Sunday, October 26, 2008

Me, thee and what's next.

I suppose I shouldn’t blog tired and in pain, but then I wouldn’t blog at all. I’ve talked to a few people and they seem to feel that people just don’t “get it.” So here it is, I do not have a chronic condition, which is one which is fairly stable or stays somewhat the same with dips and remissions.

I have a degenerative and terminal condition, I have several secondary conditions of which a couple if left untreated, which they seem to be, are terminal as well. I have several conditions which are conditions from the secondary conditions (tri-conditions?). Any of these conditions would be considered BY ITSELF, a lifetime disability. We don’t really talk about these because they are so unimportant to the main fact; that I continue to degenerate without a single remission. Yes, I have some drugs which hide these effects, or minimize them showing, but do not slow their degeneration.

I have reached the part where I have a path in front of me and I have to make choices, which is somewhat ironic because I have dementia. Remember that people with Alzheimer’s have dementia for a couple years sometimes before being found out. The woman that cries because no one will give her toast because she can’t remember eating the piece she had 2 minutes ago, is looking at people eating toast, making deductions (“They have toast, but I don’t!”) and acting on those deductions. Just because I am intelligent doesn’t mean there aren’t day I don’t I know what year it is, or day, or what city I am in or that I don’t need to be watched to ensure I don’t wander off.

I don’t know how long the path is, or where it goes but I know from what I’ve seen that it isn’t that great after the first bits, and probably has a few monsters along it. Linda and others are saying that I’ve lived enough of my life for other people and maybe it is time to live for me, for them. I think near the start of the year I asked for a family, a genuine family because mine has left me, and people responded. I guess some thought it was a bit like getting a bunny or goldfish because some have drifted off, their AB lives moving too fast to accommodate me, or they keep their distance, which is pretty much I expect from family to be honest. Some others, took that seriously. Some people wanted to be there for me, and have been.

I am alone, I am in pain, I am frightened. I have no medical assistance even to the level of painkillers which I got from a walk in clinic. I spend most of my day TRYING to get a better quality of life so telling me what I “should” be doing, unless you happen to work with Canadian paperwork (remember it took a YEAR, and several 14 page documents for them to determine I would never work again, am likely terminal and without income and due to a lapse of an agreement with the UK, would not be helped by the Canadian Government), please stop telling me how I can instantly improve my life. Because I am tired of failing everyone by not being exciting enough or not in pain enough, or not improving enough.

You want to help me, convince me that I am not alone. No, not that you will continue to watch while I die but that you will hold my head, that you will hold my hand, in one way another. I know that in the next few months with US thanksgiving and Xmas that people will be too busy to care anymore, they have their ‘real’ families, and real friends and the online film of Elizabeth’s Death just can’t compete. First off, I do not want a single Xmas card. I don’t keep Christmas. And if you need to WAIT in order to show you care about someone, then I have failed. I am in my own way ruthless because what I demand, not ask, demand from my friends and family is CHANGE. It is what I demand from myself. And if you have a habit of only showing that you give a damn about other people at Xmas, and you try to include me in that, it will be returned to sender. Because, what, you can’t look back over the last week and see a human being in emotional, physical and every other kind of anguish? There are two types of people, there are those who act (a.k.a. you change how you act!) or those who keep walking.

I started the postcard project because I wanted to believe that humans could care, would care about other people if they were just given a chance. Some, about 4 to 5% met that challenge. About 50% we never heard from. And because I don’t know which person NEEDS those postcards, I just keep sending. It isn’t my purpose to judge. Except now I don’t have the energy to continue. And I as I have said before HELP! HELP! HELP ME! MY GOD HELP ME!!!!! Apparently some might have missed the earlier notice. I haven’t received a single e-card or the like.

I guess, it isn’t just the Christians who say they will think of you and then stay away. I am in the equivalent of a burning building. And I’m terrified. Don’t you get that. I don’t have head control some days, I pass out frequently, I don’t have hand control. And I am here, past midnight, spending all the time since I got up writing to my friends. Because you are my friends right?

See, the point of this blog is that I am not only just like you, that I AM you – I got a disease that ANY of you could get, I am where any of you could be and I am being treated like ANY OF YOU COULD and will be. And how you treat me and the others who come across your radar, remember because that is how you will be treated. But now, while you are AB, your life, like other’s lives fare from the reality of where I am, will always be urgent. And yes, I know I come behind the milk you just ran out of, and the shopping list that needs to be done.

