Sunday, November 30, 2008

The real story: I die. I am resuscitated. How much longer?

I didn’t do the 8K this weekend. I didn’t do the 8K because no one, not Cheryl, or Linda or myself believed I would make the finish line. Believed that I was in sufficient condition to finish the race, and believed it was more than a 50% certainly I would be in hospital. So I worked, as I did for the last several nights, past 5:00 a.m. doing things like postcards or getting the blog finished (20 pictures, the last one). Instead of being honest, I gave you the posts of what I thought what you wanted.

I am afraid that people will leave, because no one, not even Linda or Cheryl can talk about the things that are happening right now. One of the recent days, Saturday I think, I woke too weak to speak, or move my head, or use my arms. I have to be carried into my wheelchair, then pushed to the chair in study and carried into that chair. What does that mean? It means that until I take a lot of pain medication, quadruple what I had a few weeks ago, I can’t use my hands or arms, that takes the morning. I can’t hold my head up and I pass out, and come back, then pass out again. The first Lesbian Sleepover had those conversations, but it also had more seizures, more grand mals in one night than I have had in the rest of the week combined.

And then, I think yesterday, I died. Or to be exact, I stopped breathing on my own for a very long time. Four minutes is enough for permanent damage. I stopped breathing for about twenty minutes. During this, my heart, very weak stopped and started. Linda, did mouth to mouth while I was unconscious, until Cheryl found the Ambi-bag. The Ambi-bag is for EMT’s to use until a person can be ventilated (a tube put down their throat and they put on a ventilator). I have had short periods of stopped breathing, I had experienced them earlier that day. Linda sleeps besides me, and listens as I sleep, waking as I stop breathing, and waiting until a time passes or I start breathing again. Many times, there is pain, or pressure, or a desire to breathe, but I just don't have the strength to breathe. This time, I would be brought to a haze of semi-consciousness, but all I felt was total exhaustion. I had no need to breathe: I only wanted to rest. I had no will, no fire, no fight, I couldn’t do it anymore. I couldn’t speak because I had no control over my diaphragm but at one point, with the air pumped into me, I whispered to Cheryl, “Go” meaning, ‘let me go.’ (Picture is called ‘Wreath’)
They brought me back somehow, and I probably tried to continue what I was doing. Later I asked Linda, “When are we going to talk about it?” She said we needed to go to bed right then.

My heart is failing, right now. Every beat, every minute, it is weak and does not beat consistently, and often simply just flutters, doing nothing. Without the heart masking pills, I have unimaginable pain (I would scream and scream, but without my heart I can't breath). I think of the woman in the book in To Kill a Mockingbird, who wanted to die without morphine addiction. Because it is all I can do to hold on from when I ask Linda for another pill and when it starts to work. Yesterday, due to a system failure, my lungs started to close off, an inflammation of some kind. We had an old inhaler of Linda’s and I was able to breathe again.

Why don’t I go to a hospital, where they would put a tube down my throat and keep me alive? Because in all honestly, I don’t know what to do. It turns out there is quite a difference between being terminal and saying, “Well, based on my rate of dropping, I don’t know how many months I have left.” A big difference between that and saying, as I said, when I was placed into bed, my body arranged, my bed inclined for breathing in hopes of limited recovery, “Tell Cheryl I’m sorry, tell them I’m sorry.” I just didn’t have the strength to go on anymore. I felt, that by dying, by giving up, I was failing all my friends and people who read here. You are the “them” I was talking about.

Cheryl and Linda had talked after they had gotten me back breathing. Linda was scared but she didn’t know if she, if they had done the right thing. Cheryl didn’t either. To see me every day in such pain, and to keep bringing me back, again and again. This time it wasn’t a bit of aid; if they had not acted in a steady and prolonged fashion to keep my lungs filling with oxygen, I would be dead; my face wouldn’t have been pale, it would have turned a peculiar shade of grey.

So, the exact particulars of a Do Not Resuscitate aren’t abstract anymore are they?

What is this? This is the picture of the world without Elizabeth McClung. Because that is all that will remain, an empty room.

I am not ready for this, dying, even the requiring, many times, close and continuous help, and that includes 24 hour assistance. I am not ready, but it is here.

It has been quite the week.

I want you to know that when Cheryl had to go on Sunday she left with every postcard request and every other postcard selected this week done. I wrote every single one. I selected every single one. Every package for this week was done. I have hoed to the end of the row; I kept the promises I made. I remember at one point, I think I was lying in Cheryl’s arms, and I tried to explain. “How can I not keep working?”

I think she said that I was literally killing myself. We were both crying

“In an age where everyone is trying to trick people to give their personal information.” I said, tears rolling down my cheeks, “they GAVE me their personal information. They took a chance. They trusted me. How can I break that trust?”

I mean I always knew that this wasn’t a ship I was getting off of. That when the time came for someone to make sure everyone was safe, or someone had to stay behind, to make sure that no one else would come to harm, that would be me. It is why I was born: the sacrifice. But if you call, across the distance, and I hear you, I will come, in some way, as much as I can I will be there for you. Cheryl had been worried earlier this week about my not being here when she arrived (yeah, sorry about the hiding of my physical, pain levels and mental state). I told her, “Say ‘I need you.’”

She did.

Say, “I need you to know you will be there until I come.”

She did.

I said, “Now, I’ll be here.” Everyone else first. That’s the rule. Only now I am locked in a room where I don’t have those choices anymore. The room is a metaphor for my body. I can only wait. In fact, I don’t know how many choices I have at all. And maybe, very soon, I will be in hospital for a longish time.

I promised Linda that I would go to bed early, I would sleep more, and we would leave this apartment. She can’t remember when I was last able to leave alone. We would go to the ocean side path, me wrapped in my blanket, and she could push and we would remember, what used to be. That this is where I trained for the commonwealth, me running with her keeping pace on her bike, the same trails where we jogged together after we moved back. We will go out, and remember.

Then we will come back, and soon, we will talk about how much more I can take. How much more I want to take. It will be a intimate but difficult conversation. She feels that she is keeping me here just for her. That to see me waking in agony, begging to be let go, to have them stop reviving me is her being selfish. I don’t know how to explain that the flashes of anger and frustration come from pain, or that I look in front of me for tomorrow, or the day after, or next week and I don’t see, I don't FEEL anything. If it were not for the promises made to S. and C. A. and a few others, I would not come back. But that is then, my fourth seizure, or when I can only drool and lose consciousness.

