My Whole Expanse I Cannot See…

Not breathing makes me think of Diving Bell, makes me think of dying, makes me think of not writing, makes me think of fear, makes me think of loneliness, makes me think of Sara.

I’m not sleeping much these days, a few hours here and there. Palahniuk’s right about insomnia, everything starts to feel far away. I feel like I’m a copy of a copy of a copy, world without end, Amen. I’ve quit sleeping before, this isn’t anything new, or unexpected. Ill-contented worriers don’t nod off well, we’re missing something important. 

I vividly remember the last time I fell asleep content and happy, and it was so long ago, so far from here.

I recently finished one of the most brilliant books I’ve ever read, Shriek: An Afterword by Jeff VanderMeer. Shriek is the follow up novel to City of Saints and Madmen, but it’s definitely not a sequel. I wrote about City of Saints…

“The book is a collection of stories and historical guides that center around the city of Ambergris, a city of religious fervor and political corruption. It’s home to eccentric artists and strange creatures. It’s a city that brims with life, and so much death. None of the stories are tied together in a linear fashion, the first story doesn’t flow into the second. I think each piece of writing easily stands alone, but as a whole they create a fully realized world.”

City of Saints and Madmen is a brilliant piece of world-building, it introduces us to Ambergris and its inhabitants. Shriek: An Afterword is an intimate look into the lives of two such inhabitants, Duncan and Janice Shriek, brother and sister. Duncan is an historian and the writer of The Early History of Ambergris, his last published work. Janice, a once prominent art gallery owner, turned journalist, turned tour guide, is writing the Afterword to Duncan’s Early History. She’s writing the Afterword because Duncan has vanished and is presumed dead, lost to his obsession with the Gray Caps. The Gray Caps are a race of child-sized mushroom people, forced to live underground after the founding of Ambergris. Duncan’s entire troubled career is based on studying the Gray Caps and their mysterious, often dangerous influence on the city. He knows they’re dangerous, yet his theories are constantly dismissed as eccentric at best. Reading Janice’s writing we learn that Duncan is not wrong, that bad things are happening in Ambergris. We also quickly learn that Duncan is not dead, and that Janice, in fact, disappeared after writing her Afterword. We know this through notes written by Duncan on her finished manuscript. Duncan returns to find Janice gone.

Now, the thing that makes Shriek: An Afterword so amazing is that the characters are just so real. Their world is very surreal, but Duncan and Janice, their core experiences are common to so many. Love, love lost, obsession, addiction, success, failure, loneliness, pain, we’ve all been touched by some of these things. Some of us have been touched by all of them. Shriek is the story of two lives, seemingly promising lives, that just don’t work out as one would want. It’s a sad idea, but it’s honest and there’s beauty in that kind of honesty. Nothing in life is guaranteed, but even if things go horribly wrong, we keep going, until we can’t. The fact is, life isn’t one straight and happy line. Life is a crooked, terrifying, spectacular, beautiful, fucked up mess. We write our stories for as long as we can, while others scribble little notes on our pages. Maybe it all adds up to the ending we want, maybe it doesn’t, we never really know until the last page. That’s the essence of Shriek: An Afterword.

I haven’t been so moved by a book in quite some time, it really resonated with me.

Last Days by Brian Evenson tells the story of Kline, a detective of some sort. From the beginning, we never really know much about Kline. He’s a detective, on his last assignment he infiltrated some kind of cult and in the process, voluntarily had his right hand hacked off. He then cauterized the wound on a nearby hot-plate, drew his gun and shot his wannabe-surgeon through the eye. An eye for a hand. Aside from saving his life, the act of self-cauterization drew the attention of a rather odd group of people.

After reading his story in the paper, Kline is heavily researched and then contacted by the Brotherhood of Mutilation, a bizarre religious cult who believes in salvation through amputation. The bible says, “And if thy right eye offend thee, pluck it out, and cast if from thee. And if thy right hand offend thee, cut if off, and cast it from thee,” an idea that the Brotherhood takes quite literally. A crime has taken place on their compound, and they insist that Kline, an amputee and self-cauterizer, be the one to investigate. Kline agrees to visit the compound with the understanding that the cult’s leader will explain the case. Kline, however, isn’t made aware that he won’t be allowed to leave the compound alive unless he solves the case, a case of murder. The situation is more complex than Kline could possibly imagine, he might lose more than his hand.

Last Days, to me, is a very well-written satirical horror novel. It’s action, suspense, chilling atmosphere and violence. I read it in one day, simply because I couldn’t put it down. It’s not a book to be read for rich character development, Last Days is really a fast-paced and unflinching waking nightmare. It appeals on a visceral level. Its intellectual appeal is in its dark satire of blind faith and the dangers of obsession. Last Days is a solid and disturbing read.

