Amber's Abode

It's a little ironic how sometimes the day blogs for itself.  I was going to write about a couple of completely different eras ending for me, and when I turn on my computer, I find that both Ferrah Faucet (spelling probably incorrect) and Michael Jackson have both died today.  Ed McMahon was apparently yesterday.  I know all of these people represent different eras for people who may be reading this.  For me the strongest connection was pulling my sisters and their friends on roller skates via a jump rope tied to the back of my chair around the carport and down the driveway to the strains of Michael Jackson songs from thriller and bad the albums.

I was never really a fan of much of his later music, though I did enjoy the earlier stuff with the Jackson five, back when he knew whether he was black or white.  Sorry, I just had to do it.  His version of I'll be there remains much better than the Mariah Carey clone of a couple of decades later.  And I thought it was funny to hear a little 10 year old kid sing about what sounded like pretty adult feeling love on a playground.  But I did feel for him despite all of his challenges.  Because being on the fringe part of the queer community, I've begun to understand that he was most likely gender queer, not sure which gender, let alone race, suited him better.  I think if he would have just "come out" about this, the public would have treated him with a little more understanding and compassion.  At least I would hope so.

The lady from Charlie's Angels was a bit before my time, so that's what I know her for, but I know she was a legend in her own right.

And all I know about Ed McMahon was that he never showed up at my door with a big cardboard check; but I'm pretty sure he was a well-rounded comedian or TV star in his earlier days.

I hope that they each have found some peace and am sending positive energy toward all their true loved ones who cared about them beyond the hype and media. 

***

No, the eras I was planning to write about were more kind of introspective.  The first is a bit lighter because I got to go see my first Broadway musical live ever on Tuesday, Rent.  I was so excited because I got a good box seat for the cheapest ticket price.  There are some advantages to being in a wheelchair.  Very few, but some.  Also, the two male leads from the original workshop and Broadway cast were performing with the company.  This is probably because this is the show's 12th and final year, and they wanted to help put to bed what they had helped create.

This show is completely amazing.  Loosely based off the Puccini opera La Bohème, but modernized.  So instead of dying of tuberculosis, the bulk of the characters are living with HIV.  But it is not largely a sad piece.  The music and energy and message is so life-affirming.  Mostly about living life to the fullest, knowing that you really have no day but today. 

The story is made even more amazing when you discover that the creator was driven to finish it at a feverish pace and died of a heart attack the night before the workshop was to open, after coming home from seeing the last dress rehearsal.  So he knew he had succeeded, Mr. Jonathan Larson did, but he had no idea how big it was going to get.  The family and cast decided to do the opening as planned, but instead of blocking it all with the usual dancing they were just going to sit still on tables in front of an audience of family and friends of Mr. Larson and do a sing through.  That idea lasted for about 15 minutes, and then everybody knew they had to get up and dance.  So they did, and at the end, the audience just went crazy.  After the thunderous applause died, though, everyone just sat completely still.  Nobody knew when or how or where to move.  Then it is said that after a couple of minutes of this silence, a single male voice from somewhere in the house said, "thank you, Jonathan Larson."  This broke the spell, and everyone went on their way.  But people have not stopped coming back since.  And I count myself very blessed to be able to have seen it in person before it closes for good.

They accidentally did not charge my chair here the night before, so when I got out of the play I was running really low.  I did not know the protocol for waiting by the stage door for the actors, nor did I know where the stage door was.  I just knew I had to find my way back to a train while I could still get home safely.  But it means that I did not get to say hi to Anthony Rapp, the person playing Mark, whom I had been communicating with by my space letter from time to time.  I'm really sad about that, and I've thought about trying to go back and find the stage door tonight and just wait by it when I know the play is going to end.  But I don't feel very energetic today, so I don't know if I will or not.

***

The other era ending has to do with me coming from a kind of weakness into strength.  And also knowing that I deserve to be, and can be, treated like everybody thinks a woman should be treated.  I have this friend who is going through a really hard time right now.  This is understandable in regards to their stress level, but there's only so much I can and should be expected to take and chart up to their stress level.  For example, they always come around when they need something, and expect me to be just sitting around waiting for them.  And when I'm not, boy, do sparks fly.  But in between, I don't hear a single word.  Haven't now for a week.  But they are probably pouting or something, because the last time I did see them was not good for them at all.

