Today I was a bit of a slave to my ostomy. I had to change it again this morning because that sore started bleeding a bit. The good news is although it was bleeding, it did look better than yesterday. But, of course, this little bleeding episode happened right as I was trying to get ready for church. They’re going to start to wonder who I am down there!
I thought about trying to go and just being late – but to be honest, the best thing I could do for this ostomy issue is not to have to pull another bag off and tear the skin even more – the best thing I could do was to lay still for a while.
So, instead of church I listened to part of a sermon on the radio. Not liking it very much (not much into prosperity gospel focused on materialism) – I switched over to This American Life on NPR.
Years ago I listened to this show every week. Each week they have a topic, and they invite their stable of writers to write about it. I quit listening to it a few years ago because, frankly, it was getting too predictable. Instead of This American Life, it was sort of getting to be This Chicago Life – or maybe, This Hip Liberal Life. Don’t get me wrong, I’m a liberal right in there with the best of them – but at the same time it’s a perspective not shared by everyone. In my mind, the best media reflects true diversity. The best thing about “the American Life” is how varied it really is.
Today, however, I really did enjoy listening to the show – maybe I’ll have to start again. Today’s subject was “Houses of ill repute.” The interpretations on the theme varied a lot! (which I loved.) One guy did an essay on the rules in the House of Representatives and how they’ve changed over the years. He was really even handed about it – Republicans whined about Democrats, and Democrats whined about the last 12 years under the Republicans – the sort of argument where it becomes clear no one is really totally innocent.
Then there was an essay about an old man whose house sort of got taken over by prostitutes – basically because he was really lonely and vulnerable and could never say no to anyone. It wasn’t like he was pimp trying to run a brothel or anything like that – he saw himself as trying to help these girls. The problem was he needed as much help, or more, than any of the girls did.
The story got me thinking about some of my first apartments.
My first apartment was in student housing at the University of Kansas. After living in the dorms before and during my colitis episode – I actually refused to go back to school if I had to live in a dorm. Dorm life really didn’t agree with me, probably in large part because of my health issues looking back. I felt crappy a lot of the time, and other college kids coming in and out at all hours of the night, stereos etc. – you could never count on when it was going to be quiet or when you’d be able to sleep. When you’re not well, this is a much bigger deal than it is to the average 19-something person.
The other issue was with the ostomy, I wanted my own bathroom. At KU at the time, all the dorms had community bathrooms on the floors. There was no way I was going to do that.
So, the University of Kansas offered me an apartment in Jayhawk Towers where the graduate students lived. It was awesome! First off, I think because I’d made the request based on medical need, they perhaps misinterpreted and put me in the apartment they’d created to make the towers complaint with the Americans with Disabilities Act. What a deal! The apartment was brand new. It was essentially two apartments put together. We shared a hallway and a kitchen, but otherwise they were completely separate.
In my entire, post graduate adult life I’ve never lived in such a nice apartment! When they made a kitchen that was wheelchair accessible and put the two apartments together to do that, I don’t think they recorded in their housing office computer that this meant there were four bedrooms in this apartment instead of two. The entire time I lived there I never had more than one roommate. I was very, very sad to graduate. Grin!
Thinking that I’d have no trouble finding a job, I sublet a one-bedroom apartment in a complex downtown after I had to move out of student housing. It was very small, but totally adequate for my needs at the time. The complex was okay – clearly built for students. When the lease ran out, however, they wanted to raise the rent and I couldn’t afford it.
I was living on SSI, which I think amounted to $465 at the time. They wanted $400 just in rent. So, I moved into “the pit.”
I found a basement apartment in an admittedly horrible building. Let’s face it – most buildings located behind strip clubs are not posh. I don’t think the carpets had been cleaned or replaced since the 1960s.
It was a one bedroom apartment, but the rooms were a good size. By this time I’d figured out it could be some time before I find a job, so I was job hunting half the time, and trying to get freelance writing gigs the other half of the time to help build up my portfolio.
Living the same space you work in is tough. You start to feel like you never get away from anything. So, I decided to make the apartment a studio with an office – grin! I moved my bed into the living room, which actually worked out pretty well since I had almost no furniture.
I made the bedroom an office. At 8:00am every morning I’d “go to work” and at the end of the day, when I was finished, I’d shut the door.
To this day I’m not really sure how I made ends meet. It seemed like just when all hope was lost I’d sell a story and be able to pay another month’s rent.
My neighbors were an interesting host of characters. There were two apartments across from mine in the basement. One was occupied by an obvious pothead. I suspected he was selling drugs out of his apartment. Either that, or he had an amazing social life because people came and went at all hours of the day and night, and they never stayed longer than five minutes.
