Miles To Go Before I Sleep

by Jackie Nink Pflug

  I did my grocery shopping. At the checkout counter, the clerk rang up the bill. I was getting out my checkbook when the bag boy said something to me real fast.

  “Paperorplastic?”

  I just stared back at him with a blank face. “What did you say?” I asked.

  “Paper or plastic?” he repeated.

  I still didn’t get it.

  “One more time, please. Go slow.”

  “Pa-per or pla-stic?” the boy said.

  He wanted to know what kind of bag to put my groceries in. I’d never been asked that before and, coming fast and out of context, it made no sense. I had to stop and think to myself, What’s paper? Okay, it’s brown and I can use it again. My response didn’t come out automatically.

  “Paper’s fine,” I finally said.

  After loading my groceries in the back of the truck, I got back behind the wheel and started home. I got lost again. I couldn’t remember how to get home! I felt terrible and started to panic.

  I had to drive back to the grocery store again to call Scott. I felt so helpless. Through my tears, I told Scott that I didn’t know how to get home and asked him to come get me.

  When I first started driving, I got lost all the time. I’d get lost going to the doctor or the grocery store, or to meet someone for lunch. It didn’t seem to matter if I’d been there twenty times before—I’d still get lost. Somehow, the repetition wasn’t getting into my long-term memory. Something had to be healed in my brain before I could catch on.

  I got very mad and upset when people didn’t give me good directions or took for granted the little things I needed to focus on. I took everything so literally. I had to follow their directions to the T. If the directions were even slightly off, I’d be completely disoriented.

  If people were depending on me, I’d get so frustrated, angry, and depressed when I got lost. Sometimes, I’d pull over to the side of the road and feel my attitude change immediately. I’d start crying, and think, if I hadn’t got shot, I sure wouldn’t be here. I sure wouldn’t be lost. A few times I got lost on my way to a speaking engagement and had to call someone to drive me there.

  One time I was driving from Minneapolis to our apartment in Minnetonka and ended up in St. Cloud—a city about fifty miles northwest of where I wanted to be! Time didn’t mean anything to me back then. I just kept going and going. I was so focused on driving that I had little energy or attention left over to consider where I was going.

  Sometimes, I’d call Barb Wilson in Texas and just cry, because I couldn’t go down the street without getting lost. Something about my brain made it impossible for me to remember from one step to the next.

  One weekend, I was invited to have dinner with some friends. I called to get directions, but managed to get lost anyway.

  I was mad at myself for not being able to figure out where I was. I pulled over to check my map and, eventually, got back on the right road. But my exit came up surprisingly quick. I had to make a sudden lane change to make the exit. At the last moment, I pulled my car into the right lane and merged onto the ramp. There was a car not far behind me, so I waved to thank the driver for letting me in.

  As soon as I pulled off, I realized I was in trouble. Looking back in my rearview mirror, I saw a very angry looking man right at my rear bumper. He gunned his car, pulled in front of me—then abruptly stopped on the ramp.

  The man, about twenty-five or twenty-six years old, got out of his car and walked over to my car. I rolled down the window to see what he wanted. “You cut me off!” he yelled.

  He started yelling a string of obscenities at me. “I’m sorry,” I said softly, “I was having trouble with my directions and I’m on my way to a Thanksgiving dinner….”

  He kept yelling.

  “I said, I’m sorry,” I responded, even louder this time. He stopped yelling and left.

  I was badly shaken by the incident. I’d never seen anyone so angry. His face was red with rage, the veins on his neck were popping out. I was afraid he might pull a gun and blast me right in my car. A week earlier, I’d heard a news story about a woman killed in traffic when a disgruntled driver got mad at her. It brought back memories of the hijacking.

  Still shaking, I rolled up the window, pulled over to the side of the road, and sat in my car, sobbing.

  This wouldn’t have happened if I hadn’t been hijacked! I thought to myself. I felt so miserable. Why did this happen to me?

  Just as I started to feel more comfortable driving, I suddenly had another problem to worry about—epileptic seizures. I had been warned that this delayed reaction was common for many people who suffer head injuries, trauma, or brain damage.

  Seizures are caused by abnormal electrical activity in the brain. While most last only a few minutes, some continue for as long as thirty minutes. There are several different types of seizures, but two of the most common are grand mal and petit mal. A grand mal seizure is more severe and lasts longer than a petit mal seizure.

  A grand mal seizure usually begins with shaking, convulsion, or muscle jerking. If the seizure victim is standing when a seizure strikes, he or she will suddenly collapse on the floor. Someone having a grand mal seizure may lose control of bladder and bowel functions, temporarily stop breathing, and bite his or her tongue or choke on anything in the mouth. During a seizure, people report experiencing a temporarily altered state of consciousness and perception. Seizures are typically followed by periods of confusion, distorted thinking, and memory loss.

  Because seizures strike suddenly and affect motor control, a seizure could be deadly when I was driving. My doctor was also concerned because the shock caused by an epileptic seizure creates lasting neurological damage to the brain. My doctor explained that a little hole is created in the brain during a seizure. The brain “remembers” the seizure and may recreate it again—just because it remembers it. So doctors are eager to prevent seizures.

