I went boxing yesterday, not because I wished to, but because if I did not, I would not be strong enough to go boxing ever again. But you will see more on that later. These last seven days, two things have become clear: my care giving is and will remain in jeopardy and that my health and function continue to deteriorate.
I think that I believed that if I just kept posting and kept writing, that I would go on, that things would go on, in one form or another, forever. I looked at the future and all I could see medically was a no-win scenario. In chess, you can either accept defeat and knock over the king, you can play out the moves or you can try to find a solution by gambling; bringing in gambits to play with your opponents head.
In other historical no-win scenarios, either the person in charge has simply thrown out the rulebook or sacrificed the thing considered unsacrificable. Fredrick the Great of Prussia, in the dark parts of the war of the Austrian Succession looked like he had lost his entire country so he took to the countryside, and raised an army, leading his own calvary in the time of leaders doing that was centuries past. On Iwo Jima, by digging into the hills, living in conditions which required the breathing of sulfer, without any air or navel support, the 21,000 Japanese held out against unlimited bombardment and land forces outnumbering them 4-1. They held the opposition and continued for fight for the airfield for 35 days. Though Japan surrendered in 1945, opposition continued from soldiers on Iwo Jima for another four to six years (different sources). Of the over 21,000 troops, 216 were captured alive.
I give these as two examples of solutions to a no-win scenario. In one, a leader make his own rules and gambled his own life while in the other, defeat was inevitable, but regardless, it was contested almost to the last individual. A few days ago, a blogger I read, a blogger I identified with, whose posts had become more erratic, coherent but showing greater difficulty with typing, died. I think I needed to believe, because of the similarities between our conditions and his later speed of progression as well as care giver issues that his posts would keep coming, smaller perhaps but as long as he kept posting, the on-line voice would continue. But it didn’t. This combined with the lack of commitment and actual withdrawal by the care giving agency from it’s support of my care, I suppose it could be said I went a little insane.
I am far less terrified of the pain or the loss of function that lies ahead of me, than that future with me helpless, unable to communicate unless my care giver is bright enough to use my speech box, unable to receive proper care. Considering that my care agency, the only one, the one funded by the government daily changes shifts or sometimes cancels care without notification, how much worse will this be when I sit in a diaper of my own shit, wondering if they will cancel the person for today. A mind intact but left in fear that a care giver’s breakup with their boyfriend could result in abuse I would be helpless to stop or even protest. I realized that I could not fight this, and that I would be alone, and it filled me with a dread unbearable.
I told Linda that my goal was to get back enough hand function and arm strength to be able to hold a .44 steady at the side of my head, without tremors, and enough strength to pull the trigger…while I still could. I could face my own physical degeneration, but not the administration, bureaucracy and apathy that would be my source of security and future comfort.
Twelve months ago I was told my problem was P.A.T.’s. A little over six months ago, they were still stuck on B-12 deficiency. Yesterday after ANOTHER VIHA meeting at my apartment, which I managed to sleep after 5:30 p.m. sometime but was woken as my homecare worker dumped the entire utensils into the sink at 6:30. For someone’s whose stability of condition is determined by the amount of sleep I can get and I need 11 hours and hadn’t gotten eight hours combined, it was just another thing, just another thing.
I got ready for boxing and went up, not knowing that in hour, this is how I would look. I have talked about my “red side” and my “Yellow/white” side, in the picture, you can see the arm that is clearly red and the other that is yellow white.
I got there in time for bouts. I was in a dark mood and Ian wanted to know what was wrong. I told him a friend had died and he spontaneously hugged me which both made me start crying and want to hit someone very, very hard. The guy they paired with me wisely kept out of range. The second bout I got the second assistant coach who I had asked to hit me in the head for three minutes. I told him I would not even hit back for the first minute. I wanted to practice defense against hooks, jabs and combos. I got hit in the head a lot, but I got better at blocking and was going, “Faster, go faster” and he said, “The faster I hit the harder I hit.”
“Like I care?!” He did another combo and I yelled, “Faster!” Now when he came in and did his flurry of crosses and jabs the force of his hits had my front wheels of the chair completely off the ground, only by leaning forward was I able to stop falling backward. He would hook my head and I would throw a body shot and he backed up, my chair thumped back down. “Come on!” And I was wheels off the ground again, four and six combos with hooks and crosses. At one point I just grabbed his head and gave him three hooks.
“Oh, sorry. Aren’t you going to keep hitting my head?”