I can’t return all of the 20 emails, hate mails and demands every day. I try, but I can’t always, often. Sometimes because I am on the floor making the funny dance. Sometimes because I am staring into space. This is how my world ends. I have kept every promise that I have made and sent out a card to everyone who requested it; that will probably change soon, just out of physical need. We did, the three of us, 128 postcards in 9 days, and excluding one person received back, um, 4 (see 4%!). It cost us about $500. That’s the plain reality. I have no money, and I don’t spend it, what allowance I get I spend on others.

Okay, so my life isn’t how I planned it. I have a terminal disease just when I was going to be the bee’s knees, I had won award, I was doing not bad in national sports and hoped to move up to mid-rank in the US and Canada in my sport in the elite level. Sometimes you TAKE the road less traveled and sometimes it comes for you.

Sure, I would love to spend my time as an AB again, doing a full time job and having fun and reading 5-10 books a week, it was fun, it was exciting, it was disappointing, it was LIFE. Right now I have life too, but one that seems out of synch with everyone else. One where the people I get along the most with are those who are out of synch WITH me.

Do you know the only times I am truly at peace? It is when I am racing. Because there is simply no what anyone could reach me to save me in time if my heart went. And I have two choices, to push, and finish or to quit, and I won’t quit. So I either finish or die. Every time I go out, I know that is my choice: finish or die. What else is worth five days of pain so bad I can’t sleep for two days? But here, with everyone telling me what I need to be doing, what I should be doing, I am confused, I am often incapable, I am this girl. And that isn't a metaphor, I am THAT vulnerable, I am that pleading for someone to come and help me, because I need to be held. If not more.

I want a life where there is fun again. I haven’t really smiled in probably a week. I want to smile again, I want my life again. I want to LIVE and know the joy of living, and yes, dealing with the consequences. But I can’t do if I am spending so much time recording my best two hours in a week and taking photos and then thinly spreading them out over the rest of the week in my blogs. I can't LIVE if I am lying to everyone about okay my health is because they don’t want to deal with it. Okay, I am very ill, I can’t move by myself often. And that is with my pain masking drugs. I think Linda describes it on her blog. I wish it was a different way, I wish I bounded out of bed looking forward to a new day, a new day of action. Truth is I use dialogue as a way to focus against the pain and to stop myself from passing out. I want to be the impish girl who is trying to make the world conform to her, but I gave up that illusion long ago. Without help, and I mean people help, that isn’t going to happen. In fact, I can say, “Suck it up, Buttercup” and “I’m going to take back my life.” But the truth is that I am going to exercise tomorrow because I am trying to do something to extend my life a few weeks, because I made promises to people, that I would try until the end.

And I keep my word, as much as any human can. I will be here, still trying, waiting.

I guess the question is, where do I apply for someone to care about me, just me, for three full hours a week?


yanub said...

However you wish to spend your time is fine, Beth. I look forward to hearing from you. Everyone who reads this blog does. But you have to take care of yourself. I won't go away if you have to stop posting. I will email you everyday from here on, even if I have nothing to say. Just make sure Linda or Cheryl lets us know what is going on.

JaneB said...

Your time is yours, however much other people think they have a say in it - spend it how you will. This blog is yours - writing angry is true if it's an angry day, and your readers come here to see YOU, however you are.

Your postcards have meant so much to me - they really have touched my life. You haven't wasted your time there, honestly.

It's hard to know what to say but, I'm thinking of you, and I'm sending clumsy words to at least say that. I can't be there physically for you, I'm on another continent for starters, but as much as the computer can carry caring, these messages do.

desdemona said...

I agree with Yanub. Spend your time in a way that improves your own life.
I probably won't write every day (there's a reason the pill never worked for me) but I will try to write as often as I can manage and I'll try not to whine and tell you stuff we did well rather than things that went wrong, except I can make them funny, ey ;-)
Oh, if you want/need phonecalls, I'm pretty good at those, my best friend lives about 2 hours away and we see each other... once a year but talk on the phone nearly every day, so I have practice :-D
I'm doing the anonymous commenting again because blogger still hates me :-/

Drake said...

If I could but be there with you right now, I would. If I could hold your head and squeeze your hand, I would. I would travel half way across this planet, just to be able to be there for you...