The day before the last time I saw this person, who will not be named here out of respect, nor in spoken conversation out of the same respect, they called and said they were coming over.  Not a question, a statement.  Well, I already had my out-of-town company at that point, and neither me, my company, or the person apparently on their way, does very well in more than one on one type of situations.  So I expected it to be uncomfortable, but I tried not to worry about it too much because my friend who called doesn't always come over when they say they're going to, even after they say they are on their way.  And other than the really crappy timing, I was excited to see this friend if they did show up because I had not heard from them at all in a long time.

Well, show up they did.  And sparks did fly, because I think they were expecting to crash on my floor and were very surprised to see that temporarily, that position had already been filled.  So we all tried to make polite but meaningful conversation for a half hour until the person had to catch the train back.  But apparently, my poor friend had something really important in a bag that they left over here.  Before this person left, I told them that I would see them on the day my company left and they promised they would come over.  I specifically also asked them not to bring their roommate into my house because roommate freaks me out a little.  They agreed and left in a hurry, forgetting the really important thing.

So they called the next morning asking when I would be available for them to come retrieve the forgotten item.  I told them the next day after a certain time in the morning when my out-of-town company was planning to leave.  Apparently, they decided they couldn't wait that long.

Because at 1130 that night, when we had already gotten situated for bed because my company had to wake up really early, my phone rang.  We ignored it, but then I got a weird feeling.  So I listened to the message.  My friends roommate's voice was telling me that they were in the parking lot and wanted to come up and say hi and retrieve the all-important forgotten item.  I became angry, because I'd already clearly given a boundary of the next day, and I also clearly had given a boundary regarding the roommate who was also now in my parking lot.  Two seconds after I deleted the message, determined to just try and sleep until they gave up and went home, one of the workers who can hear came up and apologized that they had rang the doorbell and pushed their way past her when she went to check to see who it was.  (The front door of the building is always locked after dark.)  So the worker came in to retrieve the all-important forgotten item to deliver to the two people who were out in the hall.

But by then I was angry enough that I wanted to talk to my friend so that they knew or could try to understand why I was angry and felt this was inappropriate.  So my out of town company went out into the hall to make sure the roommate stayed out and sent my friend in.  I tried desperately to communicate to my friend through my frustration that I did not feel respected or even safe because of this huge ignoring of the boundary that I had set.  Of course my friend wanted to make it all about the fact that I had company and didn't want the two to run into each other.  I did not, because I knew uncomfortable would ensue, but that wasn't the point.

The point was and is that I am trying to become stronger and not let people just walk all over me.  And no means no, even if it's not in a sexual situation.  It has to, for the safety of all involved.  Sometimes the safety is only emotional, as it would've been in my local friend's case, sparing them the uncomfortable feelings.  Sometimes the safety is physical, as it would be in the situation of outward abuse with bruises and stuff, which is not the case here.  Sometimes, the safety is or feels like a combination of both.  Like it did to me.  I know my friend would never physically hurt me, but I did feel a little physically scared, because somebody had intruded into my home when I was almost asleep.  And your home is the one place where you are supposed to be able to feel safe.

Now I understand that my friend is used to just being able to drop in whenever, and it must have been confusing for them that for this short time, the boundaries were different.  But still, those boundaries were clearly set, and because they were so brazenly violated, brazenly meaning my friend did at the time and probably still thinks they were in the right, I now find it obvious that this friend, who claims to care for me very very much, might indeed care for me, but doesn't really respect me. 

This is further proven by the fact that they broke their promise and did not come on Friday after my company left, when I really needed them.  Also, there is the fact that I have not heard one single word from them since.  And probably will not for a very long time.  Until they need something from me again.  Or they get a twitch on their internal radar someday that I have some company again.  Then they will be back for a random surprise visit. 

I know they're busy and find it hard to find privacy to communicate with me now, but it doesn't take privacy to be able to say hello I'm alive and thinking about you. 