Now I look at my books and I don’t care anymore if they are sold, in fact, I don’t even really see them or anything as mine anymore. But still, I sit here, with every breath a struggle and my heart stopping and starting, and erratic close to a majority of the beats, and I go on. I have no future. I will take no vacation. I will have no family dinner. I will never have a job. I won’t take an education course. I don’t have the capacity anymore to write that book. What I know waking, and sleeping, and being listened to on the monitor so when I wake, I can be helped up, when I can’t even talk or use my arms.

And still I go on. Why?

I guess because right now, I feel that on some days, I feel I can make a difference. Many days, sometimes many days in a row, it seems that I can’t. It seems that nothing I do, the cards, or gifts, or little letters or the pictures for the posts or the posts on the blog make a difference. And then, I get frustrated and sad, and truthfully, I look forward now to the time when I am free. When my body will rest here, but I will be gone. I hope it is as peaceful as it sounds.

I am losing function so quickly now that it is hard to keep up. I am something like a mix of Flowers for Algernon and Johnny Got his Gun. I am a collection of what people read as horror films or stories. Take Stephen King: the book Thinner is about a person cursed to become thinner until they die. Yeah, that’s life, scary I guess but life. What about Misery? About a person who can’t use their thumbs, whose feet are smashed and they have to use a wheelchair, how they are chained inside. Yeah, my life and that are not very different are they? A “healthy man reduced to that by a maniac, what sickening horror.” So who was the maniac who did this to me? No one. But people find it terrifying all the same. I hope you don’t pull away because of your own fears, or your own sadness that I am, not in a theoretical way, but in a very quick and very literal way dying. In fact, I have already died a few times and come back. Because right now, you are the ones who are keeping me here.

You may not like it but I consider my desire which helps me continue, perhaps part obligation, perhaps part vanity but I want to live because you want me to live. And if means I am in constant pain, and with constant care, and unable to talk; or to lie in bed 50% of my time and 25% of the time be in so much agony I can’t function to the point of holding a toothbrush but I use the other 25% to communicate with you, in postcards, in emails, in blog posts, then that is enough. I live. Maybe I will find some other motivation. But for now, on the bad days, in those bad minutes and hours, it is you.

I am tentatively scheduled to go to Seattle in January. That is a long time away. People will leave to be with the ones they love. I will have to fight alone. I don’t know how to do it in this body.

Some people, many people, some readers think I will go to hell because I love Linda. I think that is supposed to scare me or something. If there is a hell and I am sent there, then I will be free at last, and I will find a way to protect those there. Lesbians in hell, my ass. I spend a great deal of time and was very fortunate to finally find this picture (which I had seen another person own). This is me. I have walked in the fire. Christians aren’t very good on their mythology, because there is something else about the Sacrifice, which is the Eternal Warrior. Hell doesn’t scare me. Pain and the looks on Linda and Cheryl’s face scare me. Feeling nothing, not even the desire to fight scares me. Being free again with a sword does not scare me. The people who think when I die I am not going to come back for them, should be scared of me.

Here is another picture I picked up, of the Valkyries (which was actually the name of my competition sword, Val). Swooping in the sky, weapon in hand. Not the worse life. Right now I live the life of Loki, chained, who has the acid dripping constantly on him, with his wife catching as much as she can in a cup, but when she empties the cup, it drips on him and his screams and writhing shake the world in earthquakes.

So that’s how things are. And if you know how to get from here to January, please help me. In fact, that’s what I want to say, help me. I think, even with a memory of just a day, even with this weak body, even with the pain, that this life is pretty good. I think there are good people out there. And I think I can remind a few people, maybe more than a few that change, and taking risks and caring are possible. They aren’t pain free, and sometimes you will be hurt, but they ARE possible.

When I go, I want to go fighting. I want my body to be so ravaged that they use it for the next 100 years as an example of what is possible. I never got to do the Ironman/Ironwoman Triathlon in Hawaii. This is my Ironman/Ironwoman. I knew a woman who did it three times, and she used to run mountains for just the running section as training. I like that image, not climbing, but RUNNING up mountains. Don’t let me just open my hand and let go.

Even as I type that I know soon I will not be able to type, and I can now use my hands because I have two heart meds and most of my pain meds in me. The pain, the exhaustion of the body system is beyond imagination. Think of a marathoner. Then think of them asked (forced!) to do ANOTHER marathon after the first one, without stopping. And see them staggering to the finish. Now, THAT person is responsible for every beat of my heart; if they lose consciousness, I lose consciousness, if they weave for a second or two, my heart stops for a second or two, if they don’t have perfect pressure every time, I can’t breathe.

That is where I am. It isn’t who I am. Who am I is going to be dead, soon. And I would like to know how to delay that, and I would like to fight. I just don’t know how.

I did ask Linda to find me a 10K in december....just in case.


Olivia said...

Hi Elizabeth. Not pulling away. Thanks for being honest. You're still EFM, clearly! And people do need you.

Michelle said...

Screw the obligation! I would be surprised if anyone expected you to write your postcards to them (as valued as they are) over living, and doing what else is important to you and Linda. I know you love doing the postcards, but do what YOU want to do! Have an Elizabeth day! A Linda-and-Elizabeth day!

You write so beautifully. Thank you for writing this post. I hope today is a better day for you.

Drake said...

I am not going to call you sweaty... as I don't want you to exhaust your self by ripping out my throught... so...

SweatNESS... My dear Beth... I want you to get well. I want you to fight and to carry on and to beat this awful beast! I want you to live and love and experience joy without pain. But most of all, I want you to do it for YOU.

I can not bear to see you in so much agony but still I WILL remain. I will NEVER leave matter how bad or hard the truth becomes. Do not spare me your agony by staying mute about your heartship. I love your posts but Anime I can find anywhere on the net ... maybe not so beutifully arranged and in context as on your site tho ... but, I can find you, only here.

Hell is a place for murderers and thieves and people who don't care about other's has no place in hell and therefor I can not see any way that you would end up there...

Be brave my friend ... not for me, not for Linda but for Beth! Do not quit until the end ... push on through this Marathon of life and prove that you can make it or ... die trying ... For that is the Beth I have learn't to know and adore.

You never give up and never give in, despite the pain. So be true to your self in this trying time.

If we lose you, we can feel proud to know that you gave it your all ... to the bitter end ... not for us but for YOU!

