Wednesday, July 09, 2008

A letter on dying: #1

Dear friends and readers,

There is no way to make this easy so here it is, I’m dying, and probably fairly soon. I am going to try to use a series of letters about the emotional experience around dying and my thinking about that to share where I am and what I am feeling.

First off, what does “soon” mean? By my calculations I am in the Penultimate Stage; the ultimate stage would be where only machines are constantly maintaining my life and the removal of them would end my life. It isn’t just me but Linda who has been feeling it too, particularly with this new progression of my inability to convert oxygen, even when ON oxygen. As she said, this was the first time I hadn’t come up with some “trick” or way to make things go back to ‘normal’ (no matter how much rest or exercise) and that is when she realized, that my life is coming to an end. Now that could be a couple hundred days away, or maybe if we get the right equipment in time, even longer, or of course, much shorter. The sad reality is because of the medical system in Canada and the exceptionally long delays in certain types of diagnostics and treatments I will almost certainly die sooner than if I had the proper equipment at the proper time. Even now, perhaps IVIG could do some good, make some stabilization but it is a treatment that even if approved would take months to get enough specialists to APPROVE that it was approved. Laugh, everyone, laugh.

It has taken me a couple days to work up to writing this post. I guess in the same way I never sent out the letter to all the people I had fenced with saying that I would never fence again and to thank them for their support and the enjoyment we shared. I wanted to believe that something would be found, someone would care, that it would look like one of those medical shows where doctors seem to give a damn and go around yelling orders and being impatient for results because they actually want to do something. And even after the neurologist told me that the nerves in my limbs were destroyed, permanently destroyed, that I would not effectively walk unassisted again, even if they figured out the heart and BP problems when I am upright, I didn’t send out the letter. I was scared that I was the only one left who cared about that. I am not a fencer anymore. Period. Full stop.

There are physical aspects and psychological aspects to dying. One example, right now is that I don’t buy things for myself, and haven’t for several weeks, just postcards, stickers and gifts. I have accepted that anything I buy, unless it provides months of constant use or joy, will just be another item that Linda will have to deal with once I am gone, and there are going to be plenty of those.

I am tired, fatigued on a daily basis that isn’t seen by outsiders or even visitors. I am also in contant and continuous pain. What used to take me two or four hours after Japan takes me all day and all night now. In fact, approving comments, responding and writing the blog takes about 10 hours a day. But I’ll get back to that. There are the increasing number of seizures and TIA’s (5-10 a week). There is always the threat of another stroke. My heart is failing at a slow but steady rate but the circulatory system and oxygen have sped up in terms of failure. I asked a nurse on the lung unit who saw that I was on oxygen and my fingers were purple, my lips blue, what exactly was the progression, what intervention could they do? As the circulation continues to withdraw and the blood fails to convert or circulate, the oxygen is pulled back further and further, until I am on oxygen 24/7, like at Port Angeles, but I would go into the hospital. At least until a 24/7 unit could be set up at home. What then? I asked. The blue will advance or the black until it goes to the shoulders. And the solution? The only thing they can do is increase the flow; give me a face mask. And after that? There is no after that.

Oh yes, I could go to the USA now and spend a couple thousand dollars of Linda’s money to get a diagnosis. Know of any disease that hits athletic women who never smoked and have healthy hearts but can’t get enough oxygen even when on oxygen? Know a disease that destroys the entire peripheral neuropathy while the person is still alive? That takes away the need to eat, to drink, to take a breath? That makes EACH CHAMBER of the heart individually erratic and the blood pressure fluctuate in minutes from 195/176 to 105/50? That takes away eyesight, and makes your organs slowly die inside you? I am not leaving Linda further in debt because I cannot accept what a neurologist screamed at me, There is no treatment.

Of course, I could stroke out instead, have a massive stroke from a blood vessel breaking down and splitting or bleeding in my brain they way they already do in my feet and the hollows of my elbows. The last few days, I have woken to painful spasm in my leg muscles below the knee. Maybe they are just deprived of oxygen and maybe now the muscles are dying too. I don’t know.

I know I have an auto-immune disease, I know that my limbs and perhaps every nerve in my body is dying or already permanantly destroyed: the axons destroyed. I had an MRI a day or so ago which will either prove my neurologist was right that “nothing is wrong with me and the MRI machine is wrong” and my T1-T-4 is not losing nerve function or that I am. But as I was put in the chamber I was told the MRI would to take 20-25 minutes and I was in there 75 minutes while the head radiologist was called, and they repeated sections and did my C section as well (not asked for). Very um, thorough if they found nothing. Not that would stop the autonomic failure of my central nervous system. If my night system ever fails as my day system does, I will simply stop breathing. I won't wake up. I will be dead.

I have both oxygen bottles AND an ambi-bag (the one EMT’s use on people who aren’t breathing) around me for use by care givers.

So that is the physical aspects, besides that my hospital bed ordered November 2007 and approved some time ago by blue cross is being installed this week, and I will have a special table to keep doing computer work as able. I will spending more and more time in bed. I say that because right now it is only the pain of a poor bed that forces me to transfer to the better computer desk chair. That too is being replaced with an electric chair which will include seat belt and neck support. Linda is ordering a portable oxygen concentrator. I need these things, Linda and my caregivers will be happy to see them.

Psychologically I can’t say I am in the “acceptance” stage, but I am also not an idiot. I have a box of the mail I have received from people organized chronologically. Because I do not understand time, it helps me if and when I have extra hours to make sure people get a thank you in the order they arrived. Also, I need to look up their name on the computer if they are now in the “blank space”; and please don’t take it personally, Cheryl has often ended in the blank space or ended up with another name altogether.

I have just come to realize and accept, with frustration, that I likely do not have the time to write those thank you notes. I don’t have the time or strength to get the Ebay auctions together for anime. I have books I have saved my life to read and now, even if I turned off my computer I would not have time to read them all. And the ones I read, I would have no one to talk to about them, no time to write a paper, and if I did, I wouldn’t be here to see it printed.

Before I was playing at dying, sure it was dangerous but I always had another trick and I knew the day would come when the tricks ran out but that wouldn’t be today so lets just go on……except, well it IS today. And what will it feel like in 100 days when summer is over, and I will not have the strength to go places but rather be ‘taken’ places. And that is a major distinction.

I went to the library and I got a few books. Reading is harder and harder for me. But while there I felt the need to write. There is such a lack of books on disability in the Teen Section, a lack of books for female athletes. I want to write. It was the first time I WANTED something in a long while. I am stopping my job hunting after many applications and over a year of trying. First, Canada is not ready to accommodate a disability, and second, people make the type of judgements about a person in a chair the way US Southerners in 1890’s made judgements if a person’s skin was black. Yes, I still want the human contact and satisfaction of a job, but I am admitting that I no longer have the energy to do job hunting as a hobby, nor the capacity to keep that job if I got it. My protest is over.

In the last three weeks, I have been too weak, tired and occupied with one or two appointments a week and keeping the blog going to have the energy to do postcards. I have to wait for assistance for that. The spirit is willing, but the flesh is weak.

So I am asking the people who read here. I will be honest, the comments, the knowledge that people read here is what enables me many mornings to get up, and get through dressing and getting to the computer. I am in pain constantly, I am alone, I am tired. Without the blog, none of that would change; but I would not chuckle at comments or have the freedom to express my frustration or joy and have a response in hours. I would not have this community.

I do not want to give that up. And I know that if I blog less that many people, as many already have, will drift away. The blog isn’t sex reviews and sarcasm all the time, or me off doing zany things. This is the part when it is going to be pain and then even more pain before laughter, at least for some weeks; more losses, probably each week, each month. And one day Linda will post I am in the hospital, and then some time later there will be a post that I am dead. There won’t be any more postcards after that. Screw Bronze will be over. And I am scared.

So I want to know what to do. I would like to post a little less on some days, maybe just short posts. And I would like to take one of the days on the weekend off, just for now. I know that a lot of people come here every day and I know that once I am gone, they will drift off to another blog. I’m a realist. But I want to know from the readers what they want; is three big posts and a couple smaller ones a week enough? I would like a couple days to try and write a book, and I’m not just writing that like so many do: "I want to write a book"; this is my last go. I know I won’t see this book in print, I just need to write it. Sometimes the joy of writing something that should be written is worth more than seeing it credited as an accomplishment. I have learned so much in the last 18 months and I don't want that to end with me. I need to start soon. I guess I am asking for collaborators here, for you to help me so that I can this done. And I will post how it is progressing. God, I hope it progresses.

I guess that what makes death and dying real to me, is that I realize that this is IT; this is all that I will do, all I will accomplish, that whether I like it or not; this is the culmination of the life of Elizabeth McClung. I can have a wish list as long as my arm but I might, if I keep using my tricks, get one or two more things done. But the meaning of them has to be more than what anyone will think about it, any review or applause. This isn’t about a legacy, because I don’t have one. I learned a lot and hoped to pass that on. It didn’t happen. I started this blog and now this is what I do. I want more than your permission, but support to do more. While I can. And that you won’t leave me. If it looks like I am publicly begging, I am. I have nothing to lose in begging, I have everything to lose if people drift off, if I die alone, a blank computer screen my contact to the world.

