Wednesday, February 13, 2013

I am not sick, I am dying.

I’m not sick anymore. I’m dying.

This is not a statement from a close call or two, but from minute to minute, day to day experience. And worse, these are supposed to be the 'good months', not summer, when I get little sleep and my body autonomic system goes haywire.

There are still good hours, and sometimes a day that is something more than ‘endured.’ The physical side is paid for by doing what produces best results, regardless of the high cost in pain; fatigue and fewer hours of consciousness per week.

I have dreamed for years about a vacation, but even it if magically comes this year, after spring, it will come too late. I am selling what I can with Amazon and Ebay, without knowing if I have to earn enough for me, or Linda and I both. And Easter just 5.5 weeks away.

Just putting some DVD’s on Ebay is something I have tried and failed for months. It is hard not to have my spirit crushed knowing that any of the general population can achieve in 15 minutes what would take me two days of effort to achieve. Caregivers don’t end conversations, they simply walk out of the room, secure in the knowledge that I cannot follow.

I work on staying alive, and, on the bad days, saving a sliver of sanity and good manners, and the good days, working toward the goals of educating myself, reaching out to others in blogs, postcards and packages and inching towards Sakura-con.

I've thought about contacting that group for adults with less than a year to live. But I think I left it too late for Sakura-con. And while there are lots of 'pressing' medical type concerns, I can't think of any noble 'wishes.' I have it better than some, much much worse than most, both in care and the way the disease progresses. If it was cancer, it would be spreading everywhere. So most goals are about that day, that week, and hopes of a train trip, a trip up island. Going in the van while Linda picks up bread is exciting, vivid travel.

A prolonged connection of bad days, tied together with the fatigue days which follow them, have left me silent online the last weeks. I did manage to send out a handful of packages – gifts and cards. I plan, I desire. Last week I had 14 announced plans (where I indicate a day or several in advance what I would like to do: watch a show with Linda in the living room, go out in the wheelchair, see the sunshine). I achieved 1 of the 14 announced plans and 1 of my 17 silent goals.

I have a great lust for living. All the more because I am aware of how restricted I am. If Linda forgets to turn on the intercom, I have no way to communicate with her, and spend the evening alone, separated by frailty, and tech we can’t afford. How can people not be aware of the blessing in the smell of rain, of walking, of the ability to enter a shop, to eat and drink, enjoying the taste?

What would have been an eight or nine on my pain scale last year is now a two. And on a ‘decent’ day my pain level is at four. It isn’t pretty. It isn’t dignified. “I am not female or male, I am not Elizabeth but meat.” this I said after some hours on a day that was horrific. Not so much gore, but the brutality of being aware only of the pain and the body which traps me in with it. Linda says she doesn’t know how she would be able to ‘handle’ it. I think, at that level, it is handling me.

I lust for a crow, a pigeon, a hummingbird, the scent of something which doesn’t bring nausea, to see the ocean, the mountains. To have choice: I long, I crave a life with choice.

“I’m going out,” Linda will call out and she is gone. I want to say that. I want to live that. But it takes four hours to get ready to go out in my current state, and only if I have prepared the day before also. I struggle from envy of grocery shopping, or cooking. Now, I exhaust myself in attempts to survive, to continue, and so trips out to exercise end with two days of nights too painful to sleep. It drains the choice out of it.

Before, I was dying slowly, making sure I didn’t end up a statistic due to neglecting something I should be doing. Now it is like a cloud around me, I breath it in and out, this dying. Maybe it is the pain, or the loss, or the lack of stability and control.

I am desperate. I know no other word: desperate straits. Desperate for a voice, a visit, an email, a note in this sea of silent thoughts. I am desperate for friends. Desperate for something, anything on those bad pain days to take 25-40% off, either from listening to a lively visitor to some particularly good DVD series. I can’t watch the intellectual stuff on bad pain days; just the bip-bop-pop of quick action, set up every seven minutes for a commercial break. The BBC and Swedish or Japanese series for days when I am not bound in a pain haze, to remind me that there are wonderful clever people in the world, and in rare books and telly, they talk to me.

I wish I could be pleasant. And I will try to blog more about the small things that might interest you, or have interested me. But it has been getting bad more and more for months. Maybe there was pride, but when I sit right now, my hair uncombed, and myself unwashed for two weeks, how will pride assist me? Frequently I don’t eat because the food itself is too heavy for my hands to hold. Or worse, someone walks in and moves something, and by the time I realize it is now out of reach, they have left. And they may come back in a few hours, or not at all. I have sat in INDY more than once for 25 hours because I was took weak to get up unassisted, and Linda went to bed, forgetting to come by to say good night. Or sat beside rotting food because caregivers assumed someone else would take it away and I sit for eight hours waiting for a caregiver than has been cancelled. This is not 'bad', it is 'normal', life does get 'worse' (still somewhat confused on VIHA's 'Since you aren't getting showers, we are telling the workers not to shower or bath you' policy).

Having a string of days where there is something to drink, and being remembered, even some basic advance communication: those are the salad days.

