Tuesday, November 15, 2011

Easy: I’m in a wheelchair, so I’m good Hard: Wheelchairs transport, I’m human

There are people who I share my life with. There are people who share their life with me. There are people who I write to, but I don’t open up to, because of being hurt in the past. There are many people who, may or may not communicate much, but don’t open up (for reasons only they will know).

Though on Screw Bronze, I try to show a portion of my life, and now, in 2011, I try to show, with more clarity and honesty, what life is like for me. That includes not just who I am and what I stand for, but also ‘the daily grind’ and the cost physically of doing things. Perhaps I hide the emotional cost too much.

Even so, I will never be the person that those who read this blog want me to be. If 100 people read it, that is 100 different ideas of who I am, and when I cross a line that a person thinks I shouldn't or wouldn't, then I am not who they want me to be. I suppose that is part of being friends, in that we learn to adapt ourselves and accept the changes we find and learn about each other.

I can never be who Linda or Cheryl want me to be. For them, it is because I am imperfect (and being imperfect, I will fail myself, I will mess up, I will offend, I will let them down), but also because a disease which affects the mind and emotions leaves the other person in a confusion place. Tonight, something triggered me, and in fear, panic, and actually reliving the pain of a previous event (at some moments I thought it was those weeks ago), I emotionally over-reacted, leaving Linda confused as to what she had done in the NOW. I don't know how well I explained that.

The last two nights I have had such pain I was hallucinating from the pain, and Linda talked to me, rubbed me, as I moaned with each breath, and I bit down on things or clutched plushie animals hoping I didn’t break a tooth or praying for sleep. I am certain I almost died. Yet, during flu season, people will get sick and will feel horrible, and that horrible will become intolerable, until it seems like it just can’t go on. That it is impossible to go on, with that fever (like that one I had for 40+ days straight) or the pain, or the respiration agony.

In 2008, as an attractive female in a wheelchair, looking good, talking sexy and with literally 100 times the energy I have now, I could travel, edit photos, write and blog daily all at the same time. I was writing for Ouch!, for here, and getting interviewed in magazines, newspapers, radio. And I knew my disease would kill me, that it was terminal, and I couldn’t stop thinking about that, any more than a person who has been diagnosed with cancer and shown the X-rays and the CAT scans can stop thinking about it.

Only now I don’t think about it, or write about me making jokes with doctors, or being sassy during some odd test, I am living the ebb and flow of dying.

The pain medication I am on now is a couple HUNDRED TIMES the pain meds I was on in 2008.

In 2008, I traveled because I had enough energy to not only make money and look for jobs, but write for free as well. I have not, beyond the advance of $1000 made money from Zed. I moved here because Arsenal asked me to, and put it in a contract that I be ‘available’ for promotions (which they never did) – so I spent about $10,000 – Zed was noted as a ‘really good book’, I won an award, I got in the top 100 books of the year, and I was the debut book of the year. A good start to a career, for only the cost of $9,000 (5,000 pounds UK). Arsenal took all my other writing, including the promotional material they sent to presses, sold film rights, sold electronic rights – none of which was agreed or contracted and they kept all the money for it. Arsenal was listed as ‘best of Canadian Independent Publishers’. Just a hint of how things went fiscally, and how it goes for a starting writer, who then gets really ill and has to decide to write another book or blog a life of being ill. I chose blogging. About 50-70 people who shared their lives with me have left, 14 have died. Another 800 individuals simply didn’t write back, while about 140 stopped writing or while we exchanged gifts, packages, letters and postcards, they simply stopped. Looking at those numbers it is hard to see how I had that energy, but I did. When doing 80-90 postcards each weekend, with the help of Cheryl and Linda, it was possible.

Now, I take the chances I can. I had the chance to do the Terry Fox 5K walking and I did, though I would not be able to do that now.

Writing about dementia lost me friends, writing about walking lost me friends. Perhaps for people who see more than 6 people in a week, that doesn’t seem like much. I get more hate emails than I get conversational ones most weeks. That is just how it is.

