Where oh Where...

I'm listening to the government shut-down discussions. What a mess. Twenty years from now I doubt i'll be around to see what the fallout is.

Meanwhile, i have to wonder. Aside from the fact that I have little to no influence over political events, other than voting now and then, which I will definitely do, where is the advantage to worrying myself over it?

I've gotten into several political discussions with friends of opposite persuasion from mine. It would have been more productive for us to repeatedly slam our foreheads together until we both passed out.

Where should I place my goals? Not in politics, that's for sure. That's just an exercise in futility. I  keep up with most of it, but mostly as an observer. There seems to be a lot of insanity in American politics these days, and I don't want to get embroiled in it

I have a lot to learn about being a spirit in a human form. This human form doesn't do a lot, but my brain still works. So I'll concentrate on using that. There's no road to follow, no signposts, no maps. I'm pretty much lost since the road I was on was blocked by a seemingly impassable boulder.

Maybe that was a sign that I should seek out a new road. I might just find what I'm looking for. I want independence. Maybe I will find acceptance, instead. I want to live somewhere that I can rescue a cat. Maybe that place will find me. I want to expand my soul. Maybe being limited, physically, will aid me in doing that.

There's no sitting back waiting for these things to magically appear, though. I will have to be alert, both mentally and spiritually. And I will have to work hard.

Right now, this as far as I've gotten. I'm still confused and lost, not knowing which way to go. That's OK. I'll just float here at my crossroads  awhile, let my intuition fly free, and release my thoughts like dandelion seeds into the wind.

Meanwhile, this looks like a good place to rest and reflect.

Something from Nothing

I learned something important about this situation that recently came up. As Christopher Robin said to Pooh, 

"Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think."

Yeah, I fell apart at first. It really felt like a boulder fell out of nowhere that pulverized my plans. But it didn't pulverize ME. After I spent a day feeling lost and sorry for myself, I called Medicare and found out that I am eligible for wheelchair modification.

So I investigated what kinds of modifications are available. I found a company in Denmark that uses aeronautical technology. It's a seat that uses  tiny neoprene pebbles that are vaccuumed into a seat. they mold to a person's body and can be used for people with spinal injuries. I'm  not very good at explaining how it works, so here is its webpage:

http://vakuform-reha.de/en.html

There are a lot of questions about this product. How much does it cost? Would Medicare approve it and considerate it a wheelchair modification? Will it work for me? Is it even availabe in the U. S?. It's a long-shot with many hoops to jump through,  so I'm not letting my hopes get too high. But it could work. Maybe. Anyway, I emailed them yesterday to get more information, so now I just wait. It's a new product, so I'm pretty sure no one here has heard of it.

The point is, I haven't given up.  I'm not crushed. I'm not defeated. What I am, is determined. And, to be honest, I have no clue where all this strength is coming from.

And all this mysterious positivity and hope? It just seems to rise, unbidden, from the depths of my soul. It's as if I can trust that whatever happens, it will be the right thing.

That's where I am right now. There are, of course, ups and downs in this journey. And I'm sure to meet more obstacles. I might even have to choose another pathway. But now, instead of being weighed down by obstacles, I tend to see them as exciting challenges.

And I know I will often be defeated by them.. But my determination will not be. I'm no super hero. I'm likely to break down, temporarily --  give up, cry out of frustration and fear, get discouraged. But there's a light at the core of my existence that somehow stays alight and keeps me going. here is some wisdom and love from lynnie buttercup:

"This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss yourn lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life."

Much love from me to you.

Journey to my Happy Place

Hey! I got enough sleep! Yay! I slept from around 10 last night until 3:30 this afternoon, with about an hour of wakefulness right before lunchtime. I woke up because I felt sick to my stomach. That happens sometimes for various reasons. So I asked for a pail to use if I wasn't able to resist the feeling, and I asked for a Zofran, which works wonders settling my stomach. Then I lay very, very still, waiting for the medicine to arrive. After awhile, I called and asked for it again.

About a half-hour from the first request, I threw up. Five minutes after that, the nurse showed up and gave me the Zofran. It was too late to stop me from throwing up, but I took it anyway, just in case I wasn't finished. I've been through this routine before, many times. I had some egg-drop soup, which almost also settles my stomach and I'm feeling quasi-good now.

You didn't really didn't need to know all that, but I decided to subject you to it, anyway. It's part of the challenge of this journey and it's usually a hint toward having one of my frequent UTIs. I never get tested for them until something else goes wrong, but at least the doctor is quicker on the uptake than he used to be. Not long ago, he didn't give orders for treatment for more than 5 weeks. Then, when my kidneys started shutting down, the nurse took one look at me and said, "You're going to the hospital!" That was the day after I had asked to go and the doctor said no. I was a sick puppy and spent a week in the hospital getting intravenous antibiotics and liquids. It doesn't take nearly as long now to get his attention.

I got some awful news this week. I'm going to quote my Facebook status here that I posted, explaining it. I was shattered at the time and my post reflects that. But don't worry. I've had some time to adjust to it and I feel better now.

