Monday, November 27, 2017

Back at It

I haven't posted a blog since August. I didn't realize it had been so long until just a few minutes ago when I saw my previous post. I can't say exactly why I've been absent for several months,but I suspect there are a number of reasons. Among them, I am far too preoccupied with the state of our nation and the polluted, pathetic, politics of the day.

Then--- there's the matter of Michael returning to classes at Cal State San Marcos for which I am enormously thankful. The beginning of the semester was a bit stressful. Michael hadn't done any reading or writing for three semesters prior to his return thanks to the chaos of seizures,emergencies and hospital stays starting with the bloodied bathroom incident of November 2015 (I'll spare you the picture Dyan) and mercifully, and for reasons unknown, drawing to a close this past February. He is doing well in two complex anthropology classes and is enjoying the learning process. That's all good and it doesn't seem it would impair my ability to string a few thoughts together and put them in writing.

So---here it is- just days from December 1st. November is designated as Epilepsy Awareness Month. Generally, I'd post a few blogs and hope I'd make a difference by reaching someone, somewhere who may not be aware of how devastating and life-altering epilepsy can be both to the individual who has it and the family that cares for and loves them. BUT I have been doing a lot of soul-searching and I am questioning how effective these awareness campaigns (in general, and my own efforts) are. Most of the people reading this blog either know our situation well because they are close friends and family OR they are members of the epilepsy community OR they have read my book (more later on a small awareness breakthrough related to that). So- who am I making aware? Does it help other's with epilepsy in any way?

But then---there IS that small awareness breakthrough I mentioned. I was chatting with one of my FitTAP classmates before class began last week. She asked about Michael and mentioned she has a dear friend whose young granddaughter was recently diagnosed with epilepsy. She said her friend could barely talk about it without crying and that it had turned the family's life upside down as no medication regimen has proven effective, the child is seizing at school and when playing with friends, and her older sibling is rebelling and resentful. When we continued our conversation after class, my classmate said: " I've told my friend of course you can take care of a seizure if it happens on your watch. It's not as if she's going to die". Hmmmm. Yes-Margie was shocked to learn that indeed her friend's granddaughter Could. Die. From a seizure. I told her follow me to my car---I'd get her something and she could decide how to use it.

I retrieved Missing Michael from my car. I gave it to Margie and suggested she read it and determine whether her friend might feel a little less alone and frightened if she read about our journey and saw that we were intact and strong as a family unit, 28 years after Michael's initial diagnosis. As I reflect upon it, I think there's a lot of hope in the pages of that slim book---hope for the future, hope for a treatment that balances seizure control and quality of life, hope that when people become more aware , there will be greater understanding, less bullying at school, less discrimination in the workplace and a great deal more research. That was what I hoped to accomplish in some small measure through my own efforts at increasing awareness. And, I thought,  if I help just one person feel less alone, it'd be worth baring my family's soul in the book and the subsequent blogs. Over the years, I have heard from quite a number of people that they have felt less isolated and alone after reading about our journey. In and of itself, that's reason enough to keep writing---and keep hoping. those whose lives and loved one's lives are touched by epilepsy/seizures and to those who think they don't know anyone with it (1 in 26 people will have a seizure in their lifetime)---here's to Epilepsy Awareness Month. Hopefully, it WILL make a difference.


  1. You are making a difference. Your book was one of the few books out there on epilepsy when I went looking for one. Having books about the experience of epilepsy is very important. Thank you for writing. Please keep writing. There are those of us who are reading. Thanks!

  2. Thanks for the entry, MaryLou! It's always worth the read here, my friend!

  3. You’re an important voice, Mary Lou — in whatever way you use it — as a literal veteran of the Epilepsy world. Thank you.

  4. Wonderful piece friend. I too have been wondering why I should rally to write about the same old same old this month. But you landed on the nut I needed - so we don’t feel alone in this shitty mess. And I have been so blessed to know that because of your friendship and wisdom. #inthistogether

  5. There are those of us who are reading. Thanks!

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