And yes, won’t it be great if we joke about this post a year from now. I will be the first to point out how drama queen it is. But if you know of a way to breath and keep your brain going without oxygen, now would be a good time to tell me. If you know a way to stop the fatigue, the pain, the whole horrid ride, then tell me, tell me.

I will not see all the TV series on DVD I own, I will not write all the postcards I want. I don’t know how much time I have but once I start the “final” stage, I expect it will be very quick, so while we are ON the edge of the cliff, lets dance while we still can? That’s where things are physically and emotionally for me, so I need to hear from you, what do you want to keep coming back every day? Because soon I won’t be able to post at the level I am now even if I spend all day doing it. I want to write, there is another book in me, and I want to write it. Do you want that? How do you want it? All I can say is that once I have the book done and edited a few times, I will send it by email to those who are interested (Oh golly, I might miss out on some Royalties when it sells, ha ha ha – laugh, people, laugh.).

70 comments:

Jo Tamar said...

Hi Elizabeth
I don't comment very often, but I wanted to comment here to say: even if you don't post every day, I will still be reading, and you still make me think more than most bloggers do. That's something I would value, even if you posted once a month or less!
I also want to let you know I've received two postcards from you in the last week or so - thanks very much! They (and the one from Japan) are sitting on my noticeboard, in amongst a whole lot of notes for my thesis, and I can see them when I look up from my computer. I was particularly thrilled to get one of the pressed flower stickers that you mentioned in another post that another reader sent to you (so thanks to that reader, too!).
Jo

Olivia said...

Well, I read some blogs that update only every few months. That's what a feed reader is good for! So post as sporadically as you like or need and I will still read them, and I'm sure many others will too.

Definitely write that book if you can.

JackP said...

Well, I'm here for the journey with you as far as you want to take it. And I suspect your other readers likewise.

You won't be forgotten. Admittedly, that's little consolation for someone who would rather stil be here, but it's all I can offer. It's not as if you're dying and no-one else is: we'll all join you in that 'night' at some point - it's just you're going early, so you have to face the concept of death which most of the rest of us try to ignore.

All I can do is say that your blog's title says it best. Screw Bronze? This blog has always been solid gold, and as long as you want to, and are able to journey with us, we'll be here reading.

SharonMV said...

Dear Beth,
Short posts, take a day or 2 off on the weekends - whatever you want. One or two sentences a day - I'll take it. Write your book! I'm here, as long as you want me here. But please don't leave us until you have to. You are not replaceable.

And when I'm better and going outside again, when I see the ocean once more and walk in the woods, I will write to you & tell you all about it.

Sharon

Lisa Harney said...

Even though I have sucked about commenting here lately, I have been reading every day, and I've been dreading the post from Linda saying that you've died.

Screw Bronze is the blog that I read and comment to most often, though. Even when I'm playing WoW (which I'm currently not), I still read here. I don't comment every day - I have my own energy issues, as well as other stuff I have to take care of - stuff that refuses to calm down and let me take it easy, sometimes. :(

And I will keep reading here, and try again to comment on every post.

Much love to you and Linda.

yanub said...

Oh, Elizabeth. Is not the title of my blog "Yet Another Never Updated Blog"? And yet, you read it, sporadic as I am in updating. How could I do less for you? I will read everything you write. I will comment more often than I reasonably should. Be your days one or one thousand, I am part of your community, and have no intention of leaving it before you leave us all.

You say have no legacy? You will be leaving a tremendous legacy. There is not a day that goes by that I don't think of you. You have changed how I look at the world. I have learned so much through you, and about myself. I could never thank you enough.

Do postcards if you feel up to it. If you no longer have the energy, then don't worry about it. Don't worry about thank you notes, either. The best thing is to chat here, spending some time with you. If you do write a book, you bet that I want it!

Victor Kellar said...

Blog when you can. Blog what you need to talk about, when you need to talk about it. Of course, you should write, write until you can't write anymore. Write it with an audience in mind but write it for yourself. I always wrote cause it kept me sane. I stopped writing many years ago and stayed sane .. but I wasn't whole. You helped me to see that. I am writing again,even it if is only my blog. In a very personal sense, that is your legacy though of course it goes much further than that. If the blogging helps you, if the post cards help you, then do them. If resting and taking care of yourself helps you, then do that. There are people out here who care about you and we won't be going anywhere. Remember the people around you as well, they care for you and they may need you to do/not do things for them .. as well as for yourself. Listen to them. Listen to Linda and Cheryl.

We will all be listening to you

Elizabeth McClung said...

Thank you for your reassurances. You don't HAVE to post, just post when you want. It is just, I feel like I know each of you, and I don't know my neighbors, and if you left, I would miss you. But I DON'T want to give you the guilts okay? I just needed to know if it was okay to try this book and to tell you where I was physically and emotionally.

Jo Tamar: Well, I think there is something about if thou send a lot of postcards, then thou shalt recieve postcards! At least someone has been sending me things in your name. So I am glad you got some back. Frustrating thing the other day I came up with some brilliant one liner which summed up as aspect we talked about regarding your thesis and now it is gone - next time I will write it down. SharonMV did the flower and she grew it herself too, so I am like, "Wow!" Because all I grow in my window garden is the smell of rotten things.

Olivia: Oh, I should get one of those! I just want to make sure this is place people want to drop by in as well, not like an empty house. And I don't know how to give the, "Hey want to be part of my life" AND be he reclusive writing person (becuase to write you need to NOT have a life).

JackP: I like your realism. Yeah, we all got a one way ticket on the ride. It is just, this is how I PLANNED it and it is so annoying when the plan goes wrong. Seriously, the pain of leaving Linda, of leaving more and more of my life as I no longer have the strength or energy to use it is painful beyond belief. It is like growing old in three months.

And the whole problem is that as time goes on, death will be harder to ignore. Is that okay?

SharonMV: Well, the part about not being replacable is the arguement I made to the higher being but apparently MANY others made that too. Suck! No, I will fight and use every trick until there isn't a single idea or plan left. But I can't afford to pretend, it is too dangerous and painful. Thank you, I will write. And you will write me, of oceans?

Lisa: don't worry, not a guilt thing, just a sort of centering myself thing and hoping that I don't just DO something but try to get a consensus. Comment when you can, when you are interested, when you care to, when you are able. And I will reply the same, deal?

Yanub: Well, first I don't read your blog often enough, sometimes I get sporatic bursts of energy and do about 10 blogs and then plow! that is it for the next few days. And please, family first, and knowing that you will be here and comment when you can or are interested, is enough, more than enough. I do want to do a book and I want to do those postcards too. I want 997 postcards. And if I can only do them with help, then that is how they will be done. Onward! (haha, Elizabeth you dope, you have to go sleep now!)

yanub said...

I know you can't read my blog regularly. But you still do read it, and I know doing so represents a huge investment of energy on your part, and I appreciate it.

And when I'm reading your blog, much of the time, I'm sitting up with my usual insomnia, so we are online together in real time quite often. I'm glad you still intend to meet your postcard goal. Whoever gets the 997th will have to scan it and post it for us all to honor.

Anonymous said...

Hi Beth

I echo what everyone else has said - I'll still read whatever you post, however often (or not) it is. I'll look forward to seeing the book...

I'm going to put something in the post to you at the weekend, but there's no need for you to try and remember who I am, or to reply in any way.

Defying Gravity

Isis said...

Go write your book. Write it. People need this story, and believe me there are always people trying to make sense of something they are dealing with and there are never enough stories for this kind of something.

I can tell you that even if you wrote little bits here and there on this blog, I would read them all. I agree with what jo tamar said that you make me think more than most, and you get at the complexities of things more than most, and I believe that will be true whether you write these lovely long posts or quicker posts.

missnomered said...

Hey, I'd read (and comment) even if you posted only once a week. I think your blog is quite nifty - actually, better than nifty - you're a really awesome writer, and you always seem to pour your heart out into whatever it is you're writing. And I like that.

Also, if you feel well enough and whatnot, do you want to send me a postcard when I'm at camp? I'm leaving, for about 5 weeks, starting on Sunday. It's this awesome hippie-ish arts camp and yes, at 16 I'm getting a little old to be a camper, but whatever, it's my last year as a camper. (You can be a camper there up until you're 18.) Anyways, I can email you the camp address if you want, I figure that should be okay safety-wise (with parents and the like) because it's not my house or anything, and I'm pretty sure it's a P.O. box address.

Tom P. said...

I told you once before that I will stay as long as you want me to and I meant it. Just I ask you a favor, if you are going to blog once or twice a week, please just blog, "I'm OK," on the days that you aren't doing a blog because I worry about you too much otherwise.

Carapace said...

Elizabeth,

Do you know, I've never felt anyone close die? Distant relatives, estranged acquaintances, sure. But no one who was actually part of my life, who I thought about on any frequent basis.
I won't pretend I've been reading your blog from the beginning. But the intimacy of your writing makes me feel I know you better than people I've known for years. I find myself mentioning you in conversations with people who don't read your blog, and being jerked up short when they don't recognize your name. It's Elizabeth, I see her all the time! But of course I don't. It just feels that way.
And much as I like to think my no-deaths experience is some magic effect of my affection, I know it's most likely just a result of youth and isolation, so I'm afraid I can't help you much. It's maddening, especially since I'm sure there are things that could be done, but all my suggestions are American and not what you asked for anyway (though say the word, I'll throw all my researchy power behind your cause, and call and harangue people too.).
I really, really don't want to watch you die, even long distance.
I don't want to lose anyone, ever.
But even more, I don't want to miss out on whatever part of your life you still choose to share.
You ain't getting rid of me that easy.
And I can hardly wait to see your book.

abi said...