  As a safeguard, I was put on Dilantin, a strong antiseizure medication. Since I took the pills regularly, I figured there was nothing to worry about.

  As I became more independent, I wanted to start exploring again. One thing I did to get out and meet people was to start going to Toastmasters, a group of mostly professional people, who get together to improve their public speaking skills. Most of the members had businesses of their own. My primary reason for going there was to meet people. I didn’t have any friends at the time—none—and Scott’s friends were his friends.

  I also attended Toastmasters because I was starting to speak to church groups and other organizations, and I wanted to feel more comfortable as a public speaker.

  One Saturday morning, I got in our new Ford Bronco and drove to a Toastmaster’s breakfast meeting. As usual, I got lost along the way.

  When I finally got to the meeting, I had a chance to meet some neat people, including a young woman named Heidi who was also a special education teacher. She worked with learning disabled students and people who were coming back from head injuries and accidents.

  I was sitting at the table listening to a speech when, all of a sudden, something strange began happening to my eyes. A bright, rainbow light appeared in the left corner of my visual field. I shut my eyes and opened them again, figuring something was wrong with my contact lenses. The aura was still there. I took out my contacts, but that didn’t help, either. I felt strange, confused. What was happening to me?

  I leaned over to Heidi and told her what I saw. She told me I was about to have a seizure. Heidi quickly led me to a nearby ladies’ room, moved away the trash can, and helped me lie down on the floor—and called 911.

  I couldn’t believe this was happening. I was taking my Dilantin regularly, so I thought I was safe. I told someone to go get the pills in my purse, hoping that more pills would stop the seizure.

  By this time, the rainbow light had started moving to the middle of my vision field. Yet I was still able to talk to the people gathered around me. I couldn’t see anything, but I could still talk.
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br />   I was just hysterical, because I didn’t know what was going to happen to me. I’d never had a seizure before. I thought maybe I was going to die—that I wouldn’t come back.

  When a woman came back with my pill bottle, I told her to take out three pills. I got them in my mouth, but I never actually swallowed them. Luckily, I didn’t choke. Pills wouldn’t have worked then anyway.

  Seconds later, I was having a full-blown grand mal seizure—the most serious kind.

  I was still unconscious when the paramedics arrived twenty minutes later. I came to in the ambulance and saw that I was hooked up to a bunch of monitors.

  “What’s your name?” a paramedic asked.

  “I don’t know,” I said.

  “What were you doing when this happened?”

  “I don’t know,” I repeated.

  Everything that happened to me before the seizure was a blank. I didn’t remember my name. I couldn’t see very well.

  The medics injected me with Valium, a tranquilizer, and more antiseizure medication, and I went under….

  Having a seizure was an awfully scary thing. My whole body went into violent convulsions for about twenty minutes. In the grips of a seizure, I was totally unaware of what was happening to me or where I was. I could easily injure or bruise myself. I came out of them alive, but I lost some memory for a while and my head felt fuzzy. For days afterwards, I experienced a lot of mental confusion. My vision also got even worse for three or four days after a seizure.

  Emotionally, I felt powerless and out of control. A seizure could strike at any time, with little warning. I could be eating in a restaurant, shopping at a mall, driving down a freeway, anywhere, when I’d suddenly see a rainbowlike aura signaling the onset of a grand mal seizure, equal in intensity to the electric jolts that psychiatric patients get in electroshock therapy.

  When the rainbow light appeared, I had about three minutes to find a restroom, tell someone what to do, clear everything out of the way, and get down on the floor. As the rainbow light moved from the left side of my visual field to the middle, my body grew cold and prickly and I started to shake. Then everything went blank.

  As the Valium wore off after a seizure, I felt overwhelmed by feelings of emptiness and helplessness. I felt terribly isolated and alone. I wouldn’t talk to Scott about my feelings and didn’t have any friends nearby.

  The Dilantin slowed my ability to learn and recover from the hijacking. Mental confusion and dizziness are other common side effects of the drug. Emotionally, I also felt awful. I woke up every morning feeling anxious, irritable, tired, and depressed as if I were in a dark cave. I woke up to a world of fear and hate and anger. And I couldn’t see any way out of it.

  I often called Barbara to tell her how sad and miserable I was—or just to cry. Hearing her voice was a small comfort when the world around me seemed so cold and dead.

  I was terrified by the prospect of having more seizures. I found myself constantly checking the left corner of my visual field, expecting to see the rainbow light at any time.

  CHAPTER 9

  AFTER THE RAINBOW

  I WASN’T GOING TO LET SOMETHING as small as a seizure get me down. Not long after my first seizure, I started getting restless again. I was eager to get back into the world.

  On Sunday mornings, I flipped through the “Help Wanted” section of the newspaper, looking for teaching positions. I applied for some, but didn’t get any offers. The job market for teachers continued to be tight. Then, through a personal connection, I heard about an interesting opening.

  My friend Suki Fitzgerald called one day to see how I was doing. Suki had just started working as an independent consultant for IBM. Her job sounded interesting; she flew all over the United States showing regular education teachers how to adapt IBM’s existing education software so it could be used to teach LD kids.