"Do not resussetate" is for the weak minded and for the weaklings out there not wanting to try.

There is only one power in this world, that may choose between death and life and trying to do so your self, will only land you in the dark doomed loveless place that is hell.

Holding on to Linda and loving her until your heart stops...that will lead you as far from hell as you could imagine.

I adore you with every single breath that you take.

I applaud you with every single
beat of your heart.

I am humbled by you with every selfless act.

And every day, you win my respect.

Being strong and being brave does not mean the absence of fear tho and I can not even begin to imagine the fear you must feel. Whenever the fear strikes up... Whenever you feel your strength deserting you, know that I am with you and I care about you.

Hold on one more day, one more hour, one more second ... till you have reached your goal...

Dear Beth ... Be true to your self and you will have nothing to be ashamed of.

* Hugs *, * Soft Kisses * and all that is beutifull to you.

VK said...

I don't know what to say to this, but I don't want to pass by it without comment.

I love you, we all love you.

Miss Fairy Sparkle said...

Hi Elizabeth, my friend, you are doing great - you are fighting well. Every post is authentic you - if you are playful, or angry, or whatever - it's all ok. It's being alive, and you are being alive and having to face your own loss of your life. You are mourning having a family, and all the being a mummy you could have, and you are mourning all the successes you would love to enjoy again. All the things you could have worked on. The project is going great - it is - it's a lovely idea, and whatever happens - it will live on in peoples hearts. Your blog has changed the way I think, the way I communicate. It's great how all three of you are battling away, fighting symptoms I can't get my head around. No matter how bad it is, your commitment to life, and to friendship absolutely shines.

I wish I could come and hold your hand for a bit, and give you and your girls a wee break, and a bit of time to have a hand massage, or a cup of fabulous tea, or just a little touch of well done, you are all precious.

I liked the post sbout how hard it was to go into the flat. About that moment you'd love to unzip your skin and come back to being well again. I hope very day my old me will reappear. It takes real courage to go back in, to go, ok lets keep going, and you are full of courage. Even when very frightened, you have it in bucketloads.

What an amazing lady you are; please, just for me, would you look in the mirror and smile and see the beautiful spirit you have. Yes, I know there are so many voices who have fed you crap about yourself and told you you are not worth caring for- but you are, and you give lots of love out.

Big big big big big big big big hug - one for all the time your diaphragm was wonky.

Laura xxxxxxxxxoooooooooooooo

JaneB said...

Oh Elizabeth, how hard and lonely your path is, especially when you feel you have to put a brave, funny, entertaining face on even for us, your readers. I wish I could be physically there for you - just to sit with you, to talk a little about the sun and the beauty of the day, to let you know that you are not alone and that your caring, your hard work has, does and will make a difference. Maybe I could fold laundry or wash dishes or fetch groceries or clean the bathroom?

I hope thinking of you lovingly, praying for you, is of some value. I'm trying to pass on a little of your generosity and caring by sending a few cards and packages to people I know, thinking of them and of you as I do it.

I don't have your fierceness, your determination, your athlete's will. But I'm here, and I'll listen (read) whatever you need to say, and I'll try clumsily to write something back to let you know you're not alone. But don't force yourself to respond. Rest, when you can, in order to have more time for love and conversation and sunshine on your face, spend your resources on those who really matter, and live (and die when it comes to it) as you, bright and fierce and wholly beautiful. I can't believe in a God who would condemn someone who is so focused on truth and so loving, so willing to take the risk of opening yourself to love others even after such hurts. That's not the God I see in Christ's example.

I love that picture of the warrier in the flames. Fire-tempered steel, passing through the refiner's fire, the ordeal of the pilgrimage (which is an important Christian idea, though one I fear lost under the soppy, meek and mild excuses for prejudice and arrogance of many so-called Christians, especially in the US) - you know, intimately, about these truths, and you write about them movingly and well.

You may not be going to write a perfectly crafted book or hold an academic post (which really isn't that great at times!), but you teach here in the best sense, you are a thought-provoking writer. I'm sure you know that the best classroom teaching is not a controlled, prepared, polished lecture but a dynamic, energetic, unexpected experience. As a teacher my role is to make a space for each student to learn, think, stretch, challenge, reflect, self-evaluate, grow - both together and individually. A safe place to do unsafe, risky, exciting things. In your writing, in sharing your experiences with your readers here, you are doing the best kind of teaching. You matter. Sometimes, extend some of your caring to yourself, OK??

Many hugs to you all, and thank you again for this space.

One Sick Mother said...


You are right to tell the truth, and not to mask or sugar coat it. Your journey -your suffering- needs to be documented and needs to be witnessed; even if only by persons such as I (Linda and Cheryl are a given, naturally).

And so what if I weep while reading it? Because I *should* weep. Many should weep for your suffering and the injustices and the sheer ridiculousness of your medical care.

Maybe our weeping will take some of the suffering off of you? I don't know, kind of like a shared karma? Because I know if I could take a share of your pain, I would. And I'm sure others here feel the same way. We could start our own little EMF stock market of pain.

Seriously: I think you know somewhere deep inside of you for what you are holding on. And I don't think it is actually "us" on this blog. I think it is probably something deeper and closer to your family. (Maybe we are a distraction?).

I think you owe it to yourself and any third parties to find that unresolved issue and resolve it as best you can in the time allotted. Then maybe you can make a deliberate choice to stay or to let go.

I could be completely wrong, of course. That is just my gut feeling, and I am telling you -not to make you feel bad, but from a place of deep caring for you.


wendryn said...

I'm sorry it's so hard.

I'll be here. We're not going anywhere for the holidays this time around (which is a very great relief - no planning!) so not everyone will be gone.

I'm not leaving.

cheryl g said...

You are right, it is very difficult to talk about the truths we are facing right now. Talking about them makes them undeniable. That reaction feels selfish to me and I am resolved that if you want to talk about these things I will try.

I listen to you struggle for breath and I strain to hear if you are breathing like Linda. Each time you stop is a stab of fear until you start again. Each time I use the ambibag to bring you back I question whether I am doing the right thing or being selfish. The picture of a world without Elizabeth McClung would be much bleaker for me but is it right to keep you here in such pain because I fear your leaving? Is it right to keep you locked in that room? I don’t know, it is a question I am struggling with.

