Fighting in the Valley

Dad: They were fighting there, in the valley, to a man. Fighting and dying.
Me: What was the name of the valley, Dad?
Dad: (In an eerie sort of voice- one that I will never forget) That's the thing. No one knows, to a man. They just fight and die, and none of them knows why.

I've no clue why this last bit of conversation keeps rolling through my consciousness. Over and over, and the tone of his voice when he talked about the valley. It pulls at my heart. I've never heard him talk like that- almost as if it were someone else's voice. Maybe it was. I don't know. But it's burned into me with a sweetness born of his longing to tell me how much he loved me. For a need to wipe away over 50 years of pain and contention.

Yes, there are times when the pain peeks through. When I remember words as whips, anger and the need to control and cause pain. But mostly now, I remember that valley, and the reverence with which he spoke of it. I realize that the two of us, by virtue of our physical infirmities, were soldiers fighting in that nameless valley. One of us fell, and one remains standing. And still, we don't know the name of the valley.

Taking a Breath- May 31

It's very strange how life goes on when you think it really needs to stop and take a deep breath.

And Then It's Done- May 30

Laid dad to his final rest today.
The world is a strange place with neither mom nor dad alive anymore. Very strange indeed.

Quietude

"Listen to yourself, and in that quietude you might hear the voice of God"
Maya Angelou

And then He Moves On- May 27

Dad died this afternoon. It was his wish- his deepest wish- to not have to live through the hell of being trapped in a body that no longer functioned. I'm glad his pain is gone. I'm glad the horror of being in a body that had failed him is gone. I am glad, so glad, he is at peace.

Love you Dad. I'm glad we had our night. It meant everything. Absolutely everything.

Hangin' with Dad- May 17

At the home watching dad play with his underpants. We were struggling for control of his water mug, and I wouldn't let him take the lid off. He looked at me and said "You have all the markings of a bitch". I laughed hard and said- you say that like it's a bad thing. Heh.

Hangin' with Dad- May 16

Hangin' with Dad today. He fed himself mashed potatoes! That's pretty huge. And he has a sense of humor about stuff today. He tells me to quit being bossy, I tell him if he did what he was supposed to do I wouldn't have to be bossy. Then he tries to sell me to the nurses. He's not having any luck with that. He also stood up for the first time in days. He's very present mentally. Keeps telling me little factiods he's learned over the years. Was concerned about the water pressure in the toilet. Heh.

April 27 rehab miracle

Well, there are miracles, and then there are miracles. We took dad to a rehab facility Friday evening. Before he went, we had to constantly struggle to keep him in touch with reality, to keep his clothes on, to keep him alive.We were all convinced this was it. The doctors said there was simply nothing left to do but keep him comfortable- which wasn't happening. I can't begin to explain the stress we all went through, staying with him there in the hospital. Exhaustion trying to keep him in bed and dressed, dealing with the hallucinations, trying to keep his CPAP on until you begin to get hallucinations yourself, working out schedules to sit with him. He was unable to move his legs, and was beginning to get bedsores.

Saturday? Dude is sitting up IN A CHAIR! He told my sister- "the doctors keep trying to put me in a grave, and I keep digging my way out."
Truer words were never spoken.

Keeping reality in the picture, he's still in renal failure. His heart is still pumping nearly 0%, and a few other organs are dying. He's still not long for this world. But at least he will go on his own terms, and not in a mindless haze. Thank you Lord.

Metaphoric Closure

Illness has a way of stripping away all the excess fat from your mind. Even if you find yourself trapped there- inside your mind, that is- and have difficulty relaying that information.

I've found this to be true with Dad. Since he's no longer being drugged to "keep him from being agitated", he's much more communicative. My sisters and I have been able to discern that he is cognizant most of the time. He's aware of what's happened to him. Sometimes he's able to relay information very clearly. Mere moments later, he's talking about gunpowder and making bullets and such. He's also full of little factoids- as he always has been- and often they are correct. Sometimes they get jumbled in that area of his mind that makes communication difficult, and at times impossible.

We talked a lot yesterday afternoon and night. A lot. Most of the time we spoke pretty clearly, but as often as not, we spoke in metaphors. See, I get that. A couple of years ago, I had a similar brain dysfunction due to a combination of circumstances which have yet to be explained to me. I was trapped inside my mind. I knew what I wanted to say, but the words were beyond me. I had to try to relay information in metaphors. That awful period in my life prepared me for this. As hard as it has been seeing him in the hospital and rehab and a rehab/nursing home, for the first time in our lives we are able to communicate with each other. The language of metaphors has turned out to be the language we needed all along to communicate.

