My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Mar 24

People keep telling me

Category: Life,Opinions

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.


5 Comments so far

  1. Tasha March 24th, 2011 11:57 am

    It’s that you do all this great stuff and still feel that way at 4am that makes you a real person and not a cliche.

    you have made a tremendous impact on atleast 3 of my closests friends through exposing them to the possibilities of SwitchXS. And I think it’s even more inspiring for them to know that you struggle too with the deepest darkest parts of self, as they do. As I do.


  2. David Kelly March 24th, 2011 1:29 pm


    Your post reminded me of Monty Python’s “Life of Brian” – “He’s not the Messiah, he’s a very naughty boy! Now go away!”

    I don’t know you personally – only from what I saw on TAL and what I’ve read in your blogs. You impressed me by being a strong, independent person who has beaten the odds and I wanted to hear what you had to say.

    One observation is that I wish you were more compassionate towards yourself. You have mentioned that you feel like you’re a failure. If you heard someone else say that about themself, I’m sure you wouldn’t agree with them. Give yourself the same compassion (or more) that you would give someone else. Yes, you’re a human being and you’ve screwed up. We’re all human and we all screw up. BTW, I need to take my own advice because I could use it.

    I hope you feel less lonely and scared, particularly at 4 am. And I hope you achieve your dreams and get what you’re missing.


  3. tori March 30th, 2011 7:17 pm

    i feel you, i’m in a position right now where people tell me i am good for doing what i am doing. i feel like crap still for not being able to do what i want, get what i want, because of the “right things” i have to do. i am sortof stuck helping other people who need me. i totally feel you. i just turned 30 and still can not be “ME” because i have to be “this person who helps other people” for the past 10 years. i get people telling me that i inspire them, they don’t know how i do what i do. that i am a good person. and i think: NO i am NOT good. i just do what i have to do. it’s just that, i think whoever you are, you choose to do the “right” thing even though you’re not happy to do it. doing the right thing does not necessarily bring you joy. people who never have to choose between sacrificing themselves and doing the right thing, i guess they don’t and won’t understand. and it’s okay. what helps me get through these days is the recent realization that THIS IS IT. there is nothing else but these series of ups and downs. for some people, the ups are few and far and between. someone’s got to be flattened by a house after earthquake, why the hell shouldn’t it be me? on a positive note, i love reading you. thank you.

  4. tori March 30th, 2011 7:47 pm

    also mike, the difference between us is i keep this all to myself. i wish i had the balls to put it out there in the world with my name on it.

  5. Tess April 3rd, 2020 8:31 pm

    I love you