Monday, August 17, 2009

A letter on dying #2

Disappointment of Survival?

Through my life, the way I deal with problems is enduring (running marathons, training for ultra-marathons). Because I know I can endure, I overcome the problems by trying to figure out what it is and what must be done. Whether that is going to 25 places a day to find a job (and putting each application place in a book to return to visit three days later, a week later, then two week follow up – what? I’m not obsessive, well I am but I got three jobs out of it!), doing a degree, or finding an apartment or moving countries or continents. Do I need to squat/sleep in an unheated building carrying all possessions with me? No problem (okay, technically a bag lady but I prefer um…upwardly mobile).

But this problem is that my nerves are dead and keep dying, I have one disease that no one has ever survived in 108 years and at least two other diseases (or one new one encompassing all of them). If I squat on the beach, I die. My hands go blue as do my lips when I TALK, so I cannot apply the, “Anything you can do, I can do better” to it. Regular and alternative medicine have given up, I keep creating with Linda and Cheryl’s help ways and things to do which keep me alive, and functioning. But mostly I seem to be waiting. Waiting to die. And I am so past my expiration date I feel social pressure/expectations for me to die. Why aren’t I getting on with it? I keep expecting the hook from vaudeville to come out and do a neck-yank, a gong from the gong show: get off the stage!

As time units pass, it feels and it is that the things I do and the people I know or knew in life or online do diverge to extremes. I want to do things where I can show people I am still fighting, where people can root for me, or relate to me to succeed. Yet it seems the ways I can show so people understand I still fight, and I do, is close to zero.

I want to race, oh how I want to do a wheelchair race. Today I decided: the Terry Fox in just over three weeks is my next race. And another race after that. I have to train. I have to hope for no heat waves. While others are out on weekends, or for coffee or dinner, I don’t, I can’t. I am working on getting up to the Y but that will take finding three forms, filling out another and at least two days of planning. A week of work to do what someone would do in an hour or two. I try to find ways to keep myself feeling I am in the social grouping of the human race, but how? I suffer, and I fight fatigue. I do this in order to write. I spend 33% of my time doing the many checks to make sure I continue to survive. That’s it. Who has that life? A commando?

Though I rapidly declined and expressed my fears, I feel that I have, in some way disappointed those who expected the rapid end. In some ways I feel disappointed myself. This is not how dying is shown on TV and Movies, and not how it played out in my mental theatre either; to schedule going to pee, to make sure I eat, to make sure my body tempature is within certain limits, to deal with the several emergencies of the day (like 9 fingers going into frostbite; or depressed respiration, or erratic heartbeats, sky high blood pressure). So when I see the hands swell, take a pill and turn the air conditioner on; when I see my entire body suddenly have goosebumps know I am exhausted and in shock, try to get to the bed without passing out. Is the fever I have from being ill or from being exhausted, or is there another system in my body I can’t feel that isn’t working? Press on my liver and kidneys for rigidity, feel for rigidity in my stomach for internal bleeding. This is just a day. I see my nerves dying, all I can do is mark the progress. I have to overcome daily, weekly life threatening issues, but I do…and live on. Why? I can’t get a degree, I can’t get a job (tried!). I want to write. I want to change and challenge priorities. But beyond the survival it is waiting. My life is the pain, the fatigue, the waiting to die, and the waiting to see what part of me fails next. These are not things people understand. One woman said after I described part of my life, “Oh you are like the lepers in the bible.” Yeah, pretty much, except there isn’t a village of outcasts, just me.


I have anger. I have a lot of anger about time and life, and how people forget that some of us have only a handful. So many people bemoan that life is not as they would want it to be. That I get. But the attitude that this is all they can expect, that 'oh well this is my life' gets me enraged. “You HAVE life!” I scream, “You HAVE a future!” These people who can afford to spend five years not the way they planned and still have 20 years of satisfaction ahead of them. Rage is what I do to stop myself from crying.

My anger at them is the anger of myself, and being helpless. I want to tell them the way to play in an orchestra; to have a new career; to do anything takes only 1 day: the day you pick up the phone to get a lesson, join a class, what it takes. The rest is just how badly you want it and the time it takes to get there. So you started late in life, so what? You have life, a life with several stages. And who is to say you aren’t going to be a great artist at 55 if you don’t decide to try at 50. You will be saying it. And I will be dead. You could travel, you could start a new project, you could decide to make a film you can do what you want, if you decide and work toward it. I work toward staying alive. So you decided what you love later. So what? But decide. Because this is my life: growing up, going to university to prepare me for the rest of life, and my body dying until I will be dead. I know that getting angry at others, that screaming is not nice. What is happening to me is not nice. I could deal with ‘Well, this is where I start from’. Except I never get that, I never will.

