‘Cause there’s no comfort in the waiting room
Just nervous paces bracing for bad news
Then the nurse comes around
and everyone lifts their head
But I’m thinking of what Sarah said:
That love is watching someone die

Death Cab For Cutie, “What Sarah Said”

The waiting room was our living room; the nervous paces were that of my father, little brother and me. I was bracing for what I still feel guilty about: good news, that it was finally over. My dad was the nurse, and I lifted my head on May 23rd, 1995, as I woke up to his announcement: mom is dead.

Love is watching someone die. That’s what my dad taught me when he chose to take care of her, to have her spend her final years with her family, the ones she loved, the ones who loved her.

I was 14 when she died and I was 12 when she was diagnosed with early onset Alzheimer’s disease. The autopsy said it was actually amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) and frontal lobe dementia, but it didn’t really matter; there still isn’t a cure for either one and the end result would’ve been the same.

The only difference, as far as what the misdiagnosis caused, was she was prescribed tacrine and was subjected to frequent liver tests which she hated as a result. A proper diagnosis wouldn’t have spared her life, but at least it would have spared her those much dreaded doctor visits.

I get like this from time to time, but it seems like the last few weeks have been especially harsh. I’ve cried myself to sleep on more than one night; the last few, I’ve even broken down in front of Rio.

The other day he told me to go to Starbucks and write my feelings down. I told him I didn’t want to go outside; he told me he didn’t want me to get too depressed.

Breathe in the oxygen; happiness is a foreign country, but sadness is far too expensive to live in.

excerpt from a poem I wrote years ago

I have reverted to 12, 13, 14, who I should have been then. Grieving. Not the hollowed-out shell of a kid who went back to school the very next day in hopes of a starting a new, less catastrophic life, only to find out about the insensitive whispered miscalculations of her old life by the peers who knew no better.

So here I am now, writing my feelings down, the thoughts that cause both the unexpected and inevitable flood of tears:

She’s gone for good.
She’s not coming back.
It’s not fair.
How can I find her when I don’t even know where she went?
What cruel god would do this to her?
Is there a heaven?
Will I ever see her again?
Why?
She deserved a long, happy life.
My dad deserved to grow old with her.
I deserved a mother, especially during puberty.
I need you. I love you. I miss you.
I’m sorry.
Goodbye.

I was too young then to understand that every last moment was just that: the last. My dad knew; he videotaped the last few weeks of her life. It wasn’t that he thought he’d want to watch it again as much as he knew he’d never have the chance if he didn’t.

She used to scream at the top of her lungs, over and over, until she’d gasp for breath only to do it again. That was the background music to my 13th Christmas. My younger brother and I opened our presents quietly while our older brother pulled ornaments off the tree and our mother screamed.

I hated her at times, and I hated myself for hating her. I hated this woman who stole my mother, and I loved her every time I remembered she was still my mother, regardless of how she was acting now. I hated how selfish I felt for needing anything for myself. I hated that my life had been far from normal long before she was sick. I hated that I couldn’t do anything but watch her wither away into a skeleton.

I dramaticized my life at the time to a point; it was how I dealt with everything prior. My older brother is developmentally disabled, which never felt like an accurate term for how he actually is. That’d be a more appropriate way to describe someone with dyslexia than it would be someone who hits you in the face for crying.

But, that’s who he was and that’s how he was, and my interpretation of the time period is as valid as the way I felt about it.

So, my mother did in fact starve to death on the living room couch. That is how I saw it then and that is just what happened.

But, in the interest of honesty, she’d also smile at you while you walked by, her head barely turning, but her eyes following you the whole way. That was who she was. Someone who was in enough pain to fill the house with her agonizing screams, and someone who could still smile, even with dried tears streaked on her face.

I don’t feel like writing my feelings down anymore. They feel as old and tired as I do.

I love you too.

The sky is blue, and while the sun blinds me when I look up, I still hope you are looking down.

You said you knew there was a God, because there was a blue sky. I still remember that, and while I didn’t understand at the time, I understand now: you desired heaven, and you wanted to believe what I want to believe, that your mother was there looking down at you as you looked up for her.

I hope your dreams came true, and I hope you are now there with her, and your father, at peace, at Plum Lake.

There are, and will always be so many things I wish I said, and wish I didn’t say, but your soul was kind, and I know you loved me regardless, and I know you knew I loved you too.