"I'm trying to cope with the news that I will never be able to sit in a regular wheelchair again because my spine is so twisted due to my legs being so contracted. According to the pt lady, in order to sit in a wheelchair that I am able to control, one would have to be made for me. That could cost thousands of dollars and isn't likely to happen. So that means I'll never be able to have any control over where I go. Zero independence, with no hope of having any, ever. I will be up in a special chair sometime soon, but will have to be pushed by someone else. That means some super-busy aide will grudgingly park me somewhere, probably wherever is easiest for her, then leave me there like a lump. God, that makes me feel old and helpless. I had hoped, and was willing to work my ass off in PT so I could eventually go into an assisted living facility where they allow pets and could rescue an older snugglewuggums of a cat. Doesn't look like that can happen now.

I'm so tired of losing... My house, my husband, my ability to walk, my child, my writing job, all my belongings, Josi to Oregon and Michael to Maryland where I can never see them or hug them, and now the tiny hopes and dreams I'd convinced myself I still had that made life worth living. I hate living in a nursing home. I hate my life.

I don't have the energy or interest to write in my blog tonight. Sorry. It'll be a rerun of one of my old columns."

I emailed this to my therapist because I was so upset that I didn't want to say it out loud and explain everything again at our session the next day. The subject line said, "From my status on Facebook, for tomorrow. Don't worry. Not suicidal. Just very sad and defeated."

This is kind of funny. Even though i said "not suicidal" in the subject line, he didn't believe me. Can't blame him. I was suicidal for a long time and my perspective toward suicide has only changed recently. So he walked into my room yesterday and, before he even sat down, he said, rather forcefully, "SO....  Are you ready to see what's on the "other side" now?! And kind of glared at me, like he was daring me to say yes. 

He startled me. I wasn't expecting that. My eyes got pretty wide and I said, "No! I'm not finished here yet."

He asked me again, less forcefully, more like he was skeptical of my answer. And he was more relaxed.  I told him, "No, I'm not suicidal. I still have things to do."

So he got out the folding chair and sat down in it.  I added, as a statement, not a question, "You got my email. I DID say I wasn't suicidal in the subject line."

He said, in a tone of voice I had trouble interpreting, "Yes. I did. That's the only reason I read it."

Oh, dear. I could interpret it then. It sounded like restrained anger, frustration, and a smidgen of relief. I'm not easy on therapists. I scared one so badly he started shouting at me. And he was a very calm person. That was when I'd shown him the places I'd cut myself. Was a long time ago and I never cut mysef again. He frightened the bejabbers out of me. I couldn't even talk. I just got up and left. He certainly got my attention.

Just in case my current therapist thinks that might work on me now, I've been through a decade-long abusive relationship since then, and would probably just yell back then start crying. He's done a pretty good job of helping me gain self-confidence, so I'd probably get mad, too, at both of us. But I know he won't do that. I trust him to do what's best. And he's very good at knowing what that is. 

This has been a long entry, so to wrap it up, I just want to say this: I'm not, no way, no how, suicidal. Life interests me and I know I still have things to do and to learn before I go to spirit. I recognize that I have enough strength to handle disappointing news, though it may throw me for a loop at first. I have amazing friends and family. I owe my therapist an apology for repeatedly worrying and/or scaring him and gratefulness for his patience.

I'm even almost happy again. Two steps forward, a hundred steps back, and 75 forward again. I'll get to where I'm going, eventually. I just wish this road I'm on would stop getting steeper and start leveling off.

This is a photo that represents my happy place, where I go when life is unbearable. Since Lyra died, she's waiting on the porch for me. We build a fire in the fireplace, roast hot dogs, then marshmallows over it at twilight. During the days we go on hikes. It's always the beginning of autumn, so we need light jackets. Sometimes we play games, sometimes just sit on the porch to listen quietly to birds sing and squirrels chittering angrily at each other. Sometimes we see rabbits or deer out in front. Before bedtime, we read -- sometimes to each other, sometimes silently. Sometimes Lyra is a child, sometimes a young lady a little taller than I am, still with her radiant smile. I can never stay long, but am peaceful when I have to go. After I've gone to spirit, I will be able to go there whenever I want. But I can do that, already, just by thinking about it.

A Pebble in My Shoe

 Cried a lot yesterday so I wasn't in any shape to write a coherent blog entry. I'm not sure I will be coherent today, either, because I've only had an hour of sleep since 4 p.m. yesterday afternoon. Also, my head hurts.

It started when a Physical Therapy tech told me that I will never be able to sit in a wheelchair again, with the exception of a geri-chair, which is like a recliner on wheels which someone has to push from behind. The exception, she said, would be if a wheelchair was built especially for my needs, but that would cost thousands and thousands of dollars. And we all know that's not going to happen.

So I saw any chance of independence disappear forever.

The reason for this restriction comes from spending more than 3 years lying in a bed with no physical therapy. Well, OK. A week or two's worth. My legs twisted and contracted and that caused my spine to twiist so badly that I am unable to sit upright in a regular chair.

After I'd pondered this all night, saw my therapist, and done a little digging on the internet to see if Medicare would get involved, the boulder that stood blocking the pathway to my meager hopes and dreams seemed to shrink a little, but not a lot. It's still there, pretty much still a humongous obstacle.

So here's what I'm planning to do. I can'l go over this boulder and can't get past it on either side. I'm either going to have to chisel my way through it or burrow my way under it. There's a lot of time and effort needed for those last two things, and they might turn out to be impossible.