Pain makes it difficult to rise above the self absorption of survival. I try. I don’t know what I have done before because there is no memory but not I am trying to post more often and bring back the humor and style when it was more of a joke. When I refused to be accepted as less than equal to any human simply because I was disabled. It is a joke. But more toward the Edward Gorey ones where I get mauled by a bear or choke on pits. I have the pop-up book of Edward Gorey called The Dwindling Party where they go in a garden maze. By the end of the book, the maze is empty and none have left; they are lost in the ivy or fallen from the gazebo, or strangled by the statuary. That is me, the Dwindling Party, so get the cheese flavored chips while they last! I want to wear naughty clothes, and I want to stop wearing them just to lie in bed...alone.
What I hate about pain is the way it brings out the things I spent years ‘curing’ myself of, the very things I despise about myself. I have OCD again: the more pain and lack of sleep the worse it gets. I have a very bad case of anorexia (I try to exercise in secret, or skip meals or days of meals). This isn’t very good for someone whose is malnourished from mal-absorption. Pain doesn’t seem to bring logic. Nor does dying make a person good, or saint-like, or even define them. It is like we both have watches on our wrist but mine is running wild, the hands sweeping so fast you can hardly see it.

I pout. I pout because I am in pain, because I don’t get choices or have strength to leave the house, or an independent job. I will be immature and I pout over when I should come to bed. I worry, or feel like the stories you hear of CEO’s who retired, spending all day in the garage on a ‘project’ until it is revealed the 50 birdhouses are done. I don’t make birdhouses. I write. Plus I am passively suicidal at all times and actively other time, even the times I do the routines and checks to keep my alive another day. Then I work on the noose or see if the hospital bed will crush my skull when I lie underneath it. I get scared sometimes and go under the bed. It seems frightened, regressed children stuck in over six foot bodies CAN still hide under the bed.
Worries and Impulse

I worry about Linda, of course but also people who send me letters….will I get to reply to all of them in time? Will Linda? Will these people think me rude simply because I died and did not reply? I worry that when I am gone Linda won’t be able to find things, or worse will put things out of order. Yes, I am actually scared that the study won’t be as comforting as I find it now if I die. And I don’t want to die because it will means losing control of where the air conditioning remote goes. And I’ll never see the TV series I waited to order on DVD. Or get to finish the manga series Loveless. Mundane things, like Xmas ice cream with peppermint in the ice cream. I can’t die before that come out, I can’t miss out. It is like the prospect of being left behind on a class trip. I want to listen to music LOUD, you know, the loud that can give you hearing loss if you do it for YEARS. hee hee.

I have, a little late, realized that there is nothing to stop me from whims. So I want to have a tattoo. I like temp tattoos and I never had one because I was worried they might not be nice or cool in 10 or 20 years. It seems I did everything so that it would be ‘smart in the long run.’ Yeah. That was great. I want to be in a rock and roll band. I want to wear cool costumes. Play lead guitar with a highly inappropriate top or lie in bed ill. Would anyone choose #2?

I want sex. More sex, more people. And yet be faithful with Linda. I want to know what phone sex IS? What cyber sex is? Am I going through a post teenage rebellion? I want to know what it is like to have a man naked and interested in me when I am not saying no or screaming, but interested sort of back. Would I laugh? Would I keep grabbing chest hair and going “Chest hair! Chest hair!” and laughing and would be he be saying “Stop that?” Would I be mean and then nice to him to see the thing rise and fall? Does it even happen that quickly? I want to know what that would be like? I am not attracted to men, but if there was someone really kind it could be like ‘thank you’ sex. I asked Linda and she laughed and was silent a long time before she said, “I don’t think I quite like that idea.” But wouldn’t say more and just laughed and left.

I get tired literally from building a bridge from my life, up in the tornado to the many lives people have and live, only to have them think it is something it isn’t. A tornado is a tornado and when you live in one, and you know it. No, it isn’t the same pain as after doing too much exercise, or the frustration of getting the wrong bread-maker. And yet, there has to be some point of contact, some way to connect my life to others, in an understandable way.

I say lives because I have one life, a thin life which I live in the cracks, between waking and sleeping, monitoring, eating food I might absorb, helped by careworkers, Cheryl and Linda. The rest of society have many lives: one in which they work, one in which they play, one in which they have exercise, one in which they have hobbies (hobbies! Can I imagine it, hobbies?), one in which they choose which friends to have over, one in which they plan events and one in which they have extra time to use having sex or being at the club or being bored. I can't imagine being bored. So how do I connect planning three days to go up to the Y, or spending a day helping match postcards or doing a race and spending a week in bed to lives where, “Well, no matter how I spend the weekend, or stiff I am, I got to roll into work on Monday.”?

