Excuses vs Reasons

Excuses come with glancing eyes,

to prove an action right

but have an air of flimsiness

quite ready to take flight.

Excuses: breathy strings of chatter and talk. Explanations cloaked in shame or guilt; close inspection sees through the muddy silt.

Reasons are built on logic.

Making sense of things is key.

They rest on facts both cut and dried,

solid meaning their decree.

So live inside your limits

but respect them all the same.

Epilepsy ~ a convenient excuse,

but reason plays the game.

“Hold yourself responsible for a higher standard than 

anyone else expects of you. Never excuse yourself.”

~ Henry Ward Beecher

Author's note: Edited July 25, 2024

Under the Surface

I have, once more, dipped my toe into the vast and uncharted pool of published online research articles about epilepsy, this time with a more focussed eye. I thought, perhaps naively, that this would provide me with a simple answer to the question:  Is epilepsy inherited or familial?

The answer to that question itself seems to be, well, questionable or maybe just difficult to wrap my head around. As to the genetics of epilepsy, the numbers and types of genes involved seem innumerable. Under the surface, there are incredible discussions about pathophysiology, ion channels, and words too long for me to remember and spell in the short time I have to write this.

So often I have heard that there is ‘not enough’ research for some particular question that someone would like answered, or maybe just explored. However, what is being researched is a disease as old as humankind, in an organ that cannot be seen except with technology or after death, and in the neurons and synapses of that organ spread like a webbing far more vast and in depth than the world wide web.

It leads me back to where my feet are, sitting here tapping on my keyboard. I do not  need to know how epilepsy works or why epilepsy is part of my brain. What any person living with epilepsy, including family and community, needs to know is how to live with the form of epilepsy that is present. To be able to practice healthy living, there is need for humility, kindness, respect and fair dose of courage. When those things are not there, then learning to let go of those that cannot offer any support is paramount to developing a healthy pathway in life.

“God grant me the serenity 

to accept the things I cannot change,

the courage to change the things I can, 

and the wisdom to know the difference.”

~ Reinhold Niebuhr

Author's note:  Edited July 25, 2024; updated August 19, 2024

The Fit of the Shoe

Walking a mile in another person’s shoes is a lovely aphorism for empathy. In this world of complexity and details,  technology, religious dogma and secularism, it is not that easy to figure out what kind of shoes each of us wears. Only that each of us has shoes - or not!

After listening to the various stories about the epilepsy of others, and the families that support them, deciding to pay attention to the fit of my own shoes seems more important. Then whether I have a mile or only a step to walk, I can be as successful as possible and better able to share what I have learned to anyone who may wish to ask.

This doesn’t mean that all of those ‘others’ are ignored, but that the decisions they may make and the actions that they take be respected. The ‘shoes’ they wear will be of different sizes and have a different fit than mine.

“One must know oneself.  If this does not serve to discover truth, it at least serves as a rule of life, and there is nothing better.”

~ Blaise Pascal

Inspiration over the Air Waves

He had 20% of his brain removed. The attempt to stop his seizures was only marginally successful as he still has one grand Mal seizure every day. That's all I remember from the story on CBC this morning. Just now, I scrolled briefly through the CBC website to see if I could find it without success.

It was a dad being interviewed. He spoke of systemic difficulties getting his child the right care and his surprise at the complexity of the disease of epilepsy. His child attends a special school that supports him with his condition while he learns. When I heard about the extensive brain surgery I was sure that school would be an impossibility for him.

I had not turned the radio on at the beginning of the story, and was driving on my way to meet with my walking group. My mind goes to budgets, political will, attitudes...... It all overwhelms me and seems impossible: that young boy's parents are living the only solutions accessible to them and never giving up on their son.

Once more I am grateful for my great, good fortune.

“People who imagine and implement solutions to 

challenges in their own lives, in their communities, 

in our country and in our world have always inspired me.”

~ Chelsea Clinton

A Letter to My Brother

Dear Doug,

How are you? That seems a silly question to someone who has been gone for so long. However, that’s how I learned to start a letter and I haven’t found a better opening line.

I’ve been thinking about you the last few days. This month I dedicate my writing to Epilepsy. There’s an Epilepsy Awareness day annually on March 26. I’ve been writing for several years now and each day in March, I write a blog entry. I don’t suppose you know about the electronic world of email and blogging, having left us in 1992 before the world of computers was fully engaged. I’ll just say that many things have changed in the communication world.

I have few memories of you, and the earliest remaining one is not the best. You may not even remember it. It was the day you had your first seizure one Christmas morning when you were sixteen and I was about ten. They call them ‘tonic/clonic’ seizures now. It’s more clinically accurate apparently. Few other memories have survived over the years. Mom spending time with you at the dining room table helping you with your French. Arguments with dad that were a bit loud. And stories from school about misadventures that you experienced, that today would be called being bullied.

So we didn’t know each other very well then. I was just one more sister. We knew each other more as adults when my kids, your nephews, were in their early adolescence. By that time, I also had had epilepsy for about ten years. 

We would visit either in my kitchen, or the back yard in the summer. In the winter it was in a coffee shop or in the cab of your old green truck. You were the first one that I could really talk to about epilepsy. I did get all nurse-y on you about how and when to take your pills, and was most shocked to learn that you didn’t even know the names of your pills. After thirty-five years, you still just didn’t seem to get it. I tried to tell you at the time even though I was still figuring it out for myself.

You came from a generation that didn’t talk much about health conditions. You just went to the doctor when there were problems. What I did learn from you, was what not to do. So thank you for the talks that we did have about life, whether epilepsy was involved or not. 

The rest of the family is all doing well. Your sisters and brothers have given you lots of talented nieces and nephews, and several grand nephews and nieces, the youngest grand nephew not even a month old.  

It was nice talking with you again. 

Love,

Susan

“The difficulty lies not so much in developing 

new ideas as in escaping from old ones.”    

~ John Maynard Keyes

Author's note: edited July 25, 2024