Literary Agent

I took a shot at getting a literary agent yesterday, using this blog.  I sent him the link and asked if he thought it could form the basis for a book.  He didn't, but he was impressed enough with the writing to agree to look at my mystery novels.  I'm waiting to hear from him on that now.  It's a long shot, but he's with a very good agency.  He also seems to be a nice guy, so I'll be really happy if he takes me on.

True, I already have one agent, but she and the agency she's with only handles science fiction.  If I can get one to sell my mysteries, that would be a huge plus for me.  A good publishing contract could change my situation for the better.

Interesting Possibility

One of my main interests is our future in space.  I've been fascinated by space travel since Apollo.  I didn't see much point in Mercury or Gemini, but when Apollo actually went somewhere-- the Moon-- I was hooked.  I've published some articles on space policy, and I write a blog on space topics at http://www.thewayoutspace.blogspot.com/.

Last year, one of my articles published on a website caught the attention of a fellow who has a nationally syndicated radio show that discusses things space.  He emailed me and invited me on the show to talk about my article.  My speech is too poor for that, and I explained that to him.  I thought the opportunity was gone.

However, for the past few years, I've been an online buddy of Randa Milliron, CEO of Interorbital Systems, one of the companies trying to open space to commerce and free enterprise.  So, Randa was on this radio show recently, and I came up in conversation.   They decided it'd be cool if the show submitted questions to me, I would type out my answers, and someone would read my answers on the show.  I'm waiting to hear from this fellow.

This would be an interesting project.  It may open some doors for me.  Or maybe not.  Maybe we'll see soon.

Still Struggling

I had a good night last night, and I thought I'd turned the corner a few days before getting the final treatment of this set, but my bladder is acting up agaim today.  I wish to God I could get over this; I'm so tired of peeing all over myself, smelling my own urine, and ruining my own pants.

The aides here have been very good about helping me through this, though.  Unfortunately, because of the size of this place and the number of people they have to look after, the aide has gotten here, a few times, only after I've wet myself.  I can see this wouldn't be a huge deal for somebody who could get to the bathroom on his or her own, whenever that was needed, but the whole thing drives me a little crazy.  Having an aide with few other responsibilities in my own home would make these periods of my treatments a bit easier.

I promise to write about something else tomorrow.

A Matter Of Control

I had another cancer treatment Friday, and I'm still trying to get my urination under control.  Over the weekend, urinating was quite painful.  Today, it's been less painful, but I've been going extremely frequently.  I went through all my pants this weekend, so much so that my sister Kim and sister-in-law Angela brought my extra pairs of pants from home Saturday, and my brother Jeff bought me a couple new pairs Sunday.  I also went through all my Depends, and my aides have had to get me more from the nursing home's supplies.  In fact, I went again while writing this post, and now I'm on my last pair of clean pants again until they bring my pants back from the laundry.

My aides have been really good about it all through these past few days, but I find it incredibly frustrating.  It feels as though I have no control over myself, and I hate that feeling.  I can only hope this is the worst day, and tomorrow will be back close to normal.  I gripe to my family about this, and they tell me it's necessary to avoid something worse.  They're right, of course, and I'm thankful these treatments are all I have to do.  Still, I have fleeting moments....

Treatment Day

I had another cancer treatment today, the second in this set of three, and it went well.  Jeff and I got in promptly, and the technician who actually did the deed was very good.  She worked quickly and efficiently, and hurt me less than usual.

I'm now into the tough part, though.  Through the rest of today and tonight, I'll have many painful urinations and go through several Depends.  I'll also feel bad over the weekend.  If things go as they have in the past, I won't feel completely back to normal until this entire treatment set is well in my past.

Another Tough Day

Today, my lunch was late again, and I had to use the restroom.  I'd planned to wait until my aide brought lunch, but that wasn't working.  So, I was just about to hit the call button when she arrived with lunch.  I decided to eat lunch first, then go to the bathroom.  I got through lunch just fine, and then told her I needed the bathroom.  She said okay, then asked if I could wait while she took the food tray back.  I said I could.  I've worked with this aide many times, and she often asks me to wait while she does something else.  Usually, it's no problem, but I'm not at my best at the moment, and I wet myself before she got back, which took about forty minutes.  She was apologetic, told me it was her fault, and changed the Depends I'll be wearing for the next ten days or so.  It's still upsetting to wet myself, though.  It's a personal failure when I can no longer handle the pain.

