Back in April, I wrote a post about why the thought of Mitt Romney as president scared the living hell out of me. I talked about the Paul Ryan budget, how it slashes social safety net programs, and how, if enacted, would essentially make what I do here with J impossible.
You may have noticed that Paul Ryan is now the Republican candidate for Vice President. While there are at least five instances of Mitt Romney supporting and agreeing completely with the Ryan budget, there is also video of him saying that he has his own budget that isn’t the same as Ryan’s. At this point, nobody really knows what the hell Mitt Romney actually stands for, but last night, former President Bill Clinton spoke at length about the Republican ticket and their budget policies.
He reminded everyone that the Ryan budget will not only change Medicare to a voucher system for everyone under 55, he brought up something else that no one has really been talking about. It also cuts Medicaid spending by 1/3.
Clinton stated, and the fact checkers have verified, that two-thirds of Medicaid spending goes toward nursing home care for the elderly and people with disabilities and serious illnesses.
The money my husband and I get paid for taking care of my brother comes directly from the Medicaid Waiver program. His medical equipment, including his electric wheelchair and communication device, as well as the Chux, adult briefs, catheter supplies, and co-pays for medical services and medications that Medicare doesn’t cover also come directly from the Medicaid program.
In my April post, I gave a lot of details about the costs associated with taking care of J. About 3/4 of the money we get paid working with J goes directly toward the expenses of taking care of him. Our added costs for housing, utilities, monthly fuel bills, insurance, medical care, travel expenses, cleaning supplies, and other out-of-pocket expenses for J’s needs amount to well over $1000 a month.
When you figure in how much it would cost us to pay out-of-pocket for medical equipment, medical supplies, and medications, the costs are astronomical. There is absolutely no way we could come close to covering the extra $1000 we already pay per month if it wasn’t for Medicaid. Trying to pay for the other stuff is a sick joke.
From the time I was a child, one of the most important values my parents instilled in me was that we take care of our family, no matter what the cost. My dad took over the family farm before I was born, and shared the income equally with his parents and brother, in spite of the fact that he did the vast majority of the work. He’s an excellent farmer, but it wasn’t exactly his dream job. He sacrificed his own dreams to make sure his family was taken care of.
My mother paid for my grandma’s medications and helped her out financially for years, and when Grandma was diagnosed with Alzheimer’s Disease, Mom took her into her own home and did her best to take care of her for two years until dealing with the strain became impossible. She wrecked her own health in the process.
So three and a half years ago when J became critically ill, my husband and I uprooted our family and moved 180 miles back home to take care of him.
We were faced with a choice between putting J in a nursing home, letting my parents try to take care of him themselves, in spite of the fact that they were both in their 60s and had health issues of their own, or moving back to take care of him ourselves.
So we moved.
I’ve written pretty extensively about some of the difficulties we’ve had, so I won’t go into it much here, except to say that it’s been hard. Trying to raise our three kids and take care of J, who was critically ill for the first year we lived here is the most difficult thing we’ve ever done. In fact, it was impossible to meet everyone’s needs. My kids were pretty much on their own, even though I was in the house, my marriage was put way on the back burner, and my own needs didn’t even figure into the equation for a long time.
It’s still a constant struggle to try to find a balance when there’s just too much to be done and not enough me to go around. A lot of the time, we’re just treading water, hoping we don’t drown.
Which leads me back to the Romney/Ryan ticket and politics. Mitt Romney and Paul Ryan are both pretty open about wanting to cut Medicaid and other entitlements. Ryan has talked about privatizing Social Security [another benefit that J gets, without which, we would have to pay for his food, personal care items, clothing, etc. out-of-pocket as well].
Basically, privatizing Social Security would mean giving SS money to the banks to invest as they see fit and try to grow the fund. We all remember what happened when the banks were given access to the money we had in commercial banks and allowed to use it for investment banking, right? In eight years, they managed to tank our entire economy.
Back in April, I basically bled all over my keyboard and wrote one of the most difficult posts of my entire life. It also signaled my official ‘coming out’ as a liberal to my family and friends, most of whom were, and still are, staunch conservatives.