My careworkers are either burning out or pulling back, as they talk so much less, but admittedly I am in bed more and more. How do they deal with thinking this is the end? I don’t, as I have a race, and Hawaii and TV shows to watch and then sell. Linda found out that there was a warning for star watching on that mountain in Hawaii for anyone with a lung or heart condition. Dying with the stars surrounding me sounded pretty good. It was a risk worth taking. True, it is hard to convince someone you don’t have any conditions when you bring your own oxygen concentrator.

I don’t want to die. I don’t want to be angry because others live and I don’t. I don’t want to regress or have OCD all over again, or PTSD show up. I want average, I want a bowling league, I want a sleazy guy to hit on me so I can tell people at work. I never really had any of that, I was always go, go, go into the future. Should I have enjoyed the ‘now’ because of the chance of a rapid decline of a 1 in multiple million disease? How should I know? I just want a bikini swimsuit like the anime girls, a ‘No future’ tattoo that I can flash, and the energy to be naughty and flirty and make Linda threaten to leave me in the car. Sigh, little pleasures.

...why did I even write this?

I'm lonely behind these walls. Isn't it natural to try to break down the walls and beat on the sides yelling 'Save me! Save me!' I know no one is going to save me. I didn't want to hurt anyone in writing this, I just wanted to stop feeling so alone.
"Walking with a friend in the dark is better than walking alone in the light."


John G said...

Hey! This must be a "classic line" for most of the ppl, but I felt like telling you that... You're not alone... Pokes to u.

Neil said...

Oh, I *do* love that last line, dear. And the girl in red with the watch looks to me like an anime version of Alice in Wonderland.

Wh did you write this post? Because you needed to. Go ahead and write from the heart; vent, scream in print at us for being able to plan for the future, tell us how much you love life and Linda. Tell us whatever it pleases you to tell us.

Whatever you want to say, please say it on YOUR schedule, when and how you can. I won't be showing up naked waving something personal at you, but I do love you, I think. And I'm here, if not there holding your hand and helping Linda and Cheryl. I'm here reading and listening and sending positive energy. Always.

And I just realized the uh, punch line(?) about listening to ear-shattering music: you're noise intolerant. Don't worry, dear, you're not missing much in terms of music quality. In my opinion, at least.

Love and zen hugs,

Victor Kellar said...

First of all, I am no disapointed that you haven't died yet. I have patience, honestly, lots and lots of patience, so take your time

I hear you regretting and scared about all the things you haven't done and won't get to do. We all have those regrets. I understand that for EFM, life has been chasing those desires and not regretting; you've already done so much with your life I can't imagine what else you could do and I know that that must be very sad and scary for you

But even in the midst of your dying, you're doing something great, which is to reach out and connect with all the people who read this blog and even more people, with the Postcard Project

You're right, my window of opportunities is still wide open, and yours may be more closed, but you still have the desire to do something, to do more and I know so many fully able people, younger than you, who have never had that desire, who are complacent with whatever shallow life they have .. and I will take desire (even unfulfilled desire) over mediocre complancency anyday

Anonymous said...

This is just a thought....maybe people are expecting you to die, becuase you keep saying your dying. And many times you say you are dying soon. You are the one that keeps saying it, so maybe that is why people are expecting it..Hhhmmmm, maybe something to think about.

annette2 said...

Elizabeth you are such a mass of contradictions with a strong and shining spirit. You life seems so real to me because you are so good at communicating your feelings. I read a lot and you are always the first person are look for. Annette

rachelcreative said...

Perhaps you wrote this for the simple reason that these are things that needed to be said.

I love that line "Walking with a friend in the dark is better than walking alone in the light."

I'm not going to try and comment on everything you said in this letter. But I want you to know I read it, really listened to what you said. And that with my own life being so small there are things that reasonate and things that I think I could learn from.

Some of the artwork illustrating this post is absolutely stunning. And perfect to match your words.

PS: I don't ever expect replies to my letters. That's not why I write them.

Baba Yaga said...

It's a very rare thing, for anyone to speak so eloquently of *such things. I'm sorry you know them so intimately, but in awe of how you express. I can't imagine how anyone who was paying attention could manage not to know that you're fighting. (Fighting, in my experience, involves a great deal of "I don't wanna", and "oh god, no, must I?" and ignominious beseeching of a dumb universe for liberty not to do it. I bet the arctic explorers with their wooden sleds were secretly "I don't wanna"-ing most of the way.)