I know all too well the cascading affect that this affliction can have. It turns a simple routine procedure, that is supposed to last
a day at the most, into a week long stay in ICU.

I know the fear and despair of lying helpless, gasping for air while your vision turns to black and your brain screams out for oxygen. I know the comfort that one single hand can bring ... even if it is the hand of a stranger. The calm and peace a single whisper of "You are in our hands" can bring.

You have touched my heart in ways that others don't know how to reach. I share your pain, your anguish, your fear. I am here for you, not just in thoughts or prayer, but in the deepest emotional way possible. I have not cried or mourned for longer than I care to remember...yet, for you, I can cry a river.

This is not sympathy...this is not a "sad face" mask I put on to make others "think" I care. This is true empathy. I don't squeeze my heart or pinch my self until I bleed just to be able to cry...

I sit at work, with tears in my eyes and co-workers who think I had just lost my mind. This is not "Oh how sad for her" or "Oh poor thing". I do not subscribe to pitty ... it's a waste of energy.

I think of the road that lies ahead for me... I think of what could be, might be and what is and I think of what I need in those bitter dark moments. In the end, I would most likely not travel the same road as what you will...yet, if you look back on it, you will see more than just one set of footprints.

Every moment of every day, every ache and every pain is but a drop in the ocean of what you must face... I am here for you. You are not alone. Do not overly concern your self with my trials and tribulations...nor my apparent "self indulgent" method of is my way of relating...however small the similarities might be.

Whenever the darkness threatens...whenever fear sets in...know that I am holding your hand. Your fate might not be in my hands, but your heart always will.

I wish I could send a tear over the internet... I wish I could send my hand... I wish I could give you my heart, as flawed as it is...just so you can breath easy for a little while longer.

Anonymous said...

Maybe you should re read your post, and think about how that makes Linda need to respond to this. Just please let her know how much YOU appreciate HER.

tornwordo said...

I loved getting the latest postcard and matching it to the picture of all of them spread out. I'm alternately filled with hatred for the "health care" system, and filled with compassion for you. As always, sending positive thoughts your way. Maybe today you will smile.

Abby said...

Your time is your own, though I won't deny that it makes me glow whenever I receive your postcards and more than once they've been the thing that cheers me up after a crappy day at work.

I can't be there to physically hold your hand, but even if I don't comment I read your blog every day (and will make more of an effort to comment from now on - even if it's just a sort of cyber-handsqueeze. Time I stopped being lazy about actually writing to the people I care about on the assumption that they know I care...)

What I can do is continue to send you parcels of stupid goth stuff and postcards for the project, and if you ever want someone to start handling replies to your hate mail on your behalf, lemme know.

Perpetual Beginner said...

Blog as angry, tired, or in pain as you need to, as long as it is helpful to you to blog. You don't need to be pleasant reading for us, that's not your job. Your job is to take care of Beth, however that manifests today or tomorrow, or any day. If you choose not to blog as much, I'll still be checking in.

Lene Andersen said...

Thank you for this post. You are the most honest person I know and I am glad you're honest about where you're at. Don't lie, don't make it pretty, don't compromise any part of you, write your reality. If it means some people skitter off, so be it - there will be people who stay and they will mean it when they say they're here.

I'm one of them. Not leaving. Couldn't get rid of me if you tried. Wish I could be there in person for you.

Neil said...

I too would be beside you if I could be, dear internet niece. But I'm underemployed, and have a family here to help look after. And as tolerant as my Beloved is, I don't think she'd approve of me losing my job so I could come and hug you in person.

So please, dear Beth, I hope you'll understand that I'm thinking of you constantly, trying to send positive energy to you, and I consider you part of my family.

What's next? You blog if you want, angry if you wish, send postcards or not, live for yourself. And if you don't or can't blog, I wouldn't mind Cheryl or Linda doing a quick paragraph to explain whether or not you're still with us.


SharonMV said...

I'm here Beth, I love you. I care about you every day. I wish I could be there with you. Dennis cares too, even though he doesn't know you that well. He knows how much you mean to me & how you have changed my life.


Diane J Standiford said...