So I'm really really hurting quite a lot over this, because this person is one of my very best friends, and I have done quite a lot to show them this and help them through the very hard time they are going through.  So I don't know if all of it is gone out the window for good according to them, or if they are just being quiet because they are honestly really busy trying to pick up the pieces in their life.  But I have decided not to "chase after them" as much as I did before, knowing that if they want to communicate with me they will.  This is where the newfound strength comes in, because I used to really panic if I didn't communicate with this person on a daily basis.  And now I feel like they need to be the ones to make a little effort.  Besides that, communication with them at the moment has to be through the roommate pretty much, which is not really comfortable for me.

If you do read this at some day or time, my dear friend, know that I have loved, and always will love you.  I miss you terribly, and want you back regularly in my life, but not as a person to fight with, as an equal whom I can gladly help and support, and also receive help and support from.  In that spirit, I will always willingly and gladly do whatever I can for you.  I pray for your everyday, and hope that your current seemingly constant struggle will be over soon.  You can do it.  I believe in you.  Just remember that you are not alone, and try not to push away all those who try to help you.  Tight hugs.

The other part of the newfound strength is knowing that I deserve the respect and other good things I am lacking, and believing that I can somehow someday achieve these goals of receiving them.  I used to deal with letting people like this friend and my family walk all over me because I figured I had to in order to keep everyone happy.  But I wasn't happy.  I still am not very happy, because I miss people and there is emptiness in my life, but I am a whole hell of a lot stronger now because I know that I deserve the same respect that everyone else does.  My home is still, and always should be, my safe place. 

My life is my own, I don't have to flinch because I don't have permission or approval from other people.  I can choose where my home is, and what I want to do in it.  My family, the bulk of it, and all the other people who made me feel like this is not true, can go screw themselves.

I wrote this down for me to remember it, and also for the other people who read it, to see my newfound discoveries in their life maybe and realize they are not alone.  Feel free to dialogue with me about any part of this.

Sorry this got to be long and the content of three separate blogs in one, but thank you for reading it if you have made it this far. 

For now, I am done writing, and though I am scared to publish it, I find I am something else completely new to me.

I'm proud of myself.

Well, the calendar says it's the first day of summer, but not the weather outside my window. It's been cloudy and gloomy for the better part of two weeks. Right now it's also sapping my energy, making me feel like I'm sick and a little feverish. Part of that is probably that I'm tired from the busy week that I've just been through. For the first time in a long time, I had company for the better part of the whole week and it was awesome.

Last Sunday, my friend Joanne from the town on the coast where most of my family lives, came to visit me. She was kind of a surrogate mother figure growing up. She gave me a homemade quilt as a late birthday present which reminds me of the forest. I hung it up on the wall. Beautiful, and one of the few homemade gifts I've ever been given. We went out to lunch.

The next day, another out-of-town friend came for a few days, and it was amazing to have round-the-clock company for a while after being alone most of the time. We had such a relaxing, peaceful, and fun time. The best part was that for the first time in my known history, there were no expectations. We just did whatever we felt like doing in the day. Once, we walked in a wooded area. Other times, we just walked around my city. In the evenings, we talked like we had not seen each other in 27 years, or just read or sat still before sleep. I was really sad to see my friend go, and plunge us both back into the world of constant solitude peppered by intermittent chaos, but life will always come around again.

I don't know if my friend will read this, but if you do, thank you for everything. I may blog about this more later, but now, I am too sleepy and gloomy and although I know the returning solitude is probably a reason for the clouds in my head, so I'm hoping for both physical and mental sunshine to return soon. Wish me luck.

Happy solstice and Happy Father's Day!

14 years ago today I graduated from high school.  I know that's not a lot of time for some readers, but it makes me feel a little old.  And like I have not accomplished very much, because most people I know that graduated with me have families and/or careers by now.

But I know I'm doing well to be relatively healthy and living on my own the best I can.

I went back to the doctor today, and was told that it looks like the infection is gone.  I still have a few more days of antibiotics, though. 

