Everyone Dies
from 
JoeUser Forums
JoeUser Forums
My brother has an immune deficiency. He needs a gamma globulin infusion every month. Each infusion costs $5000.
He's also got ADD. I hear he was a hellyun of a child, and I also have some memories of his crazy childhood behavior.
Medications for ADD and ADHD have been publicized a lot in recent years. Apparently those diseases (?) are common enough that everyone is taking it pretty seriously these days. I've been skeptical. I figured if kids have trouble paying attention in class, they're not cut out for the stiff classroom environment. They probably need more hands-on education, more stimulation, physical activity. As for adults with ADD, I'd never met one. Basically my opinion of ADD was that it described a person who didn't like to sit still for very long. Who can blame them?
But my brother has been staying with us for about a month. I tolerated his annoying behavior at first. Impulsive, loud, forgetful. There was just one household task I asked of him in exchange for his free room & board: take out the trash & recycling. I gave him a schedule of the pick-up days. But he's only remembered to do it twice of the eight times the collection has come around since then.
I was angry for awhile. "What a loser," I'd think. "Lazy moocher," those kinds of thoughts went through my head.
But you know what...? He's not lazy. And he's not a moocher. I've finally put all of his quirks together and it's clear to me now that he's simply not well.
He resigned from his last job that required a 3-hour commute up the mountain to Vail, Colorado. So that's a six hour round trip in the horrendous snow CO has been receiving this winter. Never mind the 8-hour work days. He resigned because those long, stressful hours were taking its toll on his already taxed immune system. Plus he had an eye infection that was getting worse because his immune system was weakening. He simply couldn't go on like that much longer
By the way, I'm to blame for his injured eye because one time when we were little, we got in a fight and I threw something at him that hit his eye and caused it to bleed. Oh, I forgot to mention that he's got glaucoma too, so his injured eye is much the worse for it. So I am largely to blame for his failing vision. He's gradually going blind.
So let's add all that up:
Failing immune system
ADD
Glaucoma (he's going blind)
He's staying with us now so we can help him get back on his feet. Saving up money for rent, a car (his car was killed by those uphill drives to Vail every day), and some seriously huge debts that really suck and aren't his fault at all. Long story.
He sleeps a lot. He told me he needs it because his immune system is weakening. I believe it. He's just not a young buck anymore. But he's only 33.
He told me he'd done some research on his condition, and learned that without the monthly infusions, people with the condition only live to their 20's or 30's.
Bottom line is he has no health insurance. He has no money. He doesn't have a home. He has no car. If he's going to survive much longer, he needs government assistance to cover his $5000 / month infusions.
Here's where the ADD comes in:
He was supposed to have an interview with the Social Security office last month regarding getting some government assistance for his health, but he needed copies of his medical records from the 6+ hospitals he's been to in the last few years. So he postponed the interview to get the records put together.
I was astonished and a wee-bit PISSED when the first thing he did after rescheduling the interview was to get on our internet to look up techno web sites and chat with his fellow techno musicians. Then upstairs he retreated to his PlayStation. I mentioned to him in a friendly manner, "Hey, these business hours during the week would be a great time to get your medical records together for your upcoming interview."
He glared at me and said sarcastically, "They would, huh?"
So I decided to let him worry about it himself. Nagging and reminding clearly weren't what he needed.
A few days ago I was tending to my baby in the living room, my brother approached me in a huff and handed me a piece of paper with some hospital names written on it. He said, "When you get a chance will you look up these hospitals and contact them for my medical records."
Since he appeared to be in a hurry I said, "Sure," and as he walked away I began to fume. I thought about it. He's procrastinated, spent countless hours dicking around on the internet and on his PlayStation for what...?!! To pass the buck to me because suddenly he didn't have TIME to get his medical records?!
At that moment I was going to blog out my anger toward him, but I held back. I dutifully got online, looked up the hospitals, and phoned each one, talked to live people, and requested his medical records. This took 30 minutes. I got it all done while my brother made himself a cup of coffee and breakfast.
