Can’t think it would take that long to spell out “F U.” 
Ruby
Well the general public was always a little annoying to begin with. Now I don’t find them particularly annoying. Certainly haven’t noticed a lot of staring from adults but maybe I’m just not paying attention. Kids stare all the time, I must scare the hell out of them, but I’ve gotten used to it.
When I m out alone I am usually wearing headphones and listening to music or a book. If I’m with friends or family, they make a point of telling people not to exclude me from conversations.
Dumb questions
I’m out at the mall a couple of years ago. A teenage girl points me out to her friends, “Look there’s Christopher Reeve!” No I don’t look like him but undaunted they rush over, “Can we have your autograph?”
I’m at motor vehicle, (have to get a photo ID which is now required to register in a DC hotel) , a guy asks me, “Are you on line for a driving test?”
“That’s a real jazzy looking chair. How do you like it?”
Most stuff is just dumb not cruel.
Mosier
I’d like to go for a walk. Also I have a Physical Therapist who believes everything Glenn Beck says. I’d looove to go off on a fifteen-minute rant with him.
My family is strong, but not me. Stubborn, opinionated yes but strong? No way. Without boring you about what I did for a living let’s just say I was a classic A personality.
Fessie
Nice to hear. Where I live now I thought they’d burn a cross on our lawn when my Obama sign went up.
Cosmic Relief
My emotions have changed. A common side effect of this is “emotional liability”. I react strongly to things. I cry at the drop of a hat, laugh at inane stuff. It has gotten much better over time but it’s still somewhat of a problem.
Mental sharpness is something else. My family would tell you no but I say hell yes. Sometimes I feel my mind is turning into mashed potatoes. I feel like I have lost a little short term memory and I am not sure I can concentrate like I used to.
Broomstick
Cindy makes jewelry at home. I’m a full time job.
Rbroome
My daughter is a Special Ed teacher. She brings me in for show and tell.
Mindfield
Glad you posted! It’s pretty horrifying to me too. On the other hand, to me there are scarier things. For what it’s worth I have my mind. Although we are faaaar from rich, I don’t lack anything. Blindness scares me, living in a Sudanese camp horrifies me. This just takes getting used to, or so they tell me.
The Home Health Aide thing is a national disgrace and crisis. Agencies are paid $25-50 per hour to provide help. They in turn pay Aides $8-9 an hour, with NO HEALTH INSURANCE, to provide help. Around here McDonald’s pays $11 an hour. So the cream of the crop isn’t available.
Well speech is a problem. I am slowly able to vocalize, sometimes loudly. Usually what I say comes out in a garble that only my family can understand but an occasional, FUCK YOU! Comes out pretty clear.
I hope life doesn’t give you too many more occasions when you need to say that.
Thanks for your candor and courage.
Blinkie, thanks for doing this thread, it is very illuminating. I can’t imagine having the strength you’ve mustered through the years.
What was it like to have to have people doing everything for you, and what was learned from that ? I would have a very hard time dealing with others helping intricately, but, when in duress… What have you learned about people’s generousity and helping?
Oh man…he doesn’t have that crap on in the background while you’re doing your PT, does he?
I wonder if there is any hope of forming a Health Aide co-op to compete with these companies? If run out of the home of someone who needs an Aide, it could provide a good administration job for a partner and keep them at home.
Hey blinkie, I’ll add my voice to those who are very appreciative that you have started this thread. Hope you enjoy the Dope!
My questions: What kind of physical therapy do you get? Is it for improvement, or just maintenance?
We have a similar type of thing in our community. Mr. S looked into it when he was seeking work as a CNA. But it was very part-time, and he’s now employed full-time at a state-run veterans’ home.
I’ve met a few of the health co-op’s members (in nonprofessional situations) and they seemed very nice.
I wonder if a simple private arrangement would be workable. Eliminate the middleman and all that. But perhaps then licensing or something becomes an issue.
For Halloween who do you dress up as? I always said if I had some kind of disability I would use it to my advantage on Halloween.
After it happened did you fear being buried alive?
Elelle
You pose an interesting question. I can’t say at the moment what if anything I’ve learned. Have to give that some thought but as far as “intricate” things, that is something I still struggle with. I was self conscious before, more so now. After someone has seen and had to endure everything that was once private it is inconceivable that they could still love you.
Generosity. I wish I could say that everyone was generous and helpful but that wouldn’t be the case. Most people are oblivious. On the other hand there is ALWAYS someone who helps. A few weeks ago I was asked to write something for my church which kind of describes my feelings on this, so here goes:
My redeeming moment or life-changing event is actually a series of moments. The life-changing event is pretty evident. Eight years ago, on Christmas eve, I got, what I thought of as a particularly nasty Christmas present. It literally knocked me off my feet and left me speechless.
When it happened I was angry. Angry with me, angry with the world and angry at God. How could he do this to me? I was a good guy. I hadn’t done anything to deserve this. God and I argued. Well I argued he didn’t say much. In my mind I screamed, ranted, cursed and generally made a fool of myself. He didn’t say a word but he did listen and instead of yelling back, or smiting me or something, He started to send me what Cindy calls little angels.