I understand something about living in the cracks, about having no point of contact with those people who have - well, even fragments of lives -, of how, when one briefly succeeds in bridging the gulf, one discovers that the bridge can only be walked on way. I remember in that time the ghastly, fuddling tension between the fear of ending (I brought myself to the edge of valley of the shadow of death, in the guise of survival, 'though never walked through it as you've had to do), and of ending thus!, & the desire for it.

It's a horrible irony, to be dying and wanting *life*, and yet to be suicidal, but it makes perfect sense in your situation.

I understand, too, how pain "brings out the things I spent years ‘curing’ myself of, the very things I despise about myself" - I think that's a truth as universal as making the attempt to cure oneself of things is, though it appears that some people are fortunate enough not to discover (or admit) how circumstantial the cure is. (I recall reading that emotional and physical pain are processed alike in the brain.)

And I am most certainly *not* disappointed that you are NDY!

SharonMV said...

Dear Beth,

I think you underestimate your readers & your family here. We are not interested in a rapid death for you. For me, every day you live is a triumph, a hero's day. Everything that you do to keep yourself going is an act of courage & expression of love for those who love you.

I can't really feel what you go through every day, but your writing gives me an awareness of the myriad battles you take on each day just to be here. And I thank you.

I can understand the anger & the frustration against those who have regular lives, jobs, outings, trips ,social life, etc - all the things I haven't had for so many years. Yes, I understand the thin life, pressed into a narrow crack. I went through periods of anger at friends, & relatives who had regular lives. Dennis said - you can't be angry at them just because they have health/lives. I said - I can be angry at them for taking it for granted and most of all, for not acknowledging that I don't have a regular life.

I want you to live, I want you to have some decent pain relief, to make your days better.


FridaWrites said...

I'm sorry you're feeling alone. Sometimes I feel alone too--and yes, we can walk in the dark together.

A tattoo sounds like a great idea--you might try just part of it first since some people have allergic reactions to it.

Anger--my anger emerges with disablism most, with things like a guy using up the disabled parking space on a day when we needed it--no plates or tags. Husband got out and tapped on his window since he might have needed the space, and the guy said, "that's okay!" No, no, it's not okay. An employee asked him to move, and he finally did, to another disabled parking space!!!

Pain I feel a lot too. Some days I feel like I don't feel much inside--it's all just pain and little energy to focus on much else, can't even push myself. Other times I can and do (got a huge # of lots up on ebay this weekend).

None of us will think badly of you at all if you can't write back sometime, whether now or because you've passed away--we'll miss you!

I don't think the hospital bed is a good way to go, could just cause more disability; same for noose. I feel suicidal sometimes too, at times truly wanting to act on it; our knives aren't sharp enough to do much damage, lol. I'm okay right now, I really am. It doesn't happen often to me, once every few years. My parents were really upset by this a few years ago; I was surprised by that since generally I felt suicidal because of them. It's not something people discuss much; sometimes people misunderstand it.

Elizabeth McClung said...

Anon: Please check the tint on your glasses, they do not seem to be rose coloured.

John G: In ways of caring I am most fortunate to not be alone, but in some things, the things that 'must be done' or like when you wait on that little trolley to go into a is very much alone.

Baba: I guess, in understanding I really am not alone, or at least someone has walked those narrow bridges too.

Neil: Always alice. Yes, I've often tried to damage my ears but still have not wanted tinnitus (sic) as I know people who have it and it seems like a hard and difficult thing to live with.

Victor: yes, lots of desire, lots of driven, not lots of energy sadly. Where is it like the TV where you get lots of energy too - I want that disease!

Sorry, I am used up from last night, I will try to be deeper later.

Annette2: Er...thanks, I think. Humans are contraditions, right? Or is that me? Or do I just pretend at having it together very badly.

Rachel: It was Helen Keller who said that. Which makes it all the more....

I don't write back? Oh, bummer, that kind of sucks.

I am glad that there was something in there that wasn't just me, I thought I had fallen so far from humanity that maybe this just didn't make sense, my fears and feelings.

Baba Yaga: Well, I can't just keep going, "Yes, you got that...yes." but it was a relief to get that and understand that fighting is doing what must be.

And also that all that I have thought neatly plastered over is coming down, and the stress and pain brings all the unwanted out, and yes, to be suicidal and yet want so much more in life. Or just more life. But to have so little control, I think that is what makes these things like OCD or anorexia appear, the need to control anything in the tornado.

Yes, "the bridge can only be walked one way" - yes, I suppose you are right, I am asking people to understand things that are only understood when seen or experienced. That is unfair of me, and done in deperate loneliness.

