Thursday, January 01, 2009

Pain and dying: lay down your life.

Pain. Last night my pain was so severe that I used up the 24 hours of pain medication including my ‘breakthrough’ pain medication in the first 4 hours. The weight of my body, my limbs were crushing me in pain. I used my sedatives, a day’s supply, to try and get sleep. When I did it was of a guy hunting me down and hitting me with a baseball bat, or being thrown off the side of a building. In one unusual dream I was on board the Shuttle Challenger as it blew up. I used every opiate and painkiller I had and it didn’t stop the pain. I used all the nerve blockers and it didn’t stop the pain.

Nothing stopped the pain.

I groaned in my sleep, I groaned myself awake; and begged for more pain killers only there was nothing for me to take, not for another hour if I did not want to die of liver failure. How long does it take to die of liver failure? Three days? But I get my pain relief now? Great!

No, I was told.

But now, awake, as much as I feel like a cat who has been petted the wrong way for MANY hours, this is where I want to be. Alive. Alive and with my daily battle, how to make the greatest choice a human can have: to make a positive difference. I can, in my way, fight against apathy and the voice that says inside, “it is too big”, “you don’t matter”, “you can’t make a difference.” Last night, because someone fought for ME, I had extra padding on my bed: I was cradled as an egg. My pain was bad, but I was able to get some sleep. Hundreds of miles away, THEY had eased my pain, as they will ease it tonight. They fought for me when I lay helpless. They were there for me.

What or who do you fight for? If you are not struggling, whether it is to make yourself, your family, your friends, or your community, into something better, then perhaps you are already dead. Being a parent is a struggle, being a good partner is a struggle. Following your dreams is a struggle. Loving someone and being a good friend also means you will have bad times, you will do something stupid, you will cry. It HURTS. But it is worth fighting for. I know. I know.

I have almost died/died or been revived several times, but I’ve never been the one to fight, to be awake to pay ALL the cost. This time, coming back from Seattle and at Cheryls’ house I was the one fighthing, for hour upon hour. If I wanted life, I paid.

I was desperate. Not desperate people get when they are late for a ferry. Desperate like needing a miracle, and needing to make it happen now.

Because if I did not figure out how to put two systems back in line before I slept, it seemed, and after a few hours it became VERY clear, as the bright red blood was pouring over me, over my hands, that I would die. Not just pass out and let Cheryl and Linda deal with it. Dead. I was desperate to do things previously unthinkable, overcome phobias: if I needed to shove a needle into my heart, I would have done it. I was shaking, in shock and I couldn’t tell Cheryl or Linda how bad it was. I hadn’t told them in the 145 minute drive that my left leg was useless, my right leg becoming so. They were worse than useless, as muscle groups were locked, due to pressure on my spinal for hours. It was agony and I think the muscles were so tight in one calf section they ripped apart from the tension: one strand shredding, then another. But that agony was secondary to dying. “Just get me inside” I begged.

Agony was living. I had to figure out how to stay alive.

Somewhere after five or six hours of trying and agony and nothing working we took a break, and tried a short nap, though my breathing was cutting in and out. It was a gamble of a chance death over the growing probability I would soon fall over and bleed out. It was a prayer.

When I woke up, I was feverish, hallucinating and I still had to fix my body up. I had some horrific problems. I tried again, with desperation to do what needed doing, and this time it worked (EDS people, I now have some idea of what you might go through). I did not know if I had been internally bleeding for the last hour. If I had I was already statistically already dead. Because from my reading, at my level of anemia, any anesthetic and I wasn’t coming back out. So I was carried to the bathroom and waited to see if a liter or more of fresh blood poured out of me. If it did, I would have to go to the hospital because they were my only chance of living, to find what had ripped open inside and burn it closed, all without anesthetic. How much blood had I lost already? As once they put me out, would I ever wake up again. My research said no. It takes blood 21 days to replenish...if a delay in producing blood isn’t what is causing the anemia.

