My Whole Expanse I Cannot See…

So, I recently read The Wordy Shipmates by Sarah Vowell, it’s about the folks who colonized New England in the 1630s. They were a bunch of well-meaning, but often destructive, ultra-religious book nerds. Their book of choice, the Bible. They were mostly Puritans. You work hard, go to church, read your Bible, you go to Heaven, that’s the gist of Puritanism. Some, however, were Calvinists. Calvinists make Puritans look like a bunch of happy-go-lucky, easy going, fey spirits.

Calvinists believed that before you’re even concieved, before your soul even enters your tiny new body, God has already decided whether you’re going to Heaven or to Hell. There’s no finding Jesus and getting saved, death-bed repentance doesn’t mean anything, God had it all figured out and He wouldn’t change His mind. So, why be good and study your Bible more rigorously than any Puritan, why be flawlessly pious if God has possibly already written you in His Going to Hell book? Well, they believed that people who “seemed” like good people, read the Bible, went to church fervently, raised kids to be pious, those people had souls that displayed all the signs of goodness and were PROBABLY scheduled for Heaven. Folks who were lazy, who couldn’t quote the Bible chapter and verse, who stole firewood during a hard winter, they behaved so because they got a Hell-bound soul. So, you ended up with a bunch of uneasy, sometimes terrified religious zealots desperately trying to “look” good.

One woman in town was particularly terrified. She was depressed a lot, didn’t like raising lots of kids, or practically living at church. She didn’t feel “good,” but tried really hard to conform. She was so scared of the not knowing which soul she was given. She couldn’t sleep, was nervous all the time. She asked the church for help, guidance, but the Calvinist Church wasn’t exactly a loving church. She didn’t find any help at church, or anywhere else. She probably suffered from mental illness, probably needed therapy and loving support from family and friends, but in the 1630s, mental illness wasn’t mental illness, it was that you had the Devil in you. You were evil. She felt evil, but wasn’t certain. She wanted to be certain, she wanted to know whether or not she was damned, just so she could finally sleep at night. To that end, she took her youngest child, a baby, and she threw it down a well. That settled things for her, she finally knew what kind of soul God gave her and that she was absolutely, without a single doubt, damned. She actually felt a bizarre peace.

I don’t want to throw any babies down any wells, I actually love babies. Whenever I see a baby out and about, I always end up transfixed, I watch their little hands, their little eyes, searching, learning. I always think about how that baby could grow up to cure cancer, or write some spectacular novel, or hit liquor and heroin really hard and be dead by thirty, or whatever. Babies are possibility, they’re the essence of potential. Not being a Calvinist, I also see that baby’s soul as perfectly clean, I don’t believe in that born sinful stuff, Jesus got screwed over so babies don’t have to worry about that. I always look at some baby and think about how they’re not all fucked up yet, unlike me they’re completely perfect. So, yeah, no killing babies to figure out what kind of soul God gave me.

Still, I’d like some certainty about some things. Where am I going after I die? I say that first, but it’s actually pretty low on my Worry List. I just don’t want to die, I want to avoid the dying. I died once, it didn’t stick, I don’t want to go again. Sometimes I get really dark and want to go vertically open my wrists, but that’s more about not wanting to feel sad than actually wanting to die. It’s also different when dying is this circumstance that’s forced on you. If you’re accidentally drowning in pineapple juice (that’s what killed me) or the hose on your vent breaks while you’re trying to buy a four hundred dollar Tumi bag, the absolute last thing you want to do is die. You beg God not to let you go, you beg to be with one certain person one more time. You’re all, “I’ll be good, really, I promise.” At least, this is how I am.

I worry about the when and how of my dying, mostly the when. I’d really like to know the when, then I could quit worrying about whether or not I have enough time to make up for the bad things I’ve done, enough time to have what I want. and feel happy. I worry I’m going to go out like Kurt and Elliott, sad and fucked up. I don’t want my story to end that way, the way it is right now.