Next week he is going to add body blows. After my third bout, everyone got in circle for warm down stretching. My speech was already going/gone. During the last bout, for the first time my left hand and arm started to tremor as well as the right. I had noticed over the last five days that I had lost a great deal of left hand function, including being unable to hold a pen firmly or catch things. Since it is my wiping hand, I really hope that it holds out a bit longer.
Linda started pushing me home but I was pretty out of it, apparently I was having problems breathing, and my diaphragm wasn’t working right so I had to use my neck and ribs to suck in air. In the end, she pulled me upright with my head up to the sky. I had lost swallow function and this would cause problems later. She had to stop in the two blocks to home to get out the oxygen.
I have over the months been getting a lot of comments about how super-duper my life is because I am always out and about. Even my parents had this idea that because I do boxing and go to the park, that I had a great life full of energy. We realized that is because we take a couple weeks of photos of me at my best and then make them into a two minute video. I only show the best 60-90 minutes of my week. So Linda and I talked it over and I told her to start taking photos when I was, well, pretty much normal, or crap, which is the other 90%+ of the time. I didn’t know until later that she started last night when I was trying to keep up with people doing the “Warm down” at boxing class (hey, I was TRYING HARD!), and then more when she got me home. There is a one minute video of the clips if you want to see a bit of what I look like the “Rest of the time”
I showed this to my home care workers who all laughed hard at the clips because they see me like this all the time. This is what they refer to as “Not enough sense to know when to quit.” Anyway, I am glad Linda stopped filming at the end because the next while was spent coughing up congealed phlegm and saliva that had drained into my lungs. It came up pink. A quick thanks to Kay from the Gimp Parade who had sent me some tips on how to clear your lungs without lots and lots of coughing. Needless, with my head hanging over and the pink crap coming out of my lungs it was a real party. I was on the floor there for the next two hours. My overnight worker came and said that with my original coughing I probably just tore up the esophagus a little.
Turns out it was her call to H., the Juan de Fuca RN Administrator who got them to make the meeting last week to push me out of VIHA on a CSIL grant. She had called H. the morning they decided to call my “emergency care meeting” to tell H. to make sure when Beacon takes over next month they need to send someone with hospital or medical training. She told them: no one who can’t speak English, no one who panics or calls 911 over any little thing, someone over 5 feet tall and someone with the medical training to pull me on a side to breath or hold me upright to open up my lungs. And especially no one just off of the 10 weeks of training. H. kept trying to put the issue on my care worker, saying she hadn’t filed enough reports, make her cowed. My care worker just kept saying, “I’m not calling about whether I filled out forms or not, I am calling because you need to ensure you take care of Elizabeth, and that is what I am going to talk about.” Well, they ended up “taking care of me” all right. So we had a little laugh about that (don’t laugh after you fill up a bunch of paper towels with pink phlegm).
I got to bed but kept waking in pain, but better than some nights and I managed to get my own pain and muscle relaxant meds. I think her last words to me that night was, “You nutty buttercup.” That or “You think too much.” Earlier she had made a big deal because I kept sniffing Linda and telling her how good she smelled.
“Hey!” my night worker yelled from the other room, “None of that stuff while I am here.” (she’s straight)
I wanted to know what made Linda smell so good. She told me it was it Odor de Linda. “Mmmmm, so good!”
Nightworker: “Oh, you’re doing stuff again, aren’t you!?”
I fixated on one shoulder of Linda’s sleep outfit when she “remembered” she had left the sleep outfit on top of a lavender sac. So I told the nightworker it was safe to come out now, it turns out Odor de Linda is NOT naturally lavender.
Nightworker: “You two! And it isn’t even Valentines yet.”
I was up early for another meeting. About to wheel out when I get a call from the VIHA case manager, saying she got our message we want to talk to some people who are USING a CSIL grant to see how they use it and rate it.
Yesterday, somewhere, with Linda wheeling me home, one of my gloves dropped out. I went back today and it wasn’t there. Who takes one glove?
They started with hammers to prepare the floor for carpet laying tomorrow. I have another morning appointment. It turns that the sides of the entire hallway are lined with nails, all pointing STRIGHT UP. Okay, a problem, but not as big as the row of nails that I will have to roll over as they laid a strip directly across the access to the elevator.
I have to wonder about these guys. I said hi to them in the hall, they saw me wheel in. Then they lay a layer of nails set in wood with the points straight up across the access to the elevator and go home at 4:30 p.m. I know they won’t be done by tomorrow morning but I guess for once that I have to HOPE they work on my floor tomorrow.
I don’t feel the need for the gun tonight. Maybe you CAN get used to anything, even uncertainty (or maybe not).
4 hours ago