But there was no fountain of blood. It had healed somehow, some dark binding blood and that’s it. And only then did I let Cheryl check my abdomen for rigidity (sign of internal bleeding). My skin so thin she could feel the coils of my intestines. I was on oxygen the whole time but by this time my hands and fingers were purple/blue and I didn’t know if I was de-compensating (dying) or just if my body had pulled all reserves back to the core, abandoning my arms. So we slept. That was my second prayer.

I woke up. I couldn’t control my limbs but I woke up. I was alive and it was daylight. So I decided we were catching the ferry in 95 minutes. Nothing like exerting a little insane control to try and deny that sometimes we have no control at all. I had treated Cheryl badly, less as a colleague than an enemy, someone who might figure out how bad it was and call an ambulance and I would be dead and Linda would have a bill. Of course when you are delirious and hallucinating, it is unclear how clever at hiding things you really are. If I made the boat and lived for 60 minutes we would cross into Canadian waters, and the rescue copter and hospital would be paid for.

On the boat ride back, I entertained a 15 month old who played peek-a-boo. I showed her the pictures from the postcards I had with me. All still lying down. Still hooked up to oxygen. And I finally understood, what it was to lay down your life. To fight and spend your life with purpose.

I am alive. I should, with my memory problems; my health problems and my financial situation live a life in total fear. The only reason I don’t is because other people carry my burdens for me and fight for me. I was able to eat lunch because someone bought me utensils I can hold. I am alive tonight because Cheryl has watched over me, she knows when I am likely to stop breathing or when I have a fever (as I did off and on until this morning). I can sleep because Linda watches over me, literally carries me when I need it. Others watch over me, from helping me with the postcard project, to writing me weekly, to calling me to let me know that someone out there gives a damn. They haven’t given up on me. And if they won’t give up on me, I won’t either, however much my inner voices tell me I am not worth fighting for at all. For I am a thing, an animal, a sub-human. I don’t always look like a human, I scream and grunt and breathe in short choking breaths at times. I turn odd colors, and this planet doesn’t agree with me that much. I fight against my voices to give proper value to the gifts and sacrifices others make for me, on my behalf.

Spending our life is something we do everyday, sometimes in frustration (traffic!), and sometimes (more rarely) in deliberate action. But it is spent either way.

When someone spends part of their life for me: whether that is the money they have earned, the time they spend writing a card, or making or shopping something for me, deliberate acts people have done: this is a gift of greatness. Thank you.

I will try to list, another time, the long list of people who have done what I believe is the spark of the divine in humanity; to lay down their life for another.

No, not to die, to lay down LIFE, their life, the time they have to spend, they spent on me. They laid it down for another. And the other was I. I know of no way to give adequate thanks for that. But I can recognize it, honor it and emulate it.

I have run into people, recently, who are sick, not sick in the way I am, for all I have is pain and a body going to rot, but I LIVE. They don’t. They let others spend their life, they have decided not to fight for anything, including themselves. And they think of this as good, as normal. It makes me angry. No, it is not normal to ‘accept your bit’ and let it lie at that. Or to think politics and morals are the same. No law can contain the human body; lawmakers can only show their ignorance by deciding by law that one human is property of another, or one human is 3/5ths of a human being. Or that humans joined of different sexual orientations are not equal (Doesn’t God get a say….nope, the state constitution overrides God it seems). And that those who are disabled or elderly are to be weighed in economic terms.

When I first became severely disabled I asked, “What purpose do I serve in society that justifies the costs of my existence?” See how I had accepted the inequality of humans (of course, the same argument was made on the use of child labor 150 years ago). I am a human being. That society does not know how to incorporate me and others like me into the spectrum of what is human experience is not my fault. I hope Society can grow up, can learn, but the disabled, the elderly, the dying are still equally human.