I've been thinking for a while that you should write another book, but that's not the sort of thing you should really impose on someone. Given that you want to do so, you should get started as soon as possible!

As far as the blog is concerned, I'll take whatever you give. I think that you should take more time off writing the blog, and that although it is a wonderful thing to leave behind, a book would be even better. It seems unlikely that I can be of any practical help in this endeavour, but if you want any proofreading (I can even set my spellchecker to Canadian English if you like), let me know. It is one of the things that I do, and I promise that I proofread better than I comment!

With the blog, though, if you updated it with a sentence or two every day it would keep some of our worries at bay - perhaps a twitter feed or something. Entirely selfish on my part to want this, but I do worry when there is no post and comments have not been approved. Whatever happens, I will be checking it every day.

Gaina said...

I want what you can manage. No more and no less.

These blogs you've written would make a great compilation book, as they contain many things that people in your position need to hear. If you can think of anyway I can help you, please let me know.

If you want to make video's - say you have a day when you can talk but not type, or you have old footage you'd like to share - that you need me to edit, we can sort something out with an FTP program or similar, I'm sure. Just let me know.

I think we should keep 'Screw Bronze!' going, as a tribute to you and to keep that attitude alive. It would be an amazing torch to pass on.

I hope we WILL get that 'Drama Queen' blog in 12 months' time. I for one won't be surprised if it happens :).

sly civilian said...

i had kind of thought this post was coming. of course, i didn't *want* for that to be true, but such is life.

write what you want, when you want. i read whenever you update, and i'm always glad to see you write.

take care, and my thoughts are with you.

Ruth said...

Just need to echo that I'll read your blog no matter how/when you post.
Also thanks for the postcard and your offer of help last week - things are better - I appreciate your support. It meant a great deal.

cheryl g said...

Hey Sis

much as I wish to deny it my instincts have been telling me the same thing about your condition. I believe your assesment of the progression of your illness is correct. Oh how I wish it weren't and I truly hate typing these sentences. However, to be less than honest with you about this is a disservice to you.

Please post as much or as little as you need to. Do postcards as you can. You should manage your time and energy as you wish so if you need to withdraw from here and use the energy for writing a book then do so.

No matter what you do, I will not be going anywhere. If you posted once a week or once a month I will still come read.

If it will help you to have me underfoot every weekend assisting with postcards just say so and I'll be there.

I will email and visit and do anything else I can do up to the bitter end and it will be bitter. The world and my life are richer for having you in them no matter how brief the interactions.

I do love you!

Penny L. Richards said...

There's a difference between a blog that's been abandoned from boredom, and a blog where even silence means something--on your blog, even silence will always mean something. Post an old TV test pattern some days if you want to, post video of anime characters reading the phone book (if such a thing exists), post nothing at all, but we're still here.

On children's books about women athletes--when I write about historical women, including athletes, I find that sometimes the ONLY biography available is written for children. So if there's any promising way to address this lack, I think you're on the right track. (I can send a list of titles, if you'd like to pass it along to your local librarian.)

Also on women athletes--today is Hassiba Boulmerka's 40th birthday. She was the first Algerian to win an Olympic gold medal, in 1992, when she won the 1500m at Barcelona in a really exciting race. She came home to death threats and spitting, because she bared her legs in competition. Undaunted, she spent her time on the IOC's Athletes' Commission demanding that the IOC sanction countries that don't support women athletes. There's someone to tell about in children's libraries everywhere.

JaneB said...

Hi Elizabeth,

I'll keep coming by even if you don't write every day. You write your book - and we'll all be here thinking of you and cheering you on, whether you are able to write here every day or once a week or whatever.

We're all on a one-way journey but that is the secret ingredient that makes life so precious, that makes each other person so special. Thank you for sharing the journey with us - you may be taking it quickly and early, compared to some of us, but we're all on the same road and... it's been a priviledge to know you, and will continue to be as long as you are with us.

And stuff thank you letters - stick a quick thanks on the blog if you must, you have more important writing to do!

Maia said...

Dear E,
Thank you for your frankness. Please do keep writing on the blog if it is good for you - I know it is good for me to read what you write! Don't worry about updating every day or trying to be cheerful. One of the things I love most about your writing is your honesty. Take care.
-Maia

Lene Andersen said...

Write your book, leave the blog with shorter posts - I'll be here every day, no matter what. If you need to write a book, that's what you should be doing, where whatever energy you have should go. You are dying - that gets you a free pass on the kind of 'shoulds' that's for other people. You have given us so much and now's the time for us to give back.

I'll be here. And I'd love to read the book.

Neil said...

Gee, and I was getting stressed about a colonoscopy next week...

Look Beth, we know you're dying, and we're still here. I admit that I worry when you don't post comments regularly, and I'd love to be able to email you back and forth the way we did about the Blood Ties DVDs (mmmm, corsets!!!), but I also know that you're not able to respond as quickly as you did.

You go ahead and post whenever you have the spoons to do so; write that book, watch a tv show, spend time on BETH, and put up the comments when it suits you.

I'm here dear, still reading, loving, laughing and crying with you.

Hugs,
Neil

em said...

Elizabeth, what I want is for you to fly. When you fly, we all do in some way, and I think writing your book is how you fly. So please, write that book, I'm going to keep coming back here, and like I said the other day, I think your legacy is like being a mother in some ways. Because when you are a mom, you can't see what effect your sacrifices have had for many years, and when you are there and we are all scattered about, it's hard to see the effect you have had on us. But you have given me a lot, a lot.

Throw a small post on the blog from time to time, but Write That Book! I want to read it.

shiva said...

Once again, you have moved me too much to coherently respond (so please forgive my possibly sentimental-sounding dribblings, and the possibly "inappropriate" bluntness of my emotions).

I am here, I am reading, I will be commenting when i feel able, until the end. However and whatever you post doesn't matter, checking your blog has become the FIRST thing in my daily routine (well, after checking my email)...

This probably sounds really weird, but i realised today that your death will probably be the first death of a person i "knew" to genuinely affect me emotionally, and that was... incredibly strange, but demonstrative of the very real power of connection created by the internet, and very humbling. (Not that you should see that as a bad thing, or something to feel guilty about!)

I was kind of glad when i saw posts on your blog by Linda, because it meant you had given her the blog passwords, and it would be awful if your blog just... stopped, and i would never know how or when or even if...

Screw Bronze the book would be amazing - and you've probably already written more than enough content for it - at a conservative estimate you must write ~1000 words a day, and i've been reading your blog for close to a year, so that's at least ~300,000 words just since i've been reading...

You are awesome, and don't forget it. Even after you die, it will still be an awesome thing that there are atoms in the universe that were once part of Elizabeth McClung.

Wendryn said...

Post when you feel like it & have the energy - I'll read it no matter when it shows up, how often or how infrequently. If you want to write a book, write it! I'll read whenever you can write here, and I'd really enjoy reading a book if you write that, too.

Amanda said...

I don't comment very often either, but I have a few times. I am probably in one of those blank spots, because we only recently met up online. My name is Amanda Fetterhoff, and we shared a few e-mails.

I visit your blog everyday, regardless of if there is an updated post or not. Until I read that there will be no more posts coming at all, I will continue to do so. I'm more of a silent lurker, and I just wanted you to know that I am still here.

I got one postcard from you, you sent it while in Japan. I waited throughout your whole trip (while reading every post) and I was so excited when it finally came.

Anonymous said...

Elizabeth, you have been writing a book all these many months. Your blog is not just one book but several small books. If I was a publisher, I would see great potential in your writings about your journey. As a reader I have laughed, cried, been outraged, and most importantly been sensitized to all, and I do mean all the issues you have brought forth.

We will keep reading your words for years to come. Keep writing, keep thinking - your thoughts and fears at this most difficult time in your journey are listened to. Your readers, even the silent ones really, really care about you and your journey. Thank you for allowing us to follow you on this journey. You are making us all richer for this privilege.

spinningtransformation said...

Elizabeth - enough will be whatever is enough for you. whatever continues to feed you. knowing that you are living whatever time you have left (and may it be enough) to do the things that will make this time the best for you - will fill your time with as much love and light as possible. That will be enough for me (and I bet for everyone else).

Write your book, write whatever posts you desire, write postcards when you can - you are a writer and should be writing what is calling you, what is coming forth - especially in these last days (however many they are - may they be enough).

Your writing is your legacy - and the community of people that read it and are changed by it is your legacy. You may have not been able to change the attitudes of all employers in Victoria, or the crappy treatment you are receiving from you so called healthcare team, or the generalized homophobia you face - but you have changed many of us for the better. You have made me think, made me see the world and my life differently, made me start writing again - thank you.

Your blog is the only one that gets its own spot on my bookmark bar - and i check it everyday - i read it all and will continue even when the posts are sporadic. Your blog is on my feed reader and I save it for last every morning - it is the post that leaves me with something to think about all day.

Thank you for you honesty and willingness to allow us to participate in your life and death. It is an honour. Please continue as long as you are able and fed by it - I will read and respond.

(and yes, put me on the list for the book!)

Love - Christina

Anonymous said...

