I have been reading another insightful memoir written by a person with epilepsy.
Each one I read brings back memories of our struggles.
Each also reminds me that this is not over for us.
Epilepsy rarely vanishes.
It does, however, hide for long periods.
Rose does not want to know this.
Neither do I.
So we are living like it is gone while we can.
But when it returns,
we will need you.
It will be hard trying to fit our big lives
back into the confined space of seizures.
While she was home for fall break, she dropped her shampoo in the shower.
It was her habit to say something to let me know she was okay.
She did not say anything. I made myself stay in my bed and listen.
Fear is never far away.
We will need you.
(I almost entitled this “She Will Need You”)
We are still tethered together.
Mother and daughter.
Epilepsy and fear.
Story #22 (Most of 2002)
The drug roulette regimen made everything worse. Rose was not herself before a seizure nor after a seizure. She was lethargic, floppy, and dopey. She moved from her bed, to a chair, to another chair, and back to her bed. The seizures came with us wherever we went. She seized in restaurants, at birthday parties, at Brownies, in the yard, watching television, in a big box store while shopping for a helmet, at a family reunion, in a funeral home and even in swimming pools.
We took a plastic Adirondak chair with us on outings. The chair reclined slightly, so she could seize in it without falling out. For us every party was BYOC(bring your own chair), and of course the seizure bag went with us everywhere. We evaluated the risks of each outing. Should we go eat at this restaurant? No, it would be too hard to carry her out through the gift shop. She we go to a ballgame? No, seizures in bleachers are too dangerous. Should we go? No. Eventually, we stayed home waiting for the next seizure. I really wanted to buy a little wheelchair, so we could go places, but was advised against it by other family members. “Rose would look handicapped and feel handicapped.” Yes, but she would be safe.
We walked everywhere linked arm in arm with her. A fall could come at any second. We went up and down our stairs as a unit so she would not fall. We called this method ‘stair pairs.’ To go down Rose would put her left hand on the person in front’s shoulder and her right hand on the handrail. The front person would put their left hand on hers and also hold the rail with their right hand. Going up would be reversed with her escort behind her. Rose would announce when she wanted to go up or down and someone would stop what they were doing and escort her. We made it a point to not say no to her requests to use the stairs. There was so much she could not do at this point; at least she could be free to move about in her own house.
When no one was in a room with Rose, her father, brother or I would whistle two notes and she knew to echo the two notes back. We whistled instead of calling her name so she knew we were just checking on her instead of needing her to come to us. We whistled to her about every three minutes. It got to be so much of a habit that I would catch myself whistling notes when Rose was not with me. She slept with me during these terrible months. Sometimes she would whistle in her sleep.
We referred to this technique as “echo whistling.” If she did not repeat our two notes we would call her name. If she did not answer, we would rush to find her. Sometimes she was just too busy to answer, but a few times we would find her unconscious, leaving me feeling feel guilty about leaving her alone. Negligent for three minutes. Shame on Seizure Mama!
Take a chair, echo whistling, stair pairs. This is how we kept her safe as the seizures took over our lives.
Seizure Mama speaks to parents:
You need to devise methods like ‘echo whistling’ and ‘stair pairs’ as part of your everyday routine to keep your child safe. We used two notes for ‘echo whistling’ because Rose had complex partial epilepsy and could do repetitive automations, even at the onset of a seizure. She could probably whistle during these periods, but could not echo the two notes from someone else.
I had just returned from a trip when Rose called to report her sickness.
I left my suitcases packed. I left my phone on all night. I did not sleep.
I was back in Mama Mode.
I was ready to jump in my car and speed to the rescue.
Rose assured me she would be fine. She just wanted advice.
I wanted her to call 911 if she vomited. Imagine that. Ridiculous!
She texted the next morning that she “woke up perfect.”
I got to unpack my suitcases and take a nap.
I keep my helicopter gassed up and ready to hover.
I will be putting this book on Rose’s desk for her to read while she is home.
Speedbumps: Living with Epilepsy by Jonathan B. Dodson is his voice telling his story.
The book chronicles his life from his first “speedbumps” and seizures to being an adult.
The book is easy to read and divided nicely.
It does not get bogged down in medical details or side-stories.
His tale is streamlined well so that young readers can read it over a weekend.
This would be a great resource to put in the hands of teens struggling with epilepsy.
I appreciate Jonathan and his family for putting together such a useful book.
