Month: September 2015

Quick Check In

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Hey! I’m in Guadalajara, Mexico for the week on business. It’s been an unproductively busy week so far and every minute’s been planned out so I haven’t had time to check in.

In Mexico, I find, disability ramps are only ramps by technicality. They’re barely wide enough for a wheelchair, and usually a really steep incline. The ramp to the hotel lobby is about three feet long and a 45 degree incline. The porters have to get a running start to push the luggage trolleys up. NOT easy for a chick with a cane.

I’m feeling particularly FAT while here, it’s muggy and walking is hard, so I’m constantly a sweaty gross mess. There’s a LOT of overweight people here so it’s not like I am out of place, but the sweating is really stressing me out. I wish I were able to be in Mexico and be cute and walk around. I haven’t been able to see any of the city, really, except as we drive from the hotel to work to the restaurant we’re all eating at back to the hotel. I’m trying to scheme a way to go out tonight and play. If I were healthy, I’d just go for a walk and see where it takes me, but walking is slow, and a huge effort, and I don’t want to be looking at a store while sweating buckets on the merch, you know? HI DON’T MIND ME I’M JUST SWEATING AND SHAKING LIKE A TWEAKER.

It certainly made going through security very interesting. I SWEAR TO GOD I AM JUST A FAT SWEATY PIG I AM NOT NERVOUS OR ANYTHING.

Being here has hastened my want to travel while I can. It’s been difficult, already, and I need to see what I can while I am still somewhat able. But planning that has to wait; I have to get back to work.

I hope you’re all having a terrific time.

Rainbows and Rememberances

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It’s been an introspective week, monitoring my stress levels and emotional energy and seeing where I’m at, really. Looking at that last entry, I’m baffled at the strength of my rage over that image. It’s certainly infuriating, and something I feel very strongly about, but the instant passion of my anger isn’t something that’s happened before. Looking at it now, it angers me, but it’s nowhere near the level of pissing me off that it was before. I don’t fully understand why it affected me so strongly, so instantly, and so darkly.

Something for my therapist and I to work on.

Today I found a link on my Facebook feed to a blog post about my friend with ALS who chose to end her life. It is a photographer who connected with her and documented the end of her life, the days leading up to and the actual end. Llewellyn Gannon’s photographs are beautiful, personal, and intimate. Her story gave me closure I didn’t have before, to know exactly how things happened, something more than a final farewell post from my friend on Facebook.

She chose to die surrounded by her loved ones on a beautiful April afternoon. I can’t think of a better way to tell her story, and to show why Death with Dignity is so important, than Llewellyn already has with her pictures and her words. So I will simply link it here, and warn you that there is death, and beauty, and nakedness, and fragility, and love, and power in these images. Proceed with an open heart.

http://www.llewellyngannon.com/she-had-the-right-to-die-1/

Thank you, Sherrie, for showing me the way, and thank you, Llewellyn, for your art and your love and your generosity.

Not even going to mince words here.

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Fuck everything about this image. Fuck the message it conveys, fuck the people who made it, fuck the president of the stupid fucking website it came from.

suffering is not beautiful
suffering is not beautiful

I’ve ranted about this before. And I will again. Because every time I hear something like this, every time I see something like this, I am filled with a rage indescribable in its intensity. I am sitting here, sobbing, because I’m angry. Because I’m afraid of someone thinking they have the power to make this decision on my behalf. And because I can’t make them understand. Short of committing an act of extreme violence or wishing something horrible to happen to a loved one to present them with the opportunity to reconsider their opinion, I am completely unable to make them understand how fucking HATEFUL this is. I want you to look at a dying woman with inoperable cancer and tell her how lucky she is to participate in the passion of Jesus Christ.

In my rage, I typed, “Let me stick a knife in your guts and then while your stomach acid digests you from the inside out, you can tell me how beautiful your suffering is.”

There is no grace, no beauty, and no “opportunity” inherent in terminal disease. There is nothing beautiful about starving to death because you’re unable to eat. There’s nothing graceful about shitting your bed every day. There’s no opportunity to be found while trapped in a shell of meat you’re unable to control, no opportunity when you’re in a hospital bed wracked with pain that the strongest drugs can’t touch, no opportunity while your memories and self slip away until you’re nothing but a meat robot that looks like someone your friends and relatives used to love.