Admitting to the people I loved most that I could no longer pretend to be something I wasn’t, in spite of the fact that all of them had passionately conservative political views, was not easy, to say the least. In fact, if I’d been able to quiet my conscience and continue to lie about it, it may very well have made my life easier, at least for the time being.
But at that point, I’d been hiding my spiritual, emotional, and political journey from almost everyone for years, and eventually, it just became too much. It felt like I was betraying myself and more importantly, my kids, by not speaking out and telling the truth.
I’ve always insisted that the one thing we ALWAYS do in our family is tell the truth. Honesty is so important to me that when my kids were little, I couldn’t even bring myself to tell them that Santa Claus was real because it wasn’t true.
I know that seems ridiculous, but for me, being lied to is the worst kind of betrayal, and under no circumstances was I going to do that to my babies. I don’t always give them every detail, but it’s always been a policy in our house that if the kids ask a question, I will give them an honest answer, no matter what.
Well, eventually, I realized that I was hiding a lot of myself from the people around me. I was always honest with Steve, and he stood by me and listened to me through all my struggles to figure out exactly what I believe and why.
I joined Facebook after we moved to take care of J in order to try to keep in touch with our friends in St. Joe, so it made sense to me that since cyberspace was the only place I could really go, I could tell the truth about my life on Facebook.
Well, it turned out you’re not actually supposed to talk about real stuff on Facebook. I suspect a better name for it might be ‘Maskbook’ or ‘Fakebook’ but whatever. Part of the transformation I underwent during that time included tearing away every mask I’d ever put on and learning to just be me. The real me.
I figured if I was going to teach my kids what it means to be honest, I needed to be honest with myself first, and then with everyone else.
Yeah, well. First and foremost, I’ve always been a dreamer.
One of the things I love most, and happen to be relatively good at is writing. I’ve been writing regularly through online journaling for eight years or so now. A lot of the stuff I write is crap, but some of it is good enough that when I go back and read it later, it doesn’t even seem like I wrote it.
I suspect this may end up being crap, but oh well.
I think initially, I used Facebook instead of the blog because I’d kind of burnt myself out on blogging. I also liked that there’s no counter on Facebook. Unless someone comments or hits the like button, you never know if anyone saw it or not. When you know people are reading your words, and you know how many, you tend to gauge ‘success’ by the number of hits.
So why am I back on the blog? Well, I’ve pretty much outworn my welcome on Facebook. It’s an election year, and I have some political opinions that are less than mainstream in my group of friends. I knew that going in, which is why I was so scared of posting about politics in the first place. It wasn’t so much that I wanted to piss everyone off, it was just that I felt like I’d spent so many years contorting myself into the person others expected me to be, I’d forgotten who I was.
And once I found myself again, the most amazing thing happened. I actually liked me! Go figure.
So, I began testing the waters and posting some opinions, and then I waited to see if people would leave my friends list in droves. For a while, they did. On the one hand, I get it. Everyone has preferences, and some people hate politics or stories about poop, so naturally, some people were going to leave.
It still kinda hurts, but I do understand. The times when I really had a hard time with the whole ‘Facebook De-Friending Drama’ is when someone would post a disagreement on my wall about something I’d posted and get irate when I defended myself. When you have an argument with someone, it takes longer than a day to forget about the disagreement, and when your friends list gets one number smaller, well, it’s pretty easy to figure out that someone got pissed and left.
I’ve always had issues with people storming off angry, so even on something as goofy as a Facebook Fight, it feels like unfinished business. It also reminds me of Jr. High, and when the people leaving in a huff are people you once respected as a mentor and friend, well, it’s a little harder not to take that personally.
I don’t mind debating, in fact, it’s something I enjoy immensely when it’s done properly. I love writing, and I love research, so learning things and sharing what I’ve learned is something that feels like flying to me. I enjoy having my opinions challenged, and I love it when people bring up points I hadn’t thought of and basically give me something else to study.
I don’t mind being wrong any more than anyone else does. It’s embarrassing sometimes, but the older I get the more I realize just how little I know about the world, so it’s a lot easier now than it was when I was younger.
