Monday, March 26, 2018

Archival Footage on Epilepsy Day

I found this in a shoebox of old letters at the back of my closet. I've always carried around a tiny notebook in which to jot observations, things seen that I might later write around. This one only had a few pages of scratchings -- the first dated March 25th, ironically, one day before Epilepsy Day (which I imagine wasn't a thing back then) and a few weeks after Sophie was born. It had that sort of innocence to it.


The next page had this scrap:

I think I've told you before that I didn't write much of anything for many years after Sophie's diagnosis in June of 1995. An old writer friend of mine who developed Hodgkins disease in his early twenties once told me that he found it impossible to write anything during his treatment, yet I know countless people who've written quite brilliantly through whatever tribulations they've undergone. Write through it some people say, but I couldn't do that back then. I think it's because I'm good at punishing myself.

I can hardly remember what it felt like to be the me of those early pages of the little notebook. By the time the summer rolled in, we were in the thick of it.

There's no date on that list of questions I posed to Dr. Solomon, but she was Sophie's first neurologist, and prednisone was what we used when They (it's always They) ran out -- yes -- ran out of ACTH, the steroid gel we were injecting into Sophie. It must have been the middle of the summer of 1995, about two months after her diagnosis. As I remember it, ACTH was only used for six or so weeks because the side effects are brutal. Sophie's face blew up, and her eyes were slits, her mouth covered in thrush. It wasn't helping the seizures, either. The latter part of the treatment was a weaning period. That's when there was no ACTH to be had (what the hell, right?), so They (it's always They) put Sophie on prednisone. The weaning process gave Sophie pseudo tumor cerebrii, a rare side effect.  I noticed Sophie's fontanel bulging one day, not just when she screamed, which she did most of the day while on ACTH and prednisone, but even when she passed out. They (it's always they) relieved the fluid pressure by giving her a series of spinal taps. Sophie was barely five months old. I turned 32 a month later.

I'm not sure how I got through those days, but I did, because here we are, right? Back then, I took notes in the little notebook and took it to her pediatrician.

Guess what? I haven't looked at this little notebook in more than twenty years, but I remember every single thing in my tiny little mother mind.™ It's as if my writer mind was compiling detail even as my writing was reduced to lists and questions.

Busy. Busy. Busy.

It's March 26th, 2018. It's officially Epilepsy Day or Purple Day.

I'm obligated to educate you about epilepsy. I got a message from a good friend whose young adult son has severe epilepsy. She is helping someone in the Epilepsy Community find a good neurologist for her child who, they believe, has infantile spasms, the same syndrome that Sophie was diagnosed with back in 1995. If I told you that the treatment for infantile spasms is much the same twenty-three years later with the exception of a couple of new drugs and the "advancement" of brain surgical technqiues, what would you think?

  • Epilepsy affects more than 1% of the population. 
  • 1 in 26 persons will develop epilepsy at some point in their lifetime. 
  • More than 30% of persons diagnosed with epilepsy will struggle with seizure control. 
  • 1 in 1000 adults and 1 in 4500 children will die from SUDEP (Sudden Unexplained Death in Epilepsy Patients) a year. This is the leading cause of death in patients with uncontrolled epilepsy.


  1. All I can think of is Madonna and Child.
    Over and over.
    From the time you needed to ask "how much formula?"
    And real answers. Not from Them.

  2. This is achingly beautiful writing from the innocence of observing trees to later and I just drank a shot of bourbon after reading. Joanne

  3. Feels like a crap shoot doesn't it?

    Hope you are both well.

  4. Innocence lost, there is a profound sadness to that... writing of trees one moment and coping with the brutality of the Issues of Life concerning a profoundly sick child the next. The Treatments you describe always make me choke up, what you and your Family have endured bring the tears. It is as if extreme Caregiving and grim diagnosis puts one out of one lifetime and into another more surreal and definitely difficult one. I'm glad you returned to
    writing in spite of that transition from one life to another more challenging one. My life prior to extreme Caregiving was such a Lifetime ago that I barely recall what the previous Life was like and what I quit doing and just never resumed or simply couldn't. Virtual Hugs.

  5. This is a stunning post. A blade through the heart, your heart. I am trying to fathom it and know how short I fall. Also, in that last picture you look like a Renaissance painting. And you have always been a poet, even in your lists.

  6. We learn about epilepsy and love from your time of innocence and your experiences since then. The portraits of you and Sophie always speak to me in a way I can feel in my heart. That last one especially.

  7. How strange it must be to see this document from such a transformative time. As Rosemarie said, your poetry comes through, even in your more practical notes!



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