That’s what I worry about most, running out of time, I’m constantly aware of time. I feel time, like it’s something tangible, rushing over my skin. I feel this constant sense of urgency, especially now, because I know I’m not where I want to be, and I know I’m one breath closer to to not breathing with every breath I take. I wonder if I have enough time to find my way to someplace bright. I’d like to know because living with the mindset that every day could be my last day is actually really exhausting.

I wonder how many of those Tony Robbins, motivational, “Live like there’s no tomorrow” types, I wonder how many of them actually walk that talk. Living like that, really believing the words, it’s not easy to carry. When you want something, you want it like there’s a gun to your head, like, at any second that trigger could get pulled and you won’t ever get to that kiss, that I love you, that waking up somewhere beautiful until you quit waking up. People don’t understand why spending time together is so important to you, because your clock feels so much faster than theirs. For other people there’s always tomorrow for walking under stars or curling up in bed to watch some movie about a talking fox, and to you, both experiences are more important than winning a million dollars. Loss hurts more because you don’t believe that chances are unlimited, in your head, chances are like a pack of used bar matches, you only get so many lights. Sometimes it all get so heavy that you look for ways to stop thinking, to stop wanting, just for a few hours. Liquor bottles and drug needles do that trick, but they’re exactly that, a trick. They just make it so the clock disappears behind a curtain, but just like any magician’s assistant, the clock always comes back.

Once you actually know about these things, once you stop seeing the end of your time as some kind of fiction, well, there’s no not knowing them. A bunch of Nirvana songs end up making perfect sense.  Like that Calvinist woman, lack of certainty makes peace hard to find. Such is true in my experience anyhow, but like I said, I’ll never toss a baby down a well for answers to questions that’ll probably come when I don’t answers anymore.

So, this is just a quick post to say… If you need help with a WordPress theme (like I did), hire Alisa Ryan Herr, @isabisa on Twitter. She helped me embed Eager Naturalist into my blog so it’ll show up whether or not a reader has the font installed on their computer.

She’s spectacular.

People keep telling me, especially during and since yesterday, how amazing I am, that I’m so smart, I push assistive technology forward. I hear about all the good I do, the people I have helped and will help, with the way I show technology, with my writing. I’m told I should be proud of myself.

Helping people is great, and I seem to be born into it. I have the intellect and I’m ridiculously blessed with access to technology. I have always managed to have the best gear. NeuroSwitch, this software, SwitchXS, their developers pretty much designed both solutions for my specific desires, to my specifications. The thought being, design for the high-end and you help everyone, novice to advanced.  I take the technology and show vast possibilities, people get inspired. I want to help people, I’m glad to do it. I can’t imagine not helping as long as I’m in a position to do it. I just don’t see why I should be proud of myself for doing something that’s simply right. You help people who need it, especially if you’re suited to do so, period. That’s what community is all about. I need plenty of help, so it’s just right to give back. I remember not having technology, nobody should feel trapped. When someone’s alone in the dark, all I want is to pull them out and make them feel safe, because I know alone, and I know dark. Helping people isn’t anything to praise oneself over.

Also, and this is just me… When I can’t sleep at 4 AM, knowing that I help people, it doesn’t make me any less lonely or any less scared. When I’m really down, I get a lot of “You should be happy that you help people, you should embrace that, you should let that fill you up. Happiness comes from within. Stay busy, work to help others.” I do help people, even when I myself feel dead inside. I can’t just quit, and I really don’t. The thing is though, I’m not Jesus, I’m just a fellow with a few hopes, a few dreams, certain things I want so very badly before I’m gone, and while I honestly desire to help people, and do so willingly, a life of service can’t be “it” for me. I’m supposed to be filled with this… peace, but I’m not. Really, almost nothing I do makes me feel pride or genuine contentment or genuine happiness. It’s all temporary, at best. I have my own, deep-rooted wants that go beyond service and being glad to simply exist.

