Man who can only move his face and thumb seeks independence

Mike Phillips, a 27-year-old with a muscle disease that has eliminated his ability to move his limbs, wants a bit of independence from the mother who has cared for him his entire life. But neither of them has quite figured out how this is going to work. Ira Glass is featuring Phillips on Sunday's Showtime version of "This American Life." (St. Petersburg Times)

Comments

[Blairwitch]

He wants a bit of independence - His thumb works - He can Hitch A Ride.

[Cherie]

I'm not even sure how I feel about this. Of course his mother has watched over him 24/7 since his birth, because he has a disease that could kill him any minute...he should be grateful to her, not feel "trapped". Unfortunately his life is what it is and doesn't warrant him being "independent".

Someone "dated" him???? WTF? I'm sure he's a nice guy...but its not like you can go out on dates or be romantically involved....

I'm not sure this is movie worthy...except maybe a Lifetime Special.

[G-Man]

I think my family knows that if that ever happened to me they better pull the plug.

The 'girlfriend' I don't get at all. I think she might need more medical attention that he does.

[sometimesilie]

hey, NICE thumb! Wanna bang?

[Sigh]

After looking at the "Frontier(s)" ad a the right for a few days, I really miss that 'tush' add for the bidet.

[sometimesilie]

hey, she's doing a nice thing for him. Guy doesn't exactly seem like a chick magnet, but I'm sure the freaks will come out of the woodwork after he airs on TAL. I would still want to (quietly) see other people if I was her...

[Jim Romenesko]

The Frontiers ad runs until May 16. It's gotten five times more hits than any other ad on the site, so it's doing its job.

[Phranqlin]

It's amazing that he survived 27 years when most people with his disease die as babies. His mother must have been extremely devoted to him. But beyond that, he must have one hell of a will to live. I think this spark is what draws his girlfriend to him, not the sex (although you can do quite a bit with just a thumb :-). And it's natural to want to grow up and gain one's independence. Dunno if it's possible, though, but without goals and dreams, there's little reason for to live.

I hope the girlfriend knows what she's getting into, though. She will end up being his live-in home health nurse if they move in together, taking on the role that Mom plays now. And that dynamic is not the healthiest for a relationship.

[Cherie]

Phranqlin...the g/f dumped him. Its in the article. I guess she'd had all she could take?

Jim...I much prefer the hippie cow to the Frontiers ad...I'm glad it got you a bunch of hits, but it gives me the creeps.

[Naga Please!]

I know that Frontiers ad has been clicked here at least 20 times. I've been showing it to some friends here, and it's great.
Jim should put up more ads like that... for movies that is.

[ULTRA]

WHAT IS WRONG WITH WANTING THIS INDEPENDENCE?

[Phranqlin]

@Cherie, the article later says that the two of them got back together in December.

[whyaskwhy]

As the parent of a kid with a milder form of MD (spinal muscular atrophy is a form of muscular dystrophy), I can appreciate what he is going through. There is nothing wrong with his brain, it's his body that is failing. Sadly, what movement he has now will go away without warning and he will be trapped in a shell that he can't escape. May he live long enough to live quasi independent and experience adulthood even if just for a day.

[Jennifer]

Nothing, except his medical condition specifically prohibits it, and he may die very quickly if any little thing goes wrong. I don't know how the hell the guy could DO it.

[Anna]

The man is held 'prisoner' by his own body. Independence would equate a death sentence.
How sad.

[CryMeAriver]

The girlfriend thing totally creeps me out. As far as the boyfriend wanting to take the chance to live on his own even if it kills him- cudos to him for his bravery! I, on the otherhand, would have found a way to pull my own plug. Living with his condition does not constitute living at all.

[some chick]

I don't get why you-all are so weirded out by the girlfriend?
He's a pretty incredible guy. His body's a mess, but ... ain't nothin' wrong with his head, and that's the most attractive organ any of us possess.
As for his independence, kudos to him. I'm sure he understands the consequences, and he deserves a life of his own, even if it kills him.