SharonMV: A battle or two a day, 'its flowers' - that's what my bruises look like, toxic blood, impaction, clearing, oxygen to get to the blood, vitamins to get to the body, in a form that they can accept. A few things, beyond the heat and the breathing and the heat beats and the blood pressure.

yes, it isn't people's fault for having fun lives, or horrid lives but to be able to forget for a while. Or lives that are too busy for us. They don't understand what it means and neither did I. How many windows did I jog past where people inside sat waiting on wheelchairs from the slow moving or uninsured system?

Thanks for opening and letting me know the anger wasn't only me. It doesn't consume me, and I suppose I could just cry, but I don't know, it needs to burn and then pass.

Cereus Sphinx said...

*(hopefully non-hurty cyber)Hugs*

I second Neil on doing things at your pace. What you write is as close to the good fight as I've ever seen.

I wish I could help you be not-alone.

P.S. If you want ti hear "what cyber/phonsex is like (and other stuff)... I guess I could help you out. but if you are like "forget that - I don't want to READ about cheesecake I want to EAT it STFU" that's cool. :P

yanub said...

Every day you are not dead is perfectly fine by me. I hope you have a lot of them. I even dare hope that some doctor will both give a crap and have a treatment that will enhance the quality of your life.

Now, help me understand. You are going to try to wheelchair race because? You want people to root for you? Beth, I am already rooting for you! You don't need to go race if that is what it is. You do this blog (and always with lovely pictures), and the postcard blog, and do the postcards, and stay in touch with emails and send gifts. I already don't know how you do so much. I'd beg you not to drive yourself into the ground, but I may as well tell the wind not to blow. You will do as you want. That's OK, mostly.

Mostly. What isn't OK is the not eating. You must eat! Not eating is a very sure way to have no future. A friend of mine was just telling me today of a girl she knew who turned out to have been eating so little for so long that she died of malnutrition. You must eat! Eat! Only if you don't eat will you disappoint me. I dare to challenge you to eating decently at least once a day. That is a goal I really wish you would set.

cheryl g said...

Thank you for sharing so much of yourself. You needed to write this for yourself and for us to read and try to learn. The pictures you used beautifully illustrate what you are saying. The most important thing I have to say is that I am not disappointed in but exceedingly thankful for your continued survival. My world will be so much poorer with out you in it so I want you here for as long as possible. Yeah, I’m selfish on that subject.

I do understand your anger. I have found myself feeling it in a way. Seeing you deal with such pain and adversity I find myself impatient with those who whine about their lives when they could take action to change things and they have the time. I get angry with myself for the same reasons. Now, I try not to whine and instead to act. You gave me a new perspective.

Pain… the pain you endure is why I am so angry with the doctor’s you have dealt with. There is no good reason in my eyes why you have to be in such pain. I do not understand why the fact that you won’t be a doormat is held against you by so many in the medical profession. You know your body better than anyone else and the doctor’s should LISTEN to you just as they should with any patient. I think the pain does bring out the OCD and anorexia but I also wonder if something else isn’t contributing. You learned or developed ways to deal with your life so the OCD and the anorexia were no longer necessary as control methods. You had new tools. Now you can’t really use those new tools. You are not able to physically push yourself or work harder, or pursue something with single-minded determination. Since those tools aren’t really available it is likely that you have regressed to using your old tools of OCD and anorexia because of the aspect of control. Does that make sense? Oh, and I will continue to pressure you to eat…

If you really want a tattoo we can look into it but they do involve needles. Pursuing whins is a good thing when it can be done safely. You and Linda can sort out any sex fantasies. I will volunteer to help in other areas like tattoos, bikinis, rocker chick clothes – that sort of thing. I think going to see the stars on top of the mountain in Hawaii is also worth the risk. It is 13,000 feet but you will have your own medical staff on hand.

I will walk with you in the dark or in the light. I will stay with you behind the walls. I will be with you for all of this journey. You are not alone and you are loved.

Stephanie said...

You have lots of friends while you're walking in the dark. (see: these comments) Also, I wish very very much that you were the one writing in the picture. Make that my prayer.

And, *hugs*

Raccoon said...

I think the girl at the message desk needs to slow down and relax and not be so stressed about things. And I see lots of wings in this post, I've not seen them in a while. And one of them is a steam punk sort!

I offer to be the lab dummy, but I think that I would break out laughing faster than you would.

Who is expecting you to die? Sometimes, I think it might be easier for you. Other times, you still being there, here, gives me the proverbial boot in the pants to get out and do stuff, if for no other reason than so you can live vicariously through others. Or even if it's just going out and getting more postcards for you.