You are wrong about one thing. I will die alone with a sna I don't know. I have no friends or family who will even know I am dead. No one has kept a card I've sent them. I want to pretend I have many friends, but that is my fantasy. No pity no blame just how I got it. I never should have been born as I am a man trapped in a woman's body, a freak of nature. You had a life once, a good life. I go on for my partner who is also disabled and in pain every day and sick every day since I fell for her 30 ears ago. If there is not hell on earth there is no hell. I wwant to cheer you up but I am selfish. I visited here to not feel so alone mself. Sorry I failed you. M happ face is a facade I learned to build long ago. You are honest and giving. our many friends will love you forever. That would be enough for me. I hope we get another life, another chance.

wendryn said...

I agree with yanub, too. Do what *you* need. I'll be here, thinking of you & of things to send, whether or not you write.

You have kept me reasonably cheerful through a miserable time of job hunting. The worst days I had, I somehow always ended up getting a postcard. You have already made a huge difference in my life, and your friendship is very important to me.

I wish I were close enough to be more help.

I'll keep sending postcards and making sure to write every day, too, even if it's just a silly story about the giant dog or the strange cats. Take care of yourself as much as you can.


Devi said...

I just e-mailed you a winter-y picture, but it's not meant as a X-mas card, just as a "nice thing for Elizabeth".

Aside from that... I once again don't know what to say. I know you're there, I know you're in pain, but I don't know what I can do about it, sitting here with no money for a plane ticket so that I could just come over and physically hug you (if you wanted me to) or take you out for coffee (if your health allowed) or whatever else I could do.

Telling you I care feels so little, so trivial, so forgive me if I do it regardless. I care. I care. You're precious to me, and not just because of the three wonderful postcards I received from you (the "one" in my recent reply was a typo). I wish you wouldn't have to be in pain.

Anna said...

Sorry I am not in canada:) Again as I said I would come and annoy you:) Now that will only happen through comments or mail:)

Sorry you feel deserted, as said before, Youre not. Not by Linda and Cheryl. And not by the I-net people reading your blog.

And, as bad as many christians might have been to you I say it again. I pray for you and Linda, as I pray for many people and myself. And it is not a "pray and sneak away never to meet again pray." That is not MY way, and it is surely not a good christian way to do in my opinion.

Take care. As good as you can.
Blog as much or as little as you want.

Abi said...

A challenge! To which I must rise! Hmm, this could be interesting...

You're right about how easy it is to make a commitment, then to find the lack of milk, and the people who are here right now to pester, get priority over the person who is distant and has probably forgotten about you anyway. It is easy to say "I'll do something later", too. (Don't feel my milk has priority over you, though - if I don't have any, it's just tough.)

It is also often hard to come up with appropriate words (in my case, anyway - my brain leaked out of my ears while I was finishing my masters thesis, and has not yet returned), which also leads to procrastination and lack of doing anything.

However, these are merely excuses. It is important to decide on one's priorities and work to make sure that they come first (or however high is appropriate - not everything can come first, but things can have their own time slots).

Also, whether or not a person has forgotten about you does not necessarily influence how pleased they will be to hear from you.

So, big words. Time to get doing. Sorry for falling short of the expectations I have of how often I will be in touch with you. I never neglect to read your blog, though, and I do send good thoughts your way (they are so useful) many times every day.

Ha! What a justification! It's meant to be more of a working through of thoughts...

Oh, and your postcards make excellent bookmarks. Even if the book gets a little heavy going, the bookmark will cheer me up!

Rachael said...

There's no way I can physically be with you, and I've 'lurked' far more than I've commented or emailed, so I guess I haven't done all I could, by a long shot. So I haven't let you know that you've inspired me to: look at Hello Kitty stuff in shops (very boring compared to yours, all the way here in NZ), start challenging my physically disabled daughter to move away from 'poor little me', tell people about you and your project, cry, laugh, seize my still-AB life and enjoy it all the more. Loving you from the other side of the world - can that be true? I can't think of a better word for it.
Do what you do, girl, I think you make good choices, and live your life well.
Oh yeah, I have found a post card to send you - but so boring compared to yours, I'm a bit ashamed, but I'll be sending it nevertheless.

Elizabeth McClung said...

First, Thank goodness that Google has gone back to regular comment format, at least for me!

Second: This turns out to be a lot like school where during an assembly and there is a lecture all the students who have NO NEED to feel guilty feel guilty and those who do aren't there because they are off vandalizing the school.

