Category: Books written by people with epilepsy

Book for EMU Prep

If your child is going to spend some time in an Epilepsy Monitoring Unit, you might use this book to prepare them for their stay.

All the wires, monitors and other equipment might be a little scary.

This book was written by a young man who wanted to share his lessons learned in an EMU to help others get through this testing experience.

All Eyes on Me by L. Brandon Magoni is clearly written and includes photographs.

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I think this book would be useful to keep on hand at neurologists offices and epilepsy centers.

Good job here Brandon Magoni.

 

What Next?

I am a bit antsy.

It reminds me of how I used to feel when the school year ended.

I am glad to be done with publishing our book, but now what?

I have no reason to stay home and stand by.

These past years have been lonely, but busy.

Now it is just lonely…and winter.

I will reinvent myself again. That is nothing new.

I need to be useful, or at least feel useful.

Now what?

Rose’s Mama

 

 

Female Fights for an Accurate Diagnosis

I appreciated this honest memoir Brain Storms: An Electrifying Journey by Kate Recore.

She did a great job of conveying her years of struggling with epilepsy.

Unfortunately she also had struggles with bad doctors also.

She was misdiagnosed by a male neurologist who diagnoses her issues as mental and emotional NOT physical.

He was forced to change this opinion after a second EEG confirmed seizures.

Insurance HMO’s did not help in Kate’s quest for help.

I got the sense of her maturing as the book chronicles her young adult years of trying to become independent.

She fells that sharing her story will help other young women dealing with sexist or paternalistic physicians.

I am super proud of Katie Scarlett Taylor for blazing a trail for young ladies like my Rose.

Thank you Kate Recore!

 

 

An Inspiring Memoir

If you feel your epilepsy is holding you back, you may need a dose of Jon Sadler.

I was amazed by his tenacious nature over and over again.

He became an engineer and then earned a masters in counseling.

He sailed boats alone and hiked the Grand Canyon.

He was a scout leader for his sons’ troop.

He kept going through seizures and surgery.

This book will be a confidence booster for any adult with epilepsy.

Jon Sadler shares his amazing history in Sailing Through the Storms of Seizures.

His “no excuses” attitude is catching.IMG_0032

 

We Will Need You

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.

Oh, yes!

We will need you.

(I almost entitled this “She Will Need You”)

We are still tethered together.

Mother and daughter.

Epilepsy and fear.

 

An Epilepsy Memoir

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

A Great Book for Young Folks

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.

BRAVO!

Seizure Mama/ Flower Roberts

Not Really an Epilepsy Book

I had a hard time finishing this book, but I am glad that I did.

The Spiral Staircase: My Climb out of Darkness by Karen Armstrong is a very detailed memoir of a former nun who struggled with symptoms of epilepsy for years before being properly diagnosed.

This book starts with her nun years ending in a breakdown and her academic years ending with a failed doctoral project. Both these events seemed unfortunate at the time but were instrumental in her development as a person and writer.

The book plodded through her years as a stifled teacher. This is when I wanted to quit. (Former teacher; too close to home)

Karen was finally diagnosed with epilepsy after years of therapy with a man who was determined that her symptoms were caused by childhood trauma. I was relieved when she finally got her diagnosis and treatment.

If you are struggling with epilepsy, this may not be the book for you. If you are struggling with religion, look up Karen Armstrong. She went on to write many books on various religions which I hope to read.

I found the book enlightening at a time when I have been struggling with my own faith.

I appreciate the author’s efforts to understand all types of religions and bring clarity to readers trying to understand the bases for their faith and the faith of others.

Flower Roberts

The Long Haul

I have been reading books about publishing books.

Sometimes I want to throw up my hands and run back to my garden.

More time and effort is needed than I want to invest.

But this is not a vanity memoir.

This is not just Rose’s story.

It is the story of our family navigating the epilepsy journey together

and coming out the other side whole.

I know folks that need our stories which mirror their own.

I will keep struggling to maintain a balance between our present and our past.

We know there is someone out there that needs us.

We will hold fast for the long haul

and stay the course.

So our stories will keep coming.

Slowly but surely.

Seizure Mama/Flower Roberts

Remembering for Three

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.

Flower

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