I do believe that you are making a difference. You have taught me so much in the time I have known you. You have reached out to people through your pain and eased theirs. You send postcards that contain more caring than anyone could believe fits on such a small piece of paper. You have made a difference in many lives and you continue making a difference. I think a lot of the postcard recipients don’t know how to express what your postcard means to them so they are silent. They don’t think an email simply saying, “Thank you. You helped me.”, is enough and yet it is everything.

The woman in flames with the sword is you. That is my sister who protects those she loves with a fierce determination. Who does what is right no matter the cost. Who reaches out to those who are alone or ignored. Who refuses to ignore injustice to others. That is my sister who has taught me even more about what it means to truly care for others and make a commitment.

My hand is held out like the girl in the picture. I am holding on to you. I am looking for reasons to give you so you don’t just let go. I want to be at another race as your pit crew. I want to see that look of accomplishment on your face as you roll across the finish line.

Lene Andersen said...

When you told me about the ambubag, I thought of asking if you'd decided how long before they don't use the bag anymore and I chickened out. I am sorry for that. Knowing you has taught me a lot about honesty and facing your fears, but it turns out that although I am not afraid of being there when people are dying, I am afraid of you dying, so I didn't ask. We have only known each other for a relatively short time (it's been about a year now) and I simply can't imagine my life without you.

I feel selfish asking you to live because I want you to, need you to. I wish that you would stop working so hard so you might feel a bit better and so you and Linda can have the time and moments you need to say goodbye. But if working for us is what keeps you here, then this selfish part of me wants you to keep working, because then you won't fly away.

Is there room for compromise? Maybe work less, rest more, stay longer?

You are one of the people I love. I will be here for you, for as long as you'll have me.

Anna said...

I rather have the agonizing truth than comforting lies. So, please be honest. even though lesbian sleep over was entertaining.

Please, please take some rest and go to sleep early. Even if it means one blogpost less or less postcards.

And, hospital sounds like a not so bad idea after all.

I know it is hard for you, hell for you, but I can't even imagining what it is like for Linda, listening to you breath, or not.

Anyway I watched "The Crow" on dvd last friday, thought of you, kept thinking it was your kind of movie.

I suppose, though being christian, if your Love for Linda takes you to hell, well then I will probably see you there. But I rather hope we both would make it to (and Linda and the rest of course) heaven instead.

And a red ribbon greeting for everybody around the world today. Keep safe on world AIDS day.

Nancy said...

Thanks for letting us know what's going on--that must have been an extremely difficult week. I can't imagine it, and I won't pretend that I can, but I'm here listening, and I'll support you in whatever way I can.

Hannah said...

I love you Elizabeth. Truly.

kathz said...

I can only say that I'm glad you're still here. Blinkered people who can't see that the loving marriage you and Linda have is good are missing something you could teach them about Christian love.

You have made a difference to many people's lives. Many like me, who have never met you, are grateful to and for you. That will continue.

I send my love to you and to Linda and Cheryl. I may feel grief for what you are all suffering but I am also glad that I know you, even from such a distance.

Veralidaine said...

I need you.

I don't know what else to say here. Like Linda, I feel selfish for not wanting you to go. But if making a difference to people makes you WANT to stay through the suffering-- you make a difference to me. I think of you and worry about you every day.

The things you have sent me are stashed carefully in my bedroom, the postcards in a book ("Terrier" by Tamora Pierce) that reminds me of you, and the little gifts (and yes! I did get the things you sent! I'm sorry I didn't say so in my last email, I got distracted and forgot you had asked until just now!) are on a hidden shelf in my closet with the other things that are special and private to me: The ashes of the two most loved rats I have had, the stuffed animals I slept with as a child, and a little teddy bear I got at the Democratic National Convention when I was in such a state of elation after seeing Barack Obama speak from so close up that every time I hold the bear I can feel a little of that euphoria again.

Like I've said before... I don't know what I'll do or feel when I lose you. I don't know how I will fill the void of having someone who cares so much that they will take time to send me a postcard to make me smile even when they are in pain that, if I had that same pain, would make me hide in bed and cry all day. It will happen. I know I have to lose you and I love you as my friend and family anyway. But I just don't know yet how to deal with it. I promise again, as I'll promise every time you're afraid in case you've forgotten I already promised-- I will be here right up until the end. If there is something you need that I can provide, I will do my best. I will hold you in my heart now and after you're gone, and while you're here, I will tell you every chance I get that you mean so much to me. Knowing you makes me a better person.

Would it be ok (and if you're not comfortable answering this publicly or at all, I understand) if I ever do manage to have a book published, if I dedicated it to you even though it will probably be after you are gone and you won't see it, unless you do come back as a cat and Linda reads it to you? I have a finished manuscript, but it's been finished for four years because I'm just too scared to send it to agents and publishers. But someday maybe I can be brave and persistent enough to get it published, or the one I'm working on now. If that does happen, it will be because I met and became friends and family with a wonderful, talented author named Elizabeth McClung, and if she could be brave enough to send her creation called Zed into the world to be criticized, praised, possibly torn, left in the rain, loved, kept under a pillow, so can I.

Elizabeth Heller said...

i love you. hold on.

rachelcreative said...

Beth - You're wonderful and amazing. I wanted to let you know I'm reading. Short on words, feeling humbled and in awe. Hearing what you say and not knowing what to say back. But I thought at least I can tell you that.

yanub said...

Beth, if the Christians are right, and there is a hell, I will be there with you. But the chances of that are so small as to be zero, so rather, I think we all are released at death. What we are is what we have loved, and you have loved us all deeply. You have loved life deeply. You have already shared your spirit so that aspects of you reside in those of us who love you. We are changed because we now have a spark of you. I know I am changed, and I will always treasure these months of knowing you. Everyday, I wonder if this will be the last one where I will still find the source of that spark. When you die, I will cry, and I will remember, and I will not let Linda or Cheryl be alone with their sorrow. I do not want you to die, but I accept it will happen.

If you wish to hide from us your pain and fear, that is your right, but it is unnecessary. Your honesty about your life is a deep part of your being, and if you can bear to share yourself, I can bear to accept that gift.

I hope that January will find you still alive, against all expectation. And that the Seattle visit will bring you relief and an ability to enjoy what time you have left. If there was anything I could do to relieve your torment, I would.

