Monday, September 14, 2009

A Young Woman's Message to the World

Allie was a little girl growing up in our neighborhood in Gaithersburg Maryland when we lived there several years ago. I knew her family casually, but did not know them well. I recently met Allie here in Utah as we volunteered for the same political campaign, a candidate we both believe will help to get things right in Washington.

Allie's brother, James, was born with an undiagnosed condition which has affected him and his family for all of his life. I think James would be in his late 20's or early 30's now. He recently fell from his wheelchair, broke his hip, and has suffered subsequent complications, in addition to the multiple problems that he lives with each day.

With her permission, I'm sharing this "Message to the World" that Allie posted on her Facebook page yesterday because I believe people like Allie know better than I what works for people in her family's situation. I hope you'll read it with your heart and feel moved to do something to make a difference for good in our country. If not us, then who? If not now, then when?

My Message to the World

Allie Winegar Duzett

As many of you know, my brother is very probably in the act of dying. And so, I feel a need to write an overall message to the world. But first, a recap of his issues:

- broken hip, which has been replaced but which reduces his mobility by about 100%
- pancreatitis, potentially incurable
- possible stroke
- cranial cancer
- rectum 1200% the normal size, last seen almost puncturing his lungs
- distended bowel
- atrophied esophagus
- muscular dystrophy
- missing gallbladder (yeah... awkward. just discovered this one today.)
- seizures every 2-5 minutes (grande mal, tonic, and all the other kinds too)
- possible cirrhosis of the liver
- potential osteoporosis
- bent spine (I know this has an official term, but I don't remember it--his spine is shaped to his recliner)

In addition, he is unable to talk; he has never been able to talk; he cannot communicate in any way; he does not respond to pain; and he requires diapers.

His overall condition is undiagnosed; we describe it as an undiagnosed chronic degenerative metabolic condition, essentially meaning that 1) we don't know what's overall wrong with him; 2) as time goes on, it gets worse; and 3) the overall condition has something to do with the inability to process nutrients.

People ask what they can do to help. My husband was asking what he could do to help earlier tonight, and I thought of something.

The obvious one is to pray. Right now, we're just praying for him to go peacefully. I invite you to join us in our supplications.

But the not-so-obvious one is to wake up--politically.

I know a lot of you probably think I'm crazy. My politics are unconventional for this age, and I am very passionate about them. But I want you to know that everything I do regarding domestic politics has its root in my brother, and everything I do regarding foreign policy has been influenced by my years living overseas with my grandfather, a former official for the United Nations.

My brother has taught me so much about life. About freedom: he has none. He can't choose anything in the world. He has taught me kindness, compassion; he has taught me to realize that just as people would never know that I have dealt with this grief every day of my life, I would never know how other people suffer every day. He taught me that we all have secret pains, secret sorrows that break us and break against us until we are either broken or strong. He has taught me what it means to have strength, and to fight back.

In the practical world, he has taught me that the government is largely incompetent. That they are the last people you should ever go to to solve a problem. The inspectors that come so frequently to observe our care of James--they are absolutely incompetent. We tell them James cannot speak, or sign, or communicate in any way and he never has been able to, and yet they insist on asking him all the moronic questions anyway. They WILL have these conversations with him, dang it! A normal person would be satisfied with the fact that James has never had a bedsore in his life. A typical government inspector probably doesn't even know what that would indicate.

I could tell you about the time we tried to sign him up for Medicaid, and they wouldn't let him until he'd signed up for the Selective Service. Yes, my 100% dysfunctional brother had to be enlisted in the Selective Service to gain access to the money his own parents paid in taxes to help the handicapped. Retarded? Yes.

I could tell you about how my parents had to start charging my brother rent to live with them, because otherwise the government wouldn't let them keep their own money to support their son.

Or I could tell you about how growing up, we never had much money, because so much of it went to James. I could tell you about wearing mostly hand-me-downs from other people, and about living on iceberg lettuce and cereal, and growing up in a neighborhood where every last soul picked on me and my little brother constantly, because we were white.

I could tell you about how even now, my parents each work multiple jobs, and while they make lots of money, most of it just gets siphoned back into James. We have a big house, but we got it at a discount because the previous owners took pity on us since it was the only house in the entire Village with the right floor plan for my brother's continued survival. The house is for him. We make a lot of money that goes right back into care for James--his medicines, his insurance, his babysitters, his schools, his therapy, the house we had to buy for him, our freakishly high water bills every month from having to wash every linen he owns practically every day without fail--but the government doesn't care. We are still taxed at obscene levels, because apparently we are "rich." Because the government doesn't give a damn about actual reality; it's all about the redistribution of wealth, to take from the "rich" to give to those "more deserving."