In our culture, we DO treat the dying as sub-human. There is a circle of life (not a straight line into infinity, sorry to disappoint) and while we treasure and have protections for those who choose pregnancy and children, we have nothing really for those who are dying. Yet, it is the same circle. It is just there is no place for us. No societal aspect in which we are accommodated or even expectations we would be out in public at all! You know the one word I was too ashamed, too socially pressured not to EVER say for all the time I was away from home, the word I can only say on-line and in my own home. No, not ‘lesbian’, I can say that fine, I can shout it along with ‘Boobies!’. It was ‘terminal.’ Over and over people projected onto me that I was just like them, just sitting down and I let them. They acted as if I was stupid (“So you’ve….taken….a course at university?”), or if I was heroic (“That’s the way to show them”), or a stereotype, (“Are you wheelchair BOUND?”) but I never said the truth. I’m dying. I’m terminal. I have a degenerative condition. Because I knew they would have no way to deal with that. And socially neither did I. And yet, it is a shame because we are all dying. Only it is a few of us who know that, and the rest, well, they just stare in surprise.

I wasn’t doing anyone any favors by staying in the closet about death and dying. In fact, my denial, my need to feed their vision of me probably helped facilitate my OWN delusions and brought me to the closest I have been to dying while conscious.

On the ferry I thought of the Greek and other city states, who had a designated group who were those who helped decide the rights of the city against other cities. In one specific city, the women learned the sword, the men the spear and the armor to crush. These were people for whom all knew that someone would die every time they marched out. They fell in love, became friends and lovers, and then that group marched out and killed another’s lover or did not come back themselves. I am a pacifist, and an idealist but I can understand the appeal and ease in which one simply is, to represent your friends and family as you go to fight. It is harder to live, and to lay down your life, every day. People are broken. Children are broken and scarred. This is not fixed by marching out to kill someone: it is fixed by laying down a part of your life over and over and over again.

The things worth ‘fighting for’ are we, our lives and how they are spent. This is what I see in people. What I see reflected in those I know. They fight to remember that they are spending their life deliberately, laying down their life and that it matters. They fight while working long hours in a hospital; fight to save animals who are abandoned and in pain; fight to save humans who are abandoned; fight against yourself and your disease to BE there for those who fight for you. There are those who fight to have clean blood so that when, as I have been bleeding almost constantly since late Monday, as I may need to go to the hospital soon for a transfusion, that blood will be there. It matters. You have to remember that. Yes, it is a job, it is politics and jerks; it is dealing with a disease that never quits, that punishes you for nothing at all. We keep on because someone like me waits. I wait, for that blood, that letter, or for a smile of greeting from you. And when you have HAD it with the kids, when you have an argument with a friend, when you are hurt and instead of speaking what first comes to mind you think and remember the love you have for them. That is fighting within you for something that matters.

When I was able bodied I was a fool, believing that ‘once I get my job teaching’ or ‘once I get tenure’ or ‘once I get a deposit on an apartment for Linda and I, THEN I will make a difference.’ My disease has many gifts, the pain I love not so much. But I love the freedom, and the insight. For now, with all the power in my being I fight. Because there are so many things worth fighting for: things for which I am going to lay down my life.

Every postcard is my arrow, my act of resistance. Every package, every note, every email is my attempt to drive back this idea that somehow people don’t matter, or some people don’t matter or that people don’t matter equally. Like I said, it is a sickness. And it is my intention, entirely, for my next trick, to live a good many years, which I believe is possible, if only I were in charge of all the hospitals and could get things done (nice dream eh?). But if that doesn’t work, I will work my havoc here and there. I am taking GOOD care of this body, as I have another 1000 postcards to write. I will tell people over and over again that they matter, until they realize one day that they have been telling people the same thing because it IS true.

I do this not because I am in any way sanctified. But because I am one of those people who are broken, and maybe, because of the people who fight for me, that which is broken will heal a little.

Then one day, I will ascend to human. And I will matter.


yanub said...