If they turn out to be impossible, then I'll need to do a lot of soul-searching. I'll have to consider that an important life-lesson is being learned and I still have things to do on THIS side of the boulder.

Right now, I don't know what else I can do.

I'm worn out from all this unhappy deep thinking. I'm still not a happy girl. At least that boulder didn't kill me. In fact, it missed me by a mile. 

Please, spirit angels, let me get some sleep now.

Thanks.

Courage in Action

This entry is a rerun of one of my columns. It was published September 6, 2008 in the Stillwater Newspress, Stillwater, Oklahoma.

September 6, 2008

Courage in action

Kay Thompson, Editorialist 

I used to think I knew what courage is. It seemed very simple to me: courage, I reasoned, is being afraid of something and doing it anyway. That was before I watched courage in action.

My 6-year-old, Lyra, is undergoing chemotherapy for a brain tumor. She’s old enough to understand what’s going on, but it’s beyond her control. The grown-ups are in charge, after all, so she doesn’t have a choice.

This isn’t quite true. She could refuse to cooperate.

I’ve watched Lyra go through things that would defeat me. From the first time she tried to turn her head after the back of her skull had been cut open, to the present, she has shown time and time again what she’s made of.

For example, awhile back we had to give Lyra shots. She’d received a particularly virulent form of chemotherapy and was neutropenic. That is, her immune system wasn’t doing its job and she was in danger of getting sick and not being able to fight off the sickness. For 10 days we had to give her daily injections of Neupogen to bring up her white blood count.

Lyra is terrified of needles and I was none too happy about having to give her the shots, so the first injection was rough. Lyra kept trying to brush away the needle with her hands. I was trying to give her the shot at the same time I was trying to fend off her hands. So I’m sure the first one hurt. Besides which, the medicine burns as it goes in. It was not a pleasant experience. She cried and I felt like crying, too. She had chosen to get the shots in her stomach, which I thought was brave all by itself. I put a bandage on her tummy to make it feel better, and it was over with for the day.

The next time I had to give her a shot, she started waving her hands toward the needle, so I told her to lie on her hands. She did that, then pulled them out, then put them back, and so on, until the shot was over with. This one went more smoothly.

After that, Lyra put her hands down by her sides or underneath herself without being told. She was still scared, but allowed me to give her the shots without interference. She was crying, all the same.

That’s courage. And every time Lyra lets someone inject a needle into the infusaport that’s in her chest, I’m impressed by her bravery. For that matter, every day when she gets up and rides the bus to school, I’m impressed by her bravery.

She shows her courage a hundred times a day: when she kids around and laughs, when she asks to get her head shaved because her hair, which was coming back in has started coming out again, even when she goes to bed without complaint, exhausted from the chemotherapy and her activities. She is a very brave little girl, and she is my hero.

Now I know what courage is. I see it every day.

###

Lyra, age 7, during her Make-a-Wish trip to DisneyWorld

Ride 'em little determined cowgirl! ❤

Almost Inhuman

There are two sides to my existence that I recognize, so far. Maybe three, but I'm not sure about that.

One side is humanity. That's what keeps me "alive", in this reality at least. I feel a connection to my fellow humans, a love and concern for those who need that, like the 

Americans who will have trouble getting enough to eat without access to food stamps. I'm no Ghandi or Dali Lama. I'm not even the guy who gets up on a box in Hyde Park and does his best to save humanity in his own way, whether it makes sense or not. I'm just a bed-bound blogger who is stumbling around, trying to find some way to make some kind of a difference. And I have no way of knowing if it's working. Well, it's made a difference to me. I acknowledge that my life is getting better, and also that I haven't done that alone.

The other side is spirituality. I am a novice, a kindergartner, at knowing about that. There is a lot to learn. Part of the difficulty is that I can't see any way to separate the spirituality from the humanity, short of leaving this life behind. I'm not so sure they aren't meant to be intertwined, as long as I'm living this human life.

I've learned a lot from my difficulties in life, but not until I started studying spiritual matters and seeing my therapist. And the lessons of some of those difficulties, like becoming a paraplegic at the age of 61 escape me.  In fact, the purpose for that perplexes me. It even makes me kind of angry because it seems so unfair. How am I supposed to make a difference if I spend years lying in bed? From what I've read, we are living our earthly (or whatever) lives in order to learn and advance our souls. (That's the third part of me that I'm not sure about. I don't know if my soul and my spirit are the same thing or separate. Like I said, I still have a lot to learn.)

Well, I guess I learned a lot when I was younger, but didn't really recognize them as lessons until recently. They were just things that seemed right, or wrong, depending on how you look at it. I had a lot of wisdom as a child that I didn't see as wisdom. The notion that there is no more to death than there is walking from one room to another, for instance. I don't know when that first occurred to me. It seems like I always knew it. But that brings up a whole new kettle of things I still don't know enough about so I'll move on.

I am fascinated by the exploration of life, humanity, spirituality, and their endless permutations. I know I don't have all the answers and that I won't, not even after I've gone to spirit and been that way for countless amounts of time. I don't care. I'm having fun and I'm advancing. I'm pretty sure I am approaching the end of this life and that I've been slow on the uptake, too. So I refuse to waste any more opportunities feeling sorry for myself. That's the plan, anyway. If life just doesn't throw me any more vicious curveballs and I manage to stay reasonably healthy, I might just manage to accomplish it.

