We Have Learned to Live With Epilepsy
I awoke to a guttural scream. I jumped out of bed before I realized that it came from my wife, Sandra. She was jerking all over the bed, her eyes were rolled back in her head, and she wasn’t breathing. Her lips turned blue, and a bloody froth came from her mouth. I thought she was dying. I slapped her face, thinking that it would bring her back to consciousness. The spastic movements continued, so I ran to the phone and called our doctor. My wife will explain what happened.
WHEN I awoke that morning, I heard hushed voices, and I wasn’t in my own bed. I just kept my eyes closed, listening. I heard my husband’s voice, as well as my mother’s and the doctor’s. What had happened?
I opened my eyes and noticed their concern. When I tried to sit up, a splitting headache told me that their worry was over me. So began our family’s introduction to epilepsy, or what is today called a seizure disorder. At the time, in 1969, my husband, David, and I were only 23.
Our Life Goals Are Altered
I was reared as one of Jehovah’s Witnesses and started sharing with my parents in the public preaching work when I was five. While watching one of my Bible students get baptized, I set the goal of becoming a missionary. During school vacations, I would pioneer, as we call the full-time ministry. Upon graduating from high school in 1964, I immediately began pioneering.
When I heard David give such good Bible talks and learned that he also wanted a career of special service to Jehovah, you can guess what happened. We married, and together we have enjoyed very good success at helping others to learn Jehovah’s ways.
Can you imagine our excitement when in April 1970 we received invitations to the Watchtower Bible School of Gilead for missionaries? We filled out the applications. In a note attached to mine, I mentioned that although I didn’t feel it was of concern, I had suffered two seizures during the past year. We soon received a kind letter telling us that until I could go three years without a seizure, it would be unwise to send us to a foreign country. Within a few days, I had my third seizure.
Being unable to go to Gilead, we hoped to work at the world headquarters of Jehovah’s Witnesses in New York. We applied later that summer at a meeting conducted by the then president of the Watch Tower Society, Nathan Knorr. During his interview with us, he kindly explained why the work at Bethel would be difficult for me. He explained that I would have to be free of seizures for three years before we could be accepted for Bethel service. However, he took our applications and put them in his pocket. In six weeks we had a special-pioneer assignment to serve in Pennsylvania.
Coping With Epilepsy Difficult
In the beginning the seizures were months apart, but then they became more and more frequent. I have never seen anyone have a grand mal seizure; I know only what one feels like. First there is an aura—a fleeting, disoriented feeling that might be compared to the sensation experienced when speeding by a stand of trees with sunshine flickering through them. This lasts briefly, and then I lose consciousness.
I wake up with a headache; I can think, but the thoughts can’t be spoken—it’s all garbled. I can’t understand speech either. These effects wear off over the next few hours. However, it is disheartening and sometimes embarrassing to wake up in a different place and to be told that I had another convulsion, especially if we have been at a Christian assembly.
If an inexperienced person cares for me or if I am alone while having a seizure, I bite the side of my mouth and often put my teeth through my tongue. It then takes days for my mouth to heal. David has become skilled at taking care of me, so it is much better if he is with me. He knows that he needs to get something into my mouth to protect it. Otherwise I will be sore for days, or worse yet, I could choke.
A safe mouth protector is needed. David discovered early on that small books, such as The Truth That Leads to Eternal Life, are the perfect size and are always readily available. We have quite a collection of small books with my teeth marks across a corner.
What Is the Cause?
Seizures may be symptoms of many health problems. Concerned friends would clip articles about convulsions and how they can be caused by a misaligned spine, by an imbalance of vitamins or minerals, by hormone imbalance or hypoglycemia, even by parasites. I faithfully tried all the remedies offered. I went to many kinds of doctors and had many tests. We only learned that I was unusually healthy, yet the seizures continued.
When I would have another seizure, family and friends would often say: “You should take better care of yourself.” Eventually this hurt my feelings. It made it seem as if I was doing something to cause the seizures; yet I was trying my best to care for my health. Looking back, I realize theirs was a natural reaction. They, like us, were having a difficult time accepting epilepsy. Like the apostle Paul, I had difficulty dealing with my “thorn in the flesh.”—2 Corinthians 12:7-10.
After our first baby was born in 1971, I went off the pioneer list, and we decided that I see a neurologist. The tests were routine. First, I had a brain scan to determine if there was a brain tumor. There was not. Then an electroencephalograph measured my brain waves. To me, there was a comical side to the test.
I was told not to sleep much the night before and not to drink any stimulants. The next day, while I lay on a very flat, uncomfortable bed in a cold room, electrodes were attached to my face, the top of my head, and even my earlobes. Then the technician left the room, turned off the lights, and told me to go to sleep! If I wiggled even slightly, his voice came through a speaker, saying: “Lie still, please.” Even under those conditions, I did sleep! David always teased me, saying I could sleep anywhere, anytime.
