My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

May 14

Astonishingly wrong

Category: Life

The profound wrongness of this thread was so astonishing that I had to post the following reply.

It’s amazing to me that some of you seem to know absolute facts about my life. Still, let me just clarify a few things.

First, I’m definitely grateful to my mom and family, of course I am. She’s done lots of work to keep me alive. Yet, I was raised to feel like a pretty “normal” person, with no real difference between me and my younger brother save for the fact that he can walk and I can’t. I was never coddled or sheltered from anything. I was raised to know that I’d never climb trees or drive a car, but so what? There’s an entire world of other things to do, but sometimes I’d have to do them differently. It was never instilled in me that I couldn’t do just about anything. I was raised like a typical son, really. So, I think it’s natural that I want to leave the nest.

Secondly, I can’t imagine wanting to “pull the plug.” I like the plug right where it is, plugged in and with a back-up battery. I like my life, I don’t see it as a bunch of losses. I never walked, so I don’t miss that. Any other “losses” have been so gradual that it’s easy to adapt. Honestly, the only difficult thing about my disability is not being able to talk, because that happened quickly and unexpectedly. Still, I’m adapting to that too.

Next, I’m not trying to live “alone,” I’ll always need assistants. Those assistants just won’t be part of my family.

Lastly, Sara and I are together because we have lots of fun. We go to movies, clubs, restaurants, things any couple does. We flew to Boston last December to see an Aimee Mann concert. We have practically everything in common. I courted her and we fell in love. Oh, if sex is “NOT” a possibility for us, then I have absolutely no idea what we were doing Sunday morning.

4 comments

4 Comments so far

  1. Ali May 14th, 2008 2:51 am

    Reading those comments made me want to fucking puke all over them. All the comments about not “getting” Sara… there is nothing to GET.
    I know Nathan [the hub] has been commenting you. We had a rough break from his Mom, we don’t talk to her and live across the country. I hope things stay friendly with your mom. You can do it, you can have independence, duh you know that but it fucking really gets to me reading people saying that you cant, or shouldnt. I feel like you and Nathan would have alot to talk about. Oh and what is so hard [HA!] about a working penis going into a working vagina to understand?
    Sorry, rock on sir.

  2. Ali May 14th, 2008 2:54 am

    OH DUH PS
    Sara is gorgeous!

  3. Jen May 14th, 2008 4:45 pm

    First, Mike Hello! I really feel like I already know alot about you through TAL and through your blogs. I read this post this morning before work and was so angry I had to post.
    Below was my response to the complete morons out there.

    Ok, I have been seeing too much crap on the internet about Mike Phillips. Really most of you have NO CLUE about SMA or the lives that people led with SMA.
    Yes Mike is a person, not a doll or a helpless gimp. He is a normal person who unfortunetly has over his life lost the use of his limbs. People with SMA have higher than average intelligence and the same needs and desires as everyone else. The last thing they need is other people telling them what they can and cannot do.
    For further information Mike and most others with SMA can have sex, yes they can, they have functioning sex organs and the brains to use them! I am so sick of everyone assuming that they can not have normal healthy relationships with a lover. Although it is not a conventional relationship and special considerations need to be made, it is still a relationship and yes they have sex and feel when they are having sex. People with SMA have feeling, they have feeling everywhere. Unfortunetly they can’t move, or lose the ability to move.

    Please become a little informed before you try to tell people who already deal with adversity everyday what they can or can not do.

    One of my closest friends has SMA, they told his parents he die before he was two, well he is 43 now and married. He has lived independantly since he was 18 since he left for college at the University of Texas, where he graduated with a degree in business. He worked in a bank for 15 years and now owes a cafe and is in real estate development. Although he lives totally independant from his family he has assistants that help into his wheelchair (that he drives himself with his mouth), they set up his computer so he can deal with all his business. His assistants are his hands and legs, they help him do the things he can not. He is not helpless and in need of any of your pity.

    Arghhh….I’m sick of it these are normal people who unfortunetly can not use their bodies in the same way you and I can. Think about it!

    Posted by: Jen | May 14, 2008 5:26:01 AM

    I just wish people would and see you for who you are, trying to look past a disability is too much of a strectch for most people. In view of that the people you come to surround yourself with happen to get you. They get that you are a person and not just a gimp ūüôā I jest with the gimp comment mostly to make fun of all of those out there who can not and will not ever understand you.

    My friend Keith has been really upset by things that are being said and he feels what you are going through. He told me today that it is unfornutnet that when we put our story out to help people understand or maybe see things from a different way they take what we have put out there and distort and misinterpret our message.

    For the almost two years I have worked with Keith I have never seen the disability and not him. How could I he is one of the smartest, giving, loving and interesting people I have ever know. He like you has never used his disability as an excuse for anything, and he loves to tell people he is just a normal guy who just likes to sit alot.

    Anyway, many people are close minded and stupid and think people should fit into certain roles and when they don’t they assume that there is something wrong.
    Keep going Mike, independance is important for you and you can acheieve it.
    Jen
    P.S
    I thought that the picture from the story was amazing, you and Sara look so in love and the lighting and color made the picture almost dreamy.

  4. alyssa August 25th, 2008 10:01 pm

    profound wrongness is right. jesus. i don’t like to think that there are people like that in the world, who just make up their own facts because they can’t deal with how ordinary the truth is.

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