Archive for dementia

Both/And

Posted in The Blog with tags , , , , on July 11, 2013 by chateaucone

I am adopted.

Present tense.

I am not someone who “was adopted.”

(Although for a long time it felt as though it were something that happened to someone else, a baby named Elizabeth Ann who lived in a fable with fairy godmothers to rescue her and magical cousins to grow up with.)

“Adopted” is a state of being. It doesn’t end.  It is not unlike being of Italian-American descent. But of course it is totally unlike being of Italian-American descent.

I say this because the very fact of my adoption is fluid, constant, present, always, fragmented and changeable, but never ending, never done. It exists never solely in the moment in the conference room in Angel Guardian in 1967 where that baby changed hands, changed identities, but in every moment since then, in 1000 different forms and thoughts, processes and perceptions, conversations and categories.

It is a molten state of being.

My father is the keeper of the adoption story, and he is losing his memory. Sometimes he asks me whether he and my mother adopted me, or whether I am theirs.

“Did we adopt you, Elizabeth? Or are you ours? I think you’re ours,” he says.

The words he uses are tricky, difficult, to think about. He never would have made this distinction before tiny strokes started destroying the neural pathways in his brains.

I was both/and, always and already, have-always-been, adopted and his.

I have written an entire dissertation about our adoption story–about the power of narrative and how it, for so long, erased the adoption, so strongly did it construct the fact of the inevitability of our family.

And yet somehow, as my father’s dementia progresses, I have become even more his, if possible, than before, the holes in his memory easing any final boundaries–the adoption now not only figuratively but literary erased.

This is a strange little paradox.

My father’s memory, the one that took all the disparate pieces of us and created our story, our family, is breaking apart like a teacup falling off the table shattering into one million tiny pieces.

My father’s memory, I think, is in that moment where the teacup has just hit the floor and the shards are bouncing back up into the air, in slowest motion, still discernable as a teacup but spreading apart, the spaces between the pieces bigger with each passing millisecond, the cup losing its shape, its curves, its teacup-ness, in movements of almost negligible increment.

The universe tends toward chaos. The teacup will never leap back up off the floor and put itself back together. This is not how I imagined my father’s stories would be lost.

But.

I believe in our family, our meant-to-be-ness, in a different way than my father does, I think–but in a way that is perhaps just as fragmented. I don’t need, or even want, the adoption erased. I can hold, have been holding for years, all these disparate ideas in my head at once: I am adopted. And (not but!) I am a Cone and a Paganelli  and connected by more-than-blood to the whole-extended-family, regardless of how I got there. And (not but!) I have another mother and father, and aunts and uncles and cousins out there somewhere, and I am part of those families too. And (not but!) I am not a whole-hearted supporter of adoption as it is now practiced, and as it has been practiced in the past. And (not but!) I am happy I was adopted, and sorry that my birth mother was probably coerced, maybe only in subtle ways, to give me up. And (not but!) my own neurological pathways are probably a little messed up from being reliquished as an infant. And (not but!) I’m pretty sure I wouldn’t change that.

My father likes to blame my college friends and the politicians I worked for early in my career for my political views. But it was the idea of the creation of our family that made me who I am– that gave me the tools–however inadvertently–to believe families have little to do with blood and genetics–that families that we construct out of disparate pieces are every bit as real, as valid, as valuable, as those that occur biologically.

My father’s neurological pathways are coming undone. But his stories and their implications are embedded in me. They are inside my cell walls.

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Collapsing Boundaries Among I’s; Collapsing Time

Posted in Small Epiphanies with tags , , , , on December 11, 2012 by chateaucone

Small Epiphanies: December 10

I am re-reading my dissertation in preparation for the defense on Wednesday.

Finally.

And I like it.

There. Now the gods will smack me down. Narcissus all over again.

My car will break down on the way to Columbia. My book bag will spring open, of its own will, and my single copy of my dissertation will fly out, page by individual page, and float down W. 12o St. like giant snowflakes getting run over and turned to grey slush by car tires.

I will arrive at the defense out of breath, sweaty, dissertation-less, discombobulated, and ready to write one of those Worst Case Scenario Survival handbooks.

But let me first ask you this: Is dementia an epic metaphor for post-structural notions of memory?

Smith and Watson tell us this:

Readers often conceive of autobiographical narrative as telling unified stories of their lives, as creating or discovering coherent selves. But both the unified story and the coherent self are myths of identity. For there is no coherent “self” that predates stories about identity, about “who” one is. Nor is there a unified, stable, immutable self that can remember everything that has happened in the past. We are always fragmented in time, taking a particular or provisional perspective on the moving target of our pasts, addressing multiple and disparate audiences.

We are always fragmented in time. Our selves, our subjectivities are decentered, unknowable, fragmented. Is dementia a loss of the ability to impose culturally acceptable narratives, to stay put in one time, to stay put in one narrative? To stay put as one’s present, in-the-moment I? It dementia a collapsing of the boundaries between all those momentarily-existing I’s?

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Lurching, Fragmented Time

Posted in Small Epiphanies with tags , , , , , , , , on December 8, 2012 by chateaucone

Small Epiphanies: December 7

We are home, in Patchogue, safe and sound, and Honey and Scout celebrated by sniffing every single blade of grass, individually, and thus gathering the latest news of the canine population of Fair Harbor.