I keep fighting: but having so many dreams and plans smashed each week upon week increases the nightmares and the fear. Every time I lose something else, or go to do something I could have done before, but now cannot, I love living even more.


Anonymous said...

Beth dear, we are all dying. Some of us will die today, others will last years or decades. But eventually we WILL all join you. I have read your blog for a few years, tried blogging myself (it didn't work; it's not for me), learned a new activity, learned about anime (Ghibli!), watched a tv series because of you. I've done a lot because of you, and learned a lot from you. Thank you, Elizabeth.

And thank you, Linda, for doing your best for Beth.

Love and zen hugs,

Devi said...

"How can people not be aware of the blessing in the smell of rain, of walking, of the ability to enter a shop, to eat and drink, enjoying the taste?" - This needs to be... well, maybe not tattooed somewhere, but remembered.

I'm here listening (reading).

Kate J said...

What can I say? I'm so very sorry to hear that things have got so very much worse for you - even though they were already worse than I could imagine. Talking to a friend who lost his wife (also an old friend of mine) to motor neurone disease just before Christmas, I have some idea I guess but cannot know what it is like to be you or to experience your pain. Like you, my friend was basically trapped, both in her home and in an ever-deteriorating body. She knew what she wanted but it was getting further and further away from her, those simple pleasures of life. He said she was so sad never to be able to visit the beach again or to enjoy food, all those things that when she was well she would have taken for granted, never even thought about. She desperately wanted to live, to see her kids grow up. No comfort to you, of course, to hear about someone else's illness... sorry.
I think about you a lot, but know there is nothing I can do, except keep reading your blog I guess. Like Neil, I've learned a lot from you, come to appreciate and enjoy things I'd not previously known about. I feel deeply privileged to have been able to follow your blog, read your story, count you as a friend. If there is, actually, anything I can do, more than a gift voucher or whatever, I'd like to know.
Thinking of you...
Love & peace

Anonymous said...

Cheryl here…

After being away for several weeks while the ferry was out of service I was suddenly very aware of how weak and frail you have become. Intellectually my brain understands that you are dying and that end is coming closer fairly rapidly. Where I used to think, “We’ll get through the spring…” now, I think, “If we can just help Beth get to one more Sakura Con…”

However, my heart is still fighting accepting the truth of your dying. Even now, in the face of all the evidence my emotional side wants to believe that you will rally. So I find myself in a weird sort of denial where I acknowledge the truth in my head but emotionally shy away from it.

I am honored to be a part of your life and I will cherish all the time we can have together. I will continue planning logistics to allow you to enjoy what time you have as best you can. I believe that we will be at Sakura Con and with NDY’s help we will be able to make the most of the trip.

Tina Russell said...

I’m sorry things have been so miserable for you... I’m really grateful for you rousing yourself from the dead enough to talk to us, it must be incredibly painful just to do a long blog post like this these days. You’re someone very important to me, you always were and you will be forever, long after you’ve passed. I’m so glad that you have touched my life as you’ve touched so many.

Lailah said...

Dear Beth,

I love you. I'm sorry I've been gone so long. It's been enough memory-loss cycles I don't know if you'll remember me right now, but if you can check your spreadsheet you'll see the record of the correspondence we once had, the emails and postcards and packages sent and received between us for years. If you still have pink bloody-clawed bear puppets, that's me, and if you run across homemade buttons with references to squirrels and underwear, that's me as well.

You and the blog were once one of my few bright spots in a world that had narrowed to the few feet around my bed. Your words and your stories and your strength and your humor and your brilliant, clever, vast mind. You connected me to the disability community online and you were the first person I ever thought of as a friend who I'd never met in "real life." Knowing you changed my idea of what "real life" is.

Now my world has broadened and maybe I'm living your life in reverse, because I'm finally in graduate school (although I can't see myself ever getting to the point where I can take up fencing). But the toll is immense and I drag myself in and out of bed and I can barely manage to engage with the people right in front of my face, much less go seeking out my distant and far-away friends. I miss you and I think of you often. I wonder if you're lonely and I write you emails in my mind and I dread the day I'll come to Screw Bronze and find it has stopped updating. But still I don't come. Or maybe that's why I don't come. We used to talk, you and I, about the people who said, "I could never endure what you're going through" (Oh yeah, what's the alternative? If there is one, let me in on it!) and about the people who gave up or drifted away because it was "too much" for *them* to handle.

Everything is too much for me to handle these days, and while in my case I think it's the distance more than the dying, I'm still writing you emails in my head but not actually typing them out and for that I am truly sorry.

I'm glad I'm here now, though. I'll do my best to stay connected, though my best probably won't be that great. I am sending you lots and lots of love.

Noiseyworld said...

I'm so sad to read what's been happening.
As Lailah termed it: I'm a drifter, in that when things are bad in my life I have to put myself first and drift away but I do drift back again to catch up with your ongoing adventures and lovely photography :)
As usual I wish there was a magic wand or even a half decent care-package to make your life livable but the only thing I can say is I'm thinking of you and I hope you have a fabulous time at Sakura con :)