I agree, the highest thing we could ever hope to be is human. To live fully our humanity, embracing it as the joyous wonder that it is. I know I don't do it. You are much better at it than I am, and so I say you are more fully human. You are free to disagree, but I stand by what I am saying here.

"On the boat ride back, I entertained a 15 month old who played peek-a-boo. I showed her the pictures from the postcards I had with me. All still lying down. Still hooked up to oxygen." Yay! No one is truly alive who hasn't entertained an infant in their life. I love the all encompassing gaze of babies, who see nothing peculiar or fearful in lying down or being pushed along on wheels, or having someone else do the feeding and cleaning. No reason at all not learn from the person with a nasal canula, to love the person with a feeding tube. They have something we lose track of as we learn to fear, but they are a testament to a freedom that is innate.

I was going to say that you go through much more than people with EDS do, but I know that some of us are disintegrating, falling to shreds, bleeding, failing in body and no one can stop it, so who is to say that one person's problems are more or less than anothers? You go through more than me, and what I go through, you go through with me, as a friend and companion, if over the miles, and that makes the disappointments and pains and sudden plan changes seem less like burdens and more like adventures.

You are very right that we are all terminal. It is the nature of life that there is also death, and no one escapes it. If I had never been born, I wouldn't be able to marvel at the wonder of being alive, and once I am gone, the chance to marvel is lost. And that makes this short time of life all the more wondrous. People need to know that, and to fight for the wonder of us all. And you do that, dear, so beautifully.

Linda and Cheryl, I am so in awe of you both for your passion, your faithfulness, your abiding love. I know there have to be times when you don't feel it, but it's during those times that the reality of the relationship is tested, and those qualities are still there, even if you are too worn to feel it. You both warm my heart and encourage me about the whole human race.

Perpetual Beginner said...

My mother is one of those people who has given up living. I try to fight her, to fight for her, to somehow goad her into waking up again, but it seems impossible. She is convinced that she can make no difference, that perhaps once she could have (and did not), but that it's too late now. It's comfortable, her living death, but it's comfort at the expense of meaning, at the expense of her loved ones, and at the cost of herself.

I admire you deeply that you have never succumbed to that comfort. It's deceptively easy to do.

cheryl g said...

I am sorry for the pain you are/were in but I am glad Linda did not let you take too many painkillers.

You are right. Being a parent or good partner or good friend is a struggle. It is not always sunshine and roses and sometimes it really hurts. However, it is truly worth every tear, every smile, every second of effort. The rewards are infinitely greater than the strife.

I can’t decide if I am glad you kept Linda and I in the dark about how bad you were or not. That was too close for comfort and I really hate relying on luck. I was seriously considering taking you to the ER anyway. I am glad I didn’t have to. I am glad you made it back home without being airlifted off the ferry and taken to hospital.

I had an idea of what kind of shape you were in when I put you on the ferry. I was weighing that against the reduction in worry and anxiety that getting you back to Canada in case you needed a hospital would bring. I will continue to watch over you but I really hope we don’t cut it that close again for a very long while. Never would be about soon enough.

You say you are less than human. I can’t/won’t believe that. It is true that our society doesn’t have a place for the dying. Our society is generally very uncomfortable with death and dying. The process has been separated from our experience and placed out of sight. I think that is why we cope with death and the dying so badly. I think that sanitizing our society of the icky and discomforting aspects of the human condition (like disabilities, illness, dying) has served to make society even more uncomfortable with disability and illness.

We are all in some way broken and it would probably make a better world in the long run if we would just remember that and have empathy for those around us.

There is one thing in this post you got wrong… You matter now and you are most definitely human. Indeed you are a human who makes a difference. That is one of the reasons why you are cherished.

PS – I love the pictures. They illustrate what you are saying very well.

Victor Kellar said...

Keep fighting EFM

Collette and I fight every day to be good and caring partners for each other She fights for the children who are in her care. We fight for her father, who is in physical and mental decline. I've always fought for the right to be me and hope that that means other people can be themselves too

A Bear in the Woods said...