After moving me in, my dad tried to persuade me to take one of his guns to have in the house. I refused. My thinking is one should never point a gun at anyone unless you’re willing to actually use it. And can you imagine the disaster that could have happened if someone had scared me in the night? My mom simply sat and cried when she came to visit.
The other apartment, a studio half the size of my apartment, was occupied by an old woman, a middle-aged man (her son) and a five-year-old boy (her grandson.) The son clearly had a drinking problem, a very serious drinking problem. I remember once the cops came to arrest him for something, who knows what, and it took four of them to carry him out of the apartment kicking and screaming – one cop on each extremity. The grandmother worked 12 hours a day as a waitress at a diner. The grandson would have to spend his time after school every day at the diner because there was no child care.
He and I became fast friends.
He spent A LOT of time at my apartment. I was glad to have him, but at the same time, in this day and age, I was concerned that the adults in his life, who barely knew me, never seemed to mind.
He’d come over to my apartment in the evenings to watch cartoons because they didn’t have a television. We’d bake cookies and I’d let him build forts on my couch with blankets. He was really upset when I moved out – and I felt about six inches tall leaving him behind.
To this day I think about him and wonder what ever became of him. When I moved out there was a social worker involved and I think a possible move into foster care was in the cards.
Finally, after a year of rejection and discrimination, I got a part-time job in Kansas City in the suburbs. The income from that job, coupled with my continued freelance work, was an improvement over the SSI – but without health insurance, I was constantly playing this game of trying not to make too much money in a single month or I’d lose my health coverage. I didn’t know I had HPS then, but I did have $200 worth of medical supplies to buy every month.
A few months ago I calculated that so far I’ve spent about $39,000 on ostomy supplies since my surgery – with insurance part of the time and part of the time I had insurance that didn’t cover the supplies. I’d easily own a house today were it not for ostomy supplies.
I found a very small, but very nice, one bedroom apartment within walking distance of work. The complex was very nice with a pool, tennis courts and a walking trail and park surrounding the property. My dad and Ryan came to help me move, and as we pulled the U-haul truck into the complex, Dad burst into a chorus of “We’re a mov’in on up….” It felt that way – the apartment might have been the size of a postage stamp, but if there were any pushers in the neighborhood, they were smart enough to be more discrete about it. GRIN!
I thought about trying to go and just being late – but to be honest, the best thing I could do for this ostomy issue is not to have to pull another bag off and tear the skin even more – the best thing I could do was to lay still for a while.
So, instead of church I listened to part of a sermon on the radio. Not liking it very much (not much into prosperity gospel focused on materialism) – I switched over to This American Life on NPR.
Years ago I listened to this show every week. Each week they have a topic, and they invite their stable of writers to write about it. I quit listening to it a few years ago because, frankly, it was getting too predictable. Instead of This American Life, it was sort of getting to be This Chicago Life – or maybe, This Hip Liberal Life. Don’t get me wrong, I’m a liberal right in there with the best of them – but at the same time it’s a perspective not shared by everyone. In my mind, the best media reflects true diversity. The best thing about “the American Life” is how varied it really is.
Today, however, I really did enjoy listening to the show – maybe I’ll have to start again. Today’s subject was “Houses of ill repute.” The interpretations on the theme varied a lot! (which I loved.) One guy did an essay on the rules in the House of Representatives and how they’ve changed over the years. He was really even handed about it – Republicans whined about Democrats, and Democrats whined about the last 12 years under the Republicans – the sort of argument where it becomes clear no one is really totally innocent.
Then there was an essay about an old man whose house sort of got taken over by prostitutes – basically because he was really lonely and vulnerable and could never say no to anyone. It wasn’t like he was pimp trying to run a brothel or anything like that – he saw himself as trying to help these girls. The problem was he needed as much help, or more, than any of the girls did.
The story got me thinking about some of my first apartments.
My first apartment was in student housing at the University of Kansas. After living in the dorms before and during my colitis episode – I actually refused to go back to school if I had to live in a dorm. Dorm life really didn’t agree with me, probably in large part because of my health issues looking back. I felt crappy a lot of the time, and other college kids coming in and out at all hours of the night, stereos etc. – you could never count on when it was going to be quiet or when you’d be able to sleep. When you’re not well, this is a much bigger deal than it is to the average 19-something person.
The other issue was with the ostomy, I wanted my own bathroom. At KU at the time, all the dorms had community bathrooms on the floors. There was no way I was going to do that.