Third: Um, this is Screw Bronze and I challenge myself and I'm going to challenge you. Sorry but that's why I do things, if I like you, I challenge you to be MORE, becuase I LIKE YOU. If you want to feel warm then go read Dave Hindsburger or another writer who makes disability warm and nice. I don't. If I wasn't angry or bitter about dying, and frustrated about having to make choices about limited time then wouldn't I have a serious mental illness? Really, if I sailed on happy as a clam, that means my drugs are TOO HIGH! Take it down a notch and lets see what really is. I am going to post squirrel pics and I am going to be happy and I am going to be sad. And right now I am saying that I am down in a trench so deep, I need to believe that someone gives a damn. And you responded, thank you.

Defying gravity said...

Another too late comment I guess... But I'm here reading, commenting occasionally and keeping an eye out for interesting postcards. And I'll continue to do those things whatever you do or don't post.

Elizabeth McClung said...

Yanub: I doubt I will stop blogging as much as I doubt I will stop caring or sending postcards (for example I HAVE postcard, so I might as well send them). How do I turn off "caring"? I don't. I would love to blog about a pain free existance even if I am degenerating and my adventures to the end - I probably won't have that but I will some days, I am going to be more honest and say some days, "Crap day" and some days, "Lonely day" and some days, "Feels like the end day" and some days, "Feels like I could last a year!" and some days a mix.

Jane B: Thank you, yes, truth and being challenged is not a bad thing, though it may not always be pleasant, thank you for being a true friend, along with so many others who ARE here on days when all I have is a moaning session. But then, honestly, if I was perky ALL the time, wouldn't it be annoying?

I send postcards for a reason, some are to challenge people, some are to tell people that they matter and some are so people don't believe they are forgotten (becuase I have felt that way). My only regret is that I can't send you MORE, but I can't and that is why I have to make choices, so my physical presence my be a little less.

Computers are very handy things aren't they?

Desdemona: Great to have that google system gone isn't it!

thanks, I need to take a bit more control - ha, that's the rub isn't it, I can't control much, not even my body.

Okay, slightly puzzled by the pill comment (um, becuase you are pregnant a lot?), but I get that people do have families and other people to take care of and they come first. Family comes first, I have said it and I believe it. And there are lots of people who I know write when they can! Oh, I can see your name sign, so blogger is confused.

I have a fear of phones, for some reason (brain boom), but I might give that a try since now that everyone heard me on BBC4 you can get the shameful voice in real life (uh, what a horrid voice I have!)

Drake: What you say about having a hand there is true. Marfans, actually with the right meds won't shorten your life. When I was diagnosed, it would, I was told I had like 10 years. Then I get back from the UK and they have new research and I can live on...until I get MSA. Haha, Death is not amused at being cheated!

I said the hold my head, becuase one time when I had a very bad accident, a woman whose daughter had CP, while I was seizing, and everything was bad, she held my head in that steady way that says, "I know what I am doing, you will be okay, we will come through this" - I have always remembered that touch.

I think pain is pain for everyone, so your pain is PAIN, you know. And I recommend some decent pain meds and beta blockers - I mean, if your doctors aren't incompetant like mine are! And I like that you don't have a mask. I understand that is how you communicate, and that is okay. I know that you are putting yourself out there, risking hurt BY communicating and I appreciate that.

No, not a big fan of pity myself.

Anon: Wait right there, Linda told me she has some thing she wants to tell you about the blog!

Tornwordo: Thanks, I thought about you and the white squirrel every time I see a squirrel now. Thanks for taking that video. Well, I am still going to send postcards, so thanks for giving me your address - and I still do want addresses of people who want postcards, I just can't do 100 a week or the like.

Abby: I am glad that the postcards are a thing that make you happy and that is good since I think I just sent you another? (Abby H?).

I understand that some people don't know what to say, I guess I was challenging people and myself because I have no choice but to make a choice, to change, so I throught I would drag y'all with me! (How sweet of me, NOT!).

Send me parcels please (see, I actually asked and DIDN'T explode from selfishness) of cool goth stuff and you will be pleasantly surprised (or not, yes, I think you will be surprised!). I know you from my brain box, you send cool stuff.

Perpetual: thanks, giving me another perspective or spin. Yeah, I will blog my REAL life now, drop those social nicities we are all ingrained with - how hard it is to lose them, to ask the person coming over to take away your home care if they would like a drink..and maybe some cookies?

Don't worry, me and writing I think are a habit, like chain smoking!