Last night, I began writing out holiday cards and making phone calls to update my address databook. Now, you may not think that is much, but I have generally not bothered with doing it except as an obligation and at the last minute. This year, when I thought I would do the same, I thought of you. And that you would be certain to take the time to let people know how much you appreciate them. And I bought postcards last week, and wrote them out also. If it weren't for you, my dear niece, I wouldn't have done either. Whatever happens, know that your love and concern for others continues.

Abi said...

I think that you should write about what you want to write about. If you prefer to be funny, go ahead; if you want to write about what is happening to you, I'm still not going away.

I do feel selfish wanting you to still be alive even though you are suffering so much. But I still want you to stay alive. The effects of you will live on long after you die (you have made a big impact on the world), but I will miss you a lot. I sort of don't want to hold you here, but more than that, I do.

You are loved, and wanted, and needed.

Elizabeth McClung said...

Olivia: Thanks for not pulling away. As long as people want to need me, or want me; I will try to be here for them. I don't think people really need me, I think I am at best a stepping stone along the way.

Michelle: Well, I like the sentiment but the postcards aren't killing me, my disease is. I just choose to make sure that anyone can ask and they will be responded to. To take a risk, I need to be there to say, "I will catch you."

Today I was visited by the police because a certain person filed a complaint I made a death threat against them (apparently someone entirely lacking in humor or sarcasm since the line was that I would NOT harm them). So, kind of a scary day but sort of a compliment to be on oxygen and be interviewed about whether I am going to kill someone whose name I don't know - I guess by running them over repeatedly with a manual wheelchair. The police were not convince, particularly as due to my citizenship hearings in the US, I am a registered and court case filed pacifist. Thank you for writing.

I have to go, back soon.

SharonMV said...

Dearest Elizabeth,

Since you want to stay & fight, I will say what is in my heart. Please stay for me, you have fought for me, been my friend - I don't want to loose you. Remain here, if you can, as long as your desire to remain is stronger than your pain. Be an angel/hellcat on earth for a while longer, before you become a warrior in hell. I will be here for you as long as it takes, as bad as it gets. I wish I could be with you.

I wish so much that you could get some decent pain relief, to make your days a little easier to endure.

I will understand when the time comes & you must fly free. My heart will be broken, but you have taught how strong I am & can be. I will never forget you.


Shea said...

You do make a difference. ~HUGS~

Maggie said...

Hi Beth,
I feel so selfish and self-centered to say that I don't want to have a world without you. I need you for conversation, humor, and the fact that we share the same sick sense of humor.
I admire that even on your worst day your concerns are still usually for others. Why can't we pick someone else to be sick?
I wish I could do something to lessen your pain. To make thing better for Linda, to teach people to have a sense of humor.
I send my love to you.

Live Nude Something said...

What would you need, to get there BEFORE January?

Many of us don't have much, but if we all assemble little bits, it'll be something. And I am sure we can, if it could help.

Neil said...

Hi: I'm back from Calgary. I was there for a medieval Coronet tournament to see who will be our SCA Principality's next Prince. The event was great, but Calgary's traffic is Hell. If you die and go to Hell, dearest Beth, you will end up driving a semi-trailer in Calgary.

Beth, you're not letting down, and you're not scaring me away. I'm here until you're not. Understand? Good, I'll take that ragged, tortured breath as a Yes response. :)

You're fighting enough, dear. If you decide that you're ready to fly, I'll miss you, and I'll cry, but I'll not e upset with you.
But the world is a better place with EFM in it.

Sending positive thoughts and energy, along with love and hugs, 'cause I was too busy in Calgary to look for funky postcards to send to you. I'm sorry about that, really I am.


FridaWrites said...

I want you to live, and if saying that gets you through January, I should say it again: I want you to live. At the same time, I do feel selfish for expressing that wish since you should not be in so much pain--I respect your wishes and thoughts immensely. I wish there were some reassurance of an afterlife, this is my fear. I want there to be one. If there's a Heaven, you'll be there, I am certain.

I am still here, still here, still here, just like the beat of your heart--and even when it's not beating or you can't feel it, still here. A part of me is always with you and thinking of you often, every day. If you think of me, I'm there.

You've brought so much, so very much, to my life in this very difficult year.

Neil said...

Oh, I forgot. God didn't say to love your neighbour if he/she is the opposite gender. There are no qualifications in that oommandment, just the order to love others as you would be loved. You're doing that, in spades. You show your love for Linda in every way; you show your love for us by fighting back long enough to blog; you show us your love for Cheryl. You don't condemn anyone except hypocrites. You ARE love.

No, dear, sweet Beth. Your eventual destination is somewhere much better than Hell. Wherever you do end up, you'll probably make THAT a better place to. With an Internet connection so you can keep blogging, maybe??

More love and hugs,

Raccoon said...

"How much longer?"

I don't know. You are the only one that does. And, you should probably tell Linda and Cheryl before that point happens. That way, they'll know when to stop.


It's time to go.

I don't want you to go. I want you to stay with us.

I want you to to send out postcards. I want you to spend time with Linda. Spend time with squirrels. I want you to be able to do another race -- Team EFM!

I'm not leaving.

Elizabeth McClung said...

Drake: Sweaty? I don't actually sweat anymore?

You can find cool anime and manga art sites, where? Well, true I know a few review sites, just most don't seem to think that thier life should be found on the pages OF anime/manga art. But I proved them wrong!

I already have a do not resuscitate if it is believe that significant and irreversable brain damage has occured, at which point I would be used as an organ, eye, and skin donor. Of course, since I HAVE brain damage, I should probably check the wording on that. There is obviously a difference between needing a recucsitation for half an hour or a few hours to where one is constantly on the ventilator, and even then, hey, I HAVE friends on the ventilator, have had for quite some time (while I was AB), so that isn't all that bad. The question however of when is enough, enough does and will keep coming up.

I know you are trying to inspire but if all I cared about was me, I could really continue. I'm arrogant and vain sure, just not THAT arrogant. I mean, I have to fight for something and I fight for someones.

Oh, I give up all the time, it is just learning that giving up or falling flat and bawling doesn't have to be the end that matters. It is just right now, I am scared that with the pain and crap feel, and the emptiness inside, I don't know how much more I can take. I get used to a lot of things as common - can I get used to being brought back, 20, 30 times?

VK: thanks, I hope the wedding planning is going well, or if it is has happened, congrats.