We all live on the razors edge between life and annihilation, but most of us anesthetize ourselves from that awareness. Life has forced the issue on you. Just to survive every day you have to confront the issue.
To face mortality and still reach out and love and help others- That's the great challenge.

I come here when I need passion. You always stir me up.

SharonMV said...

Dear Beth,

You matter to me. The fact that this means something to you, that my regard & feelings for you are of import to you sparks my soul to life.
We are all grinding down - life is the road to death, but even we broken ones make meaning of that journey. Some, like you, shine a light for us.


Elizabeth McClung said...

Yanub: For someone who doesn't do it you always seem to be there supporting others before I arrive, before I find them, and there after I have to leave? How about we are both hounded by what we COULD be?

For some reason babies love me, and since I like them, that works out okay. Yes, to them all of life is discovery, they only learn from observation and example who to fear or hate.

I can't know all of EDS but there seem some severities, a spectrum, and certainly you are familiar with 'that which must be done' wanted or not. I can't understand it all but I can understand that, at times. I would that all my pain were adventure, though I admit hallucination does help! And I did manage to joke at times.

I believe in humans and humanity because we CAN be any good thing we imagine. Not that it won't hurt, or cost, like a friendship does at times, but it is worth it in the end. I just am a little sad that I wasted so much time and it took such a mighty wack to the head for me to get that. Linda said that I met Cheryl almost a year ago, and what a difference a year makes.

My regret is that I cannot bring to Cheryl what she brings to me. That I am ever fading. Linda says I write better now, less statistics but more heart. If Linda says it.

Perpetual Beginner: I too have loved ones, perhaps it is the "holiday" season where we see and have to confront those who have just stopped trying, even on themselves. It hurts me and because I love them I try to convince them, reignite them. They tell me they are happy to be ashes.

I'd love to succum to comfort; I was always encouraged to "Sell out" - but oddly I never found anyone willing to buy. I've made mistakes, failed, hurt those I love, apologized and had to face the pain I caused others and try again. I have been called by many 'relentless' and by many more a 'monster' - because I expect people to keep thier word, or the word of thier organization: "People come first" I'm sorry, this probably makes no sense to you. I would love to lay down, I would love peace if only people did what they promised.

Cheryl: Middle of the night brain doesn't always make the best choices. I hope that tonight is not as bad. I really, really hope.

I am really glad you said that, because as I said, I used you and for you to trust me again, open yourself to me again is more than I think I deserve. I am glad that we keep trying. Two souls with a lot of physical pain to distract us and a bit o baggage too. But I am glad we are friends, I can't imagine life without you.

The smart and prudent thing, I am sure would have been to go to ER, just to be safe. However (here I go Old Testament), since I do believe that I will be tortured, and tortured but I will not die until it is time, I believed in that. Though I have to admit, I was ready to give up. Oh - nosebleed tonight BP 120/80 - makes no sense to me at all.

Oh, I didn't fool you going on the ferry? I got on and remembered, 'oh no! This is the ferry that gives me seizures!' - but I just couldn't, after Linda worked so hard, take that all away, her security, for one ER trip. You have to remember that I WILL die for Linda; always. Even for her mental security, and sometimes you will need to overrule me.

I think I am supposed to go around in that sort of golden glow with hallmark movie of the week music with me and smile and look great instead of lose hair and look terrible and make sick jokes. Sorry, I'm not very good at this, let's start over from scratch and THIS time I'll be a LOT less sarcastic to the specialists, I promise!

Yes, I agree, everyone, even the most techy need to be reminded they matter. It is just why are the ones who might need it the most the LEAST likely to change and the most annoying? Sorry, just remembering Linda trying one entire year to get a boss to smile and/or say, "Good morning." Didn't happen - we moved!

well, one thing I am sure of is that I am NOT human, I know this because so many people can see it and have told me so or treated me so over my life. I know it in my heart; I am not one of the 'us' which makes up humanity, I am the one on the sideline who never gets picked.