Wish me luck, cross your fingers for me, and send positive vibes my way, will you? I'm going to need it. Oh, and some pizza, too. Thanks.

Crash Day

Until 1998, when I first started taking Ambien, this was my sleep pattern: i would lie in bed, brain buzzing, for hours until exhaustion took over. Then I'd wake up early so I could get ready for school, work, or whatever needed my attention. This was the pattern for week-days. Then on Saturday I would crash and sleep for 12 to 14 hours. I could't do that when I was the single mother of children younger than 5, though. During those years I just lived in a constant haze.

But, meanwhile, I trained my kids how to get their own cereal and turn on the Saturday morning cartoons. I also trained them not to wake me up unless the house was on fire. Once they were old enough to accomplish these tasks, I became semi-human again.

During the past 6 months or so, the Ambien finally lost its effectiveness and nothing else has helped me sleep. Back to the old pattern of hardly sleeping, then crashing because I'm exhausted.

Today was a crash day. I actually got some sleep! Not quite enough, unfortunately, but more than usual.

I went through a sleep study several years ago. They said I have sleep apnea and would stop breathing for up to, and sometimes more than, a minute at a time. So I got a machine to put on my face at night (I called it a face-hugger) to help me keep breathing while I slept. I used it exactly once. That might have something to do with bad sleep-patterns. Maybe.

I did notify the first nursing home I was in about my apnea but, as proved to be typical, they did nothing about it. Now I don't want a face-hugger. Yes, I know it would supposedly help me sleep. Yes, I know, sleep apnea can be dangerous. And, yes. I know I could stop breathing in my sleep and never start again. Kind of like SIDS for old people. (Sudden Oldsters Death Syndrome.)

I don't care.

If it's time for me to go to spirit and go home, so be it. And nobody had better revive me. I have a Do Not Resuscitate order in my file.

Yes, my life is absolutely getting better and I believe it will continue to improve, but it's not so great that I want to  live until I'm a hundred. With the history of longevity on both sides of my family, that could very well happen. What a horrible thought!

And, no, I'm not suicidal. If I was, there have been plenty of opportunities to do myself in since Lyra died, and I chose, every time, to stay in this body, flawed as it is. There are still love and joy to be had and to give in my life. And much to learn, maybe even to teach. 

So, though it's damned difficult at times, I'm truly happy to be me, alive, curious, growing spiritually and intellectually. I sense I'm running out of time, so I don't want to waste a minute or opportunity.

But I really don't want to live 35 more years, either. Really.

Good News, Bad News, No News at All

Good news: i was measured for my special wheelchair today and they promised one would be brought from a sister facility in Kansas.

Bad news: They couldn't tell me when it'll be here, so I'll believe it when I see it.

More bad news: I didn't get enough sleep again.

Good news: I've lost track of how long this sleep deprivation has been going on so practically any kind of whimsy could overtake me at any time.

More good news: I was able to have my window open today and got some fresh air.

Even MORE good news: No mosquitos found their way in. I found one mosquito in my room a week ago. It was perched on my left arm, ready to drill for blood. I reflexively smacked it hard, then smacked it hard again, then picked it up between my fingers and rubbed them back and forth, pulverizing it. Then I threw what was left on the floor. NOW who's bloodthirsty, mosquito? Hmmm?

No news: typical day. Nothing unusual. Lay around, played with iPad, checked to see which apps were still downloading, checked bank balance, wished I hadn't. Stuff like that.

Oh, one more good thing -- ate some dark chocolate. Yum.

(I'm not fogetting the fun we had during your visit, Jeff. I never do. I just don't talk about it here. Thank you for all the laughter.)

Eyes closing now. But I won't sleep right away. First, I think I'll finish watching a documentary about the non-group "Anonymous." Interesting philosophy, a lot self-congratulating, just the kind of thing to watch if you want to snooze. No offense if you're a non-member of it. I'm just awfully tired.

I hope you all had an all-around happy day. I did.

What Day is Today, Anyway?

I know I was still awake at 7 this morning. I know I ate breakfast an hour later, and that I was still awake for lunch around noon. I don't know what time my eyes finally drifted shut, and I'm not really sure what time it was when the wound care nurse woke me up for my treatment, but the sun was going down. I think today is Sunday, but I'm a bit confused about that.

You know, naps are not all they're cracked up to be. If I could read military clocks without having to count on my fingers to figure out what time it REALLY is, I'd get one, because I have no set sleeping schedule. One time I called my son at 2 in the morning because I thought it was afternoon. He called back after he woke up and asked what had happened because he thought something bad must have happened for me to call that early. I cringe just thinking about it.

So now I look out the window to see if it's day or night. Sometimes I wonder if these things happen because I'm getting old, or because it's an inevitable result of being an inmate in a nursing home. You know, senility by osmosis.

This really is Sunday. I got a bath and shampoo so I'm squeaky clean. That's it. The big excitement for the day. Last night,though, early in the morning, I attempted to update an app. Instead, I accidently pushed the "update all apps" button.

 Facepalm. 