It’s good to be home, and I feel as though some of the anxiety I’ve been attributing to the dissertation defense has lifted, and was, maybe, due more to moving home (and carting all my stuff back to Patchogue) than I realized.

But now. Now I can concentrate on the defense.

All day, in the back of my mind, I’ve been trying to think of questions that the committee might ask me, and I can’t think of any. In fact, I can’t even think of what my dissertation is really about right now. This, I guess, is its own form of  jitters. So, I’m going to reread the damn thing for the millionth time and appease my anxiety by memorizing names of theorists which will virtually guarantee that no one asks me about a theorist–because that is how my attempts at studying usually go. I will plan speeches in my head, and recite them in my sleep, and no one will ask me questions to which those speeches will be appropriate responses. And the defense will be something completely other than my imaginings. But I will follow my process nonetheless.

One thing I do want to be prepared to talk about is where I want to go next with this research, what my plans are, where I see the ideas going, that sort of thing. I was asked this question during the defense of my MA thesis, and I said, rather inappropriately, that the only thing I planned to do with my thesis and all of the background research was to have a big bonfire. I suspect that this answer, genuine though it was at the time, will not fly in this go around.

The truth is I have only vague notions of where I want to go with this. I want this published. This dissertation. Exactly as it is, if possible, which of course it won’t be. But after that? After that I think I want to write about my dad. This project centers so much on my dad and his stories and family and memory; it seems logical, or necessary even, to write about my father’s memory as he loses it, to write about the peculiarities of what he loses and when, and what he remembers, and how his mind seems to be working, and to examine my own visceral, inchoate reactions to all of this, which, to be honest, are not always the most compassionate or helpful.

For example:

When my father thinks my mother is his sister, I want to let that situation play itself out. I want, somehow, a glimpse of my father’s relationship with his sister, as though I could see that through his confusion about my mother. When my father thinks we are in the house on E. 2nd, I want him to describe it to me, every detail–the sounds of the trolleys on MacDonald Avenue, the temperature of the room, my grandfather’s mood, the fabric on the sofa, the scent of the breeze moving the curtains on the front windows, his sisters’ voices in the background.

I am sick and twisted. And while my father’s brain may be lurching back and forth, unwillingly, through time, dementia is not a time machine.

But. But, but, but.

Time is a series of discourses that structure both self perception and perceptions of others. We never really go back or forward but use memory and prediction to write narratives that are self fulfilling, self justifying, self accusing, or self abusing. The past is never past and the future is always beyond our grasp.

What happens when we look at my father’s memory through this lens? When we look at dementia? Or any normal, healthy memory? What happens when we are using memory to write ourselves, and memory is failing, physically, beyond all of the ways in which I’ve already talked about memory failing in theory?

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We Built This City (Or, the Happy Side of Deconstruction)

Posted in Small Epiphanies with tags , , , , , on December 1, 2012 by chateaucone

Small Epiphanies: December 1

When I was little and my dad was putting me to bed, we’d kneel and pray. I’d pray for Jaci-Joni-Dave-Steve-Jay-Bobby-Carol-Tommy-Richie-Billy-and-KathyAnn–my cousins, all in one breath, and then my aunts and uncles and parents and brother, and Captain, our collie. (Adrienne was born later.)

Now, my dad has dementia. and reciting all my cousins’ names in order is how we help him remember who we’re talking about, or which cousin belongs to which of his sisters.

My dad has a story for every one of my cousins—the year Carol got an “Easter Bastard” from the Easter Bunny; the time Richie repeatedly spilled the bucket of soapy water my father was using to wash the car until my dad threw a wet soapy rag at him and it wrapped itself around his face; the time Grandpa Cone threatened to spank Jay, and Bobby, in turn, threatened, “I’m going to kill Grandpa,”; the day Jaci colored in Steve’s face with a magic marker as he lay in his crib, and said, “I thought it was paper”; all the times Joni was woken up and allowed to dance on the kitchen table late at night when she was a toddler; the time my dad gave 4-year-old Dave a cigarette on the back stoop of the house on E. 2nd in Brooklyn, because, as Dave said, “All working men smoke, right, Frank?”

In October, we had our first official grown up Cousins Weekend–Jaci-Joni-Carol-Adge and me. (Kathy Ann is in Florida.) I don’t know why it took us this long, but I have to thank Joni for getting us together, just for the sake of being together.

That weekend, we sat in my living room, and on the porch, and in restaurants, and remembered being little together, although we weren’t all, actually, little together, and talked about who spoiled who, and put together family secrets of which we each knew only parts.

I don’t know if it is this way for my cousins, but it is for me. We are family more because of our shared history, our shared stories, our communal narrative, than because of blood. We are our own community of practice, as we’d say in more professional contexts.

We share a memory; we share a discourse, a vocabulary. We have our own jargon.

Does it feel this way because I am a collector of stories? Am I a collector of stories–family stories–because I am adopted? (My brother would say yes.)

What would it mean to challenge our meant-to-be-a-family story emotionally, for me? I’m not sure I know how to do it.

Too many of us are adopted to say our family is “natural;” but our family has long been naturalized.  Our family is forged of things more ethereal than blood and bones and DNA.

We built this family, story upon story, lives and souls imbricated in narrative.

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