Elizabeth,
Write your book, write your cards, write your blog what ever makes you happy do it!Your blogg has meant so much to so many it is time to do for you. What ever you need just ask you would be suprised what people will do for you. Speaking for myself I would do what ever I could just tell me. I have had the priviledge to be able to be with some of my friends and family during their final journey and with them when they died, to be that support was special. Spend time with those you love, we will be here when you have the time and/or the energy.
Collette

Nancy said...

Have you ever thought about publishing the blog itself in book form? Maybe with the comments included, so readers of the book could get a sense of the community involved? I think it would be an incredibly meaningful book.

Veralidaine said...

I too have been dreading that post from Linda. I want to make something for you and I want you to have it before the end, and hopefully some times when I'm not in the blank space so you know I sent it, and hopefully in the blank space you know it is a gift from someone who loves you like family even having never met you.

And me in my little bubble where death seems far off (even though like everyone I could die any day) I can "not have time" to work on it when the truth is I have, barring disaster, plenty of time. You truly do NOT have time.

I hope something will change and we will laugh about this in a year, but so many changes, so much loss of function, in such a short time... I'm scared for you, and also for me because I don't deal with loss well, but I will be here until the end come hell or high water.

Write your book, Beth, and post as little or as much as your condition allows. I want to read your book.

You will likely never see the results, because I do such things slowly and with much fear of rejection and criticism, but I want to let you in on a secret: You have inspired me to write, too.

I have already finished one novel... unpublished, of course. It is young adult adventure/fantasy/sci fi. But between then and now I have written... a few short stories, that's it. And there has all this time been a story in my head, since long before I discovered your blog, wanting to be told-- but to tell the truth it arrived on its own somehow, and I've had no clue how to give the characters I envision a place to be and grow.

The story-- and this is hard for me, so please be gentle if the concept seems ridiculous, I rarely tell anyone that I write fiction, much less what about-- is about someone who is dead, has been murdered, but for several reasons cannot die and go on to whatever is next, so he goes on living as his body is dissolving and losing function around him. But at the same time, he is trying to stop his sister who murdered him from obtaining god-like powers and destroying the world as he knows it, and as his physical functions cease and degrade they are replaced by power and energy and abilities that he doesn't want or know how to use, but that erupts from him without his consent.

I have a notebook full of sketches that I did without thinking much about them, because the images and the story were in my head. I wish I could draw it as a graphic novel but I am simply not that good at art or at committing to a project, and I don't have the tools or the know-how to do manga/graphic novels. One of the sketches he is looking at his hands, which have disappeared and turned into a sort of illusory, ghostly fog shaped something like his limbs, and saying, "I don't want to be a god. I just want my hands back." Another he is crouched in the rain in front of his own empty grave, and the fog stuff has caused wings to burst forth from his back and cover him from the rain, and he's saying, "None of this is real. It can't be. I'm safe and warm somewhere in a padded room, not sheltering from the rain beneath wings that don't exist."

I don't know why I'm telling you all this when you just said you don't have time to read, except that after ignoring him for about two years, this character-- his name is Sirokai-- has been at the forefront of my mind again. I have made up my mind to write his story even though my insecurities tell me it will be bad, too weird, too derivative, nobody will like it, nobody will want to read it. I am going to write because you are a writer and I want to be like you.

Sorry for making you into the inspirational crip again-- but you inspire me because you write well about things others are afraid to write about, not because you write well while dying. Though, writing well while dying is pretty impressive, too.

Anyway, write your book, and please, stay with us at least enough to update us every few days that you are still here, stay until you can't stay any longer-- I will be here.

Meredith said...

First, I won't drift off. I only drift off blogs if the bloggers give me a reson - like offending me with revealing their affiliation to Jenny McCarthy or something. But definitely not because they post rarely - I can understand being busy, not having time, not having energy. These are things I experience sometimes, albeit on a smaller scale I guess.

As for dying: I know it sounds selfish and rude and offensibe, but I was aware (and scared like shit) of dying from a very, very early age. I live with a feeling that I'll die when I least expect it; that there is a probability that I can't go to university, write many things I'd like to write, lose my virginity, etc. It's constant, it's scary, it's truer than anything - but it doesn't prevent me from keeping a clear mind. For one thing I know: you can never predict the exact date unless you set it yourself. That's why you go on with the blog, am I right? Because while you ARE still there, you CAN do it. And that's one of the major things I appreciate in you and this blog.

I wish you'd hang in there at least until I do :-)

Cygnet said...

Beth,

When I first started reading your blog, almost 2 years ago, I was drawn to it because it was smart, honest, funny, well-written and rebellious. It's still all of those things. But now it's something more, too. As I've read, I've gotten to know you (and Linda, and Cheryl, and the others who comment). Friends across a very wide distance!! Now, the list of reasons why I read your blog is no longer headed up by smart, funny, well-written or rebellious. The number one reason is: 'This is Beth who I love and care so much about'.

Reading this blog - and being a friend to Elizabeth McClung - is not an experience one just "drifts away" from. It just isn't possible. You are stuck with me, and everybody else I'll wager, until you die, and even then, no matter how lost we may feel, I don't think anything could ever undo the powerful magic that's happened here, that you've created.

Miss Fairy Sparkle said...

Dear Elizabeth,

I look at your blog first thing, every day. You are one of the best people I have met for helping me not feel isolated. I have fought through accusations, illness, no diagnosis, medical professionals who have treated me very badly, church experiences that I would not wish on anyone, an abusive marriage that left me eventually homeless and symptoms that are weird to watch and without a label to explain. I can go from being able to stand, talk, and function to collapsed in a heap, breathing badly and about to roll into full body spasms and back in the space of hours. Thank you for helping me to stop questioning so hard - nobody could have gone through all that crap, and no one will believe my life story.

I think you know the gift you are going to leave behind is your words; there are stories that you are desperate to tell, and that is where your focus is going to be.

My dad died suddenly. He was sixty. No warning. I don't know if being shown you are in the waiting room before you go is any easier or harder. But, know this -he never got to achieve all he wanted to do, but he was noted for achieving SO much. The hard thing is you don't know what legacy you will leave behind - I think dad would have been astonished the number of life lessons he taught us. The story of his life will live on.
I know it's hard trusting that people will continue to tell your story after you die, but you might reach more people than you could possibly imagine.
I talk about you too to my friends.

xxxxxxxxxxxxx

FridaWrites said...

I love you, Elizabeth; you'll be very missed. In the meantime, I am visiting here every day. Don't worry that I'll wander off. You've made life much easier for me; your life is a precious gift.

With your time so limited, yes, by all means post less often if you need to or shorter posts if you need to. I will be here to read them, but don't worry about your readers if you have inclination to work on other projects and spend time with Linda.

Agnostic or whatever I am lately, the idea of missing you and other friends sure makes me hope for an afterlife to meet again.

Devi said...

Blog as much or as little as you can and want to. I'll read. I know I'm bad about commenting, but I read and I care.

You know... it would probably be vastly inappropriate to say something along the lines of "I'm sorry you're dying," but... I really am sorry/saddened/all kinds of emotions. I know there isn't such a thing as the right not to die in this world, but it just feels so unfair that a person like you, someone who has so much to say, so much to live, is going through what you're going through. Kinda makes me understand why people lose their faith in a just God (I still believe in God, but that's beside the point).

I'd want to read that book too.

Amanda said...

Oh! I just received a beautiful card and wanted to express my graditude.

Thank you so much!

kneeded gain said...

Elizabeth,

I love your life and value all you have given me through your blog and the active living and dying you are doing.

Wish you Peace and send both of you all my love

Bran

retiredwaif.com said...

Hmmm.

This is a place for supportive comments.

This is not the place for this. I should email this to you. But I'm not going to, because otherwise I won't send it.

Elizabeth, if anything in your blog had given me the impression that you'd seen ONE DECENT NEUROLOGIST then I might go along with you on the "oh, well" thing about coming to the states. Or looking into further medical options. But you haven't. I ran a search on your blog. Not. One. Decent. Neuro.

Are you really telling me you don't have it in you to get your stack of medical records together and trek it down here? Or wherever? Why? Because it might leave Linda with debt? Is that really what it's come to? This is what we're afraid of? Debt?

If you're too goddamn tired, fine. I get it. I might be too when it's my turn. OK. In the end, it might just be a matter of "why am I going to drive myself batshit insane with tests and other such bullshit during my remaining time?" And I GET that.

But I'm not going to write you some comment blithely sending you off like a lighter held up at a concert. Fuck that. At least one person needed to be bitch enough to say that you really should be giving this a bit more of a try. Both of you.

Now, I fully expect to be blocked out of your blog, or hear angry responses about how could I be so "unsupportive" from the many who've posted some beautiful things as comments to this post. And I can't deny that that would hurt.

But Jesus, Elizabeth, woman up. Fight with someone worth fighting with, not some bitch that doesn't want to work with people with fibro. Fight to get that damn conversion disorder diagnosis off your record and get some treatment.

Or not. I love you either way. Really.

I'm sure I'll regret this, but I'm posting it anyway.

rachelcreative said...

Dear Beth

Thank you for your letter.

I can't tell you how much reading it, how much hearing you, means to me.

I'm scared too. Scared of not saying the right things at the right time. But as long as you're willing, I'll keep trying.