For me, writing about dementia was writing about both my life and something that was important. I hear people talk about how horrible it was for THEM to watch someone going through dementia. There are several million people who will attest to the living HELL of Dementia and a few hundred or thousand people who know that life with dementia doesn’t have to be Hell. It can be emotional hell for those who are close to the people with dementia, but it doesn’t have to be hell.

I had my shot at walking and I took it, whether it hurt my heart, shortened my life or not.

Now, my mobility is severely restricted and even when at my most lucid, I struggle with clarity. I don’t just jumble letters or words, I think I am writing one word or sentence and find, a day or week later, that I wrote something very different. To think you wrote about your head and find you wrote gibberish about a ‘bed’ lets me know that great writing takes focus, craft, patience and love. My memory is also getting much worse, where, like crab-grass, even memories from before being ill are getting lost, swallowed up.

The reaction to my writing about dementia has been mostly animosity and denial. If the choice is between someone who HAS dementia and the ‘common belief’ of those who don’t on what it is like, people would rather choose the incorrect ‘common belief’. I am not what I could be: a person who could help explain to those working in health care what the second most common type of dementia is like (a dementia expert) for the same reason people don’t want to hear their children are gay, or trans: because they would rather hold onto a lie which they are comfortable with than face change.

Because I walked, because I am not a stereotype of plucky or inspirational, because I am most of all, a human, who has a disease that is complicated and nasty, there is a distancing from wheelchair users as well. It was the reason that I, who puts up no awards, put up that one. Because who goes looking to be the ‘wheelchair award’ – I am a chair? I said at the BBC that a wheelchair is a mobility device, and I meant it. I said I would trade it in for something better if I could, and I meant it.

To look up to a stereotype and shun a peron is easy. But then, weaknesses often are. We are cruel to each other because it is easy. We take the easy path, even when we know it will lead to no good. Why? Why is saying, “I was wrong, I’m sorry.” So hard? I don’t know. I get a little perspective from being about to die but not that answer. Perhaps it is because we lie, and are so used to lying that lying becomes easy too. Every time we say, “I don’t have time.” We lie.

I have time to do postcards. I don’t have time to do postcards and eat, or do the things to keep me out of hospital or dead. So I could do postcards for 2 days. I would write you an email, each of you, a personal email. All it would cost me would be any communication with Linda and I would need to spend three days in bed to recover. That is what is. Perhaps you don’t have time for everyone so there is no time for anyone? I know that one. Though there are a few people, two in particular without whom I would not have had electricity or food for part of a year.

Because having a temp job like Linda. Well, if she gets the job her ASSISTANT used to have, we will have $500 more a month. And can probably afford things like: certain foods, a pair of shoes, having my hair cut (once in just under two years now), a pair of gloves this winter, a pair of socks (two years since that). We have dozens and dozens of things to fix or catch up on, a computer that is seven years old and just making it, for example. But that’s life. We survive because I sacrifice and Linda does as well. And because of two friends, who I share my life with.

Many people have been kind to me, and I have tried to make sure to thank them and to be equally kind back. But few are there particularly in the bad times. And it is still very bad times. I am thankful, and now have socks because generious people made some for me last winter or the winter before. I have a fan from a body that overheats because of a gift. so we can retire the 60% of a fan (no base, rattling, beat up motor) that was what I had before. I have things to read because of gifts, and things to watch. And I hope that others have things to read and watch, and feet warm from the nine pair of slippers I've sent out, or the 35 writing pads, or the 100+ books, and a couple dozen DVD's. And if I've forgotten, let me know, as I have some things waiting to be framed, including: the inside of an airplane cockpit, some very cool aviation pictures, and a franked enveloped from TWA first flight. Also more books, more DVD's, more 'stuff', and I've gone and forgotten who likes what.


Anonymous said...

I'm posting this to let you know that your words and this blog mean something to me. I don't know you personally, I don't live anywhere near you, and don't want anything from you. Reading about your experiences, triumphs, and struggles has given me perspective in my own life and I thank you for that. I simply want you to know that you have had a profound effect on me and my life. Your words are powerful and they are meaningful to me. Thank you.

wendryn said...

