My Whole Expanse I Cannot See…

It would have been better for everyone had that trach not gone in, technology fails again.

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.

So, I met with the Vice President yesterday. He was in town doing a fundraiser for Senator Bill Nelson, who I also met, along with his lovely wife, Grace. After Vice President Biden gave his talk on how backward the Republicans are, the Secret Service led us to a private room, skipping the always tedious receiving-line. The room didn’t have a table, so this fellow from the Secret Service had to hold my MacBook Pro so I could see it, which he did, minus the part about me being able to see the computer. He stands what seems like sixty feet away, at an angle to where I’m looking at my screen from under my glasses. My screen is a big, glowing blur. My mom’s talking about the importance of technology, whilst I can’t see said technology. Fortunately, I’m a spectacular blind typer. I have my keyboard memorized, I have a sense of how to time the locations of my letters and what-not. I made NeuroSwitch look as stylish as it should, while not demonstrating that I’m blind as a ninety year-old man.

I wrote this note to the Vice President…

I have used assistive technology for communication most of my life. After losing my ability to speak four years ago, assistive technology became especially vital. If I can’t type, I can’t talk. If I can’t talk, I may as well not exist. If I can’t talk, I’m furniture, I’m nothing.

For over fifteen years, I tapped a little switch with my thumb to access my computer. This was fine until a routine blood-draw injured my hand, and my thumb. Communication became harder and harder as my muscles got weaker and weaker. I felt trapped, terrified. Then I found NeuroSwitch, the best computer access solution I’ve ever used. NeuroSwitch allows me to access my computer with any muscle in my body via completely portable wireless hardware. With NeuroSwitch, I can communicate any time, any place.

Technology is everything to me, it’s how I live as a productive American citizen, it grants me what our founding fathers promised anyone who makes a home on U.S. Soil, the right to Life, Liberty, and the Pursuit of Happiness. It’s that promise that makes America beautiful, access to assistive technology, like my NeuroSwitch,  is the best way for our government to keep that promise to its disabled citizens.

Also, and I’d kick myself if I don’t say this… I have this unusual collection, a collection of odd and unique neckties.  I have quite a few, but I don’t have a Vice Presidential Necktie…

I’ve been reading lots of Sarah Vowell lately, The Wordy Shipmates, Unfamiliar Fishes. Her love of history, the way she talks about America at its best (and worst) is contagious, I think I channeled her in writing my note to our Vice President.

Anyways, Vice President Biden was very generous with his time, and very receptive to the need for providing technology to the disabled.

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.

I recently finished reading Whitechapel Gods, a decently entertaining fantasy novel with a hint of fabulism. Victorian London’s Whitechapel district is tormented by not the Ripper, but rather two mechanical Gods, Mama Engine and Grandfather Clock. After coming to existence on earth, which is never fully explained, we just have to accept it, Mama Engine and Grandfather Clock seal Whitechapel off from the rest of the world making it a soot-filled mechanized nightmare.  The sky is hidden by a vast canopy of steel, and monolithic metal towers loom haphazardly, casting ominous shadows over everything. The air in Whitechapel is thick with factory smoke, barely battled by dimly lit street lamps. Some citizens voluntarily give up their bodies and souls to the Gods. Their hearts are replaced with coal-burning furnaces, their limbs torn off and replaced with mechanical facsimiles. Other citizens are afflicted with “the clacks,” a disease in which mechanical parts grow spontaneously from human tissue, usually resulting in death. The book does an amazing job of creating a dark and truly claustrophobic atmosphere.

Unfortunately, the story itself isn’t anything spectacular, even a little muddled at times. A group of rebels banding together against impossible odds to topple their malevolent oppressors, we’ve read it before. The book’s characters are a little flat and not particularly engaging. While definitely a fairly fun read, I see Whitechapel Gods as a great deal of wasted potential.