So nearly all of my 6 screens of apps started updating at once, which was about 97 of them. And I could NOT find away to stop it. So my iPad was practically useless to me. Youtube was just about the only app that would open. I was so agitated by my idiotic move that I could't concentrate. I wanted to run, screaming, down the halls, but I couldn't, of course. So I wanted a strong sedative, instead. None available. Unfortunately, drug dealers do not make friendly visits to nursing homes, or I would have been tempted to procure some weed, if it was legal, and if I had some rolling papers and matches, and if smoking was allowed in our rooms. But nope, nope, nope, and nope. I just had to endure. Would you believe that some apps are still loading? Jiminy Cricket.

That is not the kind of excitement I want, if you could call it that.

Judging from how my eyes are drooping, whatever few hours of sleep I managed to get today was not enough. I'm going to cut this short and see if I have any success at getting more sleep. This has become a real problem for me. I just hope that when I wake up again, it will be at a reasonable time and that I know what day it is. 

So sleep well, dear friends. I'm outta here, metaphorically speaking.

Floating on the Remnants of a Dream

I didn't begin today in a very good mood. My dream, which was sad, kept lingering. It's faded, but is still with me. 

I was at some kind of music festival and came across a little lost girl. She was beautiful, about 6 years old, with long, dark hair. She was very calm, but wanted her daddy. She reminded me a lot of Lyra, despite the physical differences. So we searched together for him. I knew what he looked like, because he was, for reasons known only to my subconscious, George Harrison. We wandered for a long time. Occasionally, we would rest. She sat on my lap and I hugged her. I stroked her hair and thought about how much I miss being able to touch Lyra. Finally, I spotted George in a crowded room, took her up to him and said, "There you are! We've been looking for you everywhere!" He barely glanced at us. He took her hand, said, "Yeah. Thanks. I gotta go." And led her out of sight. We didn't even say goodbye. And I had a terrible sense of loss and sadness.

The dream is a jumbled up bunch of nonsense, of course, but the emotions are real. Why is my subconscience doing this to me?

So I woke up feeling bereft. Of course, tomorrow is my emptiest day of the week. I think I need to give my psyche a rest and distract it with movies and tv shows on my iPad. And maybe I'll also give meditation a try. I've never been very successful with that, though. My mind is too restless. That's one reason, I theorize, I have trouble falling asleep.

I really, really miss Lyra. One time she was sitting on the bed next to me, her back to me, and I wrapped my arms around her middle in a big, squeezy hug. She laughed and said, "Daddy, look! Mommy has me surrounded!" Clever girl.

At least I don't miss the use of my legs so much anymore. That's just something that IS. I'm looking forward to getting up in a Geri-chair, but have been told they have to build one for me because my legs are contracted in a weird way. As far as I know, that hasn't been started in the 6 weeks or so since .i was promised one. It's a little more than discouraging, to say the least.

One step forward, six steps back.

The demands of being patient while, conversely, being impatient are exhaustingly confusing. If this waiting goes on much longer without progress, I'm going to demand to start getting up in my regular wheelchair and they'll just have to devise a way to make it work. I will NOT be put off endlessly until something happens to prevent me from getting up like it did at my first, hellish, place of residence. I just won't stand (ha ha) for that again.

I've definitely got the grumpies today. Sorry. If I could manage it, I would storm into the administrator's office and demand to know how long this will take, because I am rapidly losing what little patience I have left. 

Funny thing is, in the past I would felt more and more depressed and hopeless, but now I'm getting more and more angry and indignant, instead. As my therapist has pointed out, depression is anger turned inward. Apparently, being angry and impatient is the better scenario. 

Well, I did warn in the beginning of this blog that it was mostly about my struggles with paraplegia and the death of my daughter. Looks like today's one of those days.

Thanks for bearing with me. You guys are the best.

Here's a photo that I feel mirrors my transition except that I don't have zapping powers. Sometimes I wish I did, though. What an amazing temper-tantrum I could have!

Life Lesson Syllabus

Well, I'd write a syllabus if I could, but I rarely recognize life-lessons until I've already learned them. As my dad used to say, "Life is the opposite of school. In school you learn the lesson then take the test. In life you take the test, then learn the lesson." How right he was. Today I learned a life-lesson that I didn't see coming. I was having a political discussion with a good friend who takes the opposite political viewpoint from me, which is actually rarely a good idea. Without meaning to, I insulted her by saying outrageous things about her political party. A stupidly thoughtless act on my part. And I can't blame her for being offended. I'm afraid I even hurt her. I was heartsick about the whole thing and asked for forgiveness.

But that sense of sorrow and humility wasn't the biggest part of the lesson. That came when she very wisely pointed out that politicians are just people doing the best they can. I had somehow forgotten, because I disliked their actions and policies, that they deserve love and acceptance as much as anyone. Way to go, Kay. You spend time and effort to promote a new perspective on life that includes acceptance and love, but fail miserably at practising it. So I needed to be taught to remember that I am striving to love and accept all people, creatures and the things of the earth, and beyond, without judgment or crtiticsm. I need much more practise at this, but my friend really got through to me. My perspective has definately been changed for the better. My soul thanks you, sweet friend.