There’s this scene in Cool Hand Luke, my favorite Paul Newman movie, where Luke (who has really done nothing remotely worth death, his original two year prison sentence for getting drunk and destroying parking meters), after escaping prison, is in a church surrounded by cops who want him dead. He starts talking to God, calls Him “Old-timer.” He basically says, Well, Old-timer, you made me this way (headstrong, smart, kind, rough, willful, at odds with everything), then you stacked the deck against me (put him in a position of service, obedience, a mundane “do as you’re told, don’t want for anything” life). So, what am I supposed to do? I know I’m a screw up, I make plenty of mistakes, but help me… Luke just feels stuck, and lost, and wanting. In prison, before his chat with God, the inmates looked up to him. All Luke’s courage, defiance against the system, all the times he got beat down (literally) only to get right back up again, it fed everyone else’s hope and strength. This role is basically fine for Luke, he wants to help, cares about others, but after getting the shit beat out of him in a particularly brutal way, with everyone looking to him to make them feel better about the situation, Luke finally breaks down and screams, “Stop feeding off of me!” They see Luke as this larger than life, break the rods of our taskmasters, Christ-like figure, but he’s not. He’s just a man, a basically good man who wants to do right, but who has flaws, who makes mistakes, who gets tired, who needs help himself sometimes. I know how he felt.

I mean, I’m completely grateful for all the spectacular, unique things I’ve gotten to experience, for all my “stuff.” I’m blessed, I know I’m blessed. I’m thankful for all of it. It’s just, no matter how many famous people I meet, or places I go, or people I help, or compliments I hear, or how well I write, none of it fixes the cracks that hurt at 4 AM. I’m missing something, I’m missing the one thing I’d trade everything else to have. It’s really nothing shocking, it’s not even unique within the human condition, it’s practically boring, yet to me it’s completely everything. No, I don’t want to be able to walk, or breathe and talk without machines, it’s nothing silly and pointless like that. I just want to go home, what feels like home to me, at least. It seems that the harder I try to have the only thing that’s truly important to me, the further away it gets. I’m so tired and uneasy. Being tired and uneasy makes me screw up, it’s this sickening infinite loop. I’ve screwed up so much. People tell me I’m amazing, all I see is failure, and time flying by.

My mom has this friend, and this friend is having a rough time. She’s got health problems, her son has SMA. She’s un-insured, her son’s barely insured. She’s out of work, it’s just a bad situation. So, people close to the situation, and people on the fringe, like me, we’re trying to help out by PayPaling whatever we can spare. Every bit helps, maybe with groceries, or rent, or medicine, or whatever.

If you’re able to help and are so inclined, her PayPal is…addie_summers@yahoo.com

If this sounds like a good idea, send something. Thanks.

So, right now people all over the world are in Intensive Care Units (ICUs) with some sort of respiratory infection. These people usually have some sort of underlying medical condition, Spinal Muscular Atrophy (SMA), like me, or maybe Amyotrophic Lateral Sclerosis (ALS). The doctors haven’t figured out exactly what’s wrong yet, or maybe they have and it’s just really bad, these people are teetering toward respiratory failure. They’re being treated with antibiotics, but maybe the treatments aren’t working yet, or they’re just working really slowly, so of course, these people are scared. They’re exhausted, and scared, and when things start going from bad to very bad, many sign a Do Not Resuscitate (DNR) order, a piece of paper that tells doctors, “If I quit breathing, don’t put a tube down my throat so a machine can help me breathe, just let me die.” These people have girlfriends, boyfriends, husbands, wives, kids, cats, dogs, some even have beloved pet turtles. These people have good lives, but they’d rather die than be hooked to a ventilator. That’s how scared they are of needing a machine to breathe, maybe forever.

I used to be terrified of a vent, but right before I went into respiratory failure a few years ago, when a doctor asked me if I wanted to live, no matter what… I said an emphatic, YES. Since I had that experience, I might tell someone in a similar situation…

I know you’re in the trenches right now, I know you’re exhausted, and depressed, and really scared. Not being able to breathe is honestly probably the worst thing anyone can endure. I’m sure you’re so scared and tired you can’t think straight, and if that’s not enough, you’re in pain too. It fucking sucks, and I know that it fucking sucks because I’ve been where you are right now. I’ve been in the ICU, my lungs all wet and heavy, with pain to make the situation feel like an even more spectacular Circle of Hell. I was terrified of dying, but I was also terrified of living and being miserable. I was afraid I’d never go to another movie, or hop another plane to someplace beautiful, or make love to a woman ever again. I’m sure you’re thinking similarly yourself just now. I know you’re scared that that’s what having to be on a vent will do to you. I was terrified in the same way. I was afraid they’d cut a hole in my throat, connect me to a vent and that’d be the end of everything I ever wanted, still, I let it happen. I stumbled head first into my worst nightmare. You know what though? When I actually got there, it wasn’t that bad.

