Wednesday, October 22, 2008

A signal for help: 'In distress'

Last night, in my indoor wheelchair, I tried to wheel myself to the bathroom and just lay down my head on my knees. It was not fatigue, though I had plenty of that, or pain, though I had that as well, it was the almost physical SNAP back into my life, after hope was gone.

In the office, the specialist didn’t know or care about my conditions, and treated me as such, “Do this..”, “Do that…” all this a few hours after watching on Boston Legal one of the partners successful petition the court to force the hospital to KILL her father with a morphine drip because he had memory loss, long periods of dementia and incontinence. “He is a shadow of his former self!” They said as proof positive that death, that KILLING him was better than watching with pain, his fear, his limitations, his disability, his disease progression.

I too suffer from fear; many of my old fears have return along with new ones. Because I have seizures or TIA’s and cannot remember the events which cause the fear, I just have the fear: Fear of new night workers, fear of change of schedule, fear of things moved in my study because if I have a seizure I will never find them again. I cannot depend on my mind. My disease ALSO has seizures, and grand mals as part of its progression, much as Alzheimers does, the disease that makes someone a ‘shadow’ of themselves and thus worth killing. Or as the judge said, “I don’t play God, but here the patient is IN distress and there is no good reason for them to be so” (meaning that they should die).

Well, guess what, I AM IN DISTRESS. I cannot remember NOT being in pain, I cannot remember a day I did not wake because of pain, I cannot remember having the energy to get all ready to leave AND leave this apartment by myself, I cannot remember when Linda last laughed at something I said, or when I last laughed. I haven’t smiled once since leaving the specialist’s office. One of the theories during brainstorming with Cheryl was that the specialist might want me to have MORE seizure cycles, and larger ones, so that his job would be easier (the reason for removing the drug to both stop seizure cycling and the drug to extend the time between seizures).

I did not, I do not know what I am fighting for, and if I want to go to bed, if I want to get up, if I want to breath, I have to fight. It hurts to breathe, every breath. That is one of the reasons I am on pain killers. The left side of my body has atrophied so quickly that now my wrists instead of being “stick thin” actually bow IN (like the children you see on the starvation pledge drives in Africa). I don’t have any fingers left that are thick enough to hold my rings. But those are NOT the reasons I lay down my head.

I lay down my head because for a moment, the specialist was so convincing, in that all he needed to do was label me and I could go back to ‘normal’, that my hope for any sort of a better life, for ANY improvement in quality of life led me. It led me out onto thin air, because not being able to remember more than a day or two at best, being afraid of most people and not being strong enough to leave the house. He could offer me hope, help. And when it was taken away, I fell all afternoon: until finally I hit.

What is, however bad that is, is as good as it is going to get (the hope that Seattle holds regardless – a trip I FEAR, for the reasons that I am experiencing now, and HAVE experienced so many times before – If I have it there, then I truly am, just waiting around to die). This is the place where I am, and suddenly, I couldn’t find a reason to keep trying. I wasn’t interested in self harming, I wasn’t interested in even peeing, I just looked at where I was, at what was, and I have no plan, no dreams, no trip, nothing. I have no reason to raise my head in order to take the effort to transfer to the toilet so I could go to bed. What did tomorrow offer?

Sometimes, when I am doing a 10K in the racing chair or when I am challenging MYSELF, should wear a sign saying, “When I fall, LEAVE ME” because people don’t get sometimes that when the only thing that matters in the whole world is that 10K and finishing, then either you get up after falling, or you stay there until you CAN get up.

This is not one of those times. This is a time when I would say, HELP.

I am not fatigued, or burned out. In fact, I just did a post for The Postcard Project before this one. And I know full well that I am ‘but a shadow’ of myself, that people like it when the ‘old EFM’ comes out for a while. Except I don’t have the energy, the health, the ability to BE that person, not for very long. And yet, I am not going to wait around to die, or let someone kill me because gosh, it is so painful to see Elizabeth so feeble compared to what she was.

I wrote a new post, an update on the Postcard Project. And tomorrow, it is my intention to write to the CBC and CNN and MSN and anyone else who will listen to tell them about the Postcard Project. That’s why I wrote the post.

This is where I ask for help. Please, that in any place you can think to link or talk about it: anywhere there are people who are disabled, who are depressed, who are lonely, who are in isolation who need a tangible proof that someone cares about them, that you create a link to - the postcard project.

Why would I do that? Why, when so exhausted and looking at months and months before anyone will even, maybe officially help me, as I grow weaker, would I want to double or triple the work I do: that I PAY to do. Because I do not know how to make my life better, or make the spark inside of me come back alive, but I will damn well not give up on trying to make someone else’s life better. SOMEONE has to try. If this whole medical experience has taught me anything it is that SOMEONE HAS TO TRY AND CARE. Right now, I see the trees, I don’t see the blue of the sky, or the beauty of the leaves or the majesty of the forest, I only see a maze of unending trees/obstacles to nowhere. That is where I am mentally right now.

And yet, I will act as if I will one day see the beauty, be part of the beauty. Until then all I have to offer is what I right now, feel devoid of, the genuine caring which would make my quality of life better. The thing that would make me smile. A tangible something to make me believe again, that life is going to be more, than just “getting by one day at a time.” I don’t want to be “getting by”, I want to be glorious, to do amazing and stupendously stupid things just because they popped into my head. I want to take risks, I want to LIVE. And while I am breathing, one painful breath at a time, right now, I am not LIVING, and I don’t know how I will get there, but I believe I will.
And as much as one fairly ill human can, I will do what the USA promised and has rescinded, what Christianity promised and rescinded, that humans are not disposable. Send the word: that to anyone with a computer or with a friend with a computer and an address, send me your tired, your poor, your huddled aspect of the self, your downtrodden, your isolated, your bedridden, your unvisited, the people made invisible by disability and those who fight their invisible disability, I am here.