Miss Fairy Sparkle: Thank you for opening yourself up and talking about things I need to hear. Thank you for saying that I have losses. Often time I don't see myself as human anymore, something else. I'm not disabled really, I'm far, far lower than that. I mean, sometimes I'm not even alive (I do rate higher than a zombie I think).

yes, a visit would be fab. I made it out a bit today and only passed out twice; thankfully Linda was there.

Yeah, I know what you mean, this isn't the greatest skin to inhabit in this world but it is all we have right. At least I got to play around a bit before I got disabled/sick - some don't get that. If you know how hard it is to go back into the skin then you have bushels of courage too - we wear what we have, we fight where we are.

Mirrors and me, ug, ironically, I only have dirty mirror and a victorian hand mirror left, as the bathroom mirror requires a person stand to use it - I can see the top of my hair and that's about it!


Jane B: I would really love to sit and be with you, to talk with you. It isn't that lonely, only sometimes, yes, sometimes very, but it was harder when I wore the invisable disability of depression and had to someone pretend every facial expression and every banal conversation. Here at least I am allowed to scream from my pain.

I do miss not having anyone many to talk to about this mindset. They don't write books: "When you REALLY know you are going to die!" But more for the spouses, about when not to get to emotionally involved. Oh, can I not get emotionally involved, that would be fun!

I do appreciate every card and package and try to email as and when I can to let everyone know what they meant to me.

Well, I don't know about my determination, but I've read your "to do" lists and you sure have some awesome organizational skills and some endurance skills too - and a great work ethic, you are welcome to help with postcards any time!

No, I think that Jesus the disabled, or Jesus the endurer, was worth imitation and I don't think that is a person who makes a thing called hell. I love that picture too and am having it framed and put by my bed. "Come burn with me!" - I think I will be saying that a lot and scaring many new care workers!

Thank you for reminding me of the different types of teaching (though I think those positions at uni pay better!), I narrate the things I see and feel becuase who else will or can. Becuase I WOULD use this for a book, if I could, maybe I can. I always say to people, planning to do something makes nothing, starting today and by the time a year later you would have done a year of XXXX, rather than saying, "I really should..." - So having something not finished is I think less shame than having something never started. Thanks. a lot.

One Sick: Okay, truth telling, but funny when it is funny (for instance, now my landlady is disturbed becuase I had two police cars show up to interview me and she doesn't know why!), and sad when sad.

Well, we never know how well a system works until we test the limits, and it seems they are okay with heart attacks but not so great on rare degenerative and chronic disorders - the good news is that a doctor who sexually molested several female patients is allowed to practice again, on a street near me (it was in the paper, which means he had to have molested a LOT of women!). So, I said to Linda, "Now THERE is a doctor that might take me on, I bet he is hurting for female patients." - the sick part, that isn't a joke, I will take my chances with this guy since he knows he is being watched if he will advocate for me!

Oh no, no stock market analogies, not after the way things are going - I am now convinced someone/s is driving down the market, I mean, biggest buying weekend of the year and suddenly the next day, they "discover" the country has been in a recession for a no one noticed for 300 days? Sorry, it is just a bit like when the UK market dealers tried and succeeded in breaking the pound being tied to the Euro.

Um, actually, the person I make a bond with is the person who matters. I will always love my family and always want love for my family. I even want love from my brother, but that would require repentance first, and while a year ago he COULD recall sexually "experimenting" with me when talking to my parents, now he "has no memories of what you are talking about". Without repentance, there is no change, without change there is no relationship. My family by blood do not have a relationship with me.

My family on the net do: when I have a bad month, they send me food, when I am sick, they come and take time off work for me. They email to see if I am okay if they don't hear from me, they send me surprises, and corsets in the mail. They care. Sure, we have tiffs, misunderstandings and we move pass that, we change, we have a relationship. I have that with MANY people on the web. I don't with my blood family.

The one thing my life (and in a way my blood family) has taught me is to be there for the people you promise to. If someone needs me, even to make it through a rough week, I will try to be there. I am the kind that burn out, over and over again. "I kept my promises." is often the last sentences I say before I am put to rest, or to hospital. I kept my promises. If there is someone out there who waits and believes in me, then I will, I must come through. I think as a parent you will understand this. Did you think that only a mother can have such strong passion; or perhaps, I have finally figured out who real family is.

Thanks though. My unresolved issue - more should care, they don't. More should stop watching and step out of the crowd when discrimination and bigotry occur - they don't. That one day sexual abuse WILL stop, because we as a society will not allow it socially to continue - if we can turn from finding slavery acceptable but keep coming up with excuses for "Uncle Ed" or "Deep down he's a good man" - we can stop it. No one will ever have to wait for someone who isn't coming to help them again. THOSE are my unresolved issues. And if there is any justice, when I die, the veil of silence that stretches around us will be ripped from the top down (That was some blasphemy if you didn't know).

Wendryn: Yeah, I forgot the everyone in transit thing. That sucks too. Thanks for sticking.

Cheryl: Well, I do think that talking about them NOW, as opposed to AFTER I am dead will be much more useful (that was a joke!).

Well, I sometimes feel ashamed of the way I use YOU. I push myself harder and try to do more becuase I know, "Oh Cheryl will save me." So I am ashamed to talk about that. Yes, I am in a lot of pain, and yes, I don't have good times, and yes, Linda has to use mouth to mouth and Ambi-bag when you aren't there but I do depend on you to save me and that isn't fair. It isn't right to make someone who cares about you feel that way, that they are scared - I'm sorry, can you forgive me for that?

I think that like right, the Postcard Project is sort of a metaphor, it is saying, "If one gimped up woman can do this, can bring in SO Many people who help with postcards and stamps and everything else, if so many can change and reach out, if so many can trust - what REALLY is possible." I can't change the world, but I would sure love to, and damn the fulcrum, if you wait for the perfect fulcrum, then you wait forever, I'll keep pushing and heaving with all my might - and whether it changes or not, at least I tried.

I wonder what someone like me would do in a better world. Would I have to go to some heavy counselling (YES!) - I mean, I need the flames, I need the fire, they define me.

I will keep on and keep on as long as I can as how I can. I have two great people in my life who help me get through these days. I would be terrified without them. Thank you.

Lene: No, we never did. I guess if they did stop, it would have been Cheryl's and Linda's decision. And I guess we should have that talk. There are worse thing than being vented. Thank you for being honest and saying you didn't want to be there when I died. I actually appreciate that.

Well, I COULD say I am going to work less, except that I am about to start a project for three days that will work me MORE, so how about after THAT I try to work less - haha! Oh come on, you knew that moderation and I aren't exactly best of friends!

