Thursday, April 16, 2009

The late post: speaking plainly

I will speak plainly.

I have post Sakura-con blues. I also have a new future I have to choose and meanwhile I am trying to write a post about that and responsibility. I ask myself how do I take personal responsibility in a system where ‘Cover your ass’ and ‘Keep your job’ is more important THAN the job (To take care me the patient, do home care, etc)? Except THIS HOUR I have a fever which is cooking my brain because I exercised and caused a system collapse including heart and a core temp spike.

I have a fan and air conditioner pointed at me, the window is open and it is cold and overcast. I have ice around my neck, chest and back. I burn. My brain burns with superheated blood.

I chose to exercise for the 10K in 9 days. I chose to wheel to the framers to get matting done for presents to send.

I am depressed, not post Sakura-con but genuinely depressed: a melancholy. Except I am not supposed, as a severely disable degenerative person to be allowed the full range of emotions of humans. Much as people with chronic conditions which require constant maintenance are not allowed full emotions. When a loss of determination, or despondency, or depression could cause death, or dramatic and permanent loss of function, I cannot be allowed to BE depressed. When over excitement and joy, when fully engaging can also cause a crash and death, I cannot, for my own good be allowed that as well. Linda has a whole story for this picture, how this girl was carrying flowers to someone, and fell, and lost that joy, that confidence of not caring what others think but now, injured, with dirty clothes, and ruined flowers.... I think she had an ideal of dreams which now is broken. I feel that.

You do not want to be me or where I am, in body or in mind. As I am sifting my life, myself, trying to find what parts of me I can afford to keep. I learned from Sara that having medical conditions you ignore doesn’t mean it ignores you. And that you DO die in the end. But you can live in between. It is only how to find that living which is difficult right now. I WANT the simple and beautiful life, I want to be this, cat girl with cat, and happy. But that is far from where I am now. I don’t know how to get there, to the part where I am happy. I can’t taste, I can’t drink, I only seem to have different levels of pain, instead of any pleasure, and yet I WANT to care about MY life.

I know this feeling, as I had it when I was abused. And I locked part of myself away, a scared child chained into the room of hell. And there it went insane for the next 20 years until it wrote and ripped itself free. Like back then I am always in pain, suffering. I am emotionally and often verbally abused daily. I try but I often feel I cannot please anyone, myself included. Caretaking is a learning curve and those closest to us hurt us the most. When Linda was hurt, and she was hurt a lot for a LONG TIME, she took it out on the one person she knew couldn’t strike back. She doesn’t do that anymore.

Yet others do. And now, in order for self preservation I need to educate people from care workers to cab drivers about my health conditions. They make a joke of it. They are uncomfortable and bigots: if you fear it, and it is a different race, keep your mouth shut. If it is a disability, make a joke, tell them how lucky they are...(to sleep so much, to sit so much, “I wish I could spend so much time in bed”).

Last night, my night worker did not bring an alarm clock, she suggested that she let the opiates wear out and my screams would wake her to give me more pills. She was serious. I told the supervisor. The woman will be sent to someone else and if you don't give her an alarm clock, you will end up screaming.

A couple years ago I never owned a skirt, much less a dress, and yet I now wear skirts because, I was told girls in wheelchairs don’t. I WOULD have sex with a guy if Linda will let me, or if she doesn't get her butt in gear. I do it, I think it because I have nothing to lose. I will die. I will die. I will die. There IS nothing to look back on, nothing to regret.

I am most of all alone. That is what they medically told me. That I am alone, that the pain I feel is mine alone, that the way my nerves die are mine alone, that even my autonomic failure is unique. I am a freak, and I am going to be ‘life shortened.’ So how do I live? Do I hang on to the old Elizabeth McClung, do I have time to take a risk on one or two new Elizabeth’s? Or must I, like when I was tortured, lock away the parts of me which are the most secret. No. Instead I will lock away the parts that are most socialized and let loose the parts most secret.