Don't know what to say, I'm sorry - still here, still reading, still caring about you. I hope the money situation eases. *hugs*

Displaced said...

Hi Elizabeth, rationing energy and making choices about where to spend it is an ongoing issue for me too.

Even the mental energy used to make the decision is costly, well today it is.

sorry mate

Anonymous said...

Beth, I just wanted to let you know that I haven't forgotten you, I could never forget about you and I think it impossible that I WILL ever forget about you.
However, since Amy died I can't always even manage to read your blog, there is so much to trigger me in there. I don't comment, I got a lovely postcard from you and I haven't even sent anything back in return. I am a lousy friend and I probably won't get any better. I know that, as I don't reach out and express any of this, I'm no use to you. BUT, I am glad to know you through your blog, I'm so glad Amy knew you through me, and I will continue to think of you and care about you as long as my brain has the capacity to - even if I don't EVER do a damn thing to let you know about that. Just thought, this once, I'd let you know that. xoxoxox Rachael in New Zealand

Baba Yaga said...

Oh bugger. I want to respond to so many parts of this (and a long e-mail I *still* owe you), I'm in danger of shutting down and responding to nothing.

So, the deep breath prescribed at all such times, and an attempt at orderliness.

One of the odd things about dementia is hat we really don't know how to talk about it. People say, "She isn't my mother any more", and they think they're saying, "She isn't herself any more". We love both the person, and the role that person plays, and the familiarity of the role, and we muddle all into one. Or just rely on the role: before dementia, my dear friend D. carried our conversations to the point they carried themselves. Fairly well into dementia, he could no longer do that; and I'd never learned. We had very short conversations, and it was long before I understood that it was my deficiency, not his desire, causing that: I thought perhaps, now, conversation was burdensome. Only difficult to begin, and needed me to take on the difficulty.

When role and relationship changes, we who imagine we're still as we always were are disconcerted, and take an inordinately long time to catch up. You're moving ahead faster than we... And yet it's hard to adjust our pace to yours. (And weaknesses are easy. Oh, how true.)

But of course, people are themselves, even when they're no longer the roles we're accustomed to, in them. Often you get a stripping-away to the essence of person; they're in a way more themselves, for being less their peripheral selves. You've honed your Bethness, these last years.

I'm sorry that writing truth loses you friends. It seems that truth often does. (I must be guilty of preferring lies at some points, for it seems universal. It's just that I've put lies in front of the truths I don't want to see, so I don't know there's a disjunction there. Like trying to find one's own blind spot, and not really wanting to.) I'm sorry that, even now, there can be more friends to fall away. Losing friends is always 'much'.

Yea, I can snort, 4 Yorkshiremen style, "You see 6 people in a week? *Luxury*." But hate mail? What the blazes? And when most of those you see are probably carers, so hight, I can't help thinking that seeing those who don't see you is lonelier even than solitude.

As to the 'hell of dementia' - oh, my, oh my. One day, the head of steam I'm building up on that subject will get my pistons going into a runaway rant.


librarian.mobile said...

I am here. You commented on my blog, made me feel good, and now I am watching you die. I don't know what to do about that. We have a rule in my house that I don't read or talk about things that upset me at night, because between pain and anxiety, I won't sleep. But I read your blog every day. You help me come to grips with my phobic relationship with death and with all the wonder and all the pain of having a body and being tied to it. I ask nothing of you, and I stand in witness to what you say. I adjust my understanding of what it means to use a chair, or have dementia, or be in pain. I stand in witness. I don't know what else to do. I will never hate you for your choices. I think people are not politics, although the personal is political. I love you. I don't know what else to do.

Neil said...

Beth, my dear, I appreciate your explanations of your life. But you're not perfect? My goodness, what a shock! :)

Of course you're not perfect, Beth. Nobody is. And if your descriptions of your life caused people to leave, that's their problem, not yours. Yeah, sometimes you need to be callous.

If you confused Linda, but explained later, I'm sure she understands now, and is reassured.

Thank you for everything you've written, sent, given to me. Thank you for going to all the trouble of stringing a few coherent sentences together so we can see into your world.

Thank you for being you.

With love, respect, awe, and zen hugs,