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.