I would be delighted to have you write your book. Whatever effect that takes on how often you can blog is fine by me.

I'd like to keep saying things (either on comments or perhaps email) and sending you cards but I don't want you to feel you have to respond to everything or say thank you each time. Because you don't. Because I KNOW you care. Because I don't do it for a thank you - I do it so you know I care too. So you know you're being thought about in kind regard.

I don't know if there's anything I can do to help with the book in the time we have (me being a bit on the slow side!). But if I can I will. Proof reading maybe? Book cover maybe? Maybe even an illustration or photograph or two? I don't know.

Maybe when you think you could do with a hand you might think I am one person who fits the bill and I hope you'll ask - or rather tell me ;o)

I don't know how you write but maybe emailing parts of your book might help you to do the work on it? I'd be up for being on that email list.

I'll sign off for now.

Thank you for writing this letter. I'm so proud to have read it and call you my friend.

Rachel

Anna said...

Hi again,
I really agree with "ANONYMOUS" your blog is a "book". I've been thinking about it while I've read it. Especially,"the disability" part, and the posts on how others relate to it, like caregivers. I think your thoughts about becoming ill,disability and dying "should" be made in to a book and people working as for example caregivers should read it.

A scary thought,witch I've had as a feeling, many times. This is it. This is the last call. There will be no more seccond chances. For me the feeling has turned out to be just a feeling so far. There's always been a backup-plan.

So I haven't been there myself yet. But I have been around.....not doing very well at most times...

From what I've seen, my thoughts are, when there is acceptance its not bad. When one has had time to come to terms with it, it is not bad. When everythig goes to fast, when you haven't finished "tasks" or made arrangements, it's not easy. Somebody said to me, about their son who died of cancer. It ws to quick, he hardly grasped that he was dying. We knew that he had 'severe' cancer we just thought it would take some time and give us a chance to understand it.

I think of that and I worry that I myself whenever my dying happens won't be able to accept it in time to have the 'not bad'.

On posting. I hope that you will take time doing what YOU really want, but posting "I'm Ok" sounded like a good idea:)

Thanks for sharing
Anna.

ps. If you get there before me, could you check out heaven and tell us what it's like.)

Elizabeth McClung said...

Retiredwaif: Why would I block you or hate you, it made me laugh. Yeah, I am currently collecting the needed data to see a neurologist. The problem is that the current Neuro and mentor refuse to release the original nerve conduction tests, so I have to file individually for them. Once I have that and my MRI's and my test results I will go see a competent neuro person (and make a complaint on mine which will automatically mean I can't recieve care from them).

I also need to see what my GP needs specifically and maybe find a neuro person who will write what I need as well. That I am going to do because well, every single other specialist including the heart specialist and the ER have said autonomic failure, the Neuro has SAID it but won't put it in writing. Until Neuro puts it in writing, I can't get any treatment. So yes, I am working slowly on that. But no, there is no, I'm jumping on a plane and seeing one today becuase without those test results (the two nerve conductions for sure), there is no baseline for neuropathy progression. And without the write-ups from the there is no evidence for seizures, heart erratics by autonomic failure and vagovascular failure by automonic failure.

Actually the conversion stuff is mostly off the chart; they admit peripheral neuropathy, they admit autonomic failure (they just won't admit it is central), they admit othostatic hypotension. But they still think there is SOME conversion AFTER all of that. Err whatever. We are also trying to get a respirologist, who can order a oxygen % count, as well as getting the records from the hospital which show the % there.

Then, if they think of a treatment, yeah, I'll try it.

But even though we have been working for 6 weeks to get that info it will take another several weeks to at least two months to compile it. This IS Canada.

I will not fight more here; and no, I am NOT flying to the mayo so that Linda can spend years in debt. I will go to someone in Seattle.

Because autonomic failure of the central nervous system was actually first documented in 1900 - so 105 years. There are four kinds, one has definately been eliminated (POTS), one has demential and leads to the next kind, and the other two just kill ya. So, there is only SO much I am going to pay for old information. New info, like explaining the autoimmune antibodies at 20 times the amount or the axons dying, that would be worth some money.

But for example, in trying to get a portable oxygen concentrator today the conversation went like this:

O2 Guy: "So what Respirologist does she have."

Linda: Sigh "She doesn't have one."

O2 Guy: "Has she requested one."

Linda: "Yes."

O2 Guy: "And you say the doctor has SEEN the purple and blue fingers and put her on oxygen himself."

Linda: "Yes."

O2 Guy: "But hasn't sent her to a respirologist?"

Linda: "Yes."

O2 Guy: "Well, here are the names of some respirolgists..."

Me and Linda: "Can you book an appointment with the GP once he gets back from THIS vacation? We will ask for the referral to the respirologist then. If we get the respirologist to name unknown or autonomic failure, we can go ahead for funding for the concentrator; and we don't need the neurologist."

No one really believes the Conversion Disorder thing, my GP doesn't (I asked) nor do any of the other specialists. Nor really do they much, it is just they don't know what the fuck it is. And putting down, "We don't know what the fuck to do" isn't what one of the few neurologists in town does, they go, "You have stress" or "You have Y"

And sadly, money IS a factor. We are only getting our PREAPPROVED Blue Cross bed tomorrow becuase we are borrowing the $1000 that blue cross says we need to pay up front for the mattress and then they will pay us back. There is no golden money machine; that sort of ran out after the $15,000 of medical equipment we bought, in the last 12 months. So unless you know of some source of thousands or unless you honestly have some secret diagnosis - I would actually rather die than leave Linda $10,000 or $15,000 in debt.....to confirm that I'm going to die.

Until then I will work with the means I have to do what is feasible to avoid that. As I have up this point.

But it did make me laugh.

Tammy said...

Write your book. Do what you need. Spend less time here, but know I am waiting and will be here for you whenever you need it. I won't drift away. I'm along for the ride, no matter how heart wrenching it is some days.

Write your book. You need it. Write a few post a week, or even one. Just let us know how you are doing occasionally, or I will worry. Spend as much time with Linda as you possibly can, not worrying if you have an in depth post on your blog. Spend BOTH of your weekend days with Linda.
Write your book, and know I'm cheering for you at the end of each paragraph, and know I will be here every day, even if you don't post.

Elizabeth McClung said...

I suppose I should point to everyone that a) I am still actually ALIVE and um, I don' remember what B is. Oh yeah, that I haven't had to deal with a significant death in my life either so we can all do that together. But maybe the repirologist CAN figure out a way for me to breath without oxygen? Once I get to see them, in like 8 months. If GP will remember to do the referral this time.

Elizabeth McClung said...

Okay, what I am getting is that 1) I will work on the book 2) I will continue to blog as frequently as is reasonable and 3) Y'all got to PACE yourself. I appreciate it, and I really do but this was called Letter #1 for a reason. Meaning there might be, who knows, up to #10 because as things get MORE real, I will probably have further emotional insights or things I want to talk about. I figure if people can go on about pregnancy for nine months and about the birth, then why not examine death in the same way; as I feel it moving inside me, as I give it a name. Haha. (see, I'm still sick in MANY ways).

A Bear in the Woods said...

I would just like to know how you are doing, even if it's just a few words.
I think that the work you are doing is really important, that you witness to your life, with all that entails.
You're constructing a narrative that most don't want to hear, but for those who will hear, it will enlarge their life.

yanub said...

Elizabeth, for pete's sake. You won't leave Linda in debt. You talk about this being a community. Well, we are a community. Let us help.

Up there in the land of socialized medicine, I reckon y'all don't have fundraisers every weekend to pay off someone's medical bills. But here in the land of dog-eat-dog capitalism, that is exactly what we do. Every weekend, someone is serving up BBQ for $5 a plate to benefit someone who had not enough insurance or no insurance.

There's no reason at all we can't have an Elizabeth McClung BBQ benefit. We just need someone at the door to handle taking donations. We'll all be responsible for dishing up our own BBQ. Cheryl or Maggie would be ideal to collect the funds. You and Linda shouldn't have to worry about it at all.

So, get the testing done, the travel done, whatever you need done. And let us have a benefit BBQ for you. Please.

Elizabeth McClung said...

Linda says I shouldn't respond to everyone but that seem rude so.

Yanub: Oh good, I actually went there today. But I didn't leave a message because today was another hell day (plus my nose is bleeding from my two seizures this morning); I tell, this is a very tough town to die in; I have told by the Victoria Hospice that they won't come unless the Care Nurse tells them to; my care nurse told me that going on oxygen 24/7 isn't that important and neither are strokes and don't tell her but tell my GP. I told the hospice and they said, Oh, but she refers us after coming to your place. I said, she doesn't want to come, she says, go to your GP. They then tried to send me to the cancer society. Linda and I phone met to both say, "Can we do this again, every day for months?" And "Why is it that the only people who seem to give a damn in this town are those selling you equipment?"

Defying Gravity: Did the postcard come yet, I will be very vexed at the postal system if it didn't. Thanks, now I have something to look forward to.

Isis: That's why I went to the Teen section becuase it was about trying to figure out your identity and when I got disabled, that was the only place that seemed to cover it and I think that is where I want to write.

I like writing longer posts, I guess shorter posts will take more editing - as the BBC ones are 1,000 words and I have to edit and edit them to get them that short - because the editors at the BBC think that people on the internet don't have an attention span long enough to read more than five paragraphs. I tend to think otherwise (how is the internet suppose to replace books as predicted if we are reduced to post-it notes for goodness sakes!)

