Sunday, September 18, 2011

Seizure Five Years Later

Three days ago, Jan went to an interview with a special education program to explore volunteering. She had been excited about this opportunity for quite a while. She arrived at the school office exactly at the time when the students change classrooms. The hallways suddenly filled with loud voices and young people moving fast from one room to another. Later she told me that she felt nervous by all this commotion, unsure about being surrounded by so many youngsters all of a sudden. For over twenty years she stood in the middle of the students feeling their energy, and thriving in the knowledge that she had not only authority over them, but also a deep caring for their learning. This time, however, the feeling was different: uncertainty, insecurity because she is unable to express her mind on command, overwhelmed with the noise and unable to cope with so much input (voices, people, movement) all at once. She went into the office where she had her appointment -about 20 meters from the entrance door-, she talked for a short while with the person she was meeting and then a seizure set in. She has am aura of 5 to 10 seconds when she has a seizure. This gives her enough time to find a safe place on the floor where she can lay down. then the Grand Mal (tonic-clonic) seizure starts. She will have convulsions for about 40 seconds. After the convulsions are over, she lays unconscious for 15 to 30 minutes and starts coming back to over the next hour or so. We had an appointment at 1PM that day. We were going to drive to a nearby city to see a neurologist. Her previous neurologist retired three years back and since then, she had been treated only by her family doctor, to whom she had only access three or four times a year. All of her other medical needs have been treated in walk-in clinics or hospital emergency departments who don;t have the in-depth knowledge of her case or her aneurysm. She was ready for this appointment. She had great expectations to re-start a relationship with a specialist that could help her find new paths to improve her condition. When I got home, I found several messages, one from the office where she had the seizure, another from the emergency receptionist, and a third from a friend whom Jan had named as a primary contact in case of emergency. All of them informing me that she had a seizure and was sent by ambulance to the hospital. What a sucker punch!, I thought. A very familiar feeling of dread filled my nostrils, I let the anger bubble and come out. I found myself saying in aloud voice: When is are we going to have a break? Isn't it enough to struggle day to day with all of Jan's limitations? I was very aware of the consequences for me of every seizure event, the extra time and care required, the struggle with the feelings of impotence and incompetence, the search for an extra dosage of patience to become Jan's hands and feet and words when she does not have access to them. I don't know the border line between disappointment and depression, but I found myself questioning whether I had enough faith to ask and receive the miracle of Jan's health, of wondering where were all the friends and family when we needed them most, of wondering why this happened to us? why, why why? I had to do something about all these feelings. I knew better not to bring them boiling with me to the hospital. Jan was the one in need more than me. So, I let them come out for a few minutes in shouts and tears. When I felt calmer, I drank a glass of cold water and set off to find Jan. I arrived at the hospital about three hours after she had the seizure. I found her sleeping in a hospital gown in one of those little bays with a curtain. All her neighbors looked in bad shape as well as their visitors. Most of them seniors. Jan woke up when I pulled a chair next to her bed. A expression of disappointment mixed with fatigue covered her face. Slowly, she told me sketchy information about how she was feeling. I tried to be reassuring, although I always feel inadequate to soothe either her disappointment or her pain. At first, she could not remember where she was when the seizure happened. She complained of a headache. Eventually, a nurse showed up with equipment to take an ECG and some samples of blood. I gathered through the grimace on Jan's face, that the blood sampling was painful, this on top of the headache she already had. We asked the nurse for some painkillers, but she said that only her nurse could give her some pills to block the pain. To Jan's relief, he pills came a short time later. The nurse at the hospital had told her that her seizure lasted three to four minutes. She thought this was unusual since most other events lasted less than a minute.This upset her because she was feeling also extremely fatigued. About an hour later, her memory started functioning and she could remember where she was and what she was doing when the seizure took place. She even remember that she had parked her bike in front of the school, among the student's bikes. I went on a hunt for her bike, without success, luckily a friend had taken her bike in her van and dropped it later at the house. A few hours later, the emergency doctor came to see Jan. The results from the ECG were negative, so he suggested to keep Jan under observation for a few more hours. Jan, of course objected, arguing that she would be better at home. I told the doctor that we had to reschedule an appointment with the specialist because of the seizure, and that we hoped he would have more answers. He agreed with us and promised to send the info to the family doctor. We went home and Jan went to sleep early. This was a familiar scene from many other events. I could not sleep for a while, thinking about the meaning of this seizure and all of its implications. I was ready to quit my role of a caregiver. At the same time I was reminded of my pledge to love my friend and wife, especially when she needed me the most. Yeah, if God abandoned me when I needed his presence the most, probably I would not be around. I told God that I really did not know how this suffering business worked, but that I trusted that he knew why and would be gracious to us. I honestly could not feel thankful, my grief was painted with disappointment. Slowly, my eyes closed and I fell into an uneasy sleep full of strange dreams. Jan and I had have a seizure and the road was going to be uphill in the next few days... FC