Why would I not want you? I love you.

I want to work less. Not to late to learn that, maybe.

Anna: Well, it was entertaining, but it was also painful so okay, the truth; fun when fun happens and the rest as it happens, and if that is a week of it, then so be it - I can't control it, just narrate it.

Yeah, some time in hospital if they can fix up a few things and give me more time doesn't sound TOO bad (I mean the hosptial is boring and such, I don't suppose many come in ambulances ready with MP3 players)

Yes, I don't know what it is like for her. I wish I could take some of that suffering off of her. I was saying how great it was my death benefits double and she told me that didn't come into effect until she signed them in X weeks - I was like, "What, I have to keep holding on till THEN!" (sorry, this is as good a humor as it gets some days).

a red ribbon today and yes, if there is a hell, then I guess all the fun people WILL be there.

Nancy: thank you, it has been a long bunch of days and hours, and thank you for staying. I feel I am putting people though the wars. I don't mean to, but maybe I do, because I am scared.

Hannah: Thank you, thank you.

Kathz: Same here, to see, even a little bit into your life has been a privilage, and an honor and I know we will fence on a piste sometime, just maybe not THIS week.

Veralidaine: Then I'll be here. If you need me, I'll be here, as much as I can.

Thank you, knowing where my gifts are, says so much more, as Linda and I know how much love you have and the animals who are fortunate to receive it. I think knowing you makes me a better person also. A different one and a better one. You are in my thoughts often.

You can dedicate it to me, I would be honored, but MORE honored if you sent it out. Being rejected is hard and painful (tell me about it, I used to have a BOX of rejection letters for various novels). But you made this with your heart and it would be a shame to not let it have a CHANCE, as someone else reading it, and caring about it (yes, and reading it in the bath and dropping it - these things happen!).

Elizabeth Heller: As you wish! Haha. did I get that Princess Bride reference right? Thank you. I will hold (heck, if the chance occurs, I will ADVANCE!).

Rachelcreative: Thanks for listening and hearing and letting me know. If you are short on words, then please, do a picture for me - drawing or photo I don't care, sky, cement, whatever you see that is me, please do for me?

Yanub: thank you, thank you for promising to be with Linda and Cheryl - and for transporting as much of a certain famous place and its food here as possible. We eat and think of you!

Yikes, what a gift. I used to want people to understand, to "Get it" so I would feel like a part of the human race. I don't anymore, I don't know what I am but not human I think. I am so far outside what people can relate to - I just don't want to be alone. And to go through it alone.

Thank you for all you do in your generosity for so many, many people, and for me and Linda in particular.

As for January, that is the Victoria Secret year end sale.....I have to survive - I mean, I need those bikini underwear, not to mention the matching bra set with butterflies. All kidding aside, it is hours and a day at a time, and if I can, I will make it, to see the cherry blossoms bloom.

Abi: Good, I am actually partial to people who want me to stay alive rather than people who want me dead (I really try to avoid that last group!). All kidding aside, thanks for being there and listening to me. And I know this month will be horrid and busy for you. I will be thinking of you.

I prefer to be funny, just sometimes, it is very, very hard.

SharonMV: You are the one who taught me that we all fight in our own ways, that sometimes, to keep on, day after day, with sickness, with conditions, in pain, to keep on trying for that new tomorrow, that day out, that meal prepared, that bit of normalacy - So yes, I will stay, and fight for you and me, that I can be a fighter here, for what and who is important to me, is it just that sometimes the pain makes things a bit....clouded. I need reminding. Thanks for reminding me.

Shea: Thanks.

Maggie: I wish I could have a less painful life, um, what opiates do you happen to have on you? Haha!

Live Nude Something: (Great name!), Um, I have a medical test next week and then an MRI, so I need those before I can go to the states for treatment/further diagnosis. I hope that I can go as soon as possible and thank you for your caring. Linda is in charge of the "little bits" over in her blog.

Neil: Trust me, I have been in hell, and it isn't Calgary traffic! Come burn with me.

When I go, I go , but right now I stay, I guess that is how it is. What, not one tacky postcard from Calgary, that seems almost impossible.

Fridawrites: I will be here then, I want to be here for you. Oh yeah, I really want to be here for at least a week for you.

This has been a hard year for us, eh, but I've really appreciated getting to know you better. I've appreciate you in my life. I don't want you in pain, I don't want you to have a degenerative condition, but I want to be there for you as and when I can (seems like I can't so often).

Drake said...

Heh...yeah...language was never my strong-suite...meant to say sweetie ... not sweaty ... but then, I am sure you figured that one out.

Mehehe... you might have a point on the Anime, just trying to bring the point across that you don't need to sugar coat things.

I understand what you say... I know how much the postcards mean to you and how much others mean to you and it is admirable. up is not when you fall from a horse, ball your eyes out and not want to see it for a week again...because after a week, you climb back up.

Giving up, is when you don't get back on a horse ... ever ...

I don't know how many times I would be able to take it either...

I don't know when fear becomes a normal routine of life...

I tend to think I know what it is like for pain to become a normal routine of life...but then, there is always more severe pain to learn about...

So long as you keep fighting for something...that is the most important.

cheryl g said...

"It isn't right to make someone who cares about you feel that way, that they are scared - I'm sorry, can you forgive me for that?"

Yes, I can forgive you for that. I love you always.

Elizabeth McClung said...

Raccoon: well, I was sort of hoping for some tips on how you hit medical bottom and then find yourself all over again. But this was good too.

Yeah, you are right, I need to stop living minute to minute and make that decision so that the people around me know. I guess once I make that decision the trick is not getting in that state - if only that was something I could regulate.

Today was a good day, I passed out a dozen times or so, maybe more, and I needed the extra meds and my heart hurts me now. But hey, is this an acceptable life, can I stand it?

I can stand it, as long as Linda wants me to - I need to ask her.

All those things you want, I want, I want to send cards to you and everyone here. I haven't been able to send enough FUN postcards lately. I want to do that. I want to race again. I want to feel something other than fear, wanting to go, or denial. If the hospital can help with some of that, so be it.

I'm not leaving yet either (she says after her big opiate hits her and she feels okay and starts to laugh for no reason - no, no outside influence here - I asked Linda today, "Why did I buy this, was I high?" And then we thought about it and realized if I've been high for like, three weeks, and even that only cuts the pain so much. But it was kinda funny.

