Painting the Whole Picture by Joshua Holmes tells the whole story of life with epilepsy.
I was amazed and impressed by Joshua’s family’s efforts to help him overcome his cerebral palsy and epilepsy. This is a book for families. It’s a good model for how to help children by making them do things for themselves instead of enabling. Determination was modeled and encouraged.
Joshua shared his various struggles during grade school, college, careers and living independently. These events were not sugar-coated. He let us see the process of resolving problems.
I admire his tenaciousness and courage. I liked that the book included photos of his family and his art. It made me feel like I know him as a whole person.
This book is another great resource for folks with epilepsy and their families.
Joshua Holmes has written other books. You may want to look him up.
Seizure Mama/Flower Roberts
I have purchased seven more epilepsy books.
I will be sharing my thoughts on each after I read it.
The first is The Sacred Disease; My Life with Epilepsy by Kristin Seaborg, M.D.
I found this to be insightful and helpful.
The memoir follows Kristin’s life from a high fever and seizure as a toddler to adulthood.
I am amazed at her tenaciousness and fortitude.
Kristin finished medical school and gave birth to three children while struggling through trials of many failed medicines and a brain surgery.
She is honest about her feelings and frustrations throughout the whole process.
This book will be helpful to any person going through decades of uncontrolled epilepsy, especially young women of child-bearing age.
I am very grateful to Kristin Seaborg for sharing her story.
I have seen that elephant.
The one that nobody wanted to acknowledge.
The one everyone is now talking about.
I saw it over two decades ago.
In my carport.
I will never forget it.
Its name is SUDEP.
I chased it away by beating on Rose’s back.
I thought she had aspirated vomit.
I threw her four-year-old little body across my knees
and beat on her back. It was a hard beating. I was afraid.
She was blue. She was not breathing. Was she dead?
Her seizure had marched across her whole body.
That seizure parade took over 45 minutes.
The elephant came at the end, instead of Santa or a firetruck.
When I laid her on the floor of my van to start CPR,
a deep breath entered Rose’s chest.
The elephant left us.
That was her first ever non-febrile seizure.
The elephant was Epilepsy’s welcoming committee.
Now everybody knows to look out for it.
A pregnant woman eats for two.
That is important, but not as complicated as remembering for three.
I spent the last four days with my family.
This included my daughter, Rose, and my mother.
We can be called forgetting, forgetful and forgotten.
My mother is 87. She is forgetting the present. Her past is perfect.
I am 52 again. I am very distracted by life. I am forgetful.
Rose has spent most of her life on anti-seizure medications.
Most of those drugs did not stop her seizures, but did stop her memory.
Much of her childhood is forgotten..or remembered incorrectly.
It is hard to be me…remembering for three.
But we have each other right now. We have now.
That is worth remembering.
When Rose was in eighth grade band, the middle school band was invited to join the high school band to play during a football game. Rose sat with all the other trumpet players in the band section of the stadium.
Rose’s father and I sat in the adjacent section where we could keep an eye on her. We were concerned because Rose hated loud noise. We had instructed her to take out her tiny hearing aid while the band played. This hearing aid was red and the size of a kidney bean. It cost thousands of dollars and was not covered by insurance.
At some point during the first half, we noticed a disturbance where Rose was sitting. She was having a seizure. I rushed down to her side. The band director gave the other band members the okay to go take a break. This made it easier for the EMTs to get to us. Rose stayed unconscious for quite some time after the seizure. Her dad went to get the van and drive it up to the back of the stands.
It was about then that I noticed that Rose’s hearing aid was not in her ear. I searched around her. There was no little red bean. I went through her pockets. No bean. The EMTs joined in the search. We made quite a spectacle. Unconscious Rose, her mama, and a bunch of men in uniform scouring the empty stands.
The band members returned from their break. The band leader asked if I minded if they played some music. The music resumed. Rose aroused. A group of men helped haul Rose up the stadium steps to the van. As I followed them up the steps, a woman tapped me on the shoulder and asked “What were ya’ll lookin’ for down there?” She was curious about the lost item, not the unconscious girl. I guess asking about Rose would have been rude.
When we got Rose safely into the backseat of the van, I informed her dad that her tiny hearing aid was missing. I searched her pockets once more. Tucked down in the corner of her jacket pocket was that tiny expensive bean. I was so relieved and happy.
