Tag Archives: ALS

What I said before – all nonsense.

Bismillah ir Rahman ir Raheem

I’m so full of feces.

I’m trying to distill life and death and guilt into bolded bullet points for your easy digestion.

When I’m fighting everyday at this keyboard trying to write something that feels honest. That cannot be contained by a three-act structure.

(That maybe does happen in three acts for clarity’s sake, but alludes to something bigger. Also because tying my brain in knots isn’t my idea of fun. And I want to make people laugh. And that means making sense. This is a long parenthetical.)

When my mom died, I learned that I don’t know how to grieve.

For a long time, I wondered if my father was right. If I was selfish. Whether I even loved anything or anyone enough to grieve if it left me. Other than stand-up, improv and my personal freedom. Grieving all of that sounds even more selfish.

But then Mama died and my life went on as if nothing had changed. As if I hadn’t lost a limb.

I’m not going to sit here and tell you how to grieve. Everything I said before was utter nonsense. Well, I do all of those things but only to survive the day. But I have a feeling that most of us want to do more than just survive.

Muslims aren’t really clear about grieving either. Sure,  there’s the washing and wrapping of the body, the Janazah (the funeral prayer), etc. But being in America and my mother being buried in Sri Lanka, I could not partake in that ritual.

Leaving no clean break in my life between ‘with Mama’ and ‘without Mama’.

The best I could get from YouTube is don’t wear make-up or colorful clothes. Well, in that case, I’m grieving most of the time. Or my wardrobe is, anyway. Surely grief is more than sartorial choices?

So I’ve decided to drown myself in other people’s grief. After finishing #ZD30Script (in which I hammered out a holey outline) – I thought I’d treat myself by binging on House of Cards AND Breaking Bad.

But I figure they’ll wait.

I scrolled down my Netflix queue looking for a face of color.
I found perhaps 12 movies in hundreds.
Weak. But okay. Gotta start somewhere. And checking my privilege is a good way to start.

Fruitvale Station

Cried for a young man about my age, snuffed out before he could prove that he could be a father.

The Butler

My struggle with my father was much the same. Less nation-spanning perhaps. But just as earth-shaking. Still haven’t reached that emotionally satisfying resolution yet, though we are on speaking terms.

Decided to watch The Station Agent – a little person is underprivileged too. Though unlike the POCs in other movies, does his happiness come at so steep a price?

Well, I guess everyone’s happiness comes at a price. Uncertainty.

One of those quiet indie movies with quiet change happening over many quiet moments. The humor is pretty quiet too. The only two jokes in the movie are in the trailer.

My life has never been that quiet. It’s always been loud, messy, chaotic, out of control. Even if I wanted to be a hermit, no one would leave me alone. No one leaves me alone long enough to complete a writing sprint. It’s a struggle to quiet the voices in my head.

And of course, sex. Changes. Everything.

And alcohol.

And things change all in a rush – that part is true to my life. And suddenly we’ve found our place in the world and all that madness was worth it.

I liked that movie. I’d like to see a movie like that about people of color.

There’s a grief here I can’t explain. Would movies have saved my mother? Would movies have kept me from post-partum depression?

Movies can’t even seem to tell my story.

There’s a discord here that I really can’t shake.
I wonder if movies have ever told my mother’s story. If they will ever tell my story. If I will always be forced to find myself where I’m not, where I might not even be welcome.
Will my son face that discord too? Will he be in the world, but not really acknowledged by it? Will he care all that much? I didn’t have much else to do other than movies, books and TV growing up.
Perhaps this is yet another thing I need to do differently as a parent. Give my son something else to do.
Fact is, the world may or may not change. I can try and try, but it’s not me that holds the keys. This right here is grief.
I tried most of my life to understand my mother, to be friends with my mother, even best friends. But for a number of years, my efforts were decidedly less than futile. Even counter-productive. And by the time those years were over, ALS had taken her voice. And now, it’s taken all of her. And I can try no more. Though still I try. With my forehead on my prayer mat, I scream in my head to see her again. If it works, I’ll let you know.
I can try and try, but really there has never been any guarantee that things will change for the better.
Not for me. Not for my kids. Not for my mother.
This is grief.
Maybe this is why I’ve believed in God from such a young age. Something has to be stable to keep me sane. Something has to make sense. And someone, and yes, I do believe it’s Him (God has no gender really) has to reward the effort, no matter what the outcome. Nobody and nothing else does on the planet.
This is grief.
This is suffering. I know I’m not the only one.
May I be patient with myself. May I know right from wrong, even when no one encourages me to do the right thing. May I reach out to others who are grieving. May I keep hoping and keep trying. May God reward all our efforts, whatever the outcome. Ameen.