Chuck's story…

Anecdotal evidence is never a game-changer unless the subject of the evidence is a great friend who has accomplished so many things in his life and has made the best out of a crappy hand life dealt him. Then, sometimes.. not always but sometimes.. that kind of evidence strikes the right cord in the right people and then change really does come.

I’ve tried to give you guys the examples of people I knew, in the hopes that you may have known people like them and/or could feel the desperation of their situation and maybe want to find a way to help them, but I failed in bringing the people I was targeting over to just the idea that change is needed, much less my idea of what that change should be. But maybe this time, with the example being someone we all know, we all respect and care for.. maybe this is the straw that breaks the camels back for some people and maybe some of those will go on to help fight for what is desperately needed in this country, instead of trying to kill any hope at all of a reprieve for those that are stuck in a situation they had no control over.

Even though he gave me permission, I  still thought about changing the name in this piece and just sticking to the story. I knew that even with omitting the name most of us would know who I was talking about with just one or 2 words about him so there was no need for him to be anything other than anonymous to the rest, but I don’t want him to  be just another blind example, I want you to say his name in your head when you are fighting against health care reform. When you look at the words of the President

But what we can do is make sure that at least some of the waste that exists in the system that’s not making anybody’s mom better, that is loading up on additional tests or additional drugs that the evidence shows is not necessarily going to improve care, that at least we can let doctors know and your mom know that, you know what? Maybe this isn’t going to help. Maybe you’re better off not having the surgery, but taking the painkiller.

I want the name Chuck Conners aka Uselesslegs in your thoughts when you blithely mock  this very real problem in our very broken system. I want Chuck’s story in the forefront of your brain, when you argue that we have the best care anywhere, that there is no such thing as that silly concept of doctors charging for a surgery when you only need a pill.. I want you to tell Chuck’s story to a friend or family member, and then explain to them why President OBama and the Democrats are just trying to kill this country and kill our ‘wonderful’ healthcare.

Before I continue, after Chuck told me his story and I started writing it I realized that this is the story for not having a public option, this is the reason why the government shouldn’t be in the medical insurance field. I know that there are blind loyalists  out there who will miss the point of this story and only latch on to the easy part of the problem, they’ll do this because they don’t have the intellect to see the big picture, they are the ‘death panelists’.. and ‘birthers’…the ideologue,  to them I will just nod and say “Yes Dear”.. I  was worried about writing this because the lack of brain mass some of these people have is more than made up by their vocal abilities and abhorrent behavior, but if I want to be true, if I want to be honest.. this type of story should never happen. It should not happen with private  or government run care. We need reform and anyone not seeing that, or not seeing that this is also a problem in the private sector needs to just go build another sign and leave the serious matters to the adults to figure out.

First a little back story for those that don’t know. Chuck has muscular dystrophy and it has progressed so over the past few years that he is completely dependent on a wheelchair to get around and someone to help him in and out of it. At 42, he’s already lived well past anyone’s guess…and he’s done so with a kind of dignity,humility and humor that I never knew existed. Chuck understands that people are uncomfortable with the disabled,  we don’t know how to act, where to look, what to say, so Chuck takes it upon himself to break that uncomfortable moment with a self deprecating joke or a well-rehearsed fart noise. My oldest daughter was one of the people he endeared himself to immediately with his ‘ice-breaking’. She knew of him and his disability, but she didn’t know of his humor..yet. When he called my house and she answered, she very innocently asked “How ya doing Chuck?”.. His reply was a simple scream “I”m in a wheelchair.. HOW DO YOU THINK I’M DOING!”. She immediately stared to cry because she thought she had done something to offend him, she was in the act of throwing the phone at me and spilling the story out when I couldn’t control my laughing any longer, I told her to listen to the phone, and there was Chuck laughing while at the same time trying to soothe her into knowing he was just kidding around with her. He hadn’t joked with her to be mean to her, but he knew, like all people in his or similar situations know, that us ‘normal’ people just don’t know how to react to them. He taught not only her, but my younger daughter, that it’s ok to look at someone in a wheelchair, or someone who is disabled, it’s ok to talk with them and be relaxed around them.. He taught them that it’s ok to treat them as normal and to laugh with and enjoy them just as they would anyone else. For that I say Thank you, because I didn’t learn this ease and comfort until I was much much older and Chuck was the one who taught it to me also.

But, the perfect example of Chuck and the way he looks at life is right there on the back of  his car, his registration tag, which simply reads…. “Gimpy”. The humor in that one word sums up the man that’s sitting the wheelchair inside that van.