Every single thing I can understand and claim for myself is precious. If I do it myself it is precious. If I accomplish or get it with help of people it is precious. Even if I just find if; if it is a gift, or if it just arrives in the post it is precious. I don't have the luxury of a life where I can be selective of any small thing that brings pleasure.

If I can live through a manga the idea that I am in love again, or that I am out on an adventure, or just to forget the pain, it is precious. I work every day to try and support people and send gifts. I fight to do that not because people will like me, though I would like that, but rather so that I have not given in to the whisper which is now ever present. It says, “Do nothing, you have tried enough, you have worked enough, it is twice the pain it was a week ago, 10 times the pain and struggle of what it was two months ago. The more you continue the harder it will get. Just lie there, just do nothing and accept it.” I have written the post to end the postcard project at least five times. But I keep sending postcards.

I will die. I will die. I will die.

Dying is some of the most peaceful and pain free moments I have. I sometimes long for it if the day is hard; hope for the ‘zone’ in which I don’t need to breathe and don’t for minutes at a time. It is almost always green or white, always pleasant then and there. I follow a hotel hallway or a forest path, there are people waiting for me up ahead. Yes, I KNOW it is the scream of my brain deprived of oxygen, throwing up feel good drugs. I know that and yet I still seek these times. I even push away Linda and Cheryl, and try to go back, if they would but SHUT UP! I have cried and cried for being here, for them saving me. Because here hurts so bad, in more ways than simply pain.

I have to find a life that competes with that. Almost every successful female I know has some form of self-harm or ways to adapt to stress which if continued would be self harm. The only way I learned to stop self harming is to take responsibility. I realized that yes, my mother and grandmother gave me an eating disorder and my Father (capitalized for God the Father he played and gave old testament lessons of pain) taught me that pain IS learning. Oh how I was taught that perfection is attained through pain. I saw the patterns, and the triggers in myself and yet, as they did not take responsibility to help, I took personal responsibility. They might be the triggers, my boss might be the trigger, my GP might be the trigger and yet it was ME, and me alone who was responsible for the fight to NOT cut. I fought depression by running to bring up my heart rate. But sometimes I fought by just sitting still and not doing anything self destructive. I have nothing but the deepest respect for those who fight depression, who fight self harm. Sometimes, the voices are too loud, the depression gets on top of you but one day you will return and you WILL beat it.

Linda says the worst part of my disease is that I have lost all the therapy, the years of overcoming and now I live in a world that was 10-15 years ago memory and dream wise. My triggers and wounds are fresh. Is the 10K an act of defiance, an act of identity or an act of self harm? How do I separate the self and the self-harm? Is there joy without pain? Can the rose bloom without the thorns? I only hurt myself, that’s what I told myself, but in reality I hurt every person who cared about me. I would take that back if I could.

I will put up a more complex post later. Right now I have to survive. Self preservation is what I MUST do. Sometimes that means fighting myself: that desire to give in to the voices, or to the whispers.

I go into this weekend alone, isolated. And tired, so tired. I remember my last bout in epee, a direct elimination for the quarter finals. I was staggering and almost fell several times. My heart beat was well over 250, and I was in a fever like now. The ref said, “Do you want to take a medical break?” Then later he asked, “Do you want to medically withdraw?” And between the gasps, I had my sword arm resting on my knee and I said, “When I cannot...toe the line...” My head sagged for a minute and I checked to see if my foot was on the starting line, “Then,” I finished, “I will withdraw.”
I didn't quit. I won 15-4. It was a good way to end epee. But I lived on to see my running, my walking, my feeling, my taste, my world turn to one of black and white, a world where most would not want to imagine much less live, where 10 minutes without checking temperature of oxygen can result in permanent damage. And if I want to live, I have to keep going. I want to live. Can't you see the desperation looking out from the darkness?

Yet I will die. I will die. I will die.

