Monday, December 28, 2009

Take Three: My Xmas, present, future, my worth, my humanity.

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!)


japi said...

I'm speachless..... I have no words but your words will resonate ... and is stirred in me all ... I feel the strength to live despite your body does not respond as it should ... and yet this is life .... should be ... infinitely grateful to have discovered your world. a warm hug and special for you

Kathz said...

I'm sorry that you've had such a horrible Christmas. I know that blogging and sending postcards is important to many people and to you but I would also be pleased to know that sometimes you choose to use your valuable time in a way that is just for your happiness.

You are right to remind us that you are tellin us facts that are unpleasant but relevant to us all. No-one could doubt your worth and your humanity.

yanub said...

That top picture is adorable. I know it takes a lot of effort on your part to always include such high quality pictures. Thank you.

I'm glad you will remain in your Home, at least for now. I know Linda does everything in her power to make sure the Home you stay in the one you share with her.

Neil said...

Dear, wonderful Beth, I know you're not always telling what's really going on. I know that your life is mostly the pits, and that you give us the good highlights instead of the bad ones.

You have explained the bad bits of your life, Beth, and if it pleases you to gloss over them sometimes, that's fine with me. I like to read of your successes, too. They are, after all, more enjoyable than the failures.

But you write whatever moves you to write, Beth, and I'll be here to read it. Im not leaving unti lI find out whether you can blog from the "other side."

Love and zen hugs,

janne rantanen said...

Meh.. lifes a bitch, you just gotta ride her.

My own christmas was excelent but it just feels horrible to know that you and some friends i have, have had just horrible christmas, it makes my own problems seem so very small.

To be honest I don't know what to say, you're braver than I could ever imagine to be, so theres really no comforting words I could say.

By the way I'm starting martial arts, and I'm going to start working on boxing techniques as soon as my arms allright.

I've come to the conclusion that I've been fortunate enough to get a disease thats non-lethal, might aswell use handicap parking spots and drive myself to the limit to the best of my ability, lifes short I better not waste it sitting around at home being afraid of the world.

You're a huge inspiration. Don't die.

Janne Rantanen

Lene Andersen said...

these posts where you speak the truth about what your reality is like are so important. They are what may help us change society to respect the rights of the dying. So many are forced by their disease or the pressure of their surroundings to be silent about the experience as it gets closer to death - it is one of the reasons we have those inane Hallmark movies where death is so very pretty. It's why people are so afraid of the reality of death (not that it's their own, but others, so they run screaming for the hills) because they don't know what it's like. The legacy you're building by refusing to be silenced carries more meaning than I think any of us know at this time.

it really sucks that you have to go through it in order to make others change, though. it makes me mad that my friend is going through this horrible time. yet again for the 1000th (at least) time, I wish I lived closer so I could be there for you in person.

Blog when you can, do short posts, maybe just sign the postcards instead of writing on them? They already works of art and I think everyone will understand if you just put your name on them.

wendryn said...

Sorry Christmas sucked. That's a hard time to be so ill - too many expectations of a perfect snowflakes-and-fireplaces family time. I'm glad you aren't in a home like the one you described. I'm glad you aren't dead.

You are definitely still a person, even on bad days. I'm not sure how to make a difference, but I'm more aware of the need now.


e said...

I'm with Neil...I'm not leaving either...

Hugs to you, and I just ordered a copy of ZED.

JaneB said...

Not leaving either, and appreciating, facing, reading, learning from the hard posts as well as the funny upbeat ones. I know that this blog is 'quintessence of Elizabeth' - more so as your 'working time' during each day shrinks - and admire and love (friendship-love!) that Elizabeth, that inner you, more and more as time goes on. A warm virtual non-painful hug, and... I'm here, that's all I can say.

Baba Yaga said...

Yow! I'm sorry christmas sucked. More, I'm sorry your dratted illness sucks.

You're right, I don't want to think about it. I don't want it to be your reality. It's a stretch even to begin to acknowledge the reality you live: even when I do, explicitly (& inadequately), I'm talking to the distilled Beth of the 'good times', or at least the physiologically 'good' times.

But as it is your reality, I value your telling of it, editing though I know you must, of necessity. & doubtless sometimes of preference.

