The Accidental Thanatologist

That is my dear friend Jody and her daughter Lueza. Jody was the first friend I made after Sophie was diagnosed with infantile spasms in 1995 in New York City. Jody's daughter Lueza was only a few months older than Sophie, and she, too, had been diagnosed with infantile spasms and severe cerebral palsy. Jody and I walked the city streets with our girls in carriages and strollers. We placed our babies next to one another in cribs, played music for them, held them and one another. We went to a mothers support group at the hospital on the east side. We despaired and we exulted and we laughed with rue about our new lives. Jody sent me a subscription to a newsletter in those pre-Internet days -- it was called Mothers From Hell -- and was obviously geared toward our sort. Dark, funny, dramatic, despairing and resilient. We both moved to California, her to the north and me the south. We had more babies, she a daughter and me, two sons. We had long spaces and distances but stayed friends, talked for hours and hours on the phone, laughed more often than cried, loved one another and our beautiful daughters and sons.

Lueza died unexpectedly on April 4, 2011. I was driving up Fairfax, crossing Beverly Blvd when I heard from Jody, and I took a sharp right into a bank parking lot, drove down the ramp into darkness, sat in my car and wailed for a half an hour. Whenever I pass that corner, that bank, that ramp into darkness, I think of Lueza and her tremendous light.

Jody is an immensely talented actor, singer and writer. She is adding pieces to her blog, The Accidental Thanatologist, that you must read. It is, as she says, a walk through love and catastrophe.

I love you, Jody and am grateful for your constancy. And your writing is smashing.

June 14, 1995

Sophie was diagnosed with infantile spasms on this day, nineteen years ago.

I'm not much a one for "anniversaries" -- all that "never forget" blather.

We really don't ever forget, do we?

It's been a long, freaking ride.

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.

Muscle Memory

I felt it only vaguely today and recognized it only once. On June 14th, 1995, Sophie was diagnosed with infantile spasms, and I left one life behind and began another. I am struck this eighteenth evening by the peace of the sun going down, again, the neighbor speaking sharply to his dog, the chitter of the squirrel, the sway of a palm, an errant siren that speaks of city, and Sophie's eyes.

Diagnosis

So, June 14th came and went, the seventeenth anniversary of Sophie's diagnosis of infantile spasms. Sophie was three months old, and I was thirty-one. I used to believe in a sort of muscle memory, a growing dread that was nameless until the day came and I realized that that was what it was, oh, yes, and no.

I wrote a book about it all, a book that I found tiresome and put on a shelf a couple of years ago. I've pulled it down, though, and might even do something with it. Here's an excerpt, a piece from the end of the first chapter, titled Diagnosis.


Within a half hour of arrival, our 12-pound baby had what appeared to be dozens of electrodes attached to her head and to a small monitor that showed an alarming screen of black squiggles and waves. Told this was an EEG, a machine to register brain-wave activity, I stood beside Sophie and feebly patted her.


"How does it look?" I ventured. 


The technician kept her eyes on the screen, twiddling with some dials.


"Oh, I'm not reading it. Your doctor will let you know."


She said nothing else for the next forty-five minutes. After that, I was led back to the original room, where I sat on a beige metal chair and nursed Sophie. In what seemed like hours, the two chipper Fellows returned, their earnest faces poking around the doorway. It didn't seem right that they were my age or younger.


"May we speak with you now, Mrs. Aquino?" They drew up chairs and cornered me. They each had clipboards and pens. I had Sophie. The Fellow spoke up first, abruptly and efficiently.


"All right. Your daughter appears to have what is called hypssarhythmia, indicated by sharp spikes and slow waves on her EEG. This is usually indicative of a rare type of seizure disorder called infantile spasms. We'll need to admit her to the hospital and start her on a course of high dose steroids. These will be administered by intra-muscular injection. We will, of course, train you so that when you take her home after a week, you'll feel confident giving her the shots yourself. We have some information here, and unless you have any question, we can begin the process of admitting your daughter, Dr. S. will see you up..."


"What are you talking about?" I hear myself say. 


The Fellow's last few sentences were coming at me from the other end of a tunnel, an incomprehensible drone. The younger resident leaned forward and spoke firmly. 


"Mrs. Aquino, your daughter will need further tests so that we can find out..."


"I don't know what you're talking about," I said, this time a little louder and I began to stand up, clutching Sophie. The two women stood up, also, simultaneously scraping their metal chairs along the beige floor.


"GET OUT OF HERE. I DON'T WANT YOU IN HERE." My voice, just below a shout, seemed to be emanating from somewhere different than my own mouth.


Who were these two women, bowing out the door, excusing themselves? Ten years later, I remember that day and that room and those women with a painful clarity. That they were quickly replaced by our new neurologist, a slightly daffy, bird-like woman with a head of wild, wiry gray hair, didn't erase them from my memory. Their attention to personal fashion and relative cheerfulness, even professionalism was an obscene contrast to the diagnosis they had loosed into that room. I’m not sure what could have made the situation better at that time, but I do know that those two women who diagnosed Sophie that afternoon became emblems for me of the medical world. I would meet them again and again over the next several years, their bland faces peering out at me in the guise of twenty-four year old hospital social workers, residents and interns.  I would feel most comfortable, later, with their opposites: Dr. S, who flitted into and out of the examining room with an almost Tourette-like intensity and who stopped me one day as I strolled Sophie down the street outside of the hospital, “Pretty in pink, she is, she is, pretty in pink.”  Dr. T, who carried a beat-up Thomas the Tank Engine briefcase had noticeable hygiene problems, rips in her hose, and tea-colored stains on her white blouse, yet she carried far more authority for me than the impeccably bow-tied senior physician who held Sophie up like a specimen and rotated her for his student’s inquisitive eyes.            


I wonder if those first two women should have entered that beige room, wailing and cursing at the news they would have to deliver. They might have dropped their clipboards and notes and ripped their expensive clothing and tore at their glossy hair. They might have wrapped me in their arms and then we could have all held Sophie and wept for her.