I finished Epee, and now, the life I knew from last year is gone too. Spring is here and I need to take responsibility of my disease and my life. I need to find a way to love life, to look forward. I want to care about those who understand caring. I want to support Linda during her five week trail period at work, in which she already has a new boss, new portfolio and everything she used to use or rely on, including her furniture and assistant was stolen from her while on disability. I want to ACT, yet sometimes the best gift is to take care of myself, so that she doesn’t have to.

Is that all life is, a series of monitors, readouts, feedback, oxygen lines, pills, medicine, pain pills?

This is life on the defense: guarding, preserving. I want to go on the offensive.

21 comments:

Raccoon said...

I like speculative fiction, genre fiction. Mostly reading, but good television shows too. "Battlestar Galactica" just finished off a couple of weeks ago.

Today I ran across this quote, and thought of you (not that I don't think of you at other times):

“Because it’s not enough to just live. You have to have something to live for. Let it be Earth.” - Adama

Take it for what it's worth, I suppose.

I have had caregivers like that, in the past. Sometimes, all you can do is look at them and shake your head in astonishment.

Annie said...

Dear Elizabeth,
I've been reading your blog for a while now, but I haven't commented. I just want to tell you that you are one of the most inspirational people I have ever met. I can't understand what you're going through now, and I hope I will never have to - but you are doing a beautiful thing. I just wanted you to know that.
Annie

yanub said...

I am so sorry about the burning up. I've been inflamed all week, well, two weeks now, but at least it isn't actually cooking me from the inside. I'm just very, very grumpy. And if me being grumpy is a natural effect of being turned into a human radiator, I think you have more than enough leave to be depressed, angry, melancholy, furious.

How will you live? You will live with the same spirit you always have, the spirit that blossoms in the most dreaded situations.

There is a street I drive on everyday on the way to work. The street has a large bad patch on it, has for years. It's heavily travelled, and a few times a year, the city pours asphalt over the cracks. Despite the tires and tar, there is a long crevice that grows grass luxuriously. Sometimes it is covered under a layer of asphalt, sometimes the grass appears dead, but always it comes back. Until the day that the street is completely torn up and a new road bed replaces the old, that grass will find a way. I think you have a lot in common with that grass.

You're going to come back with a more complex post? How is that even possible. Probably, you will, and I will again be astounded.

I really like Linda's story of the first girl's loss of confidence. Thanks for sharing that, as well as the other beautiful pictures.

Joan K said...

Thinking of you... I'm in a morass of depression so I have nothing much to say except I understand a little of what you are saying. The legacy of our past abuse just keeps coming back. It sucks, it really does.

I also wanted to say that a friend of mine saw the anime drawing you sent me and was highly impressed. He really liked it a lot.

wishing you a bit of peace,

Joan

Elizabeth McClung said...

Linda said at the last bout it would take two or three tries to get my epee up into the en guard position, and looked like she felt; did not know if he was doing the right thing or the wrong. It was horrific to watch, but it was the way I chose to go. Until I finished, turned tried to walk off and fell.

Raccoon: I always value your comments because you are one of those who went through the dark side and out the other. I have been thinking for two days about the thumb and Kyudo - I think I need to ask a Sensei, as there are actually two to four finger leather gloves depending on the bow, and I don't think a martial art decending from a samurai culture would not anticipate or know the adaption of a missing thumb, not to get in the way of Budo, or Bishido.

When apathetic sadism is the norm in caregiving, it is not earth that makes me want to keep living.

Annie: Err....I am glad you commented. I can't say I would want anyone to go through what I go through, or what many on different blogs go through.

Yanub: I am sorry your inflammation has left you grumpy, angry, depressed, melencholy and furious. For me, either I spike and die, or I live. Even if it happens several times a day. Much like when my parents would put in tubs of ice water or cold water.

I am not sure how I will change. I am being told, not asked, but held hostage and if do not change 20+ years of patterns, I suffer more and I have a greater chance of death. God bless the grass but the city pays the asphalt.

Linda said my sentence summed it up: "I think she had an ideal of dreams which now is broken." - her secret desires, dreams of how it would go were now broken, lying scattered on the floor.