So, the University of Kansas offered me an apartment in Jayhawk Towers where the graduate students lived. It was awesome! First off, I think because I’d made the request based on medical need, they perhaps misinterpreted and put me in the apartment they’d created to make the towers complaint with the Americans with Disabilities Act. What a deal! The apartment was brand new. It was essentially two apartments put together. We shared a hallway and a kitchen, but otherwise they were completely separate.
In my entire, post graduate adult life I’ve never lived in such a nice apartment! When they made a kitchen that was wheelchair accessible and put the two apartments together to do that, I don’t think they recorded in their housing office computer that this meant there were four bedrooms in this apartment instead of two. The entire time I lived there I never had more than one roommate. I was very, very sad to graduate. Grin!
Thinking that I’d have no trouble finding a job, I sublet a one-bedroom apartment in a complex downtown after I had to move out of student housing. It was very small, but totally adequate for my needs at the time. The complex was okay – clearly built for students. When the lease ran out, however, they wanted to raise the rent and I couldn’t afford it.
I was living on SSI, which I think amounted to $465 at the time. They wanted $400 just in rent. So, I moved into “the pit.”
I found a basement apartment in an admittedly horrible building. Let’s face it – most buildings located behind strip clubs are not posh. I don’t think the carpets had been cleaned or replaced since the 1960s.
It was a one bedroom apartment, but the rooms were a good size. By this time I’d figured out it could be some time before I find a job, so I was job hunting half the time, and trying to get freelance writing gigs the other half of the time to help build up my portfolio.
Living the same space you work in is tough. You start to feel like you never get away from anything. So, I decided to make the apartment a studio with an office – grin! I moved my bed into the living room, which actually worked out pretty well since I had almost no furniture.
I made the bedroom an office. At 8:00am every morning I’d “go to work” and at the end of the day, when I was finished, I’d shut the door.
To this day I’m not really sure how I made ends meet. It seemed like just when all hope was lost I’d sell a story and be able to pay another month’s rent.
My neighbors were an interesting host of characters. There were two apartments across from mine in the basement. One was occupied by an obvious pothead. I suspected he was selling drugs out of his apartment. Either that, or he had an amazing social life because people came and went at all hours of the day and night, and they never stayed longer than five minutes.
After moving me in, my dad tried to persuade me to take one of his guns to have in the house. I refused. My thinking is one should never point a gun at anyone unless you’re willing to actually use it. And can you imagine the disaster that could have happened if someone had scared me in the night? My mom simply sat and cried when she came to visit.
The other apartment, a studio half the size of my apartment, was occupied by an old woman, a middle-aged man (her son) and a five-year-old boy (her grandson.) The son clearly had a drinking problem, a very serious drinking problem. I remember once the cops came to arrest him for something, who knows what, and it took four of them to carry him out of the apartment kicking and screaming – one cop on each extremity. The grandmother worked 12 hours a day as a waitress at a diner. The grandson would have to spend his time after school every day at the diner because there was no child care.
He and I became fast friends.
He spent A LOT of time at my apartment. I was glad to have him, but at the same time, in this day and age, I was concerned that the adults in his life, who barely knew me, never seemed to mind.
He’d come over to my apartment in the evenings to watch cartoons because they didn’t have a television. We’d bake cookies and I’d let him build forts on my couch with blankets. He was really upset when I moved out – and I felt about six inches tall leaving him behind.
To this day I think about him and wonder what ever became of him. When I moved out there was a social worker involved and I think a possible move into foster care was in the cards.
Finally, after a year of rejection and discrimination, I got a part-time job in Kansas City in the suburbs. The income from that job, coupled with my continued freelance work, was an improvement over the SSI – but without health insurance, I was constantly playing this game of trying not to make too much money in a single month or I’d lose my health coverage. I didn’t know I had HPS then, but I did have $200 worth of medical supplies to buy every month.
A few months ago I calculated that so far I’ve spent about $39,000 on ostomy supplies since my surgery – with insurance part of the time and part of the time I had insurance that didn’t cover the supplies. I’d easily own a house today were it not for ostomy supplies.
I found a very small, but very nice, one bedroom apartment within walking distance of work. The complex was very nice with a pool, tennis courts and a walking trail and park surrounding the property. My dad and Ryan came to help me move, and as we pulled the U-haul truck into the complex, Dad burst into a chorus of “We’re a mov’in on up….” It felt that way – the apartment might have been the size of a postage stamp, but if there were any pushers in the neighborhood, they were smart enough to be more discrete about it. GRIN!
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