And now I'm dealing with something else new.  Physical addiction to the pain medicine oxycodone, which they were inadvertently giving me every time I told them I was in pain, rather than asking me if I wanted a lesser kind of pain medicine instead.  I was unaware of this until I noticed that I had been full of manic and shaky energy for three days, unable to sleep.  But now that I have figured it out and almost totally stopped the medication, withdrawals are just as bad.  Yesterday, I lost my lunch and went to bed soon afterwards for the entire rest of the day, curled up into a ball and shaking violently like the portrayals of addicts in rehab one sees on TV.

Today, because of the doctors visit, I stayed out of bed, but I'm still shaking a little and feeling pretty puny.  Hopefully tomorrow will be better, because I'm going to see Max.

I guess it's true what they say about taking things one day at a time.  For now, it's all I can do.

But I still hope my high school teachers, staff and friends, the few I had, remember me fondly and would be proud of me now.

For the record, I did not enjoy high school in the least.  I was the only one in a wheelchair who was not mentally disabled for a long while, I was never invited on a date of any kind, not even the proms.  So when I see those nostalgic 80s movies about high school and how wonderful it was, I get sad and angry.  And now these people from my class are trying to add me on  facebook, trying to pretend like we were best friends back then and that they still care now.  In the lingo of the time: whatEVER!  I was going through serious crap at home, and my only friends were some of the teachers.  But looking back on it today, I understand why a lot of people get nostalgic for those days.  They were, or at least should have been an easier time in our lives, the end of our childhood, etc. etc..  For me it was not either one, but I'm proud of what I have become, mostly, and I'm curious to see what the next 14 years will bring.

In the words of an old song I am hearing on TV, que sera sera, or however you spell it.

Well, I'm not sure what to make of my life right now.  I'm still feeling better as an alive person now, but I've had a setback.  My surgery site got infected, so its back on hard-core antibiotics for a week.

I'm trying so hard not to get discouraged.  A moment in time, I have varying degrees of success.  Right now, I'm kind of sad, but I know there is a light at the end of the tunnel.  I probably won't get as sick from the side effects as I have before because I am healthier to start with, but I'm not sure.

I'm also really lonely right now.  There is someone I was really hoping to see today that I didn't.  Kind of a usual thing lately, people bailing on me, even if it's no fault of their own.

But I have a long-distance friend whom I haven't seen in about 10 years coming to visit me for a few days starting Sunday, a week from tomorrow.  I'm so wildly excited, this visit means many things to me and the other person, although I'm not sure to what level I'm going to blog about it during or afterwards yet.  I'm only praying now that I will be free of most of the effects of the antibiotics by the time they arrive.

To distract myself during my healing, I got a copy of the Sims three.  I don't know if I will be able to keep it because unless I can figure out how to slow time down or pause it and still be able to do things to progress, I can't click fast enough to make them happy.  Does anyone know how to help me?

Talk to everyone soon.

It's strange, but I feel a little confused.  I don't know if I can explain properly.

A little under a week ago, I was dying.  My body knew it, and so did my spirit, and I was struggling to somehow remain calm about it, because there was nothing I could do to change anything.

Now, I am alive.  I feel like I'm supposed to.  I have more energy than I remembered was even possible.  I am so grateful.

And yet I feel so confused because there is so much energy and so many things that I am suddenly able to do that I feel like I am being pulled in a million different directions simultaneously, which creates its own fatigue, as well as a kind of depression that I feel guilty for even feeling because I'm so much more alive than I have been in over three years.  But it's there nonetheless.

Is this normal?

It kind of actually feels like what a system reboot might feel like if I were a computer.  How nerdy is that?  But it feels like an accurate description.

Anyway, the weather is awesome now but I'm still staying close to home mostly because of the residual effects of antibiotics which I'm finally free of, hopefully for a really long time.  Unfortunately I mean I'm free of the pills, not the residual effects.  That will last another 24 hours or so, probably.

My friend Nick got me started on the series Sex and the City the other day.  I think I was one of a total of three people on the planet who had never seen it before.  Unfortunately, we just watched some random episodes, because he didn't have season one available.  I don't know if it will ever become a favorite, but I get why it was so popular now.  It's funny, and although I will never understand people that go to coffee and then jump into bed, apparently that adds to the humor, which it does.  Once I see a few more episodes, I will check back and tell people which I relate to the most of the four girls.  Right now, although I can't remember names, I like the redhead the best, and although I wish I could relate to her more, I find myself annoyingly relating to the main character, which is interesting because she bothers me.  :-).