Joan K: Abuse is how I understand the world, and I don't know if I could be who I am without it.

This isn't rape, just societal silence in the same way rape was treated years ago. And right now, I will never be allowed to rest. Never.

I can give you the name of the artist if you like, there is another motorcycle in the series he did.

Queen Slug said...

I am sorry to hear about the fever, hopefully bu the time you read this your temp will be back to where it ought to be.

I think the depression makes sense, you went to BG with hope & they said there was nothing they could do be refer you out to even more people, you had hoped they could offer treatments & a plan. Then you went to the con & didn't have to think about what BG said, now your hope you do.

JaneB said...

(((Elizabeth))).

I'm here. I hear you. I recognise where you are. My experiences, my imagination, let me glimpse the abyss, and make me wish I could pull you out, or come join you and hug you so that you aren't so dreadfully alone, for a moment at least. I care. I choose to care, I choose to face the pain there will be when you die, if as is likely you die before me. I choose to learn and to live. Every day. Partly because if you can do it, then I can.

It's so little, but it's what I have, and I offer it to you.

FridaWrites said...

It's normal to have post-event blues I think--maybe start planning ahead for other events (I know there's the race, but beyond that?).

The fever sounds difficult since your body can't cope with that. I hope it goes fast. Please don't overdo while it's there.

Do you think part of the depression is about Linda going back to work and being in the apartment more alone (I'm not sure how caregivers would count, but not as best buddies generally)? That's understandable. Maybe her new boss will be nicer.

DaisyDeadhead said...

Elizabeth, delurking to give you a hug. (((Elizabeth)))

Lene Andersen said...

that's a great post. I really liked what you said about sometimes the best to sit still and not do anything self-destructive. And how taking care of yourself the best you can could be the biggest gift ot Linda. And not locking yourself away.

Sorry for the inanity - much pain, much codeine, subsequent little brain.

wendryn said...

I'm sorry the darkness has slammed down. Sometimes that's the hard, untold part of living in the light, enjoying things for a while - when you come back to normal life, it's much harder.

Yes, you will die. That sucks. You are living now, though, more than almost anyone I know. You keep pushing, keep insisting that you are yourself, still human, still worth anything and everything.

The pictures, as always, express your post exceptionally well.

I hope the darkness lifts and you get beck to finding joy again. I have new postcards I think you will like, so those will be coming soon. Even in your darkest hours, please know we care.

*HUGS* (well, gentle ones, anyway!) (and if Nyx were there she'd lick your hand and hope you feel better - a lick from a Great Dane is something memorable, let me tell you! :P )

Neil said...

Post-Con blues, yes, but I daresay you're also going through another round of grief and anger from yet another diagnosis.

I won't pontificate about life today. Sometimes it sucks, sometimes it's beautiful. What I will say is that youre still eloquent, though I suspect your eloquence takes longer lately than it used to. And the images are perfect yet again. I especially liked the photos of you in the Sakura-Con posts. Post them on your walls, perhaps, to help remember the good weekend?

Does the discrimination against Linda continue in the new job? I'm sure she'll do well in her trial period. But you should yell and scream at us, not Linda, as much as possible; that might be one way to help her.

Sorry, that may sound silly. Just know, dear Beth, that I'm still here and still reading and still appreciating you, and your words.

Sending love, hgs and positive thoughts to you and Linda,
Neil

Tom P. said...

"This is life on the defense: guarding, preserving. I want to go on the offensive."

Good for you! We can either live for life or live for death. I don't know anyone who lives harder for life than you do.

Baba Yaga said...

No, this is not where I want you to be! But since you are, I'll walk - maybe not alongside, but on a path criss-crossing the one you're on. & we'll walk in tandem along the parts which run together.

If you weren't depressed, I'd be astounded. (I'd be chuffed, mind you.) If you weren't beating the bounds of where living life turns into self-harm, I'd be astonished. I'm beating those bounds, and damnit, I have time and bodily reserves you don't have ('though you've a gift for proving predictions about time wrong). Changing capacities make that unavoidable.