I've been angry at him for his procrastination. His lack of planning. His lack of goal-setting. He's supposed to be saving money for the thousands of dollars he owes here and there, saving money to get out on his own again, but he's spending it on McDonalds and stuff. Yesterday I intercepted him before he was headed out to buy a new game for his PlayStation.
He's got ADD. I've thought it out and I truly recognize it as a disorder. He simply can't function like a responsible, goal-oriented adult.
His Social Security interview is tomorrow. Since his medical records were requested only a few days ago, he does not have them ready for his interview.
He's going to die if he doesn't get government support for his $5000/ month transfusions.
Gosh I sound like I'm petitioning for help. But nope, I'm not.
I heard him coughing last night, that familiar cough I grew up hearing. His cough is getting worse. I went out on a limb and pictured finding him deceased one morning in his bed. The thought became real to me. It could very possibly happen. Yuck.
OK, I thought a lot more than, "Yuck." I got a little teary. My older brother who knows me better than anyone else in the world, we've been through everything together, and what we haven't been through together, we've kept in touch and kept track of each other. Imagining him dead and cold. Sad, very sad. To think that I'll probably outlive him. It's a heartache hard to bear.
As I was laying in bed thinking about that, I looked over at my tiny baby daughter, sweetly sleeping and breathing peacefully. I thought, "Everyone dies. I just can't picture my little baby's life ever ending. She's so fresh, new, and healthy. And my life will end some day. I wonder how it will end. What a staggering thought. But of course I don't need to worry about that now. How precious life is, and what a short time we all have here on earth.... " thoughts like that.
I cherished the thought of our short lives and I'm going to be really nice to my brother now.
I might suggest to him that our Church would probably be able to assist in covering the cost of his infusions. But I don't want to talk about church with him. He'll probably bite my head off. I wrote an article a while ago about how my brother feels about religion, but JoeUser cyberspace ate it up. Probably for the best.
I gotta go now. Baby's crying. Toddler wants breakfast.
He's also got ADD. I hear he was a hellyun of a child, and I also have some memories of his crazy childhood behavior.
Medications for ADD and ADHD have been publicized a lot in recent years. Apparently those diseases (?) are common enough that everyone is taking it pretty seriously these days. I've been skeptical. I figured if kids have trouble paying attention in class, they're not cut out for the stiff classroom environment. They probably need more hands-on education, more stimulation, physical activity. As for adults with ADD, I'd never met one. Basically my opinion of ADD was that it described a person who didn't like to sit still for very long. Who can blame them?
But my brother has been staying with us for about a month. I tolerated his annoying behavior at first. Impulsive, loud, forgetful. There was just one household task I asked of him in exchange for his free room & board: take out the trash & recycling. I gave him a schedule of the pick-up days. But he's only remembered to do it twice of the eight times the collection has come around since then.
I was angry for awhile. "What a loser," I'd think. "Lazy moocher," those kinds of thoughts went through my head.
But you know what...? He's not lazy. And he's not a moocher. I've finally put all of his quirks together and it's clear to me now that he's simply not well.
He resigned from his last job that required a 3-hour commute up the mountain to Vail, Colorado. So that's a six hour round trip in the horrendous snow CO has been receiving this winter. Never mind the 8-hour work days. He resigned because those long, stressful hours were taking its toll on his already taxed immune system. Plus he had an eye infection that was getting worse because his immune system was weakening. He simply couldn't go on like that much longer
By the way, I'm to blame for his injured eye because one time when we were little, we got in a fight and I threw something at him that hit his eye and caused it to bleed. Oh, I forgot to mention that he's got glaucoma too, so his injured eye is much the worse for it. So I am largely to blame for his failing vision. He's gradually going blind.
