‘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.