I've also learned the aide on my evening shift is somebody new to me.  I don't need to be trying to deal with a new aide while I'm trying to deal with these cancer treatments and their painful aftermath.

In my own home, I wouldn't have to wait while my aide took the food tray back and got sidetracked by something or other.

Humiliation

Over the last few years, since Mom got to where she couldn't help me into the bathroom, I've lived in fear of having diarrhea.  Well, that finally happened this morning.  Luckily-- I guess it was luckily-- I'm still wearing Depends because of the cancer treatments, so it was pretty much contained.  My aide Charlene was really good about it. She was kind and efficient in cleaning me up.

It was still humiliating, though.  It goes back to my thing about losing control of myself, I suppose.  My Uncle Walt, who traveled a lot during his work, used to tell funny stories about when he got diarrhea on the highway, but this isn't funny to me.  And, of course, I still have two more cancer treatments in this current set.  It's going to be a long couple of weeks.

Another Step Forward

This morning, my brother Jeff and I met with my new case manager.  Jill Ginn of ARC was also here to help, and representatives from the nursing home also sat in.

It was a good meeting.  I now have money and a budget assigned to me, which allows us to start contacting providers that supply healthcare aides for home situations.  At the same time, I'll be checking out possible housemates, and homes-- either apartments or houses.  A freestanding condo might be a good choice, as then we would have the advantages of living in a house while somebody else would be responsible for the outside upkeep.

I'm not sure what kind of person I'd want to live with; I'll have to figure that out as we go along.  This should be an interesting, possibly exciting, summer.  Now, if only my Pittsburgh Pirates can come through....

Milk Of Magnesia

A young aide was just in here to give me some Milk of Magnesia.  I told her I didn't need it, but she told me the nurse had ordered her to give it to me, and she was obviously determined to follow her orders.  So, I took the damn stuff.

When I first came here, I had problems with my bowels, and they gave me Milk of Magnesia regularly-- not that it ever did any good.  But, I haven't needed any help in that area since February, so this came out of the blue.  I don't doubt the aide was told to give me the stuff-- she'd have no reason to do it otherwise-- but I have no idea why the nurse would do that.

I was extremely angry right after feeling forced to take the stuff-- so angry I delayed writing this entry until I calmed down a bit.  I hate feeling powerless.  Yes, I could have simply refused to take it, but I didn't want to blow it up into a big thing.  Living dependent on a bureaucracy, I suppose these things will happen.  Living in my own home with my own aides, though, it would never happen again.

So Far, So Good

Well, yesterday was pretty tough. but today is better.  It's painful to urinate, but I haven't wet myself yet today, which is always a plus.

Unfortunately, as I recall, the first time in these sets of three treatments is generally the easiest.  I guess the repetition of the unnatural things they do to my urinary tract takes a toll.

Hopefully, I'm remembering incorrectly.

Still Cancer Free

I went to the urologist this morning, and I'm still free of bladder cancer.  My doctor said if the cancer hasn't returned by about October, 2013-- three years after my first surgery-- the TB treatments I get to try to keep the cancer from returning will end. and I'll only need periodic scopes after that to make sure the cancer is still gone.

Today, I also got the first treatment in my next set of three-- one today, one next week, and one the week after that.  It's no fun.  Not only are the treatments themselves difficult and painful for me, but they make my urination painful and so urgent over the next three days or so that I have to wear Depends.  I often wet myself, as I have this afternoon, because the urge comes on me too quickly, too searingly, for anybody to get here and take me to the toilet.

Cerebral palsy limits my muscle control, but I've always prided myself on controlling what I could.  These treatments rob me of some of that.  I hate it.  I hate the pain.  I hate the mess and extra work for those who take care of my physical needs.  I hate being in even less control of my own body than I usually am.

Timing Is..... A Lot

About noon today, Millie, the social worker here, came by and asked me if she could show my rooms to a potential resident.  I agreed, and she proceeded to do so.  She told me she had a feeling I wouldn't be here much longer.  Millie has been on my side ever since she found out I was trying to get my own home.  She was very happy for me today.  We'll see if her feeling is correct.