So let's add all that up:
Failing immune system
ADD
Glaucoma (he's going blind)
He's staying with us now so we can help him get back on his feet. Saving up money for rent, a car (his car was killed by those uphill drives to Vail every day), and some seriously huge debts that really suck and aren't his fault at all. Long story.
He sleeps a lot. He told me he needs it because his immune system is weakening. I believe it. He's just not a young buck anymore. But he's only 33.
He told me he'd done some research on his condition, and learned that without the monthly infusions, people with the condition only live to their 20's or 30's.
Bottom line is he has no health insurance. He has no money. He doesn't have a home. He has no car. If he's going to survive much longer, he needs government assistance to cover his $5000 / month infusions.
Here's where the ADD comes in:
He was supposed to have an interview with the Social Security office last month regarding getting some government assistance for his health, but he needed copies of his medical records from the 6+ hospitals he's been to in the last few years. So he postponed the interview to get the records put together.
I was astonished and a wee-bit PISSED when the first thing he did after rescheduling the interview was to get on our internet to look up techno web sites and chat with his fellow techno musicians. Then upstairs he retreated to his PlayStation. I mentioned to him in a friendly manner, "Hey, these business hours during the week would be a great time to get your medical records together for your upcoming interview."
He glared at me and said sarcastically, "They would, huh?"
So I decided to let him worry about it himself. Nagging and reminding clearly weren't what he needed.
A few days ago I was tending to my baby in the living room, my brother approached me in a huff and handed me a piece of paper with some hospital names written on it. He said, "When you get a chance will you look up these hospitals and contact them for my medical records."
Since he appeared to be in a hurry I said, "Sure," and as he walked away I began to fume. I thought about it. He's procrastinated, spent countless hours dicking around on the internet and on his PlayStation for what...?!! To pass the buck to me because suddenly he didn't have TIME to get his medical records?!
At that moment I was going to blog out my anger toward him, but I held back. I dutifully got online, looked up the hospitals, and phoned each one, talked to live people, and requested his medical records. This took 30 minutes. I got it all done while my brother made himself a cup of coffee and breakfast.
I've been angry at him for his procrastination. His lack of planning. His lack of goal-setting. He's supposed to be saving money for the thousands of dollars he owes here and there, saving money to get out on his own again, but he's spending it on McDonalds and stuff. Yesterday I intercepted him before he was headed out to buy a new game for his PlayStation.
He's got ADD. I've thought it out and I truly recognize it as a disorder. He simply can't function like a responsible, goal-oriented adult.
His Social Security interview is tomorrow. Since his medical records were requested only a few days ago, he does not have them ready for his interview.
He's going to die if he doesn't get government support for his $5000/ month transfusions.
Gosh I sound like I'm petitioning for help. But nope, I'm not.
I heard him coughing last night, that familiar cough I grew up hearing. His cough is getting worse. I went out on a limb and pictured finding him deceased one morning in his bed. The thought became real to me. It could very possibly happen. Yuck.
OK, I thought a lot more than, "Yuck." I got a little teary. My older brother who knows me better than anyone else in the world, we've been through everything together, and what we haven't been through together, we've kept in touch and kept track of each other. Imagining him dead and cold. Sad, very sad. To think that I'll probably outlive him. It's a heartache hard to bear.
As I was laying in bed thinking about that, I looked over at my tiny baby daughter, sweetly sleeping and breathing peacefully. I thought, "Everyone dies. I just can't picture my little baby's life ever ending. She's so fresh, new, and healthy. And my life will end some day. I wonder how it will end. What a staggering thought. But of course I don't need to worry about that now. How precious life is, and what a short time we all have here on earth.... " thoughts like that.
I cherished the thought of our short lives and I'm going to be really nice to my brother now.
I might suggest to him that our Church would probably be able to assist in covering the cost of his infusions. But I don't want to talk about church with him. He'll probably bite my head off. I wrote an article a while ago about how my brother feels about religion, but JoeUser cyberspace ate it up. Probably for the best.
I gotta go now. Baby's crying. Toddler wants breakfast.