Missnomered: Well, I'll post more often than that, to be sure, or maybe later I won't I can't say. But you just comment when you want to - that's what I was trying to say, please don't feel the guilts, I just wanted, as this was a community to get a sense of what people felt was okay to do. And thanks for letting me know.

I DO want to send you a postcard at camp - can you email me at mpshiel@hotmail.com with Postcard and tell me what you like - anime girls, anime boys, anime art, classical art or grab bag! I understand the need for caution in putting out your address.

Tom P.: That's fair, if people are checking by becuase they are concerned they I should put up a "Had a lot of tests today" or "Can't get out of bed today, so will try and post tomorrow" kind of one liner?

Carapace: Hey, I've had no one close to me die either (except my Grandfather). If you think there are things that could be done, let me know, I mean RetiredWaif did. It might be something I am trying. The problem is that medicine here is SLOW, and there isn't a big black market for like, meds for spectrum diseases (sorry, I just lost a whole chunk of language, wierd).

I'm glad that you find what I write easy to read and honestly before I was pretty into the fencing thing a lot and women's rights and wrote a bit more academic. Now, I am more, "This is what happened" and "This is why I think they are an idiot!"

Abi: Great minds think alike! I agree, I need to start soon on my book, get a notebook and start making notes for the characters and the plot outline and then get writing. Of course, if I can do that and blog regularly too that would be peaches, which is why I want to try to do it now, while I still HAVE some energy and such.

I will need a proofreader as you and probably everyone here has noticed that even with edits and spellcheck I can't stop the errors - I have dyslexia and it drives me crazy that I can't see the errors even when people tell me they are there.

Gosh, how retro of me - what is a Twitterfeed? - ah yes, I finally remembered, I am supposed to ask you (my curiosity) how you scored a boyfriend 35 miles away when at a girls school? Brother of classmate?

Gaina: Thanks for your video offer and one day when my brain can understand that paragraph, I will figure out if I can take you up on it. I do admit that I have written a LOT and if I wanted to edit it perhaps a book could be made of it; though I always wonder, what is the climax, (I think we might guess the conclusion and resolution)?

Well, I AM going out boxing tonight becuase just becuase I can't fiddle or fix one system doesn't mean I can't keep trying with others - and by now the extreme pain from the 10K is down enough to have NEW extreme pain - from boxing - so yeah, 12 months.

Sly Civilian: Thanks, I didn't really say anything new except that what my limitations were so I think regular readers are not like, "Oh my, I had no idea!" But it is still hard TO write.

Ruth: I was thinking of you and going to email you so I am glad to hear the situation was fixed becuase I was going to make that call. I'm glad you got a postcard too (Oh yes, now I remember, the um...surf one)

Cheryl: Well, yeah; you have been of great help with me to help me keep going when I haven't been able to otherwise. When, after a seizure I was on the floor, you helped me do postcard (on the floor) or last week, where it was either postcards or go insane, with you there, you understand my need to DO the cards, to have something tangible.

Well, I think it will be a bit more bitter for me, but I don't know so we will have to see as honstly the dark is quite comfortable - it is the people always slapping me around going, "Breathe! Breathe!" that get sort of distracting!

Penny Richards: Oh, that's profound. Very sounds of silence. It is true that silence usually means something. But I think other people are right and one sentence with the silence would help people AND help me so a win/win.

I would very much like your list because I gave the librarian a list and I would like to see if there are any missing (a good book found is a treasure!).

Thanks for telling me about Hassiba Boulmerka - I did tell them that Harriet (the rest eludes me this moment) of Accident of Nature had died and asked they display the book, as they would if Rosa Parks had written a childrens book.

Jane B: I'm not going to once a week, but I would like to TRY, that's all I promised, to TRY and I want to do that with this book. It is a privilage to know you too and regarding one way journeys the one thing I have learned is that disability and disease is as individual as we are - take 20 people with MS and there will be 20 different manifestations. Even in adversity or when our body betrays us, we are all unique. Odd that.

Maia: Thank you for letting me know, I WANT to write because I want to be part of a community, even if I never meet face to face, still a community. And besides, I like to write. I said when I grew up I was going to be a writer.

Lene: Thanks, I decided I'm going to be a SERIOUS writer now. Haha. But seriously (I can't stop myself!), I will try to get regular post and regular lengths, just try and get some priorities and see how it works and then maybe try it two or three times until I get the mix of time dedicated correct.

Neil: I think I would be really worried about having a colonoscopy, honestly. Death is abstract, a hose shoved up your butt is ALL TOO REAL!

Well, I would like to communicate more and I appreciate the communication we do have. So I will try to post as regularly as I can.

Spend time on Beth? Slow down, I thought I was making BETTER priorities.

Em: Yeah, I want one last big dance, if I can. a Creative work that hits it, that has all my passion sealed inside (these are going to be some very scared and scarred teens who finish this book!).

I am glad that the time matters or has mattered, and I hope that everything works out for everyone, myself included. But sometimes it doesn't. Thanks.

Shiva: You blunt? No! (That's joking). I think that it is good to be evocative, I remember crying when I read of the death in 84 Charing Cross road of the bookseller - and that was a character. I am NOT a character, so I have the whole human unpridicability. I am glad that you feel something. I guess I am glad I feel something too.

Well, since I think I am supposed to be buried after cremation in a garden or something I hope I keep on giving, in my own morbid fertilizer way.

Don't worry, Linda knows ALL my passwords!

sarah said...

hey lady,
I haven't commented for awhile, but I always read your blog everyday.

i suspect most ppl, like myself, use a rss reader to track your blog, so there is no need to worry about ppl drifting off and forgetting if your posting gets sporadic.

i would suggest you consider podcasting as a way to get your thoughts down, update your readers, and save your strength. the way i read your blog is very stream of concious, and I think it would be very well suited to either a podcast or even posting a video. that way it would be easier for all of us to stay connected to you and lessen some of the physical burden of daily blogging. it would also be cool to hear your actual voice, not just the voice-over in my head.
cripes woman, I would be thrilled to transcribe the posts for you if it was important to have the written word!!! and I wouldn't be the only one.

all that said, I would also be honored to collaborate with you on your blog, be it a guest post on a topic you would like further exploration, another "homework assignment" like you've done before, whatever.

but I wouldn't worry about losing readers, I think the nature of your blog compels peeps to read because you've established a level of intimacy, and that won't go away simply b/c you post less.

Elizabeth McClung said...

Wendyrn: I want to write a book. And I'm glad you want to read it. You really have read through a lot of changes, hardly the same person who first started to pester Mr. Ho with "Give me a lesson!" am I. Or maybe still too much the same.

Amanda: See, this is sad because you are in a blank spot and STILL you should have gotten another postcard so if your address is the same I will DEFINATELY get that taken care of. Hmmm, I have the sheet in front of me and you SHOULD have gotten a postcard - it is very strange as you aren't on the sent list but your sticker is gone- where has it gone, it is not on the page. I will try again, please let me know if either turn up?

Thank you for taking the time to read the blog, lurking is good, I am cool with that.

Still obsessed you only got one postcard. Arg! did you move?

Anon: Thanks, Yes, I do seem to have focus issues, which is why I don't know HOW to make this into a book, Screw Bronze, the book, what do I keep in, what do I edit out?

Thanks for letting me know the difference my words have made. I will keep on making them as long as the brain lets me. AND WRITE A BOOK! (if the brain lets me).

Christina: Well there is enough and enough, you know. Like Enough of your favorite food is rather different than enough of LIVER so I will try for enough of the fav.

Yeah, that's true, postcards, the book, the blog - I do WRITE a lot. Cool! I am glad you are writing again.

God, I would give a lot to change the attitudes in Victoria - you know you THINK that a hospice for pallitive care would have a person answer the phone who CARES and doesn't try to keep getting rid of you - sort of how you would THINK that your Home Care Nurse in VIHA would not say, "Stroke, well, you sound okay to me in your voice" (I said, well, most days I'm not" - her response, "Don't see what that has to do with me" - GEE, you are my NURSE who is supposed to determine my level and need of CARE and you don't see what blue fingers and a stroke have to DO WITH YOU?) - and told to "take it to your GP" - ARG! Victoria!!!!! Sorry, I think it is out of my system for now!

Okay, now a couple readers for the book. And I am bookmarked, that is cool too! I am glad, because I actually try to be honest, I try to be open and run myself down and call myself and idiot when I am one and preen and dance in front of the mirror when pleased with myself (well figurative). Being openly.....human.

Collette: Thank you again, I am glad you comment. It makes me smile. I like doing the cards, and I like thinking about people getting them. It is like a mystery that I will often never know the answer to. But that's okay right, life needs a bit of mystery.

I want, no matter what happens to be true to myself, to maintain my values and so if you see me getting off that - give me a verbal slapping - that is how you can help me - or support me when I lie on stony ground. Thank you for your offer.

Nancy: I have thought of trying to turn it into a book but I have never really figured out how to edit it plus I would lose all the squirrel movies! And how much would it cost to make colour pictures for the pages - well except for many of the goth ones, at least I own the copyright! But yeah, I have thought that far. Hmmmm, the comments too, I hadn't thought of that, but having where people in comments are talking to each other and not even to me anymore is really good and shows how it is a community, or at least a safe space.