Lene: Thank you, I didn't really understand until yesterday how seriously you took your promise. Because people don't when they promise to be with me, but you do, you will. And I felt ashamed and humbled that I had doubted you. I blogged this in part because of you. And because, hey, if people aren't being challenged, how can we grow - if we can't grow, what is the purpose of our experience?

Neil: Family comes first, I said that before and I say it again. You are here everyday, online. And I emotionally depend on that.

I live by what I see as right, and right now, there is a bit of a problem figuring out what that is for Linda and I and for everyone else, I can't stop caring, but I think being in hospital and trying to do postcards while hooked with wires and tubes might be a bit much?

Sharon: We change each other. I will keep my promise as much as it can be kept, that has not changed. Nor has the light of your generous and artistic spirit and body - to find such friends is a gift, and I am glad for that gift.

Diane: First, I have to wish you lived in Europe where it is simply a medical issue, an the government pays for everything but this is north America where it is a political issue to have a medical condition where one is in the wrong body and so instead of compassion there is hatred. Which I wish I could change. I changed how I treat people, I try to show others what is acceptable or not, but I'm not having much luck on that.

Well, if you sent me a card, I've kept it (it is in my brain box!) - and if I don't have your address, I would like it so that I could send you a card and you could send me a card and then there would be one person, and you could send a card to Cheryl and there would be two people. If that is what you want, I want to make that happen.

A lot of people visit here so they don't feel alone, and I think from your post, I recognize that feeling and that anger so I share that too.

If you are here becuase this is what you want or need, that is fine. I am actually a supporter of that, I have worked to try and find people would could use a little tangible evidence that they have higher value to someone than you say about yourself. I would provide that for you if you will let me.

As for people loving me when I am gone. Personally, I'd rather deal with anon commentors and be HERE - than have heaps of love poured on a bunch of ashes in a small box (seems a bit silly).

You haven't failed me, thank you for taking off your mask for me. Now, will you allow me to send you a postcard? This post wasn't directed AT you, but I can see how it would feel that way, would you be willing to trust me, and let me in enough to show you that I do give a damn.

Dawn Allenbach said...

I've been away from a computer with Internet access for days -- unexpectedly so -- but I think you should know I think of you every freaking day and send a request to the Universe to lessen your pain a little, enough to let you go for a walk or work on postcards or have a nap. As you know, I'm working on my Ph.D., so when I'm away it's because I got sucked under by my papers and grant proposals. I will resurface to read the back entries and rage at the Universe that you can't catch a break.

One of your postcards and the fan you sent me sit on my desk. They are among my most treasured possessions.

Veralidaine said...

Beth, I have spent all day trying to think of what to say to this post. First I looked for a gift for you. I looked through everything tagged "Hello Kitty goth" on and on the official Sanrio site and on Froogle and found nothing you would like-- but maybe the Japanese import store has something again. I wanted to comment that I had sent something to you and it was on its way, but I found nothing that seemed quite like Beth. Well, there were some panties, but I fear Linda's wrath should I start sending you intimate apparel!

Then I found this: and wondered if yours is a related condition (or, one of your various conditions). But that's no help, really. You don't need another diagnosis and no matter how hard I wish, I don't think a cure or even a treatment that will significantly extend your life is going to come out of thin air.

So I'm at a loss. I know what you're asking. You've been very specific. It's not your fault I'm stumped. I just don't know what to say right now. I'm glad to be one of the 4%, and very sad that 96% didn't respond. I want to be one of those people who care about you, just about you, for three hours a week. I wish I could travel to be with you. By the time I saved the money, though, I don't know if you'd be there to visit. Horrible thought, but like you said, the luxury of waiting to care about you is not one that anyone has.

I tried to find a Yuri postcard to send you and what does Google give me?


I have no idea how you have mastered the Googles in order to find the awesome postcards you do. I'm stymied.

I'm thinking. I'm working on it. I will find a better way to show you I care, more continuously and more dementia-friendly than occasional packages.

elizabeth said...

I am definately your friend! (I hope!) I think about you all the time - though I know that does nothing to help you. But I care. Very much. And your postcards - are very much appreciated and loved! I wish I could hug you - but I am thousands of miles from you in front of my computer - frustrated that I can't. But I can think about you - so I am and will continue to.

cheryl g said...

I have watched you suffer with the unrelenting pain of your condition and I have often thought that no one should have to go through that.

However, I have decided I would make an exception for Anonymous.