I also find myself kind of sad over what appears to be going on in the family behind the show Jon and Kate plus eight.  I watched it pretty religiously to see how they coped with two sets of multiples.  And although the putdowns from Kate on camera are numerous, and so are the whiny spells from Jon, it seemed to work.

Until six months ago when there was some tabloid article about Jon making out with some girl on the beach in Hawaii, where they had traveled to, of all things, renew their wedding vows.  At least I think that's what the article was.  I'm not even really sure, because I don't read those.

Now I'm sure there are things going on on both sides, but the way they're handling it is actually pretty atrocious.  They are refusing to do interviews together for the show, and Jon is never around, and Kate says she wants to do what's best for the kids, but she is all dolled up and poised for her interviews, loving the media attention, and insisting that the show continue, even though her kids are being accosted by paparazzi now.  Sigh.  Obviously not what's best for the kids.  If they would listen to me, I would tell them to end the show and work on their family, whether or not there is a divorce.  Those kids are going to be scarred for life, and that is triggering for me.  Jon has been asking Kate, even on camera, to end the show, and she refuses.

The youngest kids are five now, more aware than ever of what is going on.  Of course, this whole thing could be a media/ratings ploy.  You never know.

I'm sorry.  I'm not sure why I launched into that.  I guess because I was thinking of it because of my own parents and their divorce.  Dad says that he is glad that they held out until five years ago for the sake of my sisters and I.  But now I wish they would've done it earlier.  I might have had a much happier existence as a teenager.  But once again, you never know.

Maybe I will discuss it in a psychology class when I go back to school in the fall.  I really want to go to Portland State University, to get my bachelor's degree at least, and maybe study something to do with writing, like journalism.

Anyway, that's enough babbling for now.  Enjoy the start of summer.

Well, I made it to the other side of my surgery.  All in all, it went really well.  It was really scary at first because I went in on my own.  Also, my ride there was really late, so when I got there, people were literally waiting in the operating room for me, and there was really no time to do or say any of the comforting things that would be nice to hear before you lose consciousness, especially when you're terrified.  But my new guy is so much better than my old guy that it went really well, with surprisingly very very little pain.  I mean, it hurt me less than my old one hurt all the time.

Until now.  Right now, this second, it hurts to even breathe.  They just gave me some pain meds, so I hope it will get better, but I don't know.  My whole abdomen feels like one big bruise.  It's mostly the old site.  The new place is closer to my side, and doesn't hurt.  But the old site is still infected, and he couldn't just stitch it closed, especially with infection in it.  If he did, the infection might travel to the new site, which would be really really bad.  So I just have to, as is my usual state lately, grin and bear it.  For Lord knows how long.

I'm still happy I did it.  Other than the pain, I feel worlds better already.  More energetic, like my old self.  Especially not falling asleep every five seconds randomly.  So I know this was a good thing in the long run, and probably even saved my life.  I can now look forward to enjoying the summer, and maybe, just maybe even getting a volunteer job or going back to school.  I'm taking it slow for now, but it sure is fun to be able to dream again.

Thank you all for thinking about and/or praying for me through this process, and please continue to do so.  Because I've heard that it might take an entire month to completely heal and lose the pain.  And because of things that have happened to me in my life, I refuse to pray directly for patience.  :-).  It's like that ancient Chinese curse: May you live in interesting times.

I think I will go sit in the sun for a while now with my kindle.

Well, this is probably going to be labeled psychopathic rant, so be forewarned

Wednesday night, I made a third-place finish in the second round poker game. I accepted the congratulations. I hit the button to turn on my joystick controller. It would not turn on. The more mechanically inclined people around me discovered a short in the cord leading to the joystick. When they wiggled it, I would gain power for a few seconds, then it was gone again. Nobody around me understood why sheer panic ensued in me. I tried to tell them it's like somebody breaking both of your legs, but nobody got it. They all told me the calm down, though no one wanted really to help me home.