On that tack, Sakura-con was worth doing. But now, yes, it's probably time to rest. To draw on those small pleasures to find joy even in rest. To take the chance on a Elizabeth for whom rest isn't just defeat, but a new strategy.

Maybe I'm wrong about that. I do believe that when one stops learning, one starts dying. Your body may have started dying and be doing its best to drag you after, but you haven't yet. So you'll try an Elizabeth or two more, because what else can you do? What else can *you, being you, do?

So far as abuses and tortures go - I've always disliked the terminology of 'care', which so often seems worse than indifference.

How one turns something instinct screams is mere, drudging defensive into offensive, I don't know, either. But it's something I have to find out, too. Because the alternative is to be like the generals always fighting the *last war.

I'm not sure what I make of what I've just written! Tick me off if it's sanctimonious, or just fails to 'get it'. Sometimes when I walk a little beside you, I feel a bit like the forest-dweller whose brain has never learned to decode perspective. In the face of life and death, that might be a fitting way to feel.

Nancy said...

Thanks for the post today--it made me think about a lot of things. I gave my first lecture at the college yesterday and talked about Richard III, and the ethics of portraying him as a disabled person--how it's important to see him as a person, and not automatically assume that his disability is a metaphor for his inner identity. And I realized how much I've learned from you. :) I really appreciate the blog--thanks for all your thought-provoking observations!

Shea said...

Nope, you definitely can not have sex with a man. I just can not allow that. Can you appreciate the irony of that coming from a hetero female? Anywho, you're not really missing much I figure. Personally, it's more of a connection thing to me, so just having the 'experience' would be kinda useless. Of course that is just my opinion, and I guess everyone has one. I wish I was somewhere near to come cheer you up. I figure you must be in the total pitts to even consider the guy stuff lol. I'm trying to make you smile but probably not doing a very good job of it, huh? Regardless, I hope that you feel better(totally crappy thing to say), but right now I mean emotionally. ~HUGS~

Abi said...

Crap. I know that apathetic feeling well, although from a different, significantly more mild, perspective. Despondent is how I feel, actually. As though I can't summon the energy to actually do something about my situation. If only it were possible for you just to resign from your illness...

I know that you will do as you say, and keep working towards living well. And I know that it will be harder than I can imagine. But you will find more reasons to keep living. I mean, I shall be sending corset photos to you soon; what could possibly be better? ;-)

Elizabeth McClung said...

Baba Yaga: Your particular insight in understand what I was saying indicates that you have encountered or though this before.

I appreciate everyone's comments, though sometimes projective. I will attempt to rewrite this as I was trying to explain a state in which:

While people want me to maintain my previous state, and personality, to do so would threaten my health, I MUST change. I and must change again very quickly. And under circumstances not unlike abuse, and do things not unlike I did to survive abuse. That part of me, my personality must die, or be locked away, for me to live. And I must find a way to live that surpasses the pain, the isolation, the horrid isolation, which even this post has demonstrated, and what people won't talk about; the whispers, the darkness.

Maybe I will, after all have the time to have two chances, but right now if I do nothing.....I WILL die. Now I know that I will die eventually, which is why I kept putting it there, it is always present. Yet I believe a life can be lived around that. Except if I do nothing..I die. If I choose incorrectly...I die. So for example, if I chose the 'defy all' attitude that others have, I will likely die within a month or two if not sooner. I was not having a flu like fever, I was having super heated core sending superheated blood to my brain and we don't know why. It if keeps doing that, I die. I did something, I acted in a way, perhaps no acknowledging I am as sick as I am, which triggered that. I can't afford to trigger it again. So I have huge pressures, not only to choose quickly a process that often people with chronic or traumatic injuries take YEARS to go through (I have maybe days or a week or two), but if I choose incorrectly I die.