Let me tell you about a few of the miracles God has thrown my way along my journey. My first angel is of course Cindy herself. To anyone who knows me this is obvious, but she doesn’t really count. She has been my angel since we were thirteen and she’s walked this whole road with me with me. But until eight years ago I hadn’t really known the depth of her incredible strength and positive spirit.
When I was first in the hospital I was in far worse shape than I am today. I couldn’t make a sound, couldn’t move my head, couldn’t even open my mouth. Every day when Cindy would leave after visiting hours were over I was terrified. There was no way for me to communicate with anyone. If was in pain I couldn’t signal for help. If someone did something that caused me pain, and there were people who did hurt me, all I could do was cry. And cry I did. For days Cindy would come to the hospital and find me in tears, not having slept a wink.
I could only sleep when she was there. Then God sent two angels. They weren’t your typical angels. They didn’t have halos or robes. One was a nurses aide, a six foot five inch Jamacaan man who could and did lift me in his arms with abnormal strength and unbelievable tenderness. That man, everyone called him Juice, would stay by my side for hours each night, tending to my every need. He reported to a nurse, Jocelyn, who was another atypical angel. She had garish makeup and a hairdo that can only be described as a fright wig. To her, tangerene colored lipstick would be tame. To me though she was an angel, the gentlest, most caring person I have ever met. She only worked 4 nights a week.
Those were the only nights I could sleep. Only when they were on duty could I sleep and sleep I did. One night I woke and both of them were there. They were praying over me. They really didn’t know me. It would have been easy to pass me by. I was a stranger and they took me in. I didn’t ask. I couldn’t ask. God sent me angels.
He has provided. He has sent us angels of every description. We have angels who shovel when it snows, angels who find paths for us when all we can see are walls. There are medical angels, angels who have helped us with money, angels who paint, angels who help in so any ways.
Even when we couldn’t find a church that fit just right, that didn’t seem to speak to us. God didn’t let us quit looking.He sent us this little church and a few more little angels!
Definitely sounds like you can relate to Job. (Personally, my favourite book of the Bible, lotsa laughs in it too if you have the right sense of humour )
I don’t have any questions, just wanted to say hello, Blinkie.
As an atheist I can’t relate directly to the experience of finding solace in religion. However, I mention this only because as an atheist, this is about the strongest argument I can imagine for letting believers have their beliefs without derision. It’s situations like this – and like tons of others – that actually make me feel glad that someone has something to cling to and give them hope and pull them through, especially at points where life is at its most traumatic and hardest to cope with.
What you wrote for your church reminds me very strongly of the song Todd Rundgren wrote about Stephen Hawking on his album “Nearly Human”:
*Whenever I
I close my eyes
Then I don’t mind being the way I am
But whenever I try
Explaining why
I know I never can
Now that it’s
Gone, paths I used to travel
Gone, things I used to handle
Gone, once I had a choice what to be
But then god kissed me
And I lost it when I fainted in his arms*
Blinkie - as a Christian that has also found solace in faith (although I have not been tested to the same extent you have) I just want to say what an inspiration you are.
I firmly believe that this is what God means by “planting the seed” - not by trying to beat a message into people’s heads, instead by showing by example how we are blessed.
Thank you…
From what I recall, insurance is the biggest issue.
That’s cool. When I was reading blinkie’s essay I thought the same thing - “all those atheists who think us Christians are so stupid for believing in God should check this out. This is the core of what God and religion means to us.”
Thanks for admitting that, Mindfield. Makes me feel a whole lot less embarrassed to be a Christian around here.
My pleasure. I admit that I harbor some cognitive dissonance where my arguments against religion clash with my arguments for “whatever gets you through the day,” but when I read a post like blinkie’s, it reminds me that there are sometimes far more important things than being right or proving a point. It’s a reminder that, whatever else I may think of religion, there are those that it helps immeasurably, as, were it not for his faith, he may not have made it here to share a part of his life with us. That trumps petty arguments every day.
boy!!
I sure didn’t want to start about religion but, and maybe I should post on Great Debates, my relationship with religion is tortured to say the least.
Although I do attend a small, VERY progressive church I think of myself more of a theist than “Christian” To me, someone that works for something like Doctors Without Borders, gets into heaven (if there is one), if he’s an atheist, Hindu, Buddhist etc.
I don’t find solace in my religion although many of my Locked In friends do. Mindfield I’m embarrassed by what passes for “Christianity” these days. Unfortunately the Right has drowned out the Christian Left.
ZipperJJ
Think it’s lonely here try posting on dKos.
MsWhatsit
The therapy I get is really for maintenance only.
EvilTOJ
My kids tried to get me to go trick or treating once, when Chris Reeve was alive, as Superman but that was a bit much for me.
I guess I should have been worried about being buried alive but I wasn’t. Guess I was too sick to care.
Gaffa
Therapy takes place in my house and I make him watch Jon Stewart and Colbert. It makes him apoplectic.
I was really liking you and your posts before. Now I’m LOVING them. That’s the best thing I’ve heard all day!
Me too. Being locked in and still figuring out a way to prank people! You’re my hero, blinkie.