Love,
Your daughter, Beth, the one who is still grateful to have spent at least half her life with one of the most amazing people ever to walk the Earth.

Photographing fishies is a lot harder than I thought, but we now have 4 of them, all pictured there :)

I also decided to take a video.  Now introducing…. Glurpy, Vida Uno, Muerto Dos, & Calico!

Because that’s the kind of change I believe in.

Not a country that only recently legalized interracial marriage, and still bans the marriage between two people of the same gender.

This is not something we should have to fight for.

In less than a week, I have seen the result of not one, but two horrific accidents.

In the first one, there was a good possibility that the victim died. My boss and I watched from the window in our office, and I felt sick to my stomach. The man was not moving or responding to CPR. He laid on the ground, and was dragged on to a stretcher.

The second one was on Saturday night around 2am. Rio and I watched as a man on the ground who, luckily was still able to move, was pulled into a wheelchair and taken away.

In a blink of an eye, you could end someone’s life. You could devastate a mother, husband, child.

Please don’t.

she also packed a similar lunch for my dad to take with him to work. the main difference between the two was that she always substituted the cookie with a fun-size snickers bar.

she used to keep the bag of snickers in the refrigerator, and we weren’t
allowed to eat any of them. they were for my dad’s lunch, so they were off-limits. i’m not sure why, but this was one of the few rules i obeyed as a child.

when i was in fourth grade, the mars company was having a contest
involving the fun-size snickers. inside each wrapper, was a letter.
the letter was one of the letters used to spell the word “mickey” –
like mickey mouse. the goal was to get all 6 of these letters, and then
send the wrappers containing them to the address on the bag. upon
receipt, you would be eligible for a free trip to disneyland.

during this time, i was actually allowed to eat one per day. i don’t
remember any other time, before or after, where she’d let us eat one out
of our dad’s lunch supply, but she did then. i used to get so excited
about the letter in the wrapper, that the candy inside was of little
importance.

most of the letters were relatively easy to find, and came up multiple
times in our search. out of all of them, ‘k’ was the most popular,
while ‘y’ was the least: we couldn’t find it at all.

every day, i’d race home to get my daily snickers, and every day, i’d
excitedly open it up to find any letter but ‘y’.

and, every day, my dad would come home from work, and before i could say
anything, he’d say, “sorry, hon.. no ‘y’ today.”

it had become something to look forward to in an otherwise dark and
unsettling phase of my childhood. it didn’t matter what else was going
on: that bratty little girl could steal my favorite pencil, my best
friend could tell me she never wanted to talk to me again, i could get
picked last for whatever sport we played that day, or better yet, i
could get hit in the face during dodgeball. as long as that ‘y’ was out
there, all of those things seemed fairly minor and insignificant.

one day, i came home from school, and my mother was smiling. i felt my
heart leap.

“guess what?”

“the ‘y’!!!! the ‘y’!!!”, i exclaimed.

“your dad got it in his lunch today!”

it was surreal. to this day, i can still distinctly remember how It
looked. the mildly shiny white wrapper, torn a little from being
opened. the faded brown ink of the coveted ‘y’. i had waited for it for
so long, and now that we had it, it was so much more than a candy wrapper, or a ‘y’. right then, i felt like i had everything, as if life was one big puzzle, and suddenly everything had clicked into place perfectly. if my idea of heaven is true, and you simply live within happy moments for all eternity, then that would be one of those moments.

we sent off all of the letters to the address on the bag, just like the
rules said, but we never heard anything back. i think i asked my mom
about it a couple of times, but eventually lost interest. i don’t
remember ever feeling sad about the lack of response, and i don’t even
think i realized we had actually lost the contest until years later.

in retrospect, the “y” had been so difficult to find, that it became the
contest in itself. once we finally had it, i couldn’t even remember why
we had needed it in the first place, or why it had been so important.
it just was. it had given me a reason to wake up in the morning, to
find purpose in my life during a period of time where i had been
struggling to find any.

sometimes, i think i’ve been searching for that ‘y’ my whole life, as if
we never really found it. the ‘y’ takes on different shapes:
quintessential ashtrays, bags, apartments, jobs, phones. anything to
break the monotony, or to fill certain vacancies in my life, even if
only temporarily.

just like walking home each night, or reading a good book, the process
is always better than reaching the actual finish line.