We spoke of illness in terms of battle. Of all the men in the valley getting killed, trapped there. I asked him what the name of the valley was. He said that was the thing- the valley had no name, and not a man there knew what he was fighting for or where. Then he told me I had a campaign to prepare for, and that I was well prepared. I was a "valiant soldier", and I would win. None of that was gibberish to me. He was referring to my MS, and various other physical problems. He was telling me to stay strong, and that I had been strong. And that he was proud of me. It was a long talk, but a good one. He was very very pleased that I understood him. He rubbed his hand up and down my arm, stroking it in much the same way I have been doing to sooth him when he was agitated. When his mind hit on the right words, he told me what a good talk we had had. I had teared up during much of the talk- especially when he called me a valiant soldier.

All this time I never felt as if I had his respect. He's never been able to deal with someone else's illnesses. It makes him extremely uncomfortable. But the problems I've had with Multiple Sclerosis prepared me to understand the ones he's had with diabetes and his heart condition. I've dealt with near blindness, being unable to walk, being unable to communicate. I understand how difficult it is to have to ask for a ride from others over and over. To have the people who so generously offered to haul you around gradually fade into the woodwork. To have your independence ripped from you. To have your psyche at once stripped bare and yet buried beneath medicine and tests and the fears of family and friends who think you're not really there- that you somehow don't understand what is going on. You get talked about in the third person when you are sitting right there.

We talked about less heavy things too. About how the well water at our home tasted so good in the summer when it bubbled up out of the hose. It was probably unsanitary as heck, but who cared? It was ice cold and good. Natural, with no chlorine smell.

We talked about many things. Grave things. Silly things. Things that have too long gone unsaid. He said he didn't want this to ruin our lives. That he knew we loved him and we didn't have to be there all the time. In the heart of him he truly wants us there, and sort of loves the attention even under these awful circumstances, but he wants us to have lives too. That he said very clearly.

I kinda love this language of metaphors. It drops away senseless verbiage and gets down to the root of the idea. This could be the last such talk we ever have, or the first in a long line of talks- in his condition we simply don't know.

For now though, we have our special way of communicating , and that sorta works for me.

Love you daddy. Keep fighting in that unknown valley. You can win.

Lost in the Aether

I had originally posted this long and perhaps fractured ramble on FB, but as it so often does, FB becomes snarky and evil, and vomits it back into the aether. Erego, I shall go back to either my trusty notepad (the physical one with paper and stuff), or Word (provided I am electronically permitted to use it. Last I heard, my permissions were a little iffy...) which is moody and at times a bit of a shit.

But there it is. I've also been encouraged to simply scan my longhand notes as they would lend an air of artistic fair. Mkay, you asked for it. Be forewarned- I constantly change the shape of my letters (for example- [well, that doesn't translate with a keyboard], so you'll just have to hang on and figure that out. It also changes by mood and by writing utensil. And also by how close I am to the bottom of the page. Fortunately the size seldom changes, so there are no worries of it becoming microscopic (as my southpaw daughter's does.) Additionally, I dislike erasing and instead do the old editing/nursing standby and simply scratch through it one time, thereby negating the error but not completely eradicating it.

Well then...here we go. Again. Once more- into the breach dear friends!

'Kayso, I was considering doing a blog again but couldn't remember where any of my blogs were, so I figured at some point I would get to it. Then I had to sign into Google to post a comment to my daughter's blog, and there was mine! It's a miracle! I can't believe this thing has been here since 2005. Caity barely had breasts. I might have just moved into my studio at Old Alabama Town. I was 3 years into the Tysabri study. I was 44 years old. Clinton was president and may or may not have had sex with that woman. And he was sleeping on the couch either way.

At any rate, here I still am, and it's 2012, my child graduated from LAMP a year ago, my husband has eked a bit closer to a retirement he will refuse to take even though he needs it, and that aforementioned pain from many years ago is still present in various part of my body. But we shall speak of it no more! Ptui! (Any Buffy fan will get that line. For all the luzers who never watched Buffy- I pity you.)

Since it's been about a year since I posted that hideous picture of Andrew (it was probably taken in 2005- coincidence? I think not...), and since I'm ever so much older and life is changing at an alarming and challenging pace, maybe I'll get back to doing this. Who knows. Who cares.

Laterz!

Eli

He was angry and balled up in a knot when he came into class. I'm not a teacher, but I've seen this anger before. I don't know where the anger comes from- maybe because his mother is white and his father is black. He shouldn't be too angry at them though, because they gave him his angelic looks. At any rate, he was pissed at the world. I decided that he would be my special project, of course. So after I handed out assignments, I made a special point to compliment him, using his name each time. At first I got grunts and mostly ignored, but eventually, he met my eyes. Then he smiled at one of my lame jokes. By the end, he was just as excited as the rest of the students at being there. I got to talk to his grandmother. I told her how talented he was, and how much he belonged in Baldwin, the middle school for the arts here. She was so excited. She wanted to know if I had any pull with them. Of course I don't, but if I did Eli would be on my short list of kids. He has talent. Big talent. I've seen a few of them come through this class, but he has the most potential of all of them. He's smart, he's able to control his hands. He's just not able to control his temper. But if he had art- Oh if he had art all the time, he would be a different kid. I can see it. Goodbye Eli. I hope I see you again.