Please. Find me someone more deserving than my family. Find me someone more deserving than my family. I have been providing full personal care for my OLDER brother since I was eight years old--that was when I learned to use the gastric tube. I began changing his diapers when I was twelve. I cared for him every day after school every single day of high school. I have carried him in my arms; I have picked him up off the floor, despite the fact that until recently he's been bigger than me. Even now we are just the same size, although he's gotten pretty skinny. I have helped to plan his funeral multiple times. I have written music for it. My parents have worked 2+ jobs each just to keep our family afloat ever since I can remember. We're better off now than we ever have been financially, but that doesn't change the past, or the potential future. If the liberals of America get their way, my family will be screwed indefinitely.

And I will tell you why: because currently, our political climate is determined by the outliers--but only one set of them. You always hear about the welfare queens, the single mommies who were too selfish to marry before having kids; you hear about white-on-black racism and families too poor to afford health care because the parents never married, or they didn't graduate from high school, or they're too drunk and addicted to whatever to get a freaking job. Don't you feel sorry for those people? Don't you just want to steal from the rich and give to the poor to make their lives easier? The lives of those poor unwitting victims of that awful capitalism?

Here's who you don't hear about: the families that make a lot of money but who siphon all that money into medical care for their extremely handicapped children. The families who work hard and get their money taken away to pay for other people's illegitimate children. The families who struggle to make ends meet, and when they succeed, their "excess" is taken away for "the greater good."

And you don't hear about the racism so prominent in the black communities. I grew up thinking that people were just different shades of brown--lightish brown and darkish brown. It wasn't until kindergarten that I got my first taste of racism: when other kids parents' wouldn't let their children play with me because of the color of my skin. I tell you, the only time I've ever seen white-on-black racism was in Europe--never in America. Ever. But I've been the victim of the opposite since I was four years old.

I was an outlier in high school. People with high IQs are not really catered to in the public school system. I was bored in every class I ever took--in my life--and when I tried to graduate early every official known to man tried to stop me--because they needed my test scores. My guidance counselor sunk to the level of attempting to set me up with cute boys so I would stay. And yet, when I took night school to get my last English credit, I was surrounded by people who could barely read--who were all graduating early because the school wanted to help these poor losers get a head start on life.

My family is an outlier, too. We are just as much outliers as the welfare queens and the crack babies. But no one is standing up for us. We are outliers because we are honest; we are hard workers; we are smart and we sacrifice and prioritize. We plan ahead. We don't believe in taking advantage of others. And so, we are taken advantage of by the government and every self-righteous lib out there. I always say--I don't have a problem with people being Democrats; my grandparents have been Democrats. There are many good people who are registered Democrats. I have no problem with my own self voting Democrat. The problem is liberalism. I could vote for a Dem, but not for a lib. The problem is when other people think they know what's best for America, because they think they are just soooooo compassionate and smart, they know better than anyone else what's best for Americans. And that is the attitude that makes up liberalism.

Well, how about this? How about making the government butt out of "equalization" of the economy, so people like my family can actually take a breath for once? The redistribution of wealth is killing us, and I don't care if you think promiscuous minorities are more worthy of our money than we are. You need to tune into reality, because these "progressive" policies are tearing down the people who should be encouraged most to succeed.

And who are you to say that my family deserves to succeed less than the family of crack addicts who chose to sleep around and spend recklessly and all the rest? Who are you to decide who should keep MY money?

The fact is, no matter what, some people will suffer. Under a capitalist system, people suffer because of their choices. Under a socialist system, people also suffer because of their choices. The difference is that under a capitalist system, people suffer when they make stupid choices. When they decide to sleep around, they pay for it by dealing with the consequences out of their own pocket. When they decide to fail out of school, they pay for it by not being able to get jobs to support themselves. On the other hand, capitalism rewards people naturally for being smart, for working hard, and for trying.

Under a socialist system, those who produce, who try, who work, are exploited for the gain of society's losers. People are punished for working hard; they are punished for trying to succeed. In the short term, the morons who waste their lives with TV and addiction benefit, and in the long term, no one benefits, because eventually the producers just give up. Eventually, Atlas shrugs--and when he does, the world rolls right off his shoulders to shatter on the floor of the universe.