I somehow made it to the bus stop and explained the situation to the bus driver, who kindly assured me that he would make sure I got home one way or the other. So when we ended up at the final stop, from which my building is another five blocks to walk because there is no train running to the final stop that late at night, the driver put my chair in manual mode and got ready to push me home. He called his dispatch, just to let them know what he was doing. The dispatch transmitted back that he was not allowed to leave his bus to help me get home, under pain of losing his job if he did. We both thought that was pretty crappy, but the bus people called a cab. When she finally arrived, she was one of those super size girls, and she took one look at my chair and told me she refused to push it. She then called the cops to help her load and unload my chair, but she only waited five minutes for them to show up. After that, she muttered something about losing money, managed a very fake sounding apology, and left. Mr. bus driver and I sat on the bus for a total of an hour and a half waiting for the police, all the while being bothered by dispatch telling him to unload me and leave. We were both very very angry by the time the cops managed to show up, so the bus driver drove his bus to right across from my building and the cops pushed my chair into the building at around three in the morning.

The attendants here were a little angry that I had not contacted them, but I had no way to. They're all deaf and would not have heard the phone ring. And of course, when I woke up the next morning, there was a rumor floating around that I had been arrested, because I was escorted home by police.

Also when I woke up the next morning, yesterday, the bed was soaked because the catheter was clogged. Again. So I dutifully called my home health nurse, because they won't do anything catheter related here, and was told they would call the front desk when someone was coming out. That was nine in the morning. In the meantime, someone came to fix just the seat on my chair, not anything to do with the electronics. But he stayed here for awhile and heard my phone calls to the company that is supposed to do something about the electronics. They said that they were really sorry, but my insurance did not pay for chair loans, so if they came to pick up my chair, I could be without any way of getting around, stuck in bed, for two weeks. I started sobbing;, I could not help myself. After all I have already been through, I don't need that.

Fortunately, the guy named Tim, who was working on my chair and heard the conversation, agreed. He said he would take the chair just overnight, find out what was wrong, and either fix it or bring me a loan by today, the next day.

Meanwhile, it had gotten to be two o'clock in the afternoon with no callback from home health. So I called again to ask what was going on. They said they called the front desk a long time back to tell them that they had no one to send out to me and I should go to the ER. Well, not only did this make me angry because it defeats the whole purpose of home health, but nobody gave me the message. So I had no choice but to call 911. They came nonemergency, and took me to the ER in the hospital called Providence, where my new urologist works. Of course, he was not there yesterday.

They eventually changed my catheter. But they wouldn't listen to me really about the other weirdness, like the extreme fatigue. And they were really rough with the actual change, because they thought I was paralyzed and couldn't feel it. Apparently, reading the chart slipped their minds. But they did feed me dinner while I was waiting for my return ride.

And when I got home, my chair was waiting for me, with a loan for a joystick, because my joystick is bad, according to Tim via phone message.

And so, I thank God for Angels like that bus driver and Tim. But the rant part comes because I'm realizing that just because the situations are resolved for the moment, I'm still angry, very angry, at some of the concepts behind them. Like why isn't the bus company allowed to help stranded passengers, especially disabled ones, and why the hell are they threatened with losing their job if they do? Isn't that their job in the first place? And why the insert long beep doesn't my insurance cover wheelchair loans? How could anyone possibly think it's okay to leave someone stranded in bed for days or weeks? I just don't understand. I'm trying to but I really can't. Would they allow me to come and break their legs and tell them they could not use crutches? I don't think so.

And another thing is that I'm finding that I'm feeling angry more and more often lately, but really don't have anything to do with it, anywhere productive to put it. So it just boils my blood, which is not very good. Panic attacks happen when there is nowhere left inside me to safely hide it. And right now, I have zero physical energy to send it out of me with. Does anyone have any suggestions, preferably practical ones about what prayers, meditations, or other means of dissipation or release work for you? Praying doesn't seem to be helping very much lately. It feel like I'm just muttering at the ceiling. So I'm very open to any help.

Thank you all very much for listening and caring.