Veralidaine: I think I will remember you, I mean, the Cat Bus right? See, as long as I can remember that, I can remember you.

Yes, let us laugh about this in a year, becuase today has been totally ug! Truthfully, I don't do well with loss either, which is why I stay focused on the "Must come up with new trick" and "Must try out new sport or go after new windmill" instead of "Shit! What the FUCK is happening to me!" (last one is rather depressing!).

I am glad after all the work you have done to bring Sirokai to life, in print, writing is a sucky and hard gig but there are rewards - making something out of nothing. Something that only you made. I really hope it goes well and I am here to see how it goes.

Miss Fairy Sparkle: On those first few sentences - ditto, I usually post comments every day and it is you and the other poeple here who keep me from naming my mugs and going a little round the bend.

Wow, except for the stand part, we could have the same thing - just becuase the medico don't know, doesn't mean IT AIN'T SO! (Wierd how similar we are, I hope this means Linda isn't about to bolt!)

Thanks, actually I don't know what difference I make (well, except when home care phone people go, "OH, it's YOU!" with that tone (I am not EVIL!)). And I am sorry your father passed so quickly but I am glad that in you his lessons live on. Linda and I talk about you and all the people on here all the time. That may make people uncomfortable but it like hear what this relative or that friend is doing. I believe that we are all one family here, some more verbal than others, some with different opinions, well, that's family. I don't really know much about blood family so this is mine.

Meredith: Does that mean if I go Jenny Who? I get your loyalty? Yeah, that is true, I blog because I still can, and so I do. And yeah, I will be taking time to write something bigger. Which I can still do!

I would love to stay around until you do, but I hope that isn't a "I'm planning on taking the quick trip!" cause dying is easy, living is hard. No matter how hard I have it, any mom whose raised kids on her own or anyone who is there over the years for another through thick and thin has had it harder; as have people with unipolar depression and a host of other illnesses. I just happen to be fast, furious and go BOOM!

Cygnet: Holy Stealth! You have been reading that long. Geez, I better start putting out the good china - I really had no idea. Thanks for what you say and honestly, the people here, even the ones I have never met I feel I "know" because thier words, written in comments, in the dozens count up as hundreds and then thousands of words until I know them. So I would miss that too. Well, that's pretty cool. And I feel very honored the way you talk about me.

Fridawrites: I'm not going THAT quick (I hope!!!), but I appreciate the statement AND I appreciate you visiting!

And just a little less often. And you think you think about an afterlife, what do I as a Christian who doesn't believe in Heaven or Hell hope for (mostly that I remembered to take back my library books! - oh stay focused, joking means that it is hard to write about). I don't want it to end, I don't think it is very fair and I know that sounds very four years old but hey, I don't think it is fair.

What comes next, well, if I CAN blog from there, I will. (Crematorium: The first post...) EWWW! Sorry, see, it is hard, so I make a joke.

Devi: I don't care that much about commenting, you are as much this family as anyone. Comment when you feel or need or want to commment, reading and being part of your life is more than most people get - and I get that from so many!

Good another reader. Well, I would like to live, even in the same reduced circumstances as now for 20 years, and I would TRY not to become redundant and instead reinvent myself every year or so. Yeah, well, if I had to choose between someone else and me, I choose me to go - it isn't fair, but it appears that someone has to do it. Keep safe the innocents.

Amanda: Oh, I hope this is the Amanda from before, and I hope you got a good card!

kneed Gain: Bran, thanks, I will live as much as possible and blog as much as possible and I hope still write that book. Thanks for letting me know. Thanks for writing.

RetiredWaif - hey you got a response already!

RachelCreative: Thank you? Oh it wasn't that nice to write or to send I think. Oh don't worry about that, say what you want and as long as no one says nasty things about each other here - that's been my only rule. It is only me that you can rage at or dish at, because, hey, it's my blog. Feel free to talk to the others, just no getting nasty!

Thanks, I will write and see how it goes and make adjustments as it goes. I would like us to keep corresponding, and I would like to keep sending you cards (I do send you postcards and things in the post don't I?)

Oh yeah, you'd be perfect when it comes to getting the cover right, I think. You certainly have enough cameras!

I'm proud to be called your friend too Rachel, and I hope you consider me one too (though I can be a wee bit moody like crazy ideas and rage at the injustice kind of moody). I will try to finish the book and edit it before I send it out.

Anna: Thanks, I have thought about pulling those parts out - I would hope in 5 or 10 years that specialists would be different, that caregivers would be different that the system would be a little less....system. But for Linda and her caregiving, how can I compare thee to a summer's day? Did I get that right?

I have to say, I haven't made it to acceptance. And I have begged to have people kill me but usually too busy actually passing out to be conscious of "this is it" - I think I am lucky that way.

How do you "understand" dying? I don't understand living? And I've been pondering that for a while. I've had a few "This is it" nights, but so far, so good. Also considering the ER makes me more tired, more exhausted it is always a fine line between the hospital or not.

I agree, I should post SOMETHING, and I hope that when the time comes for you (and from what you are saying the IT comes and goes), that it really is peaceful, or busy or like my grandfather, who died humming (I want to be so lucky).

THANK YOU for sharing - that was pretty personal, and I appreciate it.

Tammy: well I would be very upset if you drifted away so I am glad you won't. Geez, you're family, right? I will post as often as possible. Write the book - I get it, I sort of owe to you and others. Write the blog, and write a comment when I can't but do the book if at all possible becuase you are supporting MY DREAM. Right? Did I get it right that time? Thanks. My Dream.

Bear in the woods: thanks - and I think you are right - most DON'T want to hear it but maybe when they are ready, I dunno - would I have read this - I did, I read the Diving Bell and the Butterfly and then taught it because it made a difference to me.

Anonymous said...

Elizabeth,
Thank you so much for sharing your life with us. You are brilliant. Your outlook on everything from disabilities in Canada to sex toys has been mind expanding (and not in an LSD kind of way) and thought provoking. I promise you I will keep reading.
Hannah

Anonymous said...

Your blog is a tremendous accomplishment - witty, insightful, sometimes poignant and very often hilarious. I am with you to the end, no matter how sparse the posting. Be kind to yourself! AK

Neil said...

Oh, thank YOU, Beth! What a lovely, supportive comment. NOT!!!!

Seriously, the colonoscopy isn't scaring me as much s going two days without solid food in preparation. THEN on Sunday, I get to take two laxatives and an enema. On Monday morning, another enema, and then I have to hope I don't mess up a taxi going halfway across the city. I live next door to a hospital; hello, couldn't you do it at the General? Noooo, I have to get to the Pasqua, while trying not to leave a lasting impression for the taxi driver.

The biggest hope I have is that the damn equipment was properly sterilized after its last use. I do NOT want a phone call six years from now asking if I've had an AIDS test lately, and would I like to start getting them regularly, please?

Now, it seems to me that Saint Linda needs hugs right now as much as you do, dear Internet niece. So Zen hugs for BOTH of you, which you may convert to real hugs and a few gropes just for good measure.

I love you both, and I hope we're not going to get TOO morbid here. Just hoping you're around and able to post a sentence or two each day. Or more.

More hugs,
Neil

Now I'm off to buy the laxtive and enemas, amidst a tornado watch.

Laura said...

I am here like I promised you Beth. With my books being burned and "A letter on dying #1", I have been sent on an excruciating ride in the last 24 hours. You chose to send me encouraging words and suggestions, though depleted in energy and in pain. But this isn't about me, it's about you.

I echo what so many have said here in comments, Screw Bronze and comments should be made into a book. It is a too short chronicle of your life, yet an amazing tribute to the woman who makes up Elizabeth McClung.

As I wrote to you in an email on July 2, about achieving the original plan of teaching and making an impact upon the lives of people, well you have done that as can be attested to by the comments here. You have transcended the division of continents with your insight and words. You have opened your heart and bared your soul to us your readers. You have instigated us to think and sensitized us to discrimination. You have humored us and at the same time cajoled us into action. You have sent us on fantasy missions and helped us realize that some things are possible even though we thought it a flight of insanity. To say what you have done in one word,(oh no here it comes, that dreaded word) INSPIRED. You haven't inspired us because of your disability or your illness, but your ability to reach deep within us and draw us out. You have helped us aspire to become better, more understanding, compassionate, passionate human beings.

You encouraged me to become a vocal part of this community. But it is not a community, it is a family. Our souls have become linked together by a woman and her passions. Will we disperse when you are no longer? I don't know the answer to that. I do know that each of us will have an angel riding within our hearts and indelibly etched upon our souls. I personally have decided to have "Elizabeth's Wings" tattooed on my body as a way to start conversation about the person who "inspired" it and a personal reference to that person.

Ironically Beth, you have become a powerful ministry of the good and evil in this world. You have taught us to fight in our own way for the equality of all peoples. You have taught us to look inward at our own prejudices.

Personally Beth I don't want to give up any part of your blog as it stands. However, understanding the energy expended on it and the choice of you writing another book, I'll take abbreviated blogs however long or short that you make them. I do feel in accord with some others of this family that an "I'm ok" on some sort of daily work week schedule would be rather nice since I do worry about you considerably.

As this already sounds like an eulogy for which it is wholeheartedly not, I will go now. Keeping you in my prayers, my heart, and thoughts eternally. You have my support, I will continue to read, and if you need anything let me know, I'll try my best.