Thanks, I wrote this twice and then edited it and worked on the pictures seperately and then integrated them and they worked quite well. I tried very hard.

Victor: I will keep trying. Fighting the assumptions in myself as well.

Yes, thank you for understanding. Linda and I work and fight and struggle to stay together to be together to be united at the end of each day. The stresses are hard, and with a parent as well. I like that, and I have tried to fight for the right of people to be themselves, more and more and I hope that I will die me; with the variations of my brain it worries me, I want to be me, and free. Pain sometimes makes the me very small.

A Bear in the Woods: I am very happy to see you! A hard topic. Yes, I said to Linda today, "I am a bit like a hamster; forget about me for a while and when you check next I don't seem to be moving anymore..." - I am glad you are stirred up. I am frustrated I cannot go out more into the world, but from here, I will act as I can, as others assist me. I am alive becuase of others, I CAN help only because others help me. It is not the way I would have chosen it; which is probably exactly why it is best for me!

Sharon: You matter to me, and your work has mattered to a great many people. Does matter, will matter. Yes, we are broken, but I don't think we are entirely beaten down yet. To have a dinner, to have those moments others take for granted as a luxury is to know what living deliberately is. I go on because I know you go on. I endure, because I will meet you on the beach, yes? Sometimes, we need to feed the soul. Linda says that Maggie is right and they should put "Rest" on my tomb, since it is the only time I will.


Anna said...

Sounds like a great and horrible trip. Can't say anything about it really. Glad you have Linda and Cheryl. (Had I been there I would probably have passed out:))

Shit, no one should have to experience that kind of pain. I 've had an attack of migraine, that is quite enough for me thank you. PAIN SUCKS BIG TIME. (Strange, that it is so necessary and can still play tricks on us.)
No intelligent to say. Anyway.....hope you will bounce back soon and enjoy your corsets.
Fuck, shit, again about pain. (Sorry not so verbal)

JaneB said...

A lovely piece of writing, and a very important message. Every step on the journey, we make choices, and they matter. And living purposefully, deliberately, lovingly is not an easy task, and one that many people opt out of. Thank you for continuing to challenge us all to take up the burden, the priviledge, of striving to be fully human.

wendryn said...

You have made a huge difference to me and to Xander. We get into little tracks in life and then something jolts us and makes us remember not to take anything for granted, and you have been that jolt. You have also become a very dear friend.

You matter to us. You showed us how to care about someone we'd never met. You are human, and you do matter.

I'm constantly amazed that you can be in pain and trying desperately to live and still have energy to entertain a baby or feed squirrels. You keep living - we'll keep rooting for you.


Neil said...

I am in awe of your ability with words. I guess that comes with extensive study of the language, and I know you re-write and edit for hours, but I'm still in awe.

I'm very happy to read that you are telling the inner voices to get stuffed. Other than that, I cannot expres myself as well as Yanub or Cheryl.

Cheryl: thank you for helping LInda and Beth. Don't know what your reward will be, but I'm sure you deserve something good in the end.

Beth, you ARE human. The people who ell you you're not are WRONG. I also suspect that you will not rest when you're dead; but I'm willing to wait a long time to test that theory.

Love and hugs to all,

rachelcreative said...

Everyone matters. Thanks for making a difference to so many people Elizabeth and continuining to strive to do so.

Veralidaine said...

This is one of those posts that I don't know what to say to. I am so sorry to hear about your pain, but so happy each time you say you want to live and plan to live for a long time. Now how do we get you installed as Director of every hospital in Canada?

About fighting-- I do my best to fight for you in the small ways that I can from thousands of miles away. I fight for my pets to have better lives. Mostly, I fight myself: My procrastination, my fears, my anxieties, and my comfort with routine that prevents me from taking risks or making friends. Is fighting with myself still fighting FOR something? I wish I fought harder for a supportive relationship, but more often I fight WITH my SO than I fight FOR our relationship. Maybe my anger is directed in the wrong way. Need to start taking that boxing class soon. Again, fighting with my anxiety and fear of new situations.

