August 20, 2008

Writing: What Are We Trying To Say?

Over the years, I have been fascinated by the numbers of persons with E. who write. Historically, many of my favorite authors were persons with E... But, I wonder what we are all trying to say?

Could it be that we are attempting to work out our feelings of isolation through the stuff we put to paper? Are we trying to work up the courage to self-identify as epileptics to a broader world?

I don't know for sure. But I suspect that for many of us, each of these are possibilities. Then too there is the notion that we may be trying to convince ourselves and others of our intelligence. After all, there are many folks out there who believe E. has to do with a lowered I.Q.---being capable of putting our thoughts down on paper is both comforting and proof that we are intelligent individuals, certainly.

Some of us migrate from writing at home to writing at some school. Many of us find an outlet and a reader or two among the nest of academics we make ourselves comfortable among. The experience of having someone besides the immediate family read something you have written can be a heady one because you feel you are receiving something valuable from their reactions. It can be enough to encourage your continued efforts at writing.

I know it has helped me tune up my prose.

It has also allowed me to become less fearful of writing on this subject of E...  In fact, one of the strangest and best encounters I could have experienced happened at school. I nominated an individual for an appreciation award as an Outstanding Person, and she won one of the awards. I had to get up and make a small speech about her relationship to me and why she was outstanding.

At the end of the evening, a young woman came up to me and explained she was the mother of a child with E. and that she was happy I had spoken of my own E. because, she said, she now had a better idea what her own daughter could achieve. 

Can you imagine that! Someone called me a roll model!!!

I am still on Cloud 9 when I think back on it...

 I think achievement is important to us as a community. I think education is one way of reaching out. Sometimes, when we write about our conditions, our experiences with E., it bridges gaps and makes us feel more comfortable with ourselves and others.

The best thing I have taken away from my college experiences have been a renewed sense of socialization: a feeling that I do belong among others, that I am as talented as they are, that I am as worthy as they are.

It's a feeling like no other because it affords me a strong sense of empowerment. 


Serene Low said...

Hi Mrs Paula,

Great to be able to meet you on cloud nine. You are not just a role model but also an inspiring and motivating person. Your writings have nudged me comfortably to also start writing on my own. We are writing because there is a need to. We write to advocate and empower so as to demystify social myths and misconceptions of people with epilepsy.

People with epilepsy (PWE) have over thousands of years being seen and regarded by society in general as abnormal people in every sense. You and I together with many others are writing to eradicate, change and leave positive impacts on society.

Historically and presently a great lot of us are outstanding in our own ways that God acknowledges. That is why God made all of us so unique and special. God said the least you have done unto others, you have done unto me.

We are epilepsy stewards in God's eyes. Writing, talking and sharing about epilepsy is God's mission for us.

From the depth of my heart I thank you very much for linking my blog to yours and also for the motivating comment you have written in my blog.

I will be linking your blog to mine also. If you like please feel free to email me at

Have a pleasant week and wishing you well always. Continue to write and keep up the good work.

Warm regards,
Serene Low

Rob Sorrin said...

Hi Mrs. Paula,

I agree with you. I have epilepsy and I am at a university in Wisconsin studying for an undergrad degree in Hebrew Studies and I hope to go on to a masters in the same program. I think I have always doubted my intelligence. I've had epilepsy since I was 15. I'm now 50. I don't know about the writing thing because I don't do much of that. But, attending a university helps me understand that I am as worthy, intellectually, as anyone else.

By the way I love your blog!

Rob Sorrin

Anonymous said...

I've written 13 books, a bunch of magazine articles and at one time I wrote sports stories for a couple of newspapers. I play and write music and always assumed a connection between TLE and some sort of creativity....

Mike MacDonald

Brian Refford said...

I understand completely about what has been said about the apparent relationship between TLE and creativity. I myself have an earned PhD, a book and several other shorter publications. However, as a person with TLE, it has often been very difficult to express my creative impulses. I have experienced frequent "fuzzy" periods when I could neither speak or think clearly. In my case, threads of thought and creativity disappear with each seizure, and I have to reconstruct the tattered scraps of lost ideas.

Anonymous said...

I am writing this email because I can't get connected up with that Google Thing! You are writing because God has chosen you as an avenue to write as you do to enlighten others and be of a help and comfort to them. I truly believe this Paula that God has his hand upon your life and has empowered you to be able to write as you do to release the tension and the anguish that you've had pent up deep inside you for many years! You don't know of the blessing it is to me to read what you've written, and it stirs me deep inside my inner heart and soul to want to carry on as best I can, and when I read the comments of different ones I can feel the Holy Spirit of God working in my innermost being to stir up the lethargy and the pity feelings I have inside me for myself!! It makes me want to do things in a more positive way, the way I should be doing them, instead of feeling sorry for myself. I'm no dummy Paula and you didn't say or imply that I was, but this is why you write the things you do I believe, because it is your calling from God. I'll leave you with a word, the title of a hymn Brighten the Corner Where You are, Brighten the corner Where you are as someone comes along and see's the Sunshine you've spread, by what you've written, By Brightening the corner Where you Are!!!

cripchick said...