Summer is almost over for you, so hopefully you'll be able to get out more on Indy. And Hawai'i is coming up soon? All things to look forward to.

And sometimes, that's what's needed:

Things to look forward to.

wendryn said...

You are amazingly clear about how you are feeling. You have a right to all of these feelings, and you are helping people by writing what others fear to say or are not stubborn enough to say.

Sorry the comment is so late - very long day.


Baba Yaga said...

Just an addendum: no, it is *far* from unfair of you to ask that people understand things beyond their experience. What is language for, if not for that?

Some things, few people can/will understand - I can understand that it is true that you stop breathing at frequent intervals and yet can think, seriously, of wheelchair racing (Yanub's question about that was a good one - you have nothing to prove to us), but the lived experience of that is rather beyond me.

That makes for desperately lonely experience. But some will understand, somewhat, and even somewhat is a good thing. If you don't ask us to understand as much as you can possibly express, or at least to try, then even 'somewhat' won't come about.

Elizabeth McClung said...

Baba Yaga: Thank you for giving me the kick to keep going, to push myself in writing.

The first time I stopped breathing, the voices started to drift away, I had overheated, I wasn't coverting, later, when I stopped breathing the first time for a long, long time, the voices and my body became distant, like when drugged in an operation before passing out, and I could see the green, the verdant forest and the pathway, and hear the people and I knew, I knew they were waiting for me. I could feel things happening, but I didn't even bother to identify what they were, what part of my body it was, because I was pain free, I was happy, and I was curious and late, and I needed to join the others up ahead. And then, at the edges, I started to lose color, lose hearing and I could hear Cheryl and someone, and as much as I tried to hold on to the sounds from up ahead, they were being drowned out by things like, "Come on, Sis" and "Breath" and being rubbed like a cat the wrong way. There was pushing on me, pushing my stomach, my lungs and I became aware and realized that the forest, the path, it was gone. Really gone. And it was time to wake up now. And I pushed as hard as I could, and it was a cough, and opened my eyes.

I don't know if I ever told that to anyone, because stopping breathing has become mundane. I know when the world drops away, the pain, the noise and I see the green, and a path, or a little girl holding out her hand that I have another chance. And most of the time, I want that chance. I am not saying DNR, I am saying, that sometimes I get so tired of fighting and that I am not afraid. I know, sitting here that the endorphins are making a explosion in my brain screaming for help but for me it is just a nice oasis, a place where I want to know what comes next. But when the time comes, I have to breath (if I can), it is my responsibility.

I race for the same reasons. Because in each moment, whether there is pain, whether there is agony, whether a hill is long and seems impossible, is not important, only the next second is important - to accept the pain, accept the limitations and act anyway or not. That is all. To stick my fist into the spokes and push, and if I cannot push, then pull, and if I cannot pull then to use my forearms against the spokes, my elbow in the spokes pushing. I do not think of what that will do, or the skin that flies off, or what pain or muscles may hurt later, I think only of the next second until I cross that line and the reality of having to live in the here and what that means comes back.

You push me to try, and I will try, I will try to bring my reality to you. Thank you for calling me on that, for challenging me.

JaneB said...

Hugs. You are an excellent writer! Thank you.

And I am NOT disappointed to turn up every day or so and find you NDY!

Elizabeth McClung said...

Frida: It sounds like a hard time. Your story of the guy in the disabled spot was so eloquent of the aspects that drive me to distraction.

I hope people do not think that I am angry at them. Everyone's pain is unique and to have pain, to have CFS, to have depression and make a life that is stable, to have fibro, and go on and try for stability and joy IS pushing yourself, IS challenging yourself. Those who blocked my door today at the Y, where I had wheeled up manually to get there, tearing my back muscles and some along my ribs, and I hit the wheelchair button, the door opened and the two women came in

"Is that the newest? (lulu leggings)"
"No, these are the blue spring ones, the newest ones I wear on wednesdays." she replied as they both walked through the door I was trying to get out.

$200 leggings, is that the newest or the ones that just look new but are 2 months old? Oh my life is in a rut! These are the things that anger me. Being told, "No, we don't accomodate power chairs" when I have to go back for an 'interview' at the Y, where they 'assist' those with financial needs by having someone ASSESS personal and private information, sensative information and then determine how much you SHOULD pay (that you spend too much on food!), and it doesn't start at 0% or 10% but a 20-80% assistance but as they put in their pamplet that they have never turned ANYONE away, but that some have CHOSEN not to make the choices which would enable them to join the Y. Um, yes, all equal humans under that statement. Oh, and according to the pamplet, MY materials are not confidential but what they say to me IS, what they tell me about me as a human being IS confidential. Sorry, too much pain and too much liability BS.