We FIND grace, beauty, and opportunity in dying because we must. Because we have no choice but to laugh at pain, to smile at death, and to accept. Because we can not fathom a world in which suffering is for nothing and pain has no reason or purpose. And when all hope for life is lost, we find a new hope in allowing an end to the torment. In accepting our own death, at last, we find grace in deciding when your limit is reached, beauty in allowing the suffering to end, and opportunity to end things on your own terms, in your own way, in your own time.

Enjoy the life you live, that you are allowed to have such a hateful opinion because you have no idea what it’s like to be close to someone who wants nothing more than a quick end to their inevitable, pointless suffering. Praise Jesus that you don’t have the opportunity to make this decision for yourself because you’ve still got a life ahead of you. And enjoy that you have the opportunity to think you are entitled to make this decision for others.

Because you don’t.

You really fucking don’t.

Dreaming of a Different Me

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Dreams are such fickle things.

I’ve always dreamt strangely. I mean, really strangely. Everyone’s dreams are weird, but I’ve had several people tell me with impressed shakes of their heads that mine are especially so. “Dreams are weird, but YOU, man. YOU dream in another category.”

I learned how to fly by throwing myself at the ground and missing (ala Douglas Adams) but I was really crap at it and could only hover a foot or so off the ground, and it pissed me off that everyone I taught the trick to was so much better at it than I, and then was desperately trying to fly better when Lucille Ball was trying to kill me for some reason, and she was chasing me across the rooftops as I tried so hard to get it right…

It doesn’t help that I dream very vividly, I can draw you maps of places I’ve been, I can remember the tiniest details. And some of them seem…Significant, somehow. Some more important than others. They stay with me for days. I write those ones down, and I try to figure out what they mean, if anything. Sometimes dreams are just dreams. They’re nothing more than your brain’s way of sorting out events and memories and people, in the background, when you don’t have to try so hard. Your brain takes ideas out of the toybox and sees how they work together. Usually it’s a jumbled mess, mine usually have a storyline. ‘m usually a far more powerful person in my dreams, someone with psychic ability or superpower or something outstanding. Someone who can fix things. My brain takes important ideas out of the toybox gently, trying them out for size, seeing how they fit, and usually putting them away before they get dirty. If I dream about work, I know I’m under way too much stress. If I dream about past jobs, I know there’s still some resentments there that I probably ought to work out. Sometimes my dreams show me things that need to be addressed, things that I haven’t admitted to myself, things I haven’t allowed myself to think about.

…And sometimes my subconscious is just an asshole. “Hey, I know you haven’t thought about your dad in awhile, so here’s a dream where he shows up at work and you have to be polite to him because you’re at work and in public and he makes small talk with you and you really want to like him but you just can’t, and now he’s introducing himself to your boss who is saying maybe they can find something for him in your department, yay, father/daughter work day every day isn’t that great!” “oooh, hey remember that girl you crushed on, like, 20 years ago? Here’s a fun little what if scenario where she confesses it’s TOTALLY mutual and right in the middle of happy makeouts your ex husband shows up and sits down even though you are hinting STRONGLY that he should go away and he tells her terrible lies about you, so she leaves, crying. Wasn’t that fun?” “Storytime! Everyone you love is dead and everything is ashes and darkness and you’re all alone and you hear a cat crying in distress somewhere but you can’t find it! YAY!”

I’m usually not disabled, in my dreams. Not yet. It takes a bit of time for something to seep into my identity to the point that it’s who I am when I am dreaming. My tattoos took ages to show up. I There have been maybe a small handful of dreams so far that have ALS in them. Usually it’s a sideline thing. One time I almost got into a fight because they kicked my cane or something, one time I wanted to do something but I couldn’t, because I didn’t have the ability. It’s usually a minor thing, nothing existential or terrible, just…this shows up as a piece of me, subconsciously from time to time.

But last night, in my dream, I sat and watched my four year old nephew happily playing with toy cars on the floor of my apartment, and was suddenly overcome with a terrible grief, that this kid would never know me as anything but disabled. And I woke up crying.

My brain is a DICK.