Okay. Actually not okay. Ill.
Xmas sucked. Sucked because I was only awake just over seven hours, and of that, I was in the bathroom with cramps for two hours of the time (that was actually my second best time of Xmas, ug). Three hours were spent in seizures and seizure cycles including according to Linda and Cheryl a very large very violent grand mal, which bruised the back of my head for starters.
The other two hours were spent going, “What, do I have to go to bed already? So what if my fingers are blue, I’m just……” (passes out).
Turns out unlike beating yourself up metaphorically or inside, having a grand mal/tonic clonic of extreme flailing causes sprains and strains and bruises and torn muscles and if you are unlucky dislocations. So beating yourself up is not really a metaphor. It does however give a full body workout and burn lots of calories. I decided to see the squirrels, but with the cold it was ill timed and sort of sent me back to start (The seizures and passing out), I did not get $200, I did not get a house, nor was given a utility company.
I did get morose, if that is any help. And a bit of ‘poor pity me’ (if swear words thrown in are ignored). Also I tried yesterday, and today to do the two hour writing of the blog about the grand plan involving my future and the PLAN. But didn’t get that done today either. In fact, I was so ill I slept through/could not move during daylight and missed all picture taking opportunities. Did not get to play with Lincoln Logs. Did not get to organize sock or any other drawer. Did how realize with appointment tomorrow morning I needed to get the postcards done today. Turns out that 20+ postcards took me, er, about 10-12 hours. So that kind of sucked on the time and efficiency scale. They are however postcards I like and wish that I was a lot faster.
But that seems to be the theme of right now, accepting that my hand will hurt really bad if I write for 10 minutes, accepting that I don’t have hand or arm control, accepting that I have, at most, two hours a day in which I can talk to someone like, well, everyone else. I and Linda and Cheryl realized I now speak slower (about 3 to five times slower) and move slower, and just operate slower, and if you come in on real time, I can’t understand you anymore. That I am in a Home, like a Home where they make your food and put you to bed and that is where you live the rest of your life. It is just that thanks to Linda just sucking it up and us finding this years annual rent increase, and the two new meds, that Home I will stay in will be here. Here, for now, and not at some community care center where one worker comes around and gets you on a bedpan and if you are done or not by the time they get back, that is it, because the mattress is waterproof and I would be wearing adult diapers. It isn’t pretty, but it is the truth.
Sadly, my blogging isn’t the truth anymore. Blogging, the ability to blog, is the BEST of me, is me carefully trying to have a good day, and sometimes forcing myself into a fever and illness to finish. The days I have seizures, the days I can’t talk, the days where all I can do is sit with my head in the headrest and watch the DVD on the computer is what is the TRUTH. Those are days I sleep 15 hours, I am on oxygen all the time. I am not articulate, I am not able to understand things, I need assistance. This is the disease. And I am the embodiment of what we fear will happen to us. I am the person who if shown on nightly news makes people turn and say, “If I get like that, get a gun and put me out of my misery.” Because I likely might not have the strength to lift the gun, or hold it steady, I might use the arm support of the chair and the pressure of my temple and then have to struggle with the safety switch. See, that’s reality of even trying to shoot myself, and yeah, it’s going to get worse. But it is MY misery, and it is my joy. I fight every way I know every day and if I give up and give in, then all those 10K’s and all the boxing and everything will mean nothing because I will be dead. And I am not dead. I might be soon, a little sooner than I hoped. But then again, I might not.
The important thing: I’m NOT DEAD YET! And second, hard to blog when I can't move, so will keep blogging as I can. Because even in seizures or like last night when the pain of my back and spine was so bad I locked my hands on the bars of my bed and bit down and screamed, it IS, I AM, and I still live. I still think.
If all people can do is look at the outside, and judge against that, or look at what is lost and judge against that, then yeah, life is sucky. I have days where a gorilla trained in sign language is more articulate and has higher function and mobility than I.
That does not make me lose my humanity. That does not make me an ‘other’ – that which is feared or which we turn from in horror, or stare in facination: fearing that we will feel as they feel, or feel sad or other emotions. So we turn away.
There are 6.2 Billion people on this planet. Of which 6.2 billion people WILL DIE. I am NOT the other, I am not a ‘non-human’, I am perhaps the very aspect which we do not want to think about, do not want to look at our bodies and think of them rotting, flesh peeling off while alive. But hey, I have DVD’s, I have a computer, I have a wheelchair with a headrest. Hooray for modern technology. If what you read scares you, then figure out how to improve my quality of life, because it will be YOUR quality of life. Figure out how to change the society so the rights of the dying are enshrined as well, the quality and dignity of life. I support more disability rights, as while 1 out of 6 people will have a chronic impairment or disability, 6 out of 6 will die. Maybe time to start realizing, that MY bad day, is in a way, YOUR bad day (you just might have it yet).
But I’m not dead yet. Okay. And the postcards are done, and by the time you have read this, some are already posted, the rest on the way.
I go on, slowly, but with purpose. Yes, I may put more energy, more effort, more ‘effort equity’ and ‘work equity’ into ONE postcard or replying to seven emails as you may put into your whole day. Quite probably. That’s my choice. And that’s how much I value each person. Why should I be ashamed of that? Why should THAT make me less than a person?
Okay, take three on the Plan Tomorrow (and every day until I have the strength to do it!)
20 hours ago