Mountains of hugs,
Laura

Maggie said...

Hey-Sorry I've been MIA. A bout of evening migraines has kept me a bit off kilter for the last few days. Keep an eye on your in box too as I tried to write you a message early this am, but I don't think it came through. I am going to try to recompose but the fine points may be lost.
Beth, I love you. Not in a converted girl love sort of way, but in a deep down gotta love you no matter what kinda way. We are adopted family and I'm glad Cheryl brought you and Linda into my life. You may never move onto true acceptance, but I want you to be at peace with your decisions, Linda, yourself, and your God. That doesn't mean I want you to stop being Beth, I just want you to do what you need to do to be the best you can be with the time you have left.
Hell, after 30 some odd years, my mom still hasn't accepted my Dad's death...she's still very angry about the whole thing. I wish you had 30 years to move on, but I don't know if we've got that kind of time left.

Sarah said...

hey elizabeth
i havent commented in a long time, but i am still reading. hope you got the postcard from me and Donimo. you post more often and with longer posts than any other blogger i have followed. i check your blog almost every day. to be honest, i dont usually make it through each post all the way because they are so long, but i at least skim them. i will be very sad when you are no longer able to blog, and also i think you can take a break or just write tiny notes without losing your dedicated readers. write on, elizabeth!

kathz said...

Please write in whatever way is right for you. I'll be reading.

Much love.

anabel said...

I didn't read all the comments so if this is redundant, so be it. I'm an on-again off-again reader/blogger. I've gotten something out of everything that I have read of yours. Blog when you can. Don't worry about how long or how often. I'll be checking. Write that book!

On another note: I'm sending some original anime art I got at the expo to you. I'll get the address from em. And please don't worry about a thank you note. I was so glad to find this small thing as a thank you for all you've given me through your blog. (that goth stuff all was so much fun) And you've gotten me curious about yuri anime so "Strawberry Panic" is coming next from net flix. See
your influence has spresd far and wide.

Wheelchair Dancer said...

I read by feed. Whenever, whatever. Live as only you can.

With love

WCD

Raccoon said...

I haven't left. I might not comment every day, but I'm not leaving.

Now that that's out of the way...

Like Jo, "even if you don't post every day, I will still be reading." Post when you can. Don't worry about when you can't.

Write your book. I know that I'd like to read it. Presumably it's going to be about the last 18 months?

Everyone, I tried to send postcards to a bunch of people while I was traveling last month. It's a huge amount of work, trying to find just the right postcard for a person, and then write something meaningful on it. That Beth did that repeatedly, and is still doing it, is amazing to me.

Beth, thank you. Thank you for being you. Thank you for including me, us, in your life.

Elizabeth McClung said...

Sarah: Hey you too. Okay, that's good that someone knows how to use the tech. Cause I don't.

It isn't quite that stream of consciousness, more an edited Swiftian style I perfer to think of it as. I will consider the podcast thing. Except I hate to hear myself on tape (does anyone like to hear themselves?)

I have an odd voice which goes from deep throat (the thryoid) to lisping and slurred (the TIA's), so I am a little self conscious; I am SURE your imagined voice is better - unless it is like Dolly Parton.

Thanks, I try to keep thing intimate. so I am glad that works.

Hannah: Thanks, I hope that I will keep challenging myself first of all to find out more, to seek the envelope and keep the bullshit detector on high alert (and test more sex toys!).

AK: Thanks, I will try to keep the posting regular, but thank you and I will try to take time off as well for writing the BOOK, and postcards!

Neil: That was really good, and funny, and yes, also not funny - sorry. On the bright side, as bad as an enima is getting one from a nurse who is using your TV to watch soaps and does the old jamming it up there technique (I actually passed out once), well, I didn't feel the love! So, yeah, this whole Colonoscopy buzz this year seems to disturb me, why must all doctors do a colonoscopy this year, is there a prize at the end at the doctor's conference?

Zen hugs for both of you (particularly you) and I am not going to go from 2000 words a day to 20, that will be a sort of progressive thing, just wanted to make sure everything was okay with everyone.

"Sorry doc, my enema was sucked up in a tornado" is a pretty interesting excuse!

Laura: thank you for posting. I'm glad you did. Well, it may be a short chronicle to you but I think it is like 500+ posts so, getting up there (the Encylopedia of Screw Bronze?).

I have to say I like ASPIRE better than inspire. I want to aspire, and if I helped anyone aspire, then that is something good, to be proud of. Inspire to me means, "Okay, you're inspired, so what are you going to do" while Aspire is about being MORE.

I like to think of it as a family, because they chose me, which includes you. Um, not sure what to say about the tattoo, except I hear the breasts are not so good as it ends up looking like something else entirely in 20 years. I personally think you should find some way to honor yourself and what you have achieved by being yourself against adversity. Or we could comprimise with two tattoos?

Oh no! Not good and evil! Well, I have strong opinions but so do a lot of readers, that is what makes it fun.

Thanks for letting me know, I think the short message saying what is up is sensable and sensitive too. So I will do that. Thanks, and thanks again for posting.

Maggie: What worries me is WHO are you sending my emails to? I am very sorry you have migraines, I HOPE you have explained to Ai about quiet and leaving you in a dark room?

Darn: No toaster for me - it isn't to late, you can love me both ways! Oh okay, I'll take your love and I am glad you are in my life (but I keep waiting to get you alone so I can grill you and crack you open, except.....I keep passing out!)

I understand, I think and I will be Beth, and I will be scared and do what I feel is right anyway. I will strive to make my words mean something when I can, protect those innocent in mind and experience, and live AND die honestly (which is probably a lot of whining!).

30 years! How about 3! I was hoping for 18 months but 3 would be great!

Sarah: um thanks, I am sorry to hear my writing didn't grip you enough, now I am going to TRY HARDER! I am going to write LONGER and then do it so well you will HAVE TO READ TO THE END! HAHA!

Oh, I am glad you are home, now I can send of that thing for you two.

Kathz: Thanks, you've really stayed the course. Thank you.

Anabel: Well, thanks, I hope when you read that it means something for you and that I will be here for you to come back to when you need or want to read. I am not quitting, just cutting back like 10% for now.

Horaay! Anime Art! I hope you had fund at the expo, will there be PICTURES - goth girls! WEll hang in for the first several episodes in Strawberry panic, it does get less soap opera and kissing every 5 minutes - and PLEASE get the subbed and not dubbed version (of if you can't tell me and I will send you one!).

Wheelchair dancer: I live in Real time, I write in real time, there is no distance here. The book will be my distance.

Thanks

Raccoon: I am glad you commented, I was concerned that you might be sick or not okay.

I will try to be consistant, more so than the rest of things in my life - and try to figure out priorities, it make take a few tries.

Yes, the last 18 months in one little spitfire of a 17 year old main character. So yeah, looking forward to that.

Thank you for your postcards, it was amazing that you did so much and had time to send me postcards - thank you so much.

I think I would have been a lot poorer, particularly in certain arts of corsetry without you in my life (tongue in cheek!)

Anonymous said...

Hey

Ok, so Linda's right, you really *don't* have to reply to every comment! I wasn't expecting a reply to mine. But as you did... No, the postcard hasn't arrived. But the post here can be a bit temperamental, so don't get too vexed yet!

Defying Gravity

tornwordo said...

I think dancing on the edge is a nice way to approach this. Whenever, however, I'll be reading. And praying (even though I know you hate that, lol).

Heather said...

I'm slow to comment lately but I'm still reading every morning.

Part of the comment slowness is that I'd rather you didn't use your energy to respond to every comment I make. I do this sort of mental translation: one less comment from me, that's one more sticker on a postcard or one more sentence or one more phone call. Yes I know: responding is something you choose to do, something that brings you pleasure. And yes I acknowledge my inner bossiness.

But the point: long posts, short posts, no posts, comment responses, no comment responses. All good. You are dancing on the edge of the cliff: use your energy to do what makes YOU happiest.

Joan K said...

I don't often comment but I read your blog daily. I'll keep reading, whenever you post. I'm not going anywhere.

I know your blog posts will be less frequent. Do what you need to do, spend your time doing things you want to do.

You are a great writer and we are fortunate to be able to read your writing. I am sure whatever you write will benefit people in the future. Your tenacity and ability to face truths clearly is a rare thing. Even before you mentioned it I've thought you could write a book I would look forward to reading.

Write what you can when you can. Make the choices that are best for you. It sounds trite but I mean this truly. Everything you write, everything you share is a gift.

Marla said...

I can barely get through this Eliz. It is heart breaking. You are such a sweetheart.

Maizie got her postcard and loves it.

We are sending you something soon.

With love,
Marla

sarah said...

hey elizabeth
i reread my earlier comment and realized it sounded rude but was not meant that way-- just to clarify-- i skip parts of your posts just because i don't have enough time to read them all! it wasnt meant to be a negative comment about your writing at all! i am a fan!!

Fred Farnsworth said...

I also want to let you know I've received two postcards from you in the last week or so - thanks very much! They (and the one from Japan) are sitting on my noticeboard, in amongst a whole lot of notes for my thesis, and I can see them when I look up from my computer. I was particularly thrilled to get one of the pressed flower stickers that you mentioned in another post that another reader sent to you (so thanks to that reader, too!).