One of the things I don’t deal well with, though, is when someone quotes a ‘fact’ that is demonstrably untrue and then refuses to admit that their statement has been thoroughly debunked. This is not how debating is supposed to work.
Everyone is biased, and a lot of people aren’t above using some spin, including me, but I do not deliberately quote lies and call them truth.
And when someone else does, it makes me irate.
And now we’re back to Romney/Ryan. Romney and Ryan have both been caught in outright lies. These aren’t your typical bias, distortions or spin, these are straight up bullshit fairy tales worthy of the National Inquirer.
The blatant, shameless dishonesty that has been exhibited by Mitt Romney and Paul Ryan just in the past couple of weeks would have been more than enough for me to either refuse to vote at all or switch parties if I was still a staunch Republican like the rest of my family.
However, even without the lies, there’s the fact of the Ryan Budget and what it does to Medicaid and Medicare. I am not lying or even exaggerating when I tell you that if J were to lose 1/3 of the money he gets for all the care he needs, we would not be able to afford to take care of him.
J’s life, and our lives, would end as we know it. We would lose our house. We would not be able to afford utilities or decent food. J has to have Ensure because he can’t chew, and his food cost per month is at least $200.00. On Steve’s income alone, our food budget for the five of us was about $300.00 a month. So without Medicaid, either J would go hungry or we would.
The house we could afford on Steve’s income alone in St. Joe was a tiny three bedroom, one bath house that was a whopping 927 square feet. We couldn’t begin to fit J and all of his stuff into that house with the rest of us.
This is real. If Mitt Romney and Paul Ryan win the election in November, and if their plan to cut Medicaid goes forward, they will be sentencing my family to a life of poverty. They will greatly shorten J’s lifespan, and they will put us in a position where we have to choose between taking care of J and taking care of our kids.
I am a mother first.
One of the things that has been so disheartening for me is how a few of my own relatives have reacted to my becoming a Democrat. The reactions have ranged from disappointment, to anger, to condescending arrogance, to accusations of being a Communist [now conveniently called ‘socialism’].
I’ve had to deal with being attacked personally, first on my Facebook wall, and then when I refused to be cowed on my own page, on their news feeds as rants and random Facebook memes that include how stupid and evil ‘liberals’ are.
I never dreamed I’d be a black sheep in my family, considering I’m a stable, happily married mother of three, who is also taking care of her adult quadriplegic brother, but here I am.
To find out that some of my own family values hearing what they want to hear and believing lies just because they back up their own ideas has been beyond infuriating to me.
To realize that people in my own family will vote for a man in November who will sentence me to an even more impossible life than the one I’m currently living is heartbreaking.
To know that some of the people in my family would rather hate President Obama based on nothing more than lies and spin from the worst news network in the history of television fills me with white-hot rage.
And I guess this is why I’m writing this one last [potential] Facebook political post, and why I’m finally talking about the people in my very own family who have treated me with less compassion, understanding, and mercy than I would expect from a stranger.
Some of the same people who showed me that when family needs you, you do whatever you have to do to make sure they’re taken care of, the people I’ve respected and loved since I was a child, are the people who now refuse to listen to me, accuse me of being a communist, treat me like I’m an idiot unworthy of anything but contempt, and in November, they will vote for a man who will choose to enact a budget that will very likely end my life, the life of my family, and the life of my brother as we’ve known it.
I know it’s crass to air dirty laundry on the Internet, and if I choose to post this on Facebook, I may very well burn some bridges with people I’ve loved all my life, but this is my reality. This is the anxiety, stress, and agonizing pain I live with every day. The people I believed would always be there for me have already shut me out, whether they realize it or not. Stubbornness and the need to be ‘right’ has taken precedence over any willingness to understand me and where I’m coming from.
People always say to ‘vote your conscience’ which is often a way to tell people to vote against abortion. Well, that’s your right, of course. But when you go defend the unborn, keep in mind that the candidates who would outlaw abortion are the very same people who believe that the life of my entire family is not worthy of consideration. That is the real choice you face.