One person I do fight for: My niece. She has a whole deck stacked against her and has since birth. Her daddy is in jail and will be until she's grown up, her half-sister (dad's side) is in foster care and she may or may not ever see my niece again, and my half-sister, her mother, is a good, loving mother but has many issues of her own due to being abandoned and neglected by her own mother. But in spite of all this, Niece seems to be growing up okay. She's a little scared to admit to liking something because she thinks it'll be taken away, but she plays, she's "cool" according to the kids in her class, she's active, she seems happy, and she's learning math at two grade levels above her own grade. I do my best to be a safe, stabilizing influence in her life, and to take her out to do fun things.

And about coming out as dying-- a brave thing. But a good thing. I can see why you were afraid to say "terminal," because yes, it IS scary to know and love you when I'm fully aware I have no idea when I'll lose you. But heck, you could still outlive me! I could be hit by a bus tomorrow. "Tomorrow is never guaranteed" is such a cliche, but it's true. I think the people who take the risk of caring about you knowing you're dying a little more actively than most are the lucky ones in the end. You are a remarkable person, and have made me a better person than I was before I knew you.

Abi said...

Elizabeth, you really are not sub-human, nor worthless. If you weren't who you are; if you just went from moment to moment trying to survive rather than trying to live; you would be worth something. As it is, you give so much to so many people. If people do not regard you as their equal, that is their issue, not yours.

That pain you had sounds horrible. I have, in the past, had pain which has influenced my dreams, and it does not make for a relaxing sleep; it is not very restful. I am glad that Linda did not give you the extra pain killers (and glad that it was not I who had the task of refusing you), and glad that it is less bad now. I am delighted that you are still alive.

Thank you for sharing that all with us; your trip to USA, that is.

And thank you for, once again, reminding us that now is the time to make a difference; there may be no time for delays!

Dawn Allenbach said...

You are more human than many Homo sapiens I have had the (mis)fortune of encountering in my life. You get it. Life is a circle -- birth and death and rebirth, continuing on and on. We should be kind to and accepting of each other regardless of all the stupid and superficial things that some use to separate. I read a great article about New Year's resolutions, and I will post it to my blog. I think you'll agree with it.

Fight on, sis. You know I'm right there beside you. And when you're too tired to push yourself, just grab onto my handlebar and my chair will move us both along.

Lene Andersen said...

Oh, sweetie. You are more human thn anyone I've ever met.

Thank you for this. You made me cry again, but because I opened up all the way and felt what you wrote. Thank you for that, too.

I'd love to have you around for many years. That would be lovely.

Raccoon said...

I'm going to have to think about this post. There is a lot in it.

On the other hand, please tell me that all of these pictures are female?

You are born and then you die. It's what happens in between that matters.

Elizabeth McClung said...

A very bad day, I will need to come back and comment when I have been unchained. I am a monster. I am a monster. I am a monster. I am a monster. I am a monster.

Anna said...

it probably won't help saying youre not a monster. YOU ARE NOT A MONSTER.
Like probably the rest of your netfamily will say. You are not a monster. Very few, if any, humans are.

And you are human,make no mistake about that.

Maggie said...

Oh Beth, I send my love to you. I'm sorry that you hurt, I'm sorry that you are in a dark place, but thank you for opening up your heart and mind and sharing.
It is scary for you to do so, I know. Yet, no matter how anyone else treats you there are always those around you who offer love, comfort and safe harbor.
Thank you for sharing your thoughts and feelings.

Anonymous said...

well, one thing I am sure of is that I am NOT human, I know this because so many people can see it and have told me so or treated me so over my life. I know it in my heart; I am not one of the 'us' which makes up humanity, I am the one on the sideline who never gets picked.