When Millie came in, I was waiting for my aide to come.  I pushed the call button, and a half hour later my aide came hustling in, told me she was in the middle of something, and asked me if I could wait a bit longer.  I said I could.  Millie came and went.  A half hour after she came the first time, my aide came back, bringing my lunch, and finally took me to the bathroom.  As it happened, the hour delay did no real harm today, but I start another round of bladder cancer treatments tomorrow, and if they're that tardy for the next couple weeks or so, I wll have wet myself long before they get here.

Another Step Ahead

I got the welcome word yesterday that we are moving into the next phase in the process of getting me a home of my own.  I've been assigned a case manager-- Jill Ginn of ARC thinks the particular person might be an interim case manager-- and the first meeting with her is set for next week.

The case manager, whoever it turns out to be, will work with me to determine exactly what I want my daily life to be like, develop a budget to support my needs, and help me find a provider, a company that will provide my aides.  That should go a long way towards bringing this to the conclusion I want.  The two basic elements I need, besides the waiver and the money, are a home and aide support.

The process is going along at a pace that has both surprised and pleased me.  I'd thought getting to the case manager level might slow the momentum, but we seem to be there.  Now, if only we can keep pushing ahead.

Gaining Weight

Charlene weighed me again this morning, and I'm up to 98 from 94 last week.  She was pleased.  She'd already promised to make me brownies when I hit 100, so that might happen next week.

Another aide, Carrie, asked me what my goal was.  It's a good question.  I have no particular goal beyond 100, but I understand people who weigh less than 110 pounds can't give blood, so maybe over 110 would be a good goal.  That way, if any of my family ever needed blood, I could be an option.

Getting Rushed

I get online every day after lunch and stay until suppertime.  It's my work time, and my play time.  Around suppertime, though, I have to watch the clock.  I try to have my computer shut down before the aide arrives to feed me.

That's important because if they get here with my supper before I'm off, they'll either bring the food over to where the computer is and start trying to feed me, or they will try to pull my chair away from the computer.  Yodit, my main evening aide, will wait, and even help me shut down the computer, but otherrs-- not so much.  I try to ask them to wait, but that doesn't really work.  I end up shutting it down before I really want to so I'll be ready when they come.

I understand they have other people to care for here, but it seem sometimes that they don't think my time has real value.  In my own home, that would be fundamentally different.

Moving Forward

This morning in my rooms in the nursing home, we had a meeting involving Mom, my brother Jon, John Dickerson of ARC, and me.  I've been hoping to get John together with Mom, especially, for a while now.  I want Mom to understand what we're doing about trying to find a home for me, and I want her to be comfortable with it.

John did a great job of explaining the process to Mom and Jon.  Mom didn't say anything about it to me afterward, but she seemed okay with it.  I'm glad.  As much as I want to pursue this, I want to make sure she's not upset about it.  Mom has been through enough over the past few months, and I wouldn't want to add any more to her challenges.

Disabled Versus Handicapped

Words allow us to shape issues, cultures, and worldviews.  Political types know that all too well-- and use that technique, perhaps, all too often.  At some point in the past few decades, "disabled" has become the politically correct adjective to apply to people, as opposed to "handicapped."  That has always interested me.

If we deconstruct the word, disabled would seem to imply something changed over time-- a person was able, and at some point became dis-abled.  Like many people, however, my cerebral palsy is the result of an accident at birth.  I was never more physically able than I am now.  Therefore, I am not disabled.  I am handicapped, however, in that I can't do all the things the average human can do, and that has negatively affected my life prospects.

I'm not convinced the above is simply playing with words.  To deal effectivvely with reality, we must define reality as clearly as possible.  By keeping in mind the fact that there are subgroups within the disability community, we keep the human condition in focus.  The point is to develop policies that not only support the maximum personal independence of people we put in a particular group, but to do so in such a way that enhances the fundamental humanity of society.

Another Tough Night

Last night, I again couldn't use the urinal, and again an aide wouldn't take me to the bathroom.  She told me the nurse said I'd fallen in the bathroom and injured a toe, so I had to use the urinal.  I do have a tough time in the bathroom without my shoes, but I've never fallen in there.  Anyway, I tried twice and couldn't go.  So, I spent another very uncomfortabble sleepless night.

I'm not sure why I can't use the urinal sometimes.  Part of it may be that I never know who is coming or when they'll come or exactly what they'll do when they get here.  Different aides have different approaches.