Lately, I can feel the weight of time, it’s like a lead blanket on my chest. I’m Quentin Compson and I can feel time, it’s a rock tied to my body, pulling me toward the bottom of the Charles River. Time doesn’t feel abstract, or arbitrary. Time is palpable, unflinching. Time is a zombie that you can’t shoot in the head, or burn. The cross didn’t kill Christ, time did. The clock is killing me one minute at a time, just like you.

If I died tomorrow, I wouldn’t feel content on my way out. Right now, I feel like Jack’s wasted life. I haven’t found the love of my life, I haven’t written my book. If I really think about what’s important to me, all I really want is to fall asleep at night holding a woman I love, and to write consistently well. Of course, time doesn’t particularly care about such things, time gives no guarantees to anyone. For me, time isn’t an excuse for failure, it’s a maddening force that drives me, frustrates me, and often terrifies me.

What do you want before time crushes you?

So, apparently, according to some folks on this message board, I’m naive. I’ve basically deluded myself into thinking that people with disabilities can lead full lives without government sponsored sex.

I find it very difficult, and very frustrating to argue with these people, their ideas. They have such a different attitude than mine. They use being disabled as an excuse for not doing some very doable things. A guy actually argued that we can’t have a real social life because we require too much help from the “ABs” (able-bodieds), or because ultimately, we slow down and inconvenience people. Thinking like that is exactly what holds us back, but they’re so stuck in their “disability community,” they don’t understand that things can be different.

This is why I avoid the disability community, it’s too depressing.

Soon, you’ll be asleep. Drugs will travel through a tube and into a vein in your neck, and you’ll go down. It’ll feel like forty year-old scotch, like the best sex you ever had, and you’ll go under, totally lost and happy to be so.

Yet, before the drugs take you, before life fades to black, you wonder about things. You wonder if you’ll wake up again, you wonder where you’ll go if you don’t wake up. You wonder if you’re a good person, if you deserve a return trip to consciousness. Mostly, though, you think about her. You think about her gorgeous brown eyes, the little strand of curly brown hair that dangles behind her ear. You think about her voice, how the sound of it makes you happy. You never hear her enough, you never tire of talking with her. She’s ridiculously smart, endlessly interesting. You think about holding her close, her warmth against your chest. You think about holding her, kissing her, soft and slow-like. You wonder what she thinks about you, if you’ll see her again.

The drugs are hitting you now, and soon you’ll be asleep.

So, in a few hours I’ll be at the hospital getting my monthly trache change. Hopefully, I’ll have something good to write about afterward, or I’ll die and write nothing. كيف تلعب بوكر

If I die before the zombies come, I’m going to be buried. My grave will be marked with a headstone, and on that headstone will be my epitaph…

He died like he lived, lying down.

Or maybe…

Epitaph by Michael Phillips

I hope I died in a really interesting way, something I would have enjoyed writing.

Or even…

If you see him again, shoot him in the head. He’ll go down permanently if you shoot him in the head. Then, you’ve got to burn him.

What do you see on your epitaph?

So, there’s talk of a social program in Zurich to help disabled people get laid, and apparently, I’m mentioned in a discussion about it. Things like this are totally disturbing, and totally frustrating. Honestly, I absolutely cannot stand the “disability community.” In my experience, it’s such a ridiculously fucked up group of people, they accept the wrong things and don’t fight for the right ones. They totally accept stupid conventions like, “disabled people can’t date and have sex because they’re disabled.” Society says it, disabled people accept it, and that’s that. The bar is set low, and disabled people take it. They accept programs that provide a mercy fuck, and don’t understand that we should want and fight for equal footing with society as a whole, equal being the operative word. We’re all really just one community, we’re all people.

I hate disability message boards, especially ones about dating and sex. People say, “oh, I’m disabled, no one will go out with me.” People say, “I’m hideous and I’ll never have sex.” I hate reading these things. I say, you’re not dating because you don’t have proper access to the world. I say, you’re not having sex because your attitude is garbage, have a little confidence. Learned helplessness and low self-esteem are not attractive on anyone.

People with disabilities need access to assistive technology, to personal assistants, to careers, to independence. Given these things, a person with disabilities has the chance to get out and lead a decent life, as much as anyone. If a person has these chances and still wants to hire a prostitute, fine. At least they’re no different than any senator or CEO.

I’m funded for assistive technology and personal assistants, and I gladly take that funding. It lets me contribute to society, I get and I give back. I go out with friends to clubs, bars, restaurants, wherever. I meet new people, I go on dates. A few months after I hired my first assistant, I met an amazing woman and we fell in love. We were together a long time, we had crazy passionate sex. We’re not together now, but at least we had something real. Even if I never find that again, it won’t be for lack of chances, or lack of trying.

I mean, I’m different in that I access the world very differently, but I want the same things as anyone else. I accept that I need help just to leave the house, but given that help I know that I can succeed or fail on my own. I want basic opportunities to live a good life, but I sure as shit don’t want a guaranteed government sponsored fuck.