When you hear Chucks life story, you can’t help but wonder what it would have been had he been physically ‘normal’, personally I don’t think he would have been as colorful, as funny.. and unique, what God took, he gave back in other ways.  The stories he can tell you about how his father scared him with a tarantula, how because of the ‘fear’ practical jokes his father would play on him, he ‘accidentally’ hit his father in the head with hammer to save his older brother, the teenage girl who peed on his couch when a stuffed squirrel was thrown at her, and my family’s favorite.. when his poncho got stuck in the wheels of his wheelchair and he was stuck going in circles until his companions could stop laughing long enough to extricate him.. These are the stories that make him who he is and had he not had a debilitating disease, I wonder if would he have had the same sense of humor?

At one time Chuck was THE Jerry’s Kid. His face graced many a magazine and poster. Not only was he part of the Jerry Lewis MDA Telethon’s we all used to sit around and watch all weekend, but he was also the youngest Jaycee and was an honorary member of the VFW. He’s made the best of what was given to him, but even with all of the support he was given by all of these great and selfless people and an amazing organization, if it wasn’t for the Medicaid/Medicare program, he wouldn’t have lived past his early teens.  The Muscular Dystrophy Association helps with what they can, but they are not equipped to deal with it all.

For people like Chuck, the idea of a private insurance is laughable.. to them, the idea that a government run system would destroy what this country was built on, is an insanity. It’s because of medicaid/medicare that people like Chuck aren’t regulated to some orphanage or ditch out behind the woodshed. It’s Medicare/Medicaid that pays for his medicine, his doctors, his wheelchair. It was medicaid that came into his house recently and installed rails on his ceiling for a ‘body lift’ that can take him from his bed, to his toilet, to his bath. Until that day earlier this year when the rail was installed, Chuck  hasn’t had an actual “bath” in years. Showers and sponge baths, sure, but a tub bath? No.  He doesn’t measure life in grand increments, he’s never been able to, but to be able to finally sit down in a tub was a grand day for him.

It wasn’t until the other day that Chuck also found out just how horrible our system really is. Government run or not, he found himself in a pile of shit with no way out of it.   The sad part is that I’m not exaggerating or hyper-ventilating hyperbole..

Chuck’s mother moved in with him some years ago when it became apparent that he was going to start needing more intensive around the clock care. He’s been able to do for  himself for so many years, but his disease isn’t one that goes into remission or gets better over time, even the strongest or most lucky eventually fall victim to disappearing strength due the shrinking muscles. It’s because of his mother that he doesn’t need a daily visiting nurse, or God-forbid to live in an assisted living facility. It’s also in my opinion what has kept him going all these years, had she been like other parents who just couldn’t do it anymore and put him in a state run, or if by some stroke of luck, privately  funded assisted living care, disease and disregard would have killed him years ago. It’s not that these places would have necessarily treated him poorly,  but it’s just the nature of the beast that they zap  your will to live in small increments over time and then there is the spread of colds,flu’s and other disease that affects someone like Chuck so detrimentally and are so rampant in the close confines of these homes. Yes, it’s my belief that his mothers sacrifice all these years has lead to his longevity, not just in the extended  years of  his life, but in the life he has lived over the years. A nursing home would have curb his spirit, his joy, his imagination.. it would have killed what makes Chuck, Chuck.

A couple of weeks ago Chuck’s mom was struck by an acute illness that required emergency surgery, which required an extended hospital stay and a long convalescence at home. In other words, now she needed to be cared for and not only was Chuck unable to do this in return for her sacrifice all these years for him, but his physical capabilities have deteriorated so much that he was left wondering who was going to care for him.  He knew that his brother would come up and help him once, maybe twice a week, but he was also painfully aware that there were going to be times when he would be in need of assistance and no one would be there to help. I don’t mean in need of showers or baths, cooking food to eat, or help getting into bed. No, Chuck has learned to go without a bath or shower and use a washcloth, he’s learned to eat whatever is handy in his line of reach, and as for sleeping.. well he can just roll his chair up to the dining room table and rest his head on his arms and get a few winks that way.  Things we all take for granted, things that are the extreme of simple to us.. well, he’s found his way to enjoy also. No, the help I am talking about is our own basic body functions..  urination and defecation.  Chuck has found a way around those too, he just stops eating and drinking.  But even this is not perfection.

Because he knew that he was going to need just a few minutes help each week until his mother had recovered, he called his medicaid office to ask for a visiting nurse or nursing assistant to come out 30 minutes a week to help him. Before I go any farther I want you to think about that. Try for a minute to think if you could limit yourself to a bathroom break at a predestined time, once or maybe twice during a 7 day period.  Do you have that kind of control, do you think it would be easy on a Monday to just say to  yourself  “Ok, I can’t poop again until Thursday at 9am” .  Welcome to Chuck’s world.