Penelope said...

I'm a rare commenter here (very rare) although i read every day (and when I started reading, probably 2 years ago, I went back and read all of your archives as well). I just wanted to let you know that I, like others, would rather have the truth than what you think we want to hear. One of the things I have always read you for is your truth. You hit us all with the hard stuff. You will always be EFM, no matter what. You don't need to prove it to us or anyone else.

And, of course, I am on the side of the fighters who want you alive. Do what you need to do. I agree with Michelle that postcard project recipients are likely to care that you live than that they get their postcard.

No matter what happens you have touched so many lives. More than I think you will ever realize.

Kita said...

This has to be the most emotive blog in the history of blogging. Elizabeth, I will NEVER let go of your hand. I love you, your honesty, your way of expressing yourself and I am sorry if it seems I am one of the ones who are drifting way. I am not, not ever.

I would be lying if I said 'I know how it feels' because honestly, I dont. Or, as you said, how it doesnt feel. Non-feeling is a scary place to be.

Take care, my friend across the water. We will drink tea and scoff the rest of the world.

Victor Kellar said...

Collette and I are thinking of you. We care about you. We love you. We are here

rachelcreative said...

So I took a photo or two for you Beth. I emailed you. I'll blog them at some point too - dedicated to you :o)

Neil said...

The only store I actually got inside of in Calgary was the Mountain Equipment Coop; I got to Calgary at 4 pm on Friday, took a wrong turn and was lost in the southeast part of the city of two hours.

On Saturday, I drove straight from my friend's house to the SCA event, stayed there until 11 pm, then drove straight back to the friend for bed. On Sunday, I ried to repeat the route, got lost, arrived at a meeting 25 minutes late, just in time to hear the end of it. It was scheduled for two hours, and NOTHING in the SCA starts on time. Unless I'm not there, apparently.

After 90 seconds at this ever-so-important meeting, I drove north to find fuel, then east on Highway 1 back home to snowy, cold Regina. Sorry, luv.

So no shopping for much of anything, no sightseeing in Calgary (except traffic); just lots of money to get there and be late...

I'll send a photo or two privately, though and try to make up for the lack of postcard.

Love and hugs,

Tracie said...

Hi, Elizabeth. My name is Tracie.
I was introduced to your blog by Dawn.
I am one of her attendants and she has spoken often about you.

I just wanted to reach out to you and offer my support.

JackP said...

I'm writing this before reading to the end of the comments, so apologies if any of this has been said before.

1) There's nothing wicked about loving someone. Any God or Gods would know that. So I wouldn't worry about that; just feel sorry for those who can't understand it.

2) I'm sorry you're suffering. We're all sorry. But the world is a nicer place for your writing, so thanks for bringing it to us. If the pain gets too much though, don't feel you have to stay for us: just make sure you work out a way to come back as a 'ghost blogger' :-)

3) Don't work yourself do death for us, 'kay? We'd rather you took it easy and just posted / carded a bit less frequently...

4) Love and hugs and all that, yeah?

Lisa Moon said...

Hi, Elizabeth,
I have just moved into my new place, set up my computer and came right to "see" you when my Internet was connected.

I'm sad that it might be getting close to that time for you, but that is probably somewhat selfish, as I can't imagine not reading your amazing writing here, but also thinking of Linda and Cheryl's deep and glorious love for you.

I can't help but have this optimistic streak that you will get to your clinic and they will find xxxx that is THE thing that doctors stupidly have missed and what's more, they're able to, well, just fix it so that your life will once again be something non-torture-filled.

Beth, you sent me a lovely postcard with cute, volleyball playing girls on the front. What especially caught my eye was that the ball seemed to have a logo or something on it, resembling a can of soda pop, which read "Stevia". I don't know if this is the name of a brand that's popular in Japan, or perhaps the series from whence these athlectic young women came, but it just seemed like a Sign that your card was meant just for me.

You see, my son is a special young guy and rather than drug him up as many special young people seem to have forced upon them, I sought knowledge from natural sources and researched years' worth of nutritional, behavioural, learning disability/difference and even sorta 'new agey' stuff to find my own answers. Long story short (too late), in my health travels I came across the use of the plant stevia which is a natural sweetener which does not cause glucose-level changes... this may seem farfetched, but like I said, it was like a little Sign to me that you just somehow KNEW this was the card for me.

I just moved yesterday into my new home and I made sure to pack that postcard very carefully and as I did, I smiled at the love and attention to detail in the cute stamps and stickers you affixed to the card. THAT is why so many love you, as do I; your sheer determination to give and to reach out to others, even when things have been so incredibly rough for you...

Thank you for allowing me to know you here. I've enjoyed the Lesbian Sleepover blogs as much as I've enjoyed this post, for it's honest truth.

You're a gifted writer and we are gifted each of us to have you as part of our lives.

And I'm still here, still offering that hand to hold should you want it.


thea said...

I'm glad you have the people you have.

I'm back. Adoring the pictures, forget which ones but the ones from here, there's a particularly marvellous expressive one.

SharonMV said...

Thinking of you, Beth. Sending love & hope to you (we all need both so much). I hope for a better day for you today. I hope constantly for some decent medical care for you. I know you have love, from Linda, Cheryl & all of us here. I know that you have great love & affection for us.

Thank you again for the beautiful picture of the girl among the Chinese Lantern blooms. Your cards & gifts have helped sustain me & lift my spirits.


Donimo said...

I'm here and not going away. I'm not here as often as I would wish, but I'm hoping that once I get back into my home that my usual computer set up will help lower my headaches and give me more time online. I hope that my caring can help just a little bit with this endless marathon that you are running and these walls you hit over and over.

It's frightening, what you're going through, and hard to read about, but I'm not scared to go forward with you as an online companion (such that I am - I do wish I could do more). It's good to hear that you do see a reason to live and carry on despite your crushing burden. Your writing and postcards make a difference for people - you lift so many people up and you've influenced so many. You are needed here.

seahorse said...

I'm shaking my head in disbelief at your determination to carry on communicating. Why? Because at times I give up. And when I do, if it's for long periods, that is far more what death feels like, to me anyway as it's still quite an abstract notion. To have disappeared, to have been want to disappear. So, who is living meaningfully by not 'protecting' themselves, from hurt, pain, further deterioration? You are, most definitely. Everything you write is truth spelled out.