Seizure Mama/ Flower Roberts
Story # 20:
Things fell apart. Drug 4L had been added to drug 3S after the seizures during the holidays. At first drug 4L made Rose mean. Getting her schoolwork done was a battle. Either she would not or could not concentrate. Were these changes due to the new drug, the new homebound situation, or the seizures? Her ear infections continued, so antibiotics were frequently in the mix.
We kept records of all her drug dosages and combinations, along with seizure descriptions on a chart. We couldn’t keep all of it straight unless we wrote it down. The months were a blur of seizures, side effects and sickness. I read books about epilepsy and researched epilepsy drugs and treatments. It was all so confusing. How could we help our Rose if we did not understand this disorder and the effects of its medications? I felt helpless and hopeless. Rose was changing as her drugs changed.
Appointments with the neurologist became very frustrating. The partner of the practice had left, so our doctor was handling a double load of patients. We used to feel like there was a set plan for Rose’s treatment; now it seemed like one long experiment. The doses for drug 4L kept increasing and we saw nothing but side effects. Her seizures became longer and stronger. We must have missed the window of effectiveness for drug 4L. Finally it was dropped and drug 5Z was added to her doses of 3S. Experimenting with the wrong drugs and dosages went on for months. Every few days, Rose would have a long, strong seizure. She would spend a day or two recovering before another seizure knocked her back down. I did not leave her anymore. I was too scared.
Sometimes on the weekends when Rose’s dad was home, Rose’s brother would ride the trails through the woods around our house. I would go with him carrying my camera and a walkie talkie. If a seizure occurred, her dad could call me to come back. I would hike through the woods and allow myself to cry. This was the only time I would leave the house. I walked the paths in our woods relieved to be out of our sad house where the walls kept closing in.
I never let Rose see me cry. We did not want her to see us saddened or scared. We were losing her. Her essence was disappearing. She was a groggy, foggy, tired mess. The drugs were not helping anything. The seizures were wearing her down and the drugs were ruining the time in between them.
Seizure Mama speaks to parents:
I am ashamed to look at the records from these terrible months. Why did we not get a second opinion sooner? Why did we not demand to go to an EMU? The awful reason was that we thought going to the EMU was a big step toward surgery. I had read about the different surgeries that were used to stop seizures. I wanted to give every drug a full chance to work. When I look back at her charts of medication combinations now, I am horrified.
Drug changes were being made frequently and almost in a random fashion. I think the neurologist was on overload and was pushed to try things because of my constant calls and letters. She was seemingly experimenting with various possible remedies.
It took the terrible scare of Rose going toxic for us to decide that enough was enough and seek a second opinion from a different neurologist in a different city. That was a turning point for us. Don’t wait that long.
I was involved in all the activities Rose was involved in. Rose went to Sunday School, so I taught a different Sunday School class and was part of the Christian Education Committee. Rose went to Bible School,so I was in charge of the crafts. Rose went to elementary school, so I volunteered as a Rainbow Reader and PTO grade coordinator. When Rose joined the Brownies, I became an assistant leader. We were tethered together by the epilepsy. We kept going because she kept going.
When the seizures started coming frequently Rose quit going, but was left with these responsibilities. I wanted to stay home with Rose, but I had to attend each organization’s meetings and events. I had to go on without her. I tried to keep up with my various leadership and supporting positions. It meant my going everywhere alone. I went to School with no student. I went to Brownies with no Brownie. I went to church with no little churchgoer Rose.
The absurdity of this became all too apparent when I had to step over my unconscious daughter to go to a Brownie meeting. I had arranged for my friend,a dental hygienist, to come to teach lessons on dental care at this particular meeting. I felt obligated to attend. The girls were to earn Dental Care badges. I went to Brownies to be with the daughters of other mothers while my daughter stayed home with her dad.
Rose arrived at the meeting later all crumpled and squinting, determined to get her Dental Care badge and eat her snack. It seemed ridiculous for her to be here among all this noise and activity while looking like she needed to crawl in a hole and hibernate. This event was the beginning of my shedding some “mama obligations” in the community.
It was hard to pass these torches to other mothers. Most of them worked. I had all ready shut down my garden art business again when the seizures started back. I could not find people willing or able to replace me on my various committees and in my volunteer positions. No one stepped up to take over my jobs. It was me or no one. When the seizures were at their worst, all the other things did not matter anymore.I had to drop some balls and leave some teams. I was just a mama, and falling short at that.
Seizure Mama speaks to parents:
Remember why you do what you do as a parent. If the activity is not important to your child, give it up. Signing up for many extra activities will only frustrate you both. Do only what you both enjoy together. Let your child choose. It’s their childhood.