I wish I could give you more of the joy and less of the misery, of course, but the claiming both as yours, as life, as belonging together, *matters. When you write of your joy and misery - and your nullitude -, and choose your pictures to aid the writing, you write of humanity. No, the process of being ill and dying, an doesn't make you less human; it's *essence of humanity, in some way you are helping me to - not grasp, but dimly perceive.

Aviatrix said...

You are currently more articulate, and more capable of understanding things presented to you than ninety-nine percent of everyone who comments on YouTube.

Even if your blog entries dropped to the fifth percentile of YouTube intelligence, and that could probably be achieved by you inadvertently flailing at the keys during a seizure, I would still read it. Yes, I would log on to see "fyaaygsfgfacfb bbbbbb. posted by Elizabeth McClung at 3:03 AM". Because I'd know you were in still in there. Alive.

Aviva said...

I hope it's not inappropriate, but your emphasis on being Not Dead Yet made me want to share a song by a band I first heard in the early '90s that had a song called Not Dead Yet.

Here's a link to a YouTube video of The Bad Examples singing it:

Apparently Styx performed it too, but I think it was written/performed first by the Bad Examples. (Interesting trivia bit: The lead singer, Ralph Covert, is now a Disney singing sensation with all these tunes for little kids. It took me awhile after I first saw him on the Disney Channel to figure out why he looked so familiar!)

gentle *hugs* to you, Beth. I'm sorry Christmas sucked so bad. I hate that sharing yourself with us takes so much out of you, but I'm grateful that you still choose to do so. You have so much courage!

Raccoon said...


That's what I keep looking for when I open your blog. And, continually, I'm not disappointed.

Yes, I know. One day I will be.

Six in six. I know that those are good odds, but you've done amazing so far.

And I'm still here.

cheryl g said...

It has been a while since I have seen you have such a violent seizure. The seizures look so painful and I feel so helpless. Yes, it does burn a lot of calories but I believe there are better methods to do that.

I do realize that you are at a slower pace and that you run out of energy quickly. I like watching anime with you because it is something we can do together that allows you to be still and rest and save your strength. I love conversing with you because you are so insightful and fascinating but it is also important to me that you have enough oxygen.

I am so glad you are able to be at home. Linda and I have talked about that and we are determined to keep you at home and not in some facility. We want you in your safe place where the ones caring for you do it because we love you not because it’s just a paycheck.

Your blogs are written during your best times but you do show us what it is like during the rest of the time. It may be hard to comprehend for those who haven’t had similar experiences or seen you as your condition changes but you still work to teach us.

The teaching is important because you are right and 6 out of 6 people will die. Our society treats death and the dying with fear and denial. We do not afford quality of life or dignity. You are right, your bad day is also our bad day. That is a lesson society needs to learn. I believe that your posts do reach people and you are making difference. Your act of sharing your story, your reality, your pain will help change society.

I really like the first picture in this post. It is sweet and I have seen Linda watching over you in a similar way.

SharonMV said...

Dear Beth,
Celebrate another Christmas (even if it is small) during that little bit of time you get. A gift or two for you & Linda. Share a drink by candle light. Dennis is finally realizing that when I say my brain is not working, that's exactly what is happening. Can't hold a decent conversation, can't remember my own phone number. And that is nothing compared to what you deal with.

Our Christmas was OK, because we've learned what works for us right now. I've learned not to expect much nor demand too much from myself or Dennis. And I don't mourn or fret over it as much. Yes, still times of being morose, but also times of being content. But it took a lot of letting go, a lot of letting go. So that pain wells up some times.

I'm glad you got to do postcards. But you must try to learn not to push yourself too much. I know you have to push yourself (me too, or I'd never be able to do anything), but please try a little less pushing which I hope will mean a little less pain & suffering for you.


Dagny said...

What you write terrifies me. You are right. It is my worst fear. Death is my fear, all of our fears I bet.

I dont' always comment due to fear (ha) of saying the wrong thing.

But what you write, it hits me.

Thank you for sharing your world. Our future world. And you are right. We need to do more.

Anna said...

I hope new year will be better than christmas.

Mine was calm and fine, as I say christmases not spend at the ER are good christmases. (Since there always seems to be something happening)

Love Anna

FridaWrites said...

I admire you so much--so many people would be giving up from desperation at this point, not continuing to help others and reaching out during a time of such personal distress.

When I read your blog, I tell myself, "never forget," because what you say about dying and being so ill, about supporting one another, is so important.

I am so sorry that you were so sick on Christmas.

Anonymous said...

What a great resource!