I find ebay a huge difficulty to put on large amounts of lots, so you are fantastic, I want to put stuff on but I need to put on 50 lots in one go, so I need days and days of prep. The DVD's are easy as I have a template, while anything else is more difficult. Fantastic getting things up, it makes me feel like there is control a bit, hope a bit - does it make you feel like that?

I am very good at sharpening knives but Linda has put the sharpeners away somewhere - and I agree, the bed can damage or crack my skull but it may not kill me. And yes, why is it so wrong to say what we are feeling when we feel it about this subject? Linda kept me alive in the darkest parts by playing the 'death game' where I try to find the perfect suicide and she comes up with reasons not to - it kept me on the edge of sane when if I had said nothing, the voices would have just gone round and round until I would have walked out and killed myself. I fought against it, and she fought with me.

Yanub: Thanks. You don't know how much your saying that it is okay to be alive, that I don't disappoint you. That I haven't failed by staying alive. 'Better a live dog than a dead lion' says proverbs. As for a GP, it is like a secret, or they fill up in hours and that is it, to get a referral takes weeks as you have to apply to become a new patient and THEN if they agree to see you there is an interview, it is like a job and then so often a week or two later, they drop me. I have a doctor who cares, but is unable due to her situation to take me on. Because of her I have estrogen to help, I have synthoid and I have medicinal cannibas. That is more than my GP who did all the paperwork did in a year, or 18 months. However, getting paperwork done now....that's hard. It is like I need two GP's, one to care, one to do the paperwork!

Elizabeth McClung said...

Yanub Part II: I do feel an obligation to the people who come to spend part of thier day and life to show that I have not given up. And I haven't, but how can I show it. Also, I need it for me. I can spend all my energy trying to explain to someone that I am still alive, still trying or I can say, "I did the X 10K, the Y 7K and the 5K coming up I am training for." and that they can understand. Here they can understand. Is it dangerous? Yeah, and painful, so painful. But I smile. And I want people to know that I can still fly.

I went up the hill today in my manual, I had a shower and I went up to the Y and booked an appointment for tomorrow morning because I want people to know that I can fly, and so can they. That yes, resting, yes planning but YES - DOING. That if you dream, you can do it. I want to do it. I want it very, very badly. And I will, unless beaten down by my body (which wouldn't convert oxygen even AFTER my nap) or by the layers of paperwork, show that I can fly. And maybe even box.

Thank you for talking about the pictures. I spend my allowence to get the books and I try to get the right ones, and it takes research and months to get a good picture and a host of good pictures. Thank you. 'Might as well tell the wind not to blow' - yes, well, I want to make sure people know that they matter, at least to me. And if my body is the sacrifice, then I offer it willingly. What do I do when they ask me not to? I should honor them more, but how can I show silence, or lying still. How can I give back the rest so that you can hold it and know that what you said mattered? Help me to understand.

I had soup - that counts right? And marshmellows. soup and marshmellows. I have to go now. Tomorrow, I go to show that sometimes people can earn nothing at all - and if I show this then I get rewarded by having them demand that I pay money, but I save 10% off on a class. Haha. I have to show I have no money in order to be demanded to spend it - ahhh, the YMCA, you are a beacon of community involvement!

Kita said...


Ever. Even if you think you are, if you look around your apartment and see no-one, know, my dear Beth, that we readers are thinking about you. That we are wishing you the best, that we love you. Simply because you are you.

Elizabeth McClung said...

Frida: I'm sorry, I was a self absorbed ass.

I am really glad YOU did not die becauase as bad as things are, I know they will be better. Honestly. But I also know that doesn't make everything better. I am glad you don't give in to those feelings and when you want to talk to me about them, I promise I will try not to be a self aborbed person and make it about me, honest.

And I am so frustrated with your town. But you teach me, and you teach Linda even in your problems you write so well and we learn how to be more effective in our simple, polite but direct approaches - who knew becoming disabled would make a person have to be more assertive and make the partner more assertive? But it seems to.

Even with all the pain you are still and activist and a practical one - try it out first - good idea. I would take your pain. I think you might have said that to me, and now I say that to know knowing exactly what that pain is, I would take it so you could rest. I push myself, you push yourself. But we are both stuck in our limitations, and our pain. I wish, I wish I could be there for you. I wish it so badly. No one has done what you have been though with such dignity and quiet endurance. When I fly, it will be in part because of what you have shown me is possible. And I will fly, not to death, but fly, really fly.

Kita: Thank you. Thank you.

