be something to excuse your behavior, and now you just want to blame your bad behavior on it.”

I stood up. I had just gotten married and was already having trouble, in large part due to my seizures. I knew I couldn’t control them and they would end my relationship. As I stood to leave, Dr. Botts said, “Let me ask you one more question. Have you ever had a déjà vu?”

“Yes,” I answered. “All the time.”

“How often is ‘all the time’?”

I thought about it. I knew that everything hinged on this question and I wanted to give him an answer that showed I had TLE, but I didn’t know what the proper answer for that would be, so I answered truthfully. “Six or seven.”

“Six or seven ever?”

“No,” I said, “six or seven a day.”

He sat up. He had been leaning back in his executive desk chair the way my dad, an attorney, did when he knew the whole story already, or when he was lecturing someone—be it me or one of his clients. The doctor’s eyes had opened wider, then went back to his regular look. “Well, I don’t think it will show anything, but I’ll order this EEG for you. You have to stay awake 24 hours before the test. Can you do that?”

I nodded.

“Just because of the déjà vus, I’ll go ahead and start you on Tegretol. If you were to really have it, you’d need a much stronger dose, but this might help you with your troubles.”

Walking into the hospital for the EEG with my (then) husband Dennis, I felt foolish. It seemed neither he nor anyone else believed I had TLE, which made me feel crazy. What if the test showed that I didn’t have epilepsy and I was simply out of control without a cause? In my memory I had my pillow, a blanket and a stuffed animal with me when I went to the hospital, but I know I didn’t—that was how powerless I felt.

During the EEG, I sat in the recliner after having 20 electrodes hooked to my scalp that would measure my brain waves. I was so tired. I had not been allowed to drink coffee to stay awake, though Dennis had because he stayed up with me so I wouldn’t fall asleep. The test involved sitting in the chair and having my brain waves measured during regular times, with strobe lights going off toward my closed eyes. When I was done, the technician wouldn’t tell me anything, just that I should hear from my doctor the next day.

I didn’t. So I called him after two days, but he didn’t return my call. On the third day, I got a call from my mom. “Well, apparently you have it.”

I was quiet, then asked, “What?”

“Dr. Saunders, Michele’s psychiatrist, called and she has seen your EEG. It’s being passed around the hospital because it’s the perfect example of someone with temporal lobe epilepsy, and that’s apparently really unusual.”

This was 1990, pre-HIPAA, and even so it was within the same hospital, so it’s conceivable that could still happen, but it was surreal finding out from my mom, through my sister Michele’s psychiatrist, that I had TLE. I called the neurologist’s office again. It was a Friday, around 3 p.m. If I didn’t get hold of him, I wouldn’t hear back at least until Monday.

“He’s on vacation for the next three weeks. He’s going out of the country,” I was told by the receptionist. I told her what I had heard. She seemed skeptical, but I got a call back from his assistant.

“What is it you heard?” she asked. When I told her what my mom said and how it got to her, she put me on hold. It wasn’t long before she came back. “I need to try to reach Dr. Botts. He’s going out of the country, and I don’t know if I’ll be able to tell you anything if he’s already gone. I’ll call you back.” Calling me back was quite a process. I worked in a school building running an after-school childcare program, and the only phone was down the hall in the Home Economics room. I had a pager—this was before many people had cell phones—so she had to page me, and I called her back from the Home Ec room. When I reached her, she said, “I caught Dr. Botts on the airplane. He said to immediately up your Tegretol. Do you have some with you that you can take?” I did. “Take it right away. And double the dose he had you on.”

I got off the phone and went to the nearest water fountain and took another Tegretol. I felt crazy, vulnerable and relieved. I slid down the wall. Three kids were with me, waiting to go outside and play. It was a small program at the time, and I was the only staff. Six eyes stared at me as I sat on the floor and cried, then I took the children outside, and we had the best afternoon we had had that entire fall.

***

When I was 10, Dad had me tell his best friend, another lawyer named Mr. Hammell, about the Illuandas. I told him of their history—how they were killed by white men and wiped out, that they were a regal and proud tribe and had mystical powers, and they now lived within stardust and appeared only to me. He asked why I was chosen as a new one. “Because I’m special,” I said. “Because I can see them.” I told him how we danced around a fire far into the morning hours, that they took me out of my bed at night and left me on the floor in the mornings.

Later that night, two laughing attorneys came into my room and picked me up out of my bed and put me on the floor. They shushed each other and giggled like the girls in my class did when I had seizures. I heard them say “Indians” more than once. I pretended to be asleep while they moved me and stood in the doorway talking. After they left and I was falling back asleep, I was cold. At least the Illuandas covered me up when they brought me back to my room.

*All names are changed.

Elizabeth Glass, of Louisville, Kentucky, has master’s degrees in creative writing and counseling psychology and is the recipient of grants from the Kentucky Foundation for Women and the Kentucky Arts Council. Her writing has appeared in a variety of journals, including Still.


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 December 19, 2012

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