After being up two days and nights, as you can tell if you read yesterday's blog entry, I didn't have any trouble getting to sleep. I forced myself to stay awake until after 11 p.m., waiting for those unspeakable  things to happen. But they never came to do them, so I zonked out. I woke up at 1 p.m. this afternoon to the horrendous sound of the sink in my room being "roto-rootered" out. I might have slept longer, but with thundering demonic noises blaring 6 feet from my bed, all I could do was make cringing gargoyle-type faces. And wake up completely.

Thankfully, that eventually ended and it subsided to plumber-doing-stuff-to-the-sink clanks and other metallic sounds. He left, leaving all his equipment on the floor, presumably to fetch something.

Meanwhile one of the aides came in, just beginning her shift, and stared at the equipment on the floor with puzzlement. Then I explained what had been happening with the sink. I complained to her that no one ever showed up to do the unmentionable things and she corrected me. They HAD showed up and they HAD done those things. I have absolutely no recollection of any of that. I was so soundly asleep that I snoozed through the whole procedure, including them rolling me side to side and changing my sheets. I find it hard to believe I slept through everything.

However I did once sleep through the death of one of my roommates, the removal of her body, all the doctors' and nurses' clatter and the removal of all my roommate's belongings. It was spooky. I went to sleep not long after I had called the front desk to tell them that my roommate, who was on a breathing machine, was making VERY SCARY breathing noises and, when I woke up the next day, she and all of her belongings were completely missing. I asked someone what had happened. I thought maybe she had been transferred to a hospital. I hoped that was it. But they said, no, she had died because her lungs had filled up with fluid. The only thing I could find positive about this was that her entire family had paraded in two days before and she, and they, had gotten to say good bye.

That was a life-lesson in itself. I felt bad for her family, but I couldn't be sorry she wasn't suffering anymore. I watched my mother suffer with fluids in her lungs. At the end, it sounded like she was trying to breathe through a defective straw. I whispered in her ear, "It's OK to go, Mom. We'll be OK." Not much longer after that her eyes, which been closed in a morphine-induced slumber suddenly flew open, she turned her head to look up at the corner of the ceiling, and reached up toward it as far as her arm would stretch, as if taking someone's hand. Shortly afterwards, she died.

That wasn't the end, though. My dad, her soul-mate, was sitting out in the hall trying not to cry. I had checked on him, but saw he wanted to be alone, so I went back into Mom's room. The lady who had been hired to take care of Mom and I were holding each other, crying. Suddenly, Mom sat up and took a deep breath. She'd been gone at least 10 minutes by then. I said, "She's trying to come back!" The lady said, with a small, affectionate laugh, "Irish!"

Then I said, "Mom, let it go." And she lay back and she was gone. I thought maybe her spirit had seen Dad crying in the hallway and wanted to come back to him.

15 months later, he had a stroke in the lobby of the Best Western in Stillwater, where he was visiting us. Ironically, it was Father's Day. He went into a coma and died 5 days later. I was there with my sister. It was easier to let him go because he had been so miserable and lonely without Mom. I knew she would come to get him. When he died, he went peacefully, and with a little smile on his face.

I hope none of this has made anyone sad. I do feel bad for the lonely souls who are left behind, but I don't see death as something bad. Even as a child, I never feared my death because I believed that death is no more than walking through a door from one room into another. Now that I've learned what happens when someone dies, I can only be happy for them.

This has all been a little profound. I didn't say any of it to convince anyone that they should feel the same way I do. I have just been writing what's in my heart. It's OK if we take different pathways. We're still connected.

Mine Eyes Have Seen... zzzzzzz

I did it again. This time I've stayed up two nights and two days with very little sleep. If I  can make it three, maybe I'll start hallucinating that the raw meat my roommate had pointed out really WAS on the ceiling and walls in my room. But I'll never make it that long. My eyes are burning in my skull like two embers. My yawns are as wide as the Rio Grande. My... insert your own cliché. I can't think of any others. "It was a dark and stormy...." Nah. Doesn't fit. Well, I tried. You're on your own now. 

Have you ever been the first person through the door at a department store sale, gone straight to the item you want to buy and discovered that, three minutes into the sale, they didn't have any? I have. I had the sale flyer with me and asked a clerk where I could find that item, only to have her say, "I'm sorry. We've sold out of those." Then have you started screaming that they'd never had any in the first place and the item they'd advertised was just a loss-leader, designed to lure customers in by a low price, and when they were "sold out" would show you some more expensive items that looked kind of like it? And then did you say in a loud voice that they would sell you whatever similar item you wanted at the first item's sale price, thereby getting a much better item at a really good discount? I have. Got my son a really nice, affordable, coat that way. They shouldn't have insulted my intelligence or overestimated my budget. Bah.

Let's see. What other irrelevant topic can I write about?

Have you ever noticed what a money-making production religion is? Spiritualism, too. I know that, in ancient times there was a wealth gap that made our current class wars look like an Country fair. I mean, when people were pretending that the first books of the Bible were being forged, they were full of tyranny, slavery, stoning people, making people kill their child just because,oh, God had a whim,  leading people through the wilderness for 40 years when --this is God's will, after all -- He could have just taken Moses straight to the Promised land. What kind of creator would be that cruel and sadistic, not to mention bloodthirsty and vengeful toward His own worshipers? And let's not forget Noah's Ark. According to the Bible, God saved Noah and his families, but was, logically speaking, therefore guilty of genocide 50 and more times over by drowning every other human. And Lot's wife. A pillar of salt? Really? Just for looking back after he said not to? No, God didn't write the Old Testament because, if He did all that unholy meanness, full of jealousy, anger, and revenge, he wouldn't be the kind of God anyone would keep following. I believe in God, but not as being separate from humanity. It makes sense to me that we are all made of energy, as is everything we see, feel, touch, and hear. And so is the entity we call God. We are all part of each other and of the earth, and of the  things humans have inside them such as spirits. Love, too.