As we drove away from the school, Rose’s dad turned to me and asked, “Other than that, Mrs. Lincoln, how was the play?”
Seizure Mama speaks to parents:
It may be futile to try to keep your child’s seizures a secret. Rose’s condition was known to everyone at church, at school, and out in the community. We never tried to hide her epilepsy. There was no point in it. It went with us wherever we went, whether we liked it or not.
When Rose started to middle school, Mama went, too. There was an eighth grade science teacher opening which I applied for and got. There was a collective sigh of relief from all of our family and friends. The middle school was too far away from our house. I could not get there fast enough if there was an emergency. The route there was all two lane roads. What if there was a tractor, a train, a wreck…?
So Rose’s mama went to middle school. It was a good thing I did. There were sicknesses and seizures that had to be dealt with. The entire staff knew that Rose’s mama was only an intercom call away. I would hear my name followed by “Get to the gym.” or “Go the nurse’s office.” I would take a deep breath and run toward Rose as someone met me in the hallway heading toward my classroom to watch my students during my absence.
Adjacent to my classroom, I had a storage room for science equipment. We kept a fold-out cot with pillows and blankets in it for Rose to sleep off her seizures after being rolled to my room in the closest available rolling chair. It was a comfort to Rose and me that I could peek through my back door and check on her without missing a beat teaching my students.
This is how we handled her emergencies during those years. We were still searching for the perfect combination of medications. She had some learning issues and hearing issues. Then there were several surgeries. Rose needed support. I was the “mama in residence” again, there to make sure she was taken care of.
On a particularly hectic Friday, I was called over the intercom to the band room. There was a band concert. Rose played the trumpet in it. I ran to the band room to find her unconscious on the tiered floor among scattered chairs and music stands.
(Please pause here to envision this setting. A stair step type floor plan, rows of chairs on each level and tall, black, metal music stands everywhere. Lord, could we not have this seizure somewhere else?)
Two other staff members stayed with us in the band room until Rose woke up. Instead of her normally docile self, she woke up swinging. I could tell she did not know where she was. Sometimes she is blind after a seizure. I kept trying to talk calmly to her, but it was as though she did not recognize my voice. I tried not to panic as several music stands were knocked down, which caused more to fall. There was a domino-effect. More crashed to the floor. It took quite a while to get Rose calmed down. The band students were waiting outside the door. They needed to put their instruments back in their cases. It was time for school to let out. They needed to come in and get ready to go home.
Rose’s dad and brother came to help us. I made a call to the our neurologist. Drug 8K dosages would be increased. No one lost her head. The show must go on.
Seizure Mama speaks to parents:
I was very fortunate to get to work at Rose’s school. It got us through those years. They were not easy for any of us. I was a trained high school biology teacher with community college experience. I would not have chosen to teach middle school. I loved my students and my peers, but the stress slowly took its toll on my health. I knew this was not going to end well, but I had to make it through seven years.
The high school was right across the road from the middle school. If I did not get a job there when Rose went to high school, I would just remain the sentry across the street, only a phone call away and a quick drive across the road. The drive over would be followed by a panicked run to a designated location. I could endure seven years in eighth grade to save Rose. I could do that. I thought…
So what does this mean to you? There will be many sacrifices made for your fragile child. Do not let your own health be one of them. I lived through my time in middle school, but damage was done. I am better now, but there were times when I was truly terrified for my own well-being. I am very protective of myself now. I have to survive Rose’s seizures, too. Rose needed me whether she liked it or not. We were tethered together by her epilepsy. If one of us went down, we both went down.
Take care of yourself, too. United we stand.
I just finished reading another epilepsy memoir.
I am amazed my PTSD did not stop me from finishing it.
It was well done and had many funny parts, but it was not useful to me.
This is my fifth memoir of this type. Only one has helped me.
The others have left me depressed and fearful for Rose’s future.
I will not be loaning these books to her.
I do not want our book to do this to our all-ready-traumatized target audience.
Our book is far from a pleasure read.
There is no way to sugar-coat seizures and stay true.
This where you come in.
WE NEED ADVICE.
I want Rose’s book to be helpful, not harmful.
I plan on asking her to add a section to stories below the
“Seizure Mama speaks to parents” called “Rose speaks to patients”
Do you think that hearing Rose’s voice after some later stories will take some of the sting out?
We want this book to help people. First Do No Harm!