In my own home, with fewer aides involved, when I needed somebody the aide could get to me quickly, and I could get comfortable with them.

Weekend And Stuff

Well, the weekend passed calmly.  I had neither of my main aides, but I did have aides who knew me, so it was fine.

An odd thing happened last night, though.  An aide came into my room about 1:30 and told me she was taking my wheelchair to clean it.  Why they'd do that in the middle of the night I have no idea.  Maybe she had nothing else to do.  Anyway, she's a nice lady, and helped me with the bathroom later.

This morning, Charlene weighed me again, and I'm back down to 94.  She wasn't pleased.  She wants me to start eating a small breakfast, to gain weight.  I haven't eaten breakfast in twenty years; it's simply easier all the way around if I skip it.  However, if Charlene wants to take the time to give it to me, I'm willing to try it for a while and see how it goes.

Charlene

Since I wrote about my aide Yodit yesterday, I thoughtt I'd write about my other main aide today.  Charlene hasn't been working with me as long as Yodit has, but I like her. She's very good to me.  In fact, Charlene has taken it upon herself to fatten me up, as she puts it.  She's the one who's weighed me the past few times, and when she gives me lunch I always get plenty to eat and drink.  Sometimes she even gets me double desserts, and an ice cream sandwich before she goes home.  I can't remember the last time I had an ice cream sandwich before that.

Alas, Charlene has this weekend off, and with Yodit gone, I don't know who I'll have this weekend.  It's probably a mistake to rely so much on individuals in an institution this large, but, by the nature of what they do for me, I think my relationship with aides is bound to be personal at some level.  With luck, the aides I have this weekend will be some I know and trust-- and Charlene will be back Monday morning.

Yodit

Yodit is the aide here I've come to depend on the most.  She's from Eritrea, which used to be part of Ethiopia.  Her mother still lives there, and Yodit misses her mother terribly, but she can't go back to her homeland.  She tells me that if she went back she'd be arrested.  Eritrea has a poor human rights record.

Yodit is an excelent aide.  She would do anything for the people under her care.  She's also a kind young woman.  Today, she left for California, and she won't be back on duty until next Wednesday.  I hope she has a good time, of course, but I also hope aides I know and trust take over for her until then.  If that happens, the next few days can go smoothly.  If I get new aides on her shift, however, the next few days could be a bit of a struggle.

I'm developing a relationship with Yodit that I'd want with aides in my home.  We like each other. We've learned to work together well, and I know I can depend on her.

Political Column

It seems I'm close to launching a political column.  John Dickerson, executive director of The ARC of Indiana, tells me they are working on the details now, including a contract for me.  This will be the third such arrangement I'll have.  Currently, the other blog I write, "The Way Out," is syndicated across a range of electronic platforms, and I also write a "Report On Science" monthly column for Continental Features/Continental News Service.  Neither of those brings in much money, however.

The new column will be a departure from the first two.  It will look at Medicare/Medicaid reform, especially how that relates to the concerns of The ARC and Self Advocacy of Indiana, both of which try to help disabled Hoosiers who want it get as much personal independence as possible.  Obviously, my desire for such independence is what led to the new column, as it did to this blog.  The column's approach and structure has yet to be established, but I am eager to get started on it.

John has suggested we might syndicate the column at some point.  He's also mentioned there might be a book in this for me.  John is a man of big ideas.  Still, I already have six completed novels I've written, and I think they have varying degrees of potential.  If I could sell some or all of them while making some sort of  reputation for myself as a journalist, my future could be brighter.

My Weight

The nursing home doctor was in here a few minutes ago, giving me a quick once over.  She commented she thought I'd lost weight since the last time she'd seen me.  In fact, as I told her, I've been gaining.

The first time they weighed me after I moved here, I weighed 95 pounds.  Subsequently, I lost weight over weeks.  Of course, during that period, I was adjusting to living here and worrying about Mom, who had triple bypass heart surgery a couple weeks after I came here, and then had to recover from that.  I got down to 90 pounds.

We've been trying to reverse that.  One aide especially, Charlene, has taken it upon herself to give me more to eat.  Yesterday, she weighed me, and I came in at 96.  The staff here was happy about that.  They said they'll throw a party when I crack 100.  At the rate I'm gaining, that might happen soon.