The diagnosis arrived. Minimal brain damage was discovered in the front temporal lobe. The most likely cause was either a very difficult birth or a very high fever during the first few months of life. My parents were questioned, which was very painful for them. They said that both of these causes were possibilities. The kind of epilepsy I suffer from, we learned, is not hereditary.
The Fight to Control It
Now began years of what was to me a frightening form of treatment, drug therapy. I had a bad reaction to the first drug tried, and the second simply didn’t work. With the third drug, Mysolene, we had limited success in controlling the seizures. It was a mild sedative, but five tablets a day were needed. Others noticed the effects the drug had on me, but soon I could tolerate it. I wore a bracelet that identified me as an epileptic and that gave the name of the drug.
I went seizure-free long enough to obtain a driver’s license again. Driving privileges were very precious to me, since we then lived in a rural area, and I wanted to begin pioneering again. But just when I was ready to start, in the fall of 1973, we learned that another child was on the way. So I did not pioneer, but instead we decided to move to a small congregation in Appalachian Ohio where families were needed. We settled in a small town of 4,000 where there were then no Jehovah’s Witnesses.
Soon after moving there, I went to a different neurologist. Although I didn’t have convulsions or lose consciousness, I was still having partial seizures that would leave me in a confused state. The doctor added a second drug, phenobarbital, to the one I was taking. Altogether, I was taking nine tablets a day.
The next two years are very painful for me to discuss, and because of the dreadful condition the drugs left me in, I am not too sure that I can describe things adequately. Let me just say that Philippians 4:7 became my favorite scripture. It says: “The peace of God that excels all thought will guard . . . your mental powers.”
The drugs slowed my speech and actions and affected my memory. I also experienced a personality change, being depressed and angry much of the time. David felt under attack, and it was necessary for him to pray so as not to respond in kind to my uncharacteristic behavior. Besides, we had two preschoolers to care for. The Christian elders in our local congregation were encouraging to us when we were at our lowest point.
In the spring of 1978, I decided, against David’s better judgment, to stop the medication. I desperately needed relief. Carefully, I cut back half a tablet every two weeks. It was like waking up. I felt exhilarated. The sky, I was sure, was bluer.
I continued seizure-free, so I started pioneering September 1, 1978. David was so proud of me, and I was elated. Well, sedatives build up in the body, so it takes a while before they leave it. The second week of October, after only six weeks of pioneering, the convulsions returned worse than ever, and only three days apart! After the fifth one, we went to a new neurologist.
“It’s better to be dead than take drugs,” I told him.
“And you will be,” he replied, “if you don’t take them! Then what will happen to your daughters?”
Learning to Live With It
I started on a new drug, Tegretol, that week. It took five tablets of 250 milligrams a day to control the seizures. This drug, however, is different from the others I have taken. It doesn’t build up in the body, nor does it have mind-altering effects.
For a while again, though, I couldn’t drive. And we lived where I was isolated from anyone who could take me in the midweek preaching work. I felt defeated. David encouraged me by saying: “Why not wait until spring to quit pioneering? Don’t make any drastic changes now.”
I was determined to see if Jehovah would bless my efforts if I put him to the test. Lamentations 3:24-30 became precious to me. I had something ‘laid on me,’ and I would “show a waiting attitude.” Also, I began to view the medication differently, as a friend.
Cara was now in school, and Esther was four. So Esther became my pioneer partner. We walked and we walked, plodding through deep snow and enduring the cold. By spring the whole town knew who we were.
At the same time, I took the medication carefully. If I took the pills too closely together, I would experience severe double vision. However, if I forgot even two or three pills, I would have a grand mal seizure. For the first year, I had a blood test every three to six weeks to make sure that the medicine was causing no serious side effects.
It is important for epileptics to keep their daily activities—eating, sleeping, and so forth—on a good schedule, and I was careful to do this. Right through that winter, I kept up my pioneer hours. In time, the seizures were controlled, so that I could drive again, and I’ve been able to continue pioneering until today.
Cara has graduated from high school and is now also pioneering. Ever since that winter when she accompanied me, Esther has had the pioneer spirit. One time at a district convention, the pioneers were asked to stand. When I looked around, there was four-year-old Esther standing on her chair. She considered herself a pioneer too!
I am so thankful still to be serving Jehovah with David and with many others with whom we have studied the Bible. My prayer that David too could begin pioneering again has been answered. He also serves as our circuit’s assembly overseer, as well as a substitute traveling overseer. Our firm conviction is that soon, in God’s righteous new world, Jesus Christ will accomplish on an earth-wide scale the healing of all those afflicted, including epileptics. (Matthew 4:24)—As told by Sandra White.
[Picture on page 15]
With my husband and daughters