Jane: I edited this because I didn't want people to misunderstand, but then I don't know if I can ever write it well enough. Thank you for understanding the effort. Thank you for letting me go on, guilt free to find out what happens next....alive.

Neil said...

Fridawrites: I've seen those same idiots in the disabled parking spots. You could assure them that you understand them parking there without the proper ID, because you realize that some people's disabilities aren't physical.

Beth: yes, tinnitus is awkward. I have a slight case of it myself. It ust means I can't listen to the wind in the trees without the ringing from the loud music. Unfortunately, it was ME helping make the loud music, and it was folk music, of all things. But we played a couple of places where the sound people just couldn't leave the volume at anything below ear-splitting.

As for the tattoo, I (always the pessimist) kept thinking, "But your skin doesn't get much blood, and won't heal." And indeed it might not, but I realize that a small tattoo to start with might not be such a bad idea. Go for it!

While you might be asking us to understand things that have to be experienced to be understood, you are describing them well enough to give us a taste of that experience. THAT's what makes this blog so valuable!

Keep up the good work, my dear.

Love and zen hugs,

FridaWrites said...

Elizabeth, you are a dear. You keep me going, you really do. You haven't been self-absorbed but in fact emailed me when you hadn't heard from me in a few days (but I wasn't checking the regular email address unfortunately). I didn't mean to worry you. I have to admit sometimes I have obnoxious endurance and will fly off the handle at disablists, though often that doesn't do much good or people miss the point and just think "grumpy disabled person."

I also get that with the door buttons, people thinking I'm being all egalitarian by opening the door for them--but I can't follow them through or it will hit me in the back if they go through first. I have to wait until it closes and then try again.

And yes, I dislike the loss of medical privacy such as you describe at the Y. Sometimes it's really unnecessary to provide so much information; "I use a scooter and here are my primary diagnosis codes on a note from my doctor" should be enough. But no, people think they need every piece of info!

SharonMV said...

I know you can fly, Elizabeth. I'm glad you're going to the Y again, sorry that you have to deal with so much paperwork & disclosure of personal information just to get a discount. Thank you for telling us about your experiences when you stop breathing. The forest is lovely, the path, someone to take your hand. Thank you for taking the breath that brings you back to us. It is hard, I know, but you do it, you choose to. It takes a lot of courage & strength.

If you race again, I will rejoice despite my worries. I will be cheering for you. You will fly, however you choose to do it - it is your nature. Rest & eating are important to help give you strength to spread your wings.


yanub said...

Soup is good. So are nuts. I'm not entirely joking on the nuts. You need to make sure you are getting essential fats in your diet. If you can't tolerate meat at this point, make sure to put a tablespoon of olive or coconut oil in your soup. Nerves need fat.

You show everyday that you are flying. The racing is entirely unnecessary. At least to me and, I think, everyone else who knows you. But I don't think the racing is unnecessary to you. There is a part of you that is unhappy unless trying your limits. It's really a wonder that you didn't go into stunt performance instead of academics, though you went into academics in about as dangerous a way as can be done without involving the Grand Canyon and a motorcycle. Just--don't think you have anything to prove to anyone else. Do what you want to do because it is necessary for you to feel the whoosh of the wind.

I'm always impressed with your efforts on your blogs, but I don't say so all the time because it would begin to sound like I am humoring you. So, I'd rather just say it sometimes. Gracious, I can't hardly be bothered to load the pictures from my camera onto my laptop, much less think about them enough to put them in my blog. Yet you always have pictures that you have taken, pictures from your art books, pictures from your adventures, pictures of anything that interestes you. And you share them.

Come to think of it, it's that sharing that you do that is the reason you racing is not necessary to me. You give of yourself more freely than most anyone I can think of, sacrificing your time and energy and your tiny allowance always with other people in mind. Don't think your work is unnoticed and unappreciated or that you make no difference. You make a difference everyday.

Jill said...

cant give any helpful advice but Id give you and Linda all the hugs my heart can muster(the non hurty kind) Love is forever honey, you arent alone,, if the journey right now is hard (and Im not saying it isnt,,) love each other .. be together cuz time is coming when youll be separated and that will hurt like hell. But it is my belief the separation wont be a long one..
what ever your religious/afterlife beliefs are.. LOVE EACH OTHER NOW..
love is forever Elizabeth it truly is..

Dawn Allenbach said...

I really really REALLY wish I could be there with you.

rachelcreative said...

Well actually you do write back through email. So I was misleading you.

By the way there is a parcel on it's way to you.

Denise said...

Got your postcard Friday. Smiled big. Thank you!

Sometimes it seems we walk together despite the distance. Your card came after a bad week.