[Reno]

I don't understand the girlfriend thing either. What woman in her right mind thinks she can have anything close to a normal relationship with this man? Is it charity, or just craziness??

[CryMeAriver]

Ok so the GF appreciates his personality and brains...BUT let's be honest here- you can't tell me that those qualities are all she needs in life! What about cuddling? What about SEX?!!!

[Cherie]

some chick, i completely understand what you're saying. I'd be friends with him in a heartbeat. I'm impressed by him...totally. But G/F means more than friends, it implies romance and physical interaction which they obviously cannot have...so what would be this girls motivation to be considered his "girlfriend"? I think that is more what we're all questioning.

[Sean, Torrington CT]

Well if his face works, his tongue works, right?

[Amara]

Maybe no other guy was willing to date her, i mean its not like this guy can run away or anything.

[CryMeAriver]

Sean just because his face works doesn't mean he has enough dexterity in his tongue to...oh nevermind. I'm grossing myself out now. SOMEONE PASS THE DAMN PROZAC ALREADY!

[chris n cali]

i have spent the last 4 years working with people with developmental disabilities. some of my clients have traumatic brain injuries and cannot walk, talk or pee standing up. some of them have had diseases that caused the disabilities and some even yet have had musculature problems since birth and just cant do it by themselves.
there is a way for guys like him to survive but he needs constant companionship and constant help. hope he gets what he wants but i especially hope he doesn't get taken advantage of.

[twerp]

geez, I don't EVEN want to think about anything going on in this guy's sex life. It's just TMI. Anyways, there's no real answer to this guy's problem. If he wants to go at it alone...get him one of those, "I've fallen and can't get up" necklaces....of course he couldn't push the button on the thing. I say let him go at it alone for awhile. Go by and check on him daily and make sure he's ok. More than likely, he'll decide that he likes having help around the house. Hell, I would like that!--having somebody to cook food and clean the house...ahh, dreaming of how great that would be!

[Ann]

Sean & Cry....you crack me up!
(I actually thought what you stated)

Sex is a vital part of any intimate relationship.
This is NOT possible in this scenario,unfortunately.
There is something very strange going on in this relationship with his girlfriend & he does not want his mother around.
Sean & Cry, you may be ON to something...
Do not tell me that we have evolved above that...
GET REAL!
I am not a robot & neither are you.

[A.V.]

Sean,
He looks a lot like Terry Schiavo.
Could they be related?

[whereweather]

I'm really surprised by the lack of imagination some of y'all seem to have.

I happen to know "the girlfriend," who is an intelligent, independent, and creative young professional, and I can assure you that "the girlfriend thing" is quite real. She was attracted to Mike because he shares some of the same qualities (intelligence, creativity, a fierce independence).

Obviously, they both know that his appearance and physical abilities are far from normal, and certainly many women would have been turned off by that. But _not all_. Folks should remember that. Some people are even attracted to the differences of disabled people (and if you think about all the different things that different people find sexually attractive, you'll realize that's not so impossible! What do _you_ have in your Internet bookmarks or under your mattress?)

If you're curious about their sex life (and sure! it's natural! who wouldn't be?), Mike is a very open person and has posted about exactly this subject on his journal:

http://www.lithiumcreations.com/?p=13

(The summary: "Fucked over by genetics, has lots of sex.")

Hope that's educational. ;)

[Michael Phillips]

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.

[Jen]

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!

[Lee]

I watched the show and recoiled in horror. I literally said out-loud, please let this thing finally have come to peace by the time of the airing. I was truly shaken when I did not see the R.I.P 2008 deal. Hopefully peace will come soon for him and those around him.

[Lily]

I cannot believe that anyone of you who wrote negative comments could be that cruel. You've put some bad shit into the atmosphere and will eventually reap what you sew.

[exit]

@Lee:

I hope peace comes for you soon, and those around you.