I too say, Blog what you want to say - it doesn't have to be sanitized for me. Blog when you feel like it and take time for you when you feel like it. Same goes for the postcards. No matter what I am not going anywhere.

Donimo said...

I agree with the others who said that blogging sad or angry or empty is a fine thing to do. Your life is a hard one to live and often so hard to read about, but we're here and we care and we can handle the truth. I think that your habit of truthfulness is a gift to your readers.

I give a damn,(Scarlet), and I'm not going away. Of course I wish I could do more, but I have to accept my limitations. Sigh. Magic wand, anyone? I don't feel guilty, but I feel sad that my pain and fatigue limit me so. Would that I could...

Tammy said...

You have every right to be pissed at the world. Just wanted to say that.
I'm glad to read your posts. I don't think you should just blog about your "good days", that isn't what this is about.
I'm speechless right now, and angry and in tears for you. Just thought I'd comment to let you know I'm here, reading, caring, and so wishing there was something I could do.

Maggie said...

Hi--I felt awful being away from you and the computer for so many weeks. Cheryl and I talked a bit today and maybe she can help explain as well. I want you to know that I didn't abandon you because things got to hard or because I'm afraid. I just needed to go get matt...and get married.
It was good to see some of the picures from this weekend. Glad the smile was back, even if it was just for a bit. I love you, do what you need to do for you, and I will follow you to the end.

rachelcreative said...

I'm so sorry Beth. I wish I knew the right things to say. I wish I was in a position to DO something.

I'm one for showing you care throught the year and not just at xmas or birthdays or whatever. Me and Paul don't really make a big deal of anniversaries or valentines for that reason because we try to be romantic and do special things as often as we can.

Your postcards mean a great deal to me. I've found it hard recently to know what I have interesting to say to anyone as my life is so same-y all the time. But maybe I should just say I've got nothing to say but I wanted to say hello and I'm thinking of you.

Denise said...

I went to a talk today wherein an MD who does research on phantom limb phenomena and synesthesia instructed us as follows: "If you think the patient is crazy because it isn't already described seriously in the literature, you [the doctor] are simply too dumb to figure it out." I hope you can get a GP and neuro who give a shit and will advise you to have the medications that help, that give you the best quality of life possible. Caregivers who will not pull the plug or refuse to even try to help simply because you are inconvenient. Your value as a human being outstrips your utility or convenience in any given moment.

Simply reading your blog has made a difference in my life. I make sure to check in 2-3 times a week, despite my graduate work + University service duties. I don't read it to get a warm fuzzy feeling or for reassurance someone's life is harder than mine. I read because even though I rarely comment I feel you are a friend.

I have been reading since you were AB and regional-class fencer. At the time, I was looking for tall women to show my partner who described what their experience was, so she wouldn't feel so alone. I like to think she was reassured, even though we've since separated. I have no idea if she sill reads your blog, but I do.

You are fantastically intelligent, dark, funny, mysterious, blunt, and above all honest, human. I love all these things about you, and am grateful you share via this blog with us. Your journey over the last few years has been instructive for me. It got me thinking about accessibility, dismissal of "weird" conditions in the medical profession, and a host of other problems you have faced. You were honest about coping with the transition from AB to disabled. I recently revisited these revelations when I badly sprained my ankle 6 weeks ago. My disability is temporary; I am almost better. It still brought the spectre of what-ifs, including what if it were never better. Your old discussions of that process helped me cope with my own. I was not alone in my feelings of frustration that my campus is poorly accessible for a person who is supposed to stay off a limb; I still needed to walk at least two long blocks from the bus stop to the health center or my work building. And I needed to work, mostly on my feet or seated with feet hanging. Maybe I can work to change that?

I am sad you are dying, because it feels I am losing a friend. I don't comment enough that you probably know me from Eve. I also know your energy is limited. That's OK to me. I do not expect any personal reply. I just wish to tell you some of the positive difference you have brought to my life simply by blogging honestly about yours.

Thank you for inviting me in!

emily said...

I just discovered your blog through reading Mayday Productions...
I just want you to know that your life just touched mine...and I've never met you and just read parts of your blog.
Thank you for sharing your truth and your experience authentically and without sugar-coating it.
By the number of comments you have on here and the postcard project, you've touched more lives than most people ever do. Still, I wish for you that you did not have to go through so much pain and awful, awful suffering and could be out living your life with joy and without consequences for every bit of joy you do get to have.
You'll always be in my thoughts now....