Some of the best, most fully human people I know have written those same sentiments. I rather suspect the humanity of those who told so many of us, so often, that we were not fully human. (I have written those sentiments, for that matter, but that doesn't count because, well, perhaps I'm not human. I'm certainly part monster.)

But then the other side of me says: to be human is to be part monster. To be fully human is to know one's monster, and channel it when one can, contain it when one can, and always seek to do better when one can't do either.

thea said...

I wish you peace, particularly for the bad days.

SharonMV said...

Dear Beth,

It grieves me that you are having such a bad, dark day. I wish you could listen only to our voices here, and not to the voices of the past. We love you. We know you are so very human. We cherish you.


Veralidaine said...

Beth, cousin, if you were a monster, would you know it? If you were not human, would you worry about being human? If you were a monster, would you fight so hard for Linda? If you were a monster, it wouldn't bother you to be so, thus the fact that you struggle so hard to believe you're human proves you are.

Not that this will help when you're in such a dark place, but I thought I would say it anyway, just in case and because I want you to know I care and I think you are among the most wonderful HUMANS I know.

Neil said...

Anonymous: very well written, whoever you are.

Beth: You're still not a monster. You are the most fully human person I know. You are in touch with your dark side, and you're working to keep the monster within you at bay. Yes, there may be a monster within us, and some of us cannot contain that monster. You do, but being aware of your monster does not make you one.

Humanity is not a destination; it's a journey. We should all trying to be better humans. I know you are trying to be more human, but I still think you are already fully human. That's still not the last step in humnanity, I admit; but you're working to STAY human. And we cannot ask any more of a person than that.

Love, love and more love, together with pain-free thoughts, gently hugs, and agnostic prayers for less pain for you,

Raccoon said...

Yay! An Anonymous who has positive things to say!

Beth, Anonymous's idea of channeling the monster part of you is good. I mean, I don't think we're ever going to convince you that you're not a monster, so if you can channel that part of you that you think is a monster into something constructive...

What is a monster, anyway?

Anna said...

I hope you are still alive and kicking. I wish you could have been with me on a one and a half hour beautiful walk in crispy wintercold. Frostbite yes, but in a refreshing way.
I wish you could have a little peace and joy.

anabel said...

Thanks you for this post. It's hard for me to think of something worthwhile to say. I can't imagine the pain. You fighting spirit is truly inspirational.

Elizabeth McClung said...

Anna: I agree, pain sucks big time - it kind of messes up everything.

Jane B: Thank you, I think, I am glad it was good to read. I try to challenge myself, I don't know if I am allowed to ask people to do the same.

Wendryn: Well, it turns out I can't be in that much pain, that the dream and the reality do, after years stretch to a breaking point. I am glad to have met you, and I hope that you have a good life together with Xander. Do something and forget me. Make a difference, which I know you do, and forget me, take your energy to where it can do some good.

Neil: after that first 500,000 words, the next million are actually not that bad. Of course, it took about four million before I became happier with how I write.

Veralidaine: you do a lot, and you challenge yourself a lot, in so many ways. I can't express how really grateful I am to have met you.

I'm glad your neice has you. I'm very glad that someone is there who cares.

Abi: yeah, pain makes sucky dreams, so does a sucky life. I think now is always the time for change; I mean if someone started today, who knows where they could be in a few years....building organs for instance....IF they started today. I don't think you have a problem with jumping in to make a difference.

Dawn: I need something right now, to help me escape this hell I am in. I am not asking for your help, but if you are going my way, I could use a pull. Pain is always down, and anything other than that is good.

Lene: you give a damn, and you still give a damn - I've waited over 30 years to meet you. I better not screw it up!

Raccoon: All female, except maybe one. But I'll assume that one is female too.

Abi said...

I have massive problems with jumping in to make a difference - I fail very frequently. In fact, I spend most of my life failing to make a difference. That is why frequent reminders are useful - it can be hard to remember to try again when last time didn't go very well (selective amnesia being a big thing in my head). Thank you!