I remember off-white painted walls, and dull fluorescents.
Stucco and old pain. It was not a good building, this place. People had a
tendency of fading away, of sweeping their humanity underneath the cheap
carpet.I was younger than I am now when I visited my grandmother
in her Home. Not her home, where my grandfather lives in Wichita Falls, Texas,
but the place she stayed once she couldn’t take care of herself- once she
forgot most of the things that made her a person. It was called the House of
Hope, which even now seems like a cruel twist of the knife. This was the place
in which my grandmother died.
She had this way of cocking her head and making vague
little affirmations, as though she couldn’t really understand what was
happening but wanted to appear confident. She was aware that something was
wrong, that she should be able to remember the name of the woman in front of
her- nearing the end she forgot my mother and much earlier than that she had
forgotten me.
That doesn’t surprise me- with the vast distance between
our two worlds, we were never incredibly close. She, the wife of a good
christian, homemaker and docilely submissive. I, a young and burgeoning atheist
seattleite. There are pictures of her holding me, and I cannot help but wonder
what she thought of the tiny, squirming body in her arms. I will never ask her.
My grandmother cooked for her husband and daughters their
whole lives, so we originally thought her Alzheimer’s had come from the
aluminum in her cooking pans. For years afterwards I remember using this
natural deodorant that smelled vaguely sappy and wouldn’t do a whole lot. We
were careful in the kitchen.
You can imagine our relief when we found out that it
instead had come from within- an incredibly rare gene passed on to her by her
mother. That feeling only became more pronounced once we understood that it
could be passed on to my mother and her siblings the same way. The gene that killed
my grandmother is called “Presenilin 1”, and it’s a rather unusual one, as far
as the world of genetics goes. Alzheimer’s is usually associated with the very
old- doddering men and women forgetting where they are- but Presenilin 1 isn’t
quite the same. As a gene mutation it expedites the process, and so the
eventual buildup of plaque in the brain begins in the early fifties, rather
than the average age, which is decades later. My grandmother began to show
recognizable symptoms when she was fifty three. A lot of things about my
mother’s mother began, then, to make more sense- the difficulty she had with
performing certain actions, or recalling incredibly simple memories.
We got scared, and we got tested. Well, I didn’t.
My aunt Laurie was the first to get her results back.
This summer she’s biking across the country, and I think she understands
the relevance of this. It’s her way of saying that she hasn’t lost to this. Her
defiance of the plaque that will eventually build up within her brain. She’s fifty
three this year, and we act careful. We try to let go of our clenched teeth
when she forgets the keys or some other minutia. Alzheimer’s is the sleeping
giant we tiptoe around.
I didn’t enter this equation until last year, when I sat on
my deck with my mother and her husband Loren. We were waiting for the call from
the man who had run the tests on my mom’s blood. Sitting there, I contemplated
the branching paths of my future. Presenilin 1 is an autosomal dominant gene.
This meant that if my mother had the gene, there was a one in two chance that I
did as well. I didn’t want to be selfish; I knew that in the next few minutes I
would have to be a beacon of support, but the idea of having a semi-permanent
expiration date slapped on me was to say the least, fixating.
The phone rang, and I watched my mother pick up the phone,
and crumble. We held her as she spoke to the other line, her body calm. She was
a doctor, she knew how this worked. She had delivered a verdict like this many
times before.
My birthday is on the eleventh of March. I will be eighteen
in less than a month, and as an adult my first act will be to have my blood
drawn, and sent to a lab to be tested for the presence of Presenilin 1. I’ve
thought about whether it could be better just not to know. I know that I could
never live like that. My body is mine, and I couldn’t close my eyes to
something that might be a part of me- and it’s interesting, because it’s not
cancer. People know what to do with cancer, how to feel about cancer. A young
man with cancer is a tragedy, he gets to make a wish. A young man with
Alzheimer’s is an outlier, a ticking bomb that takes decades to go off.
I’m a poet by nature, and I find a lot of tragic beauty in
Alzheimer’s. It’s almost a theatrical device, it’s so perfect. It’s not dirty
or gruesome, like some torture porn movie bought for cheap. Alzheimer’s is a
tasteful fade to white, an art student’s wet dream, losing individual part of
yourself, chunks of your life and the relationships you’ve formed in them.
Faces, voices, touches. What it tasted like to have someone bite your lip on
purpose. Feeling old leather inside of a closet. Being drunk and dancing. Being
drunk and making mistakes. Falling. Climbing. Singing out of tune but feeling
wonderful. I’m so afraid of losing that, and I’m terrified of the next thirty
days.
And sometimes I hate my grandmother because she died and
forgot what I looked like, but still managed to stick around for my eighteenth
birthday to give me a present. Somedays I feel like a schroedinger’s cat, and
the moment I open that box the four walls in my brain will fall and all of my
life will pour out like old soup. Most days I just feel itchy.
But I’m proud too. Of my grandmother, who suffered for a
long time but didn’t know why, who did the best that she could. Of my aunt, who
still manages to be more hardcore than anyone I’ve ever met- who climbs
mountains and eats trails for breakfast. And of my mother, who has a hard time
being good enough for herself but is sure as hell trying harder than you are to
be a good person. Who succeeded a long time ago but will never stop trying. Who
makes me proud to be her son and proud to share in her struggle.
I don’t know how to end an essay about Alzheimer’s on a
happy note- it doesn’t bring people together, or summon up any revelatory
knowledge. It just sucks. This whole thing just really sucks. There’s love in
me, and I feel it and I try to give it as often as I can. Alzheimer’s doesn’t
change who you are- it just takes it from you.
This is something I wrote awhile back. It’s about all of
this.
Alternate Names for my Grandmother
1.
wife of Joe
2.
dead wife of Joe
3.
ex-wife of Joe
4.
a Good Christian
5.
breather of rustbucket
dust and aluminum scrubbing pans
6.
femininity restrained
7.
wife of Gooder
Christian
8.
A GOOD MAN IS HARD TO
FIND
9.
jar with label- “Linda-good
till the last drop”
10. THE LAST DROP
11. unfortunate, unintentional regifting
12. from her to my mother and my mother to me-a ladderbacked
plastic slide that crumbled beneath us
13. or did she sharply snap?
14. you’re Synapses slowed
down
15. you’re Disease is
in me now
16. i know it’s not your fault but it's your face i see when i
pound walls at night
17. couldn’t remember my face- hers is fading now
18. i think she had a nice smile the days she knew she had a
mouth.