I'm probably offending some of you. All I can say is that I don't begrudge anyone's beliefs except those of the Westboro Baptist Church members. And, I say with regret, not even those. If I'm almost making sense, I'm surprised because I am seriously sleep-deprived. Besides, these are mostly just ideas that aren't fully developed yet. I plan to read more about the connection between quantum physics and spirituality. There are still too many gaps. ( ha ha. Quantum physics joke.)

Forgive my ramblings. Goodnight. The God in me recognizes the God in you. Namaste.

Living with Lyra

This is a column from "back when."  It was published in the Stillwater Newspress July 26, 2008. My apologies for giving you a 're-run." That will probably happen from time to time, but I'll try not to lean too heavily on them.

Love and laughter to you all from me and from Lyra in spirit.

July 26, 2008

Living with Lyra

Kay Thompson, Editorialist 

Living with my 6-year-old daughter, Lyra, can sometimes be quite an adventure. Most of the time she’s affable and easy to deal with. She has a good heart. Her daddy said one day she was watching closely while he was playing a computer game. He finally lost miserably. Lyra patted him and said, “That’s OK. You can try, try again like I do.”

The other day, however, she got mad and was not fit to be around. A little background: We had gone to Oklahoma City for her chemotherapy. Lyra is undergoing treatment for a brain tumor. She did fine with the chemo, though she didn’t, of course, enjoy the process. But she was happy enough. 

She went home with her daddy to spend the night while I went to a hotel, because she had an appointment at the clinic the next morning and it didn’t make sense to drive all the way back to Stillwater, then get up early to drive right back again.

She was happily eating supper when she suddenly spiked a fever and started panting for breath. So off to the emergency room she went. This was at about 6:30. They never did figure out what was causing the fever, but it went down again so they discharged her, but not until 1:30 in the morning.

Needless to say, she was not well rested the next morning when it was time for her appointment. We figured it would be easy, since the appointment was with a neuropsychologist, and Lyra would just have to play games and answer questions.

All went well for about an hour. Then Lyra decided she’d had enough. The psychologist came to get me, because all Lyra would do was cross her arms and go “humph!” She really made that sound.

That was the end of that session. Lyra was clearly not going to be cooperative, so we made an appointment to finish the assessment a different day and we went on our way.

Looking back, I realize now I was foolish, but I took Lyra to another appointment that afternoon, to have her eyes checked. It did not go well. By this time she was really tired, and very angry — at me. Why, I don’t know, but she took care to let me know. If she’d been a cat, her ears would have been laid back and she’d have been hissing.

This went on all afternoon. She told me, in so many words, that she was angry with me, that she didn’t like me, that she wasn’t going to stay with me, and many other statements I choose to forget. My patience was definitely tried that day.

And on it went, until bedtime. The girl can really hold a grudge. She calmed down a bit after I gave her a talking to about her attitude, enough so that she allowed me to rub her back after she went to bed. She wasn’t angry enough to do without that. After a good night’s sleep, she woke up happy again.

So living with Lyra can be a challenge at times. I wouldn’t trade her for anything, of course, even on the days when she’s in a foul mood. She is always a delight to my heart, no matter what mood she’s in. She is, after all, my precious daughter.

### 

Lyra, age 6, right after her Kindergarten graduation ceremony. She was, as usual, in a pretty good mood that day. 

Two... Two... Two Days in One!

I didn't sleep again last night. I tried. I really did. I lay quietly, eyes closed, for two full hours and then I decided to do something more entertaining than stare at the insides of my eyelids.

Staying up all night and sleeping during the day is old news. Only I didn't sleep today, either. This isn't the longest I've stayed awake. Once, long ago, I stayed awake for three days straight.  When I started hallucinating that the walls were crawling up and down in alternating strips I decided I probably needed sleep. It was strange. I had the same hallucination when I was given morphine after an operation.  The only other hallucination I've had was when I took some medicine called Cogentin. That was a doozy. I thought people were in my car, trying to steal it. Also, I couldn't find Lyra. I called Jeff, her daddy, in a panic because I couldn't find her anywhere and it was dark outside. She was, of course, safely asleep at his house where she had gone, as usual, for the weekend. And it was about 3 a.m.

 So I went back to worrying about the three people I could see sitting in my car. There was an elderly woman wearing a coat that had a wooly collar in the passenger seat, a little boy wearing a striped shirt in the back seat. He looked like he might be about 5. A youngish man, maybe in his 20s, was in the driver's seat, but he kept getting in and out of the car. He looked frustrated

Of course, none of them were real, and I knew that. I even went out to the car and saw for myself that no one was in it. When I went inside I felt better. I went to check on Lyra, but she wasn't in her bed. I looked everywhere! In a panic, I called poor, patient Jeff and asked him if he knew where Lyra was because I couldn't find her. I was frantic. He calmly said, with a little less patience and a little more annoyance, "Lyra's safe. She's here, asleep." Then he added, "Have you thought about calling the police?" And I said, "I think I'd better."