If you have to be on a vent, let it happen. Go with it. Once you’re breathing right, and you’re not nervous ALL THE TIME, you’ll be amazed how much clearer your head will feel. Once you’re breathing right, you can rest and get your strength back. You’ll start to feel like you again. You can take your pain meds, get lots of sleep, you’ll get proper nourishment, and before you know it you’re back to your old self again. All that bad stuff I was scared of, none of it actually happened, and it won’t happen to you either.

You’re allowed to be tired, and scared, and even pissed off at God if you feel like it, but the one thing you absolutely cannot do is give up. You have a family who loves you and needs you. You have too much to live for to be signing some stupid DNR. Fuck DNRs, you have way too many good things ahead of you, don’t give up on them.

Part of me doesn’t understand why I’d have to write that at all, why a person wouldn’t fight for absolutely every second with the people they love. I have, and I know I will again, and I know that one time I’m going to lose no matter how hard I fight, but I’m going to fight it out anyways. In my heart, I don’t understand why people give in.

Intellectually, I know that society as a whole isn’t particularly encouraging on the subject of living with hoses and tubes. People don’t even like to talk about it, they just know it is awful. In pop culture, films like Million Dollar Baby tell people suicide is definitely the way to go. The Diving Bell and the Butterfly shows people this fellow whose life is tragic and beautiful in a sad sort of way, this fellow who ultimately dies in this horrific, yet noble fashion. Because, you know, we disabled people with hoses and tubes are all tragic, and sadly beautiful, and noble. It’s based on a true story, but it’s unfortunate to me that it’s the only kind of story that seems to sell. Oh, and that doctor who saved me, a few minutes before he told my mom to let me go. He said, “He wouldn’t want to live like that,” and in a moment of exhaustion, she thought maybe he was right. Fortunately, I was awake, and my mom told this doctor that it wasn’t up to her.

I know DNRs can be valid, terminal illness is going to end badly one way or another, but I think far too many people sign them under the false perception that breathing through hoses and eating through tubes is a fate worse than death. The medical system isn’t exactly nurturing on the subject. No doctor ever sat down with me and talked about how life would be very different, but I could still be me again. Doctors tend to have very low expectations in this situation. I just happen to be ridiculously stubborn, which kept me going.

The thing is, it’s really not the end of everything, technology and supports can provide a good life. Computers offer communication, ventilators are totally portable and reliable, restaurants will absolutely blend food that can be sucked into a syringe and pushed into a feeding tube. I eat out all the time, I have a glass syringe that feels swanky and eccentric. It’s not eating like it used to be, but the conversation with whoever I’m with is always good, and I’m still satisfied at the end. I travel. Last Summer, a friend and I, and an assistant, took a train to New York City. We spent a week in Manhattan. I get to fall asleep at night with the woman I love, with this woman who loves me and would never want me to quit fighting to come back to her. Nobody told me any of this was possible, I just knew the things I still wanted and I didn’t stop until I had them. The things that I want now, I’m going to chase them down too. Who knows if I’ll have them or not? I don’t know, but I believe they’re possible. That’s the story I’m pushing, a story of ultimately believing blindly in possibilities, a story of trying everything, no matter the degree of stupid or crazy.

This life isn’t always easy, sometimes it’s absolutely fucking difficult, but I don’t regret telling that doctor to do whatever he had to do. I don’t think a person should throw away their life because they’re afraid to experience something they’ve never tried, afraid because nobody ever tried to tell them that living could turn out awesome too.