If I get depondantly depressed, I have a greater likelihood of dying, simply from not coming back from recusitation, if I get too excited and then start a seizure or stroke, I could die, so I really AM NOT allowed the full range of human emotions.....for my health. I am NOT ALLOWED to feel self destructive unless I truely mean to die, and if I feel self destructive that means, I DON'T feel suicidal, so dying sort of defeats a 'cry for help'.

I explained this poorly as people did not understand. Nor did they see the desperation.

I apologize

JaneB said...

Thank you for trying again to help us glimpse a little of your reality.

The scale, the speed, the consequences of getting it wrong, of the situation you find yourself in are mind-bogglingly unimaginable, I think I grasp that much. I think I can imagine the despair and fear, at least a little. In my own small battles, I've had to face the desperate need to change yourself, to find new ways to live in order to survive, to carry on, and the rage and pain of giving up or denying parts of myself to achieve the outcome that I need to carry on. It's been such a hard lesson for me to learn, even in the small ways I've encountered it, and I don't cope that well (chocolate. bread. In fact, pretty much anything reasonably edible. In the largest quantities out. Self-abuse through eating rather than starving...). I don't know how you find the strength to carry on, to face this battle again and again, so frequently. Yet I so much appreciate your dispatches from the front, the effort you make to communicate and to care, and I hope that friendship-without-understanding is of some small use to you, when that's all I, we, can offer.

Baba Yaga said...

Yes, the thing about time is what makes this so hard for us to grasp. Human adaptibility doesn't function well on very short timescales.

If *I cock it up, if my attempts to live turn into self-harm, I lose weeks, months, of time which is beginning to look all too short - but I do (so far as one can predict) have them to lose. I don't *want* to afford mistakes, but I can, if mistakes are what it takes.

Your timescale, and the price exacted, are too short and too high for that. A friend of mine wrote not long ago of the 'new normal' she had to adapt to every time she visited her sick grandson. It seems to be the same for you, that the terms of reference are changing fast.

I hadn't fully grasped the thing about not living to the full of your emotional range: it makes sense, though. A bit like a manic-depressive having to accept that the price of functioning within normal range is never soaring above it (nor drawing on the swirling chaos in the chasm below).

I suppose what it comes to is this - if one's walking a broad stone bridge, one can scan the further horizon, in any direction one cares, or hang off the edge to examine the depths. If one's walking a narrow, imperfectly steady plank, one has to watch one's feet and near horizon, and keep always upright. And that takes a kind of vigilance...

I don't know. It almost sounds like a monastic discipline.

Neil said...

Apologies not needed from You, Beth. You're apparently unique, so please forgive us if we can't understand where you are sometimes.

I went and saw Elizabeth May (leader of the Green Party of Canada) speak last night. Something she said (I can't remember exactly what) made me think of EFM. It was something along the lines of: if you sit back and let life happen, people will define your life for you. If you take charge and question people question leaders, question choices, you'll help to make a better life for yourself and for others.

I think that's what reminded me of you: you have asked questions; you have demanded change in your health care (not that you got it, but you TRIED); you are doing your best to take charge of your life and your death, and you HAVE made a difference in that you've woken a few people up. Some refuse to wake (damned doctors), and some anonymous trolls mock you, but you strive to make this a better world, while your own descends to a particularly nasty level of hell.

Your postcard project has made the world a little nicer; your attempts to get doctors to treat patients with respect WILL have an effect, I'm sure, because more of us are encouraged to do the same.

Elizabeth F. McClung, you have made a difference and you are continuing to do so. You've challenged me with your book, with your postcards, with your private emails, and with your blogged requests for those special weekends to be a little different than usual sometimes.

So I'm sorry that I didn't understand where your post this time came from; it's not your fault for not explaining properly, it's my fault for not keeping up with you as you change. And I thank you for your patience with me as I try to keep up with your evolving world.

I definitely say yes to you having sex with a man; but my Beloved says you can't have me. :)

Love and hugs,
Neil