When he made his request to the insurance office, he didn’t ask for someone to come out every other day and bathe him, or every day to help him  on the toilet. Like I said, those things he’s been able to curb by not eating or drinking. But even the best starvation doesn’t keep you from having to use the bathroom for an entire week and he knew that. So Chuck’s humble request was for someone to come out once a week and help him with that problem, the rest of the time he would ration his food and drink and ‘hold it’ until his brother could come up on the weekend. The medicaid representative  was very helpful, she understood what he needed and told him she had just the thing for him.. a 90 day stay in an assisted living facility. Now, besides this being a death sentence for someone in Chucks condition, it was an absurdity to him because he didn’t need that kind of help, he just needed someone to come out and help him in and out of his chair for a couple minutes a week. He explained this again to the woman on the phone, but as sympathetic as she was, she couldn’t give him a visiting nurse or CNA.. she could only give him a 90 stay at his local old-folks home. Chuck, understandable upset, refused and then started the process of limiting his food,water and ‘holding it’…. and he almost made it.

It had only been a few days, he’d gone longer in the past, but whether it was something he ate that didn’t agree with him or whether nature just had to take it’s course, he failed in his attempted to not soil himself. It wasn’t much, just a little bit of a bowel movement, but it was enough that he knew he was sitting in his own shit and worse than that, there was nothing he could do about it anytime soon. Even if his brother came up right then, he was an hour away and Chuck would be sitting there in his own mess the whole time, and that is exactly what happened.

I’ve noticed that even the most ‘shy’ of us reach a point where it doesn’t matter who sees or smells what, we just need help and we need it right then. That’s the place were Chuck was, sitting in his own shit, waiting for his brother to come up and help wash him up. Help wash the area on Chuck off, was his clothes off and wash his chair off. What a humbling experience this must have been, it had to have the most humbling hour of his life. But it eventually came to the point where he didn’t care who came in and saw or smelled what… he just wanted help. He found out those moments waiting for his brother to come up and clean him, just what it meant that he was disabled. I’m know that through the years there had to be many other moments that came up and made him realize this fact, but I’m not sure that any humiliated him the way this time did.

The next day he again called and begged the insurance company for 1-30 minute visit a week so he could avoid a repeat of the day before, he was again denied. They would of course be happy to spend tens of thousands of dollars for him to unnecessarily stay in a 24 hr facility for 90 days, but no. .. they would not under any circumstances pay  $50-$75 a week for 5-6 weeks for a nurse to come to his home.

…and people say reform is not needed, that there is no waste in healthcare, that to cut any unnecessary procedures means a ‘rationing’ of care, that doctors don’t prescribe  that which is unnecessary over that which is needed in the name of greed and the all mighty dollar?

Chuck’s story has ended well, he finally got a hold of a worker who would listened to his sense that he didn’t need a 90 day,thousands of dollars treatment… he just need a 30 minute weekly visit. She set him up with not one, but 2 visits a week.

Whether it’s medicare,medicaid or private insurance.. reform is needed.  Had Chuck decided to take the medicaid office up on it’s offer, thousands of dollars would have been wasted when only a couple hundred were all that was needed. Those thousands could have gone to someone else care instead, someone who didn’t have insurance.. or 100 someone’s without insurance but in need of a flu shot this season. There are a million different ways that money could have been used properly, but because it is a Democrat asking for that reform, the psycho ‘right’ has an apoplectic  fit about him wanting to pull the plug on grandma, him wanting to stop seniors from getting hip-replacements and heart surgery or him wanting to kill of  the ‘damaged’ children of our society.

When a party says that the President who wants to talk to kids about the value of eduction and to stay in school is really trying to ‘indoctrinate’ them into a new version of ‘Hitler’s Youth’.. it’s time the adults stand up and tell these crazies to shut the fuck up already…the adults on both sides of the aisle. The sad part is the GOP’s lack of caring in all that is going on.  Some know that the fringe they are courting and allowing into the debate field are as bat-shit crazy as they come, but they know that they are also so desperate for an answer that if the Liberals are distracted enough by the insanity, they themselves will have time to actually come up with that answer. The crazies will eventually be throw out of the party,  the Conservatives aren’t that stupid, but until then the rest of will just sit in our chairs… not eating.. not drinking.. and praying that we don’t shit ourselves before our brother comes to rescue us from situation that we can’t just ‘pull our boot-straps up’ and get out of on our own.


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