Short hairs

So I got my hair cut last night. A lot. It's in a sort of pixie style, very short. I think it's sort of cute, but Tom and Caity loathe it. THey say it's too short. What they don't understand is that I don't want to mess with longer hair. I want to wash it and be done with it. They don't understand not being able to lift your arms up from MS fatigue. Well, who does except for other MSers?

I will get a picture made and post it if it's not utterly heinous. It might just be as bad as they say it is.

I forgot...

I forgot to post anything here in a while. Sorry. TOo much to do.

The perfect (raw) turkey

It was perfect. Yes it was. It was gorgeously browned, skin crisp, meat moist and flavorful. Just perfect. Except for the raw part. So we cut off the perfect breast meat and threw the rest of the carcass back in the oven to cook. The dressing is cooking at the same time, thus assuring that nothing will be finished on time. Oh well. At least it LOOKED good.

Luddites and other fearful creatures

My daughter's teacher is a Luddite. Of course, I had to explain the meaning of the word "luddite'' to HER, because, well, she is a 15 year old girl and not privy to all words in the dictionary. Unlike myself, who has been privy but has forgotten all of them now. Except for "luddite", of course. I told her to call her teacher a luddite and see how he took it, but she's afraid of him killing her (something about a pistola), so she is going to tell her friend Jacki who will then call him Luddite and ostensibly be killed by the pistola. Good times.

So. There is the smallest of possibilities that I could have leukemia. Now ain't that a pip? I would dismiss it out of hand if it weren't for the fact that I have several other rare conditions. It just seems very unlikely that ONE person could have so many different diseases that are so rare. But there you have it.

What would I do if I actually DO have it? Well, die I suppose. I don't know what else would happen. Tom is freaking a bit on me, although he seems to have calmed down some now. Tom's mother died of leukemia. I don't know if he could handle it at all. I don't know how much I could expect him to handle. Truly.

Sunday Memories

A song on the radio brought back a very vivid memory this morning. I was suddenly sitting in the old country church my grandparents attended, listening to a tinny piano bang out an ancient hymn, and I was wearing a frothy confection of a Sunday dress with a binding bodice and puffy sleeves. There was a white hat and gloves and pinchy patent leather Sunday shoes. It was probably in the summer because all the windows were open. Industrious wasps and dirt daubers buzzed in the corners building nests that were destined to be broken down eventually. Somehow they weren't quite fooled by the blue ceiling paint that lore said ensured their absence.

I gazed out the window to the tiny cemetery beyond. That cemetery always fascinated me as a child, with its population of ancient tombstones covered in small trinkets. For some reason we never tried to pry those small treasures from their places among the dead. Somehow they seemed right- they were home.

This, of course, never stopped us from playing hide and seek amongst the graves and in the small woods beyond the church. My cousins and sisters and I were a sort of girl's club. It was unofficial of course. We were an impenetrable sisterhood of secrets and giggles, mysterious and raucous at the same time. The six of us were bound back then by our pouffy dresses and how fast we could get out of them after church.

AHA! AHA I say!

I KNEW IT! The doc said I *might* have a small meniscus tear, but he felt that most of my pain was coming from my OLD KNEES. As if. He said that the exploratory arthroscopy would remove the damaged tissue and such, but he doubted that it would stop my pain. Well. TOday when they did the scope, he found a substantial meniscus tear. HA I SAY! HA! I KNEW IT. Freaking tell me I don't know my own body.

At any rate, he repaired the tear and removed some of the damaged tissue, and I should be good to go in a few weeks. I start physical therapy on Monday, which should be tons of fun. But I am so relieved. A real solution to a real problem. God is good.

Like a shark through shalllow water...

I am fidgety and a perpetual motion machine right now. I am a shark slicing through the water, but without the appetite for sea lions. Oh, I'm sure to a shark a sea lion is mighty tasty, but sentient barking blubber does not appeal. Oh no it does not. I like my fried critters dumb and dumber.

It's that time of day where I either whip up a fabulous meal, or I succumb to the whinging of my spouse and make hot dogs. I'd as soon have fish (sea lion alert!), but I had that last night, and well, eating fish makes one smell fishy at times. I don't really care to have chicken. Beef might be all right. Veggies would be better. Okay okay, time to break out the cook book. TTFN.