Right now, we are living in a partially-socialist system that is already taking its toll on millions. Here is your choice: you can choose to go all the way with either system. You can choose one that rewards producers and lets those who fail, fail; or you can choose a system that rewards failures and taxes to death those who produce. It is YOUR CHOICE. It is all up to you.

And I will tell you, the lives of people like my brother are in your hands. The lives of my parents are in your hands. My mother has stressed herself into Hashimoto's disease from working so hard to care for my brother under these political conditions. She could literally die from it at any time, if she forgets to take her medication. Never thought I'd see the day that my mother might die before my older brother. And my father has developed degenerative disc disease from it all--from working so hard to keep my brother well and healthy and taken care of. They are good people who work hard to honestly pay for their son's medical care. They work all day, and half the night, and spend the rest of their time caring for their son. Will you really turn around, and knowing all this, seriously vote for yet another tax-and-spend liberal Democrat whose only goal is to blindly tax the "rich" without even considering that the so-called "rich" are people too, with problems of their own?

This is my message to the world. Grow up. If you've never cared about politics before, start caring. This is your future. The crap going on in Washington is your future. Right now, debt and corruption is the future we're all looking at, and if we get it, it will be YOUR FAULT. Don't give me any crap about how you don't have time to get involved, or it's too hard to learn the history of how we got here, or it's too tough to keep up with current events. You have time for what you make time for and people's lives and livelihoods are at stake. Do you not get this? What kills me is when my best friends say they care about me, and about my brother, and then don't even bother to lift a finger when major legislation goes through that would seriously further damage our already foul situation. EARTH TO EVERYONE: LAWS MATTER! LAWS AFFECT PEOPLE! LAWS AFFECT MY DYING BROTHER, YOUR DYING GRANDMA, YOUR FUTURE CHILDREN AND MOST IMPORTANTLY, YOU! And the fact is, either you care, or you don't. If you care, you're the one marching in the TEA Parties, emailing your congresspeople and talking to your friends about this stuff. If you don't care, you're the one making pathetic excuses not to get involved or informed.

Those who don't care are the fence-sitters, the ones the Bible says God will spew out of His mouth in disgust. Sucks, huh? And if you don't believe in the Bible, believe in this: you are the one we will all look down on when either side wins. Because the strong take sides and fight. The pathetic sit and make excuses.

Here is a fact: it doesn't matter what side of the aisle you're on--if you knew what was actually going on in Washington, you would be outraged. You would be ashamed. You would be embarrassed for your votes. I know good people who have liberal views--and all good people know that corruption is wrong. Hi. We are operating under a grossly corrupt political system and no one can seriously deny that. Everyone should care about that. And furthermore, we should all care enough about that to take a stand for it. So here are the real questions--

Who are you?

What do you believe?

Do you believe in freedom, or do you believe in government control?

Do you believe people should deal with the consequences of their actions, or do you believe that it's society's job to prevent anyone from dealing with their own foul mistakes?

Do you believe that people know what's best for themselves and their own families, or do you think the government actually knows what's best for you and yours?

Have you seriously researched every aspect of the issues at hand? Have you bothered to look at the other side of the stories?

The fact is, either you're fighting for your freedom, or you're not. Either you're fighting for the rights of the handicapped, or you're not. Either you're standing up for truth, or you're not. So where are you? What are you even doing?

Where you will stand when it comes to my brother?

And you know, if this post is too controversial for you, I invite you to please unfriend me. I don't need fairweather friends attacking me on a stupid networking site while my brother dies.

If you'd like to know more about what it was like to grow up in my particular situation, let me know--I've been working on a memoir and it would be great to see how many people would be interested in reading it. I hope it doesn't make me a narcissist to think that perhaps the world could gain a thing or two from learning about the things I've lived through.

And in the meantime, please ponder these things. Open your mind a little. Today, millions of Americans participated in the making of history with our 9/12 March on Washington. Where were you?

If you were among them, I commend you. And if you were not, I beg you to please choose today. Take a side and fight. For as it's written in Ephesians, "we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places." Things are going on today that you should know about--and if you don't, it's because you are choosing to remain in the dark. The information is there and waiting for you to find it. There are things you can do today to make a difference. So where do you stand?


  1. Welcome back Pam, and thank you for sharing Allie's and her brother's story with us.

  2. I only got through about half of this. Not because it's poorly written, it's not, it wonderfully written. But just because I'm unconscious on my feet. Will read the rest tomorrow. Thank you for posting this, Pam. Thank you for being my friend. Thank you for caring so much and for working to make things better.