So the police, who seemed just a tad lost as to how to handle a call from a woman who thought invisible people who she knew weren't real, but she could describe, were trying to steal her car. They took me to the hospital. I probably just slept off the remnants of the medicine and then never took it again. What a flabbergasting adventure.

Oh, did I say that was the only other time I had hallucinations? Not exactly true, though I only took peyote once. I was 19, it was the late '60s. You know.

On a completely different subject, remember how I said the only way I could meet Mr. Right in this place would be for him to wander into my room? Guess what! He did! He was lost, of course. The aides started to lead him away and I reached my hands out toward him, saying, "No! Don't take Mr Right away! Bring him back!" They took him anyway. I later heard what a brave adventurer he is. He went, wheelchair and all, right out the front door and when they found him he was going to different cars, looking for one to make his escape in. He has a head full of gorgeous silver hair, all in cute curls. I don't know. A man who still has all his hair is quite a catch around here. Never mind if he has dementia and doesn't make sense. I'm adaptable.

 Could be I'm a little giddy from lack of sleep. I'm about to drop. Why do I only stay up for hours and hours on the days I get my bath? Looks like I might miss another one. Oh, golly, I'm tired.

Nite y'all. Stay away from the Cogentin and Peyote. That stuff will make you hallucinate.

Flowers for your hair. Peace and love, fellow travelers.

Right-Side Up, or Wrong-Side Down?

I've said some of this before, so bear with me. I'm in a reflective mood, and I seem to have the infinite mirror effect going on in my brain.

In my lifetime, I have lost and regained thousands of pounds. Finally, after nearly 50 years of this, i decided that the only way I'd ever lose and keep weight off would be to get a cataclysmic disease.

I never believed that thoughts could manifest themselves until I got meningitis, became a paraplegic, developed a horrendous bedsore, became incapable of keeping anything down, became malnourished and well on my way to starving to death, thereby losing 110 lbs in about 3 months. And I never, in several years, regained any of it. In fact, I'm still losing, very, very slowly. (A word of caution to dieters -- Losing weight can change one's life, but nobody promised it would change for the better.)

After I had been bedbound awhile and could, at last, keep food down again, I decided that, at 62 or so, I had been dieting nearly my entire life and, by golly, I refused to diet anymore. I vowed to eat anything I wanted, anytime I wanted it. 

However, I hadn't entirely lost my mind. I'm diabetic and, after drinking a regular Coke caused my glucose level to soar into the 500s, my common sense kicked in. So now I do kind of watch my sugar intake. But I treat myself to dark chocolate candy sometimes, too. 

There's no moral to this except, maybe, "careful what you wish for." I'm thinner, but I live in a nursing home and, even if I were to find a geriatric "Mr. Right" here, it wouldn't do me any good because they don't allow fraternization here. Heck, they won't even let us close our doors. Besides which, I'm bedbound. If there is a Mr. Right in this place, he's unlikely to wander into my room. And if he did, it would probably be because, in his dementia, he'd lost his way.

So I'm limited to having a "to be expected" transference-crush on my therapist.  Not that having a minor crush on my therapist is bad. I discovered in junior high that having crushes could be fun, unless I tried to inject some actuality into them. Then they were heartbreaking, not to mention embarrassing.  So i know, although I have genuine feelings of affection for my therapist, whom I assume has little idea that I feel this way, I also know that our therapeutic relationship precludes even a close friendship. Otherwise, he'd lose the objectivity he needs to really help me. I've been through this before. THIS is reality.

But at least it gives me something to look forward to. Besides being able to see my "heart-throb" ;-) i look forward to exploring ways to make my life better. I still experience a feeling of fear that he will suddenly disappear. After all, it happened once. But, as he pointed out last session, that's a normal reaction. I assume, with time, I will relax and not worry so much about it.

I'm still a worrier. I've been concentrating on enjoying being alive and haven't worked much on that. I've been treating my worrying like I would treat a crying baby. I soothe it, reassure it, hush it, sing subliminal lullabyes to it. The only things I don't do in this analogy are burp it, stick a pacifier in its mouth, or change its diaper.  So far, so good.

My life as a child and teenager was miserable because of my chubbiness. I only recently realized what a blessing it turned out to be. Because of it, I learned kindness and tolerance. I learned that looking like you "should" was not a guarantee of good character. I learned that intelligence did not make anyone superior to anyone else and that the disabled are in no way inferior to others. I learned to befriend those who were persecuted by others through no fault of their own. I learned to stand up for people whose rights were being violated. I learned that freely given kindness makes a difference, even though that might not be apparent at the time. I learned independence. I learned to just take one day at a time. In other words, I learned things that made me who I am. Heaven knows, I'm in no way perfect. There's a lot left to improve upon. But I'm pleased to say, I believe I am the kind of person I would be happy to have for a friend. I'm currently working on that, too.

Thank you so much to my friends, famiy and "enemies" for the kindness and life-lessons. And thanks to Mike, my therapist, for all his efforts. I expect we will go far.

Love, peace and joy to you all.