  IBM wanted to hire another independent consultant with special education teaching experience to learn their software and travel around the country showing teachers how to use it. The person hired would be responsible for covering a nine-state region.

  I hadn’t been out in the world much since the hijacking four months earlier, but I knew IBM computers. I’d used them often as a teacher. I would have to take only a few more classes to get more comfortable with them and learn some new software. I could do that! I thought. It didn’t sound that hard.

  Suki gave me the name of a contact person in Minnesota, and I decided to apply for the job. I didn’t feel safe driving in downtown Minneapolis, where IBM had its offices, so Scott dropped me off for my first interview.

  IBM’s office was in a large, modern glass and steel tower in the heart of the Minneapolis business district. I walked in the building and saw busy men and women hurrying in and out. I was excited to be in the fast-paced, hustle and bustle world again!

  I took an elevator up to the fifth floor, entered the IBM office, and gave my name to the receptionist. After a few minutes, a middle-aged man in a dark business suit came up and introduced himself. We walked back into his office and chatted a while.

  “Are you sure you’re ready to do this?” the interviewer asked me.

  “Sure,” I responded. “I’m ready to go back to work.”

  After I filled out some forms, the interviewer said I’d need to come back for another interview. I scheduled it for a week later.

  The morning of my second interview, I put on a nice dress and heels and had Scott drop me off at a bus stop to catch a bus into downtown Minneapolis. I waited and waited, and the buses kept coming. But my bus was nowhere in sight.

  Finally, I asked one of the bus drivers if I was standing in the right place. It turned out that I was on the wrong side of the freeway—going in the wrong direction!

  I walked across the freeway. Bus number 23 finally came, but I let it go. I didn’t see it correctly. To me, it looked like bus number 3.

  I waited about an hour and finally another bus came. I asked the driver if I was in the right place, and he told me I was, but that bus 23 had just come and gone. He could take me downtown but not to the street I needed to be on.

  The driver dropped me off in downtown Minneapolis. But since this was the first time I’d ever been downtown on my own, I was soon lost. I stopped to ask several people to help me find the street I was looking for. I didn’t plan or think ahead at all. I didn’t bring the phone number of the interviewer, so I couldn’t call and explain my delay. I finally found the building and arrived at my interview two hours late.

  The interviewer agreed to see me anyway, and we talked about the position. He thought I’d be a good fit, because of my special insight into the problems of LD children and teachers. I could speak intelligently about the main issues in special education—and I knew about LD.

  He asked if I’d be willing to have another interview, and I said yes. For my third interview, I met with a very sweet woman. Again, I was asked if I thought I could do the job. I said yes.

  The next day, she called and offered me the job. She knew I didn’t have a strong computer background, but she was confident that I could learn about that. I thought I could too.

  At that time, I hadn’t been in any type of learning environment since the hijacking. I just assumed that I could learn the way I used to.

  I was excited to go back to work. I was thrilled about working for a company with such an excellent reputation—and getting to travel again! The pay was good too: two hundred dollars per day. Yet I didn’t know how my new learning disability would affect my job performance.

  I spent the next couple of weeks in the field with Paula Lang, the woman who I was replacing. I wasn’t required to do anything yet, because I hadn’t gone through the formal training. My job was to watch and learn. I flew to meet her in different cities: New York, Boston, Atlanta. Paula always met me at the airport.

  She showed me what schools she was working with and how she presented the existing IBM software to teachers. On one trip, I got to visit the Bronx.
The kids and teachers were all assembled there. It was really fun.

  I went down to Atlanta with another woman who worked for IBM out of Portland, Oregon. We met Paula in Atlanta, and the three of us rented a car and drove to a kidney dialysis camp about an hour outside of the city.

  The summer camp was exclusively for kids with kidney problems. They had computers everywhere! The IBM consultants showed the kids how to use the computers. IBM was doing a study to see how the use of computers affected kids who were going through kidney dialysis treatment. Normally, kids going through treatment were sick a lot—they suffered from dizziness, vomiting, nausea, and so on. But IBM and the treatment staff were finding that kids who used computers were so happy that they weren’t getting sick as much.

  The kids were involved in a lot of other activities at the camp too: they were swimming and boating, and rehearsing a play to put on for their parents at the end of the week. The parents also watched their kids work on the computers.

  I was very interested in what was going on, but the job was also very taxing. I tried to be easy on myself. But so much information was coming in that I felt as though I was constantly on overload. Why was it so hard? Why wasn’t this coming to me more easily?

  “Just take what you can take,” I kept repeating to myself. I kept reminding myself that I was testing my limits. But how could I know how much I could do unless I really tried?

  I tried not to let my co-workers and clients know how much I was struggling. I was afraid if they knew about the depth of my problem they might not want me.

  I often got lost walking around the camp. One time I was walking from the barracks where I was staying to the warehouse that housed the computers. There were trees everywhere, and I was always paying close attention to them to make sure I didn’t hit one.

  I noticed a group of five or six young boys sitting in the grass alongside the path. They were whistling and they said something to me. I looked over to them, lost my concentration, and—Bam!—I smacked straight into a tree.