Monday, March 15, 2010

What This Night Is Like

It’s somehow coming to the conclusion that the only way to make this night tolerable is write a blog (maybe the first ever) while on the toilet unable to shit.

It’s waking up in the morning and checking Facebook to see that you’ve lost another friend. Nobody unfriended you or defriended you. They just had ALS and they died.

It’s one minute caring a lot about a hair style or the latest crazy idea turned into a big project and wishing the next minute that you could just die already.

It’s feeling a fist sized shit rip your asshole open and not being able to bear down or catch a breath. It’s that you have this feeling not once but twice in one day even though you cut out morphine and had a prune smoothie.

It’s 21 drugs and counting and wondering when you will be dubbed the fucking Baskin Robbins of pill poppers.

It’s realizing that expecting a clear sign that it’s time to die is like driving down a pitch black remote country road and expecting to hear “All Things Considered” or “Wait, Wait, Don’t Tell Me,” instead of hours of white noise and static mixed with snippets of some crazy fundamentalist ranting about the gays and the Jews.

It’s paying a heavy price for every fun day.

It’s wondering why the others like Megan or Scott seem to handle so much more crap than you do and wondering if you are a wimp or if you’ve just had enough.

It’s running out of words but still not passing this fucking ball of shit.

It’s realizing that life is a no good rotten man who beats on you and cheats on you and looks just like Jon Hamm as he stares in your eyes and whispers softly “come on baby, you know we are meant for each other.” And instead of wanting to quit him, you wanna hang in there for one more great shag. Fuck you Jon Hamm.

It’s knowing that someone is going to commiserate with you by saying, “Girl, I know what you mean. I was constipated once” and you are going to have to bite your tongue and not say, “Unless you have ALS, you do NOT know how I feel unless you’ve rubbed a cheese grater across your asshole for a good 10 minutes at least.”

It’s exhausting.

19 comments:

Anonymous said...

as michael once sang,"I'll be there! Ooooooooh! I'll be there! Just call my name, I'll be there". I love you! wen xo

Anonymous said...

i wish there were words - but of course there are not any of comfort, the only ones I have are you are loved.

I love you Carla.

Greta said...

I have both used a cheese grater and been constipated. I totally get it. Happy to see your post since I can't quit your blog, but I'm sorry it was brought on by such pain. And John Hamm needs to speak up. The understatement is getting old.

Anonymous said...

there has to be a constipation remedy that will work: powders, pills, enemas - have you tried them all? you should not have to be in this much pain just to take a fucking dump.

Kathy said...

Carla – you have shared with us the good, the bad and the truly ugly of suffering this crap-shitty disease. If only you could crap-shit with ease. These painful posts are painful for us too; but important for us, I think, who grow used to your gutsy realism and humorous take on the all-too-real circumstances in which you find yourself. I don’t forget that you are suffering and sad and scared, but sometimes I forget that this disease is progressing and taking its toll in ways I can’t imagine. Thanks for the slap upside the head today, and helping me to appreciate the little things once again.

Anonymous said...

I can't say it better than Kathy here.

I love you so very much Carla.

-stephanie

Anonymous said...

Oh, baby.
Oh, baby.
Oh, my sweet baby.

Holding you,
Allison

Anonymous said...

Carla,
I am not going to give you advice. I pray each day you hang in there for all these crazy projects. But whatever happens, you are deeply loved and deeply respected. And fuck John Hamm. He's an asshole. J

Anonymous said...

my first time writing. Not to say I know what you mean. not a chance in hell. But to say I'm out here miles and miles away from you, never having met you, but listening listening listening.

Anonymous said...

Have you tried using a rectal syringe? You can get them at CVS. A blue rubber ball about the size of a large mango that you fill with water and then squirt up your rectum. It's easier than an enema bag. I'm so sorry you are going through this!

Anonymous said...

Actually, I think it's called a "rectal bulb," not a syringe.

Maggie said...

love you...

maggie

Anonymous said...

I agree, John Hamm is an asshole...in fact I think I have either dated him or married him once! (or twice...yes I actually married my second husband twice...some of us are slow learners!)...Carla I hold you in my heart! I hope your blog goes to book form so I can pick it up and read it when I need inspiration...you are truly amazing!
Much love, Maureen

Anonymous said...

Don Draper (aka Jon Hamm) defined:

http://www.cnn.com/2009/LIVING/wayoflife/09/22/tf.dated.real.don.draper/index.html

conikeshet said...

Hi Carla,
Glad to see and hear you're reducing, or off the morphine. It shows. You are writing more, once again.
I too have constipation, have had before I started taking a small amount of morphine a few times a week. I have suffered the same indignities, manual disempation, enemas,shitting myself in my wheelchair or bed and needing help cleaning the mess up. The array of stool softners, milk of mag, diet changes, and water, water, water. No cure, only treatment after the fact.
Severe bleeding, terrifing seing a cup of bright blood in the commode bucket. I thought it would never stop, as I sat dangling in a hoyer dripping blood across the floor.
Thinking I would need cautery, after large doses of hydrocortisone suppositories failed, I have had two sigmoidoscopies while fullly reclined in my wheelchair, rather than risk another dislocated shoulder from the lift team as they use super human brute force to muscle my thin, 108 pound body onto the procedure table.
Still, as ALS robs us of one control after another, it hasn't robbed my spirit or soul. I raise imaginary middle fingers on my flaccid hands, giving a big "Fuck you ALS, I'm still alive."
Hang in there Carla.
Strength and blessings,
Rainbow

Anonymous said...

FUCKFUCKFUCKFUCKALS
ALSSUCKSSUCKSSUCKSSUCKS
SOMEDAY ALS WILL BE BEATEN!!!

Anonymous said...

I have just read your blog for the first time and I acknowledge that I don't know what you go through with your bowel movements. .. still, I wil offer advice. Psyllium husks. You can buy them bulk, very cheaply, at places like Whole Foods. They are a main ingredient in the products like Metamucil, which are sold, of course, to move things along, to keep folks regular, but they are full of chemicals and a little spendy. Also, pulverized flax seed can help you. Flax seed and psyllium husks have isoluble fiber that ends up in your shit and keeps it softish. Esp. the psyllium husks: they work like little pearls of gelatin in your popp. The more you eat, the more you poop soft shit.

I don't have ASL but I have gobs of hemmorrhoids around my anus that get bloodied and torn almost every time I take a shit. . . unless I am putting down my psyllium husks. I mix mine with protein powder and that's my breakfast but you could just use water and gulp it down. Or buy the metamucil-y stuff, which pretends to be orange-drink.

I have had screamed bloody murder during bowel movements, shocking anyone who hears me because it hurts so f'ffing much. I get anal fissures all the time, my anus bleeds regularly.

My deepest sympathy, Carla.

Anonymous said...

another thought: doctors can prescribe suppositories that will soften hard stools. They work pretty well.

Laura said...

Fuck, Carla, what the fuck? I fucking hate ALS. I don't know what it is like, I have no fucking clue. I just love you and I fucking hate ALS so much. And I fucking appreciated most moments of today. I missed some, yeah. But I caught a lot of them, especially when I was ready to miss them because of petty stupid things that don't matter. Because of you. PS I totally agree with Kathy. I think of you every day and hold you in my heart and this disease progresses in ways I can't imagine.