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.

(branches).

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.

Muscle Memory

Today is an anniversary of sorts, albeit a painful one. On this day, twenty-one years ago, Sophie was admitted to New York Hospital on York Avenue after being diagnosed with infantile spasms. Those who've read my e-book might remember that I was given the diagnosis while sitting in a gray folding chair in an emergency room. I was holding Sophie. The two young residents were holding clipboards. Their voices came from the end of a long tunnel, and I stood up, raised my voice and said what are you talking about? I remember them backing out of the room when I told them to leave, and then I remember being admitted to a room at the hospital that was straight out of a Dickens novel: six or eight metal cribs with babies and toddlers inside, some alone. Sophie's crib was by a window that looked out onto a shaft. The panes were coated in dust from the 19th century when the hospital was built. A cheerful nurse brought an orange into the room and some hypodermic needles. We practiced shooting the needle into the orange and then pulling it back out to make sure we hadn't hit a vein. The drug needed to go into the muscle. The drug was a powerful steroid given in a very high dose. The skin of the orange was thick and puckered and the needle slid right in. Sophie had been on the planet for three months, and the skin on her legs was so soft. Do babies have muscles? We stayed in the hospital for one week during which the baby's appetite grew so grotesque, my breasts couldn't keep up. Don't worry, a young doctor said to me as I pressed my face against the dirty window and wept. Breastfeeding isn't everything. We went home to our little apartment on the fourth floor of a walk-up on the Upper West Side. We continued to give her the shots, twice a day. Her face blew up like a moon, her eyes slits in puffs of pale, the white pustules of thrush around her lips and bottom. She screamed 22 hours out of 24, so we walked with her. Up and down, up and down, up and down the little balcony off the bedroom, the roof-top water towers marking the sky. She continued to seize. I wasn't going to mark this day, but why not? Muscle has memory even after twenty-one years. I have practiced and never hit a vein.

How We Do It: Part XXXIV in a series

When I forget to take a breath and take a breath, it's like late afternoon sun that slants through a door, sirens outside, through a glass and down a marble bar. The bartender squints, his shiny black head gleams, I take a sip of amber and swallow. A long time ago, I sat in a pale coffee-checked armchair on the fourth floor with my baby girl. She was inconsolable for hours at a time, twenty out of twenty-four, I wrote in my spidery script in the spiral notebook for the visiting nurse. I tallied the baby's jerks. Despite the twice daily injections, the baby jerked and now screamed. One, two, three, four, five, a slanted cross over upright sticks, hundreds of slanted crosses over upright sticks. Two years earlier -- or was it? -- I had walked with the small bald Vietnamese man, at the back of the crowd, his robed bent frame in front, twenty blocks, peace in every step. I knew to breathe and how to. Sitting in the coffee-checked armchair on the fourth floor with my baby girl, crying, I knew to breathe. Breathing in, I calm myself. Breathing out, I smile, I said in my head, under breath and through it. The small, bald man gleamed at the front of the line, before the baby, in my head as I sat in the chair with the baby, as I sat at the bar years after the baby, as I lifted my glass, the amber, the sunlight. Breathe and swallow.

Conservatorship, Part Five

So, it's done. The Husband and I took Sophie downtown yesterday morning and waited with many other families before filing into a small courtroom where we waited some more for our turn to stand in front of the judge, raise our hands and swear our truth. We sat quietly and listened while a grandmother petitioned to become the guardian of a fourteen year old girl. The girl's father objected, and there was some intense back and forth between the man, the judge and the girl. The court security guard stood up and walked over when the father pulled papers out of his bag and then pushed them toward the girl and her lawyer. It was hard not to notice the gun. A large young man with Down Syndrome stood between his mother and father, his arms thrown around their shoulders, a huge grin on his face when the judge pronounced them guardians. Throughout the entire proceedings, I heard the most horrific clicking, grinding noise coming from behind me, althernating with screeches, and I strained to not look back. At some point, a young man in a wheelchair was pushed up the aisle toward the judge. He was small and shrunken in his chair, rubbed his hands together over and over and ground his teeth so hard that I closed my eyes, imagined my hands on either side of his small face, willed it peace. Sophie hummed and shifted in her own chair, the judge was respectful and greeted each conservatee by name, both when they entered and when they left, was almost sweet in mien.

I realized that in the not so distant past, all of these young adults would have been chained to beds in institutions. I was grateful for the reams of paper, for the waiting and the officialese. I was grateful for the absurdity of all of it.

Eighteen years ago, on June 17th, I was in New York Hospital with Sophie in a room with six cribs and six sick babies. I sat in a plastic chair by a dirty-paned window and waited for the hours to pass, the nightmare to end. Instead, I learned how to inject steroids into Sophie's legs by practicing on an orange, the nurse cheerful in her demonstration. I pressed my nose on the nineteenth century glass of the parents' lounge and cried, my tears running off my nose and down the window. I waited for tests to come back, for reasons and answers to whys, the baby sleeping and crying and seizing in the metal crib, while I sat in the plastic chair and just kept waiting.

The papers have not been officially stamped and could take up to eight weeks to be delivered (wait for six and then call, our court-appointed attorney said), but we are now Sophie's official conservators, granted the seven powers of conservatorship.

So, that's it.

My main thought is whether I check the box next to the word Guardian or the box next to the word Parent - Mother on future official documents.

Does anyone know? I'll wait for an answer. I'm still waiting.