No, I will not give money, I will not give full replies to every email, I am simply not able to. But I will, if you ask, send a tangible evidence that I spent about three hours making something JUST FOR YOU. I can offer evidence that I care, and will continue to care about YOU. Please spread the word: to some, it is just a postcard, and kind of cool, and that is fine. And to others, it may be the only individually addressed and caring post they receive this month. I don’t make qualifications, if President George Bush asks me for a postcard, I will try to make him a postcard that will bring a smile to his face. Likewise, if Dr. Atwell-Pope asks me for a postcard, I will (though yes, I did put her under investigation) spend three hours to make a postcard SHE will enjoy, which will brighten her day. Quite honestly, I think there is a long list before either of those two are likely to ask, but that is the help I ask.

Because I don’t know what else to do. And because I know how much it hurts when you have a future that isn’t one, and you have a present day which looks very bleak indeed. I don’t know how to help myself, I don’t know what to ask for, but I know what I can do. I can make postcards. Help me find the people to send them to.


Anonymous said...

you are one incredible person

FridaWrites said...

I will post about the postcards. It's a beautiful project. I love seeing the beautiful images you have posted here on your blog, both the postcards and pictures of places you've visited, as well as the races.

yanub said...

I know just the place. I will leave early tomorrow so that I can stop there and tell them.

Elizabeth, I don't need the "old" Beth. I need the you that is. Every day's, every moment's incarnation of you is precious and worthwhile. You in pain. You in, I truly hope it is possible, pleasure. You in sorrow and in joy. Thank you for sharing so completely.

Rachael said...

You may be 'only a shadow' of your former self, but your shadow has so MUCH more everything than a lot of people's substance.
And I love it that your response to more pain, more distress, more frustration is - I wanna send postcards to MORE people - to care and show I care MORE. Brilliant....

Perpetual Beginner said...

I second Yanub. The old Beth was a wonderful person, but the new Beth is equally wonderful and precious. And if she's not quite the same? Well, none of us are quite the same as we were before, ever. You're just a more dramatic version.

And I can already think of about three people to spread the postcard project to.

cheryl g said...

Hey Sis, old Beth or new Beth you are still wonderful and eloquent and tell the story with the pictures as well as with your words. I have decided that One Sick Mother is right and hope is a sneaky bitch.

I will work on coming up with some additions to the postcard list and look forward to the next stamping and stickering bee.

I will also keep trying to come up with fun things for us to look forward to.

OneSick said...


I totally understand that huge crash that you get after seeing yet another new doctor and realizing that they cannot or will not help and you got your hopes up -despite yourself- for nothing. You feel very bereft and stupid (I do, anyway). I personally blame Hope. It is all Hope's fault. (

Well, I happen to lead a pretty strong online community of Autistic moms (moms of autistics, that is, not actual autistic moms), I can sling the postcard project link up there and you will be kept busy for some time...

Hang in there. I know with the thought of Seattle, there is probably a humongous fear that it will be yet another pointless visit and the last hope will be exhausted. I have had my "last hope" exhausted too, when I was refused treatment by The Chiari Institute, i.e. the Last Hope for those of us with Syringomyelia. But you know, it wasn't the last hope. I found someone else afterwards (through Blue cross, of all places!) who is world class, took me seriously and agreed to follow my case. You don't always hear about the beyond-last hope, but there always is one.


wendryn said...

I'll find a few people.

I'm here for you, old or new. I'm happy when I see a spark of fight in your posts, but I will read when you are tired and sad, too.

You write amazingly well, and the picture of where you are now was evocative.

Drake said...

Hi there,

I am not going to pretend to have the same trials and tribulations as you have... I do not sit in a wheel chair...yet, and do not have seizures, well not identifiable ones... Yet in a lot of ways, I am in the same boat as what you are. I want to say, I know how you feel and understand. We all need a purpose...and not just any purpose... a purpose to feel proud of.

When you spoke of your fencing talent, my heart yearned that my body was capable of persuing that dream. When you spoke of the atrophy in your hands and wrists, my heart sank. As I looked down at my braced wrists... and I thought... "Is that my future?". As it is, my passion for playing piano/keyboard has been ripped away from me. Just last night, I piled up the courage to hurt...not just my wrists but my very very being. My fingers are twitchy and unruly and even though I can still manage the pain at this point and just ignore it, I know that I will not be able to maintain a proper tempo or rythm or do a piece flawlessly.

I hate my self for putting my programming passion ahead of my music passion because if I hadn't, I could have made something of my music before all of this started and still be able to program as a fall-back plan.

Now, my other passion, programming has also in a way been ripped from my heart...not necisarily by my growing "disability", although I now have to use a pen & tablet instead of a mouse, but by corporate politics and greed. Nowadays, I struggle to keep up the pace, as I don't have the energy to fight my moral's and programming ethic's, just so the company can turn a quick buck...I once could... but not any more.

I want to break away from money grubbing companies and fast paced industries...but I can't. I just want to be my self and bring to the world that which I have a talent for...but it feels like it's too late. It seems as if I don't have anything to offer any more.

I envy and praise you for what you are trying to achieve, for if there is one single thing in this world that means's giving. Giving of your self to others. Making others happy, when you feel devoid of happiness and through that, reflect a bright light of happiness back into your own heart.

This life is not about how we look, act and what we can do... This life, is about how our hearts look, weather we act with our hearts and what our hearts can give to others.

What I have left, is not broken down musical talents...nor is it a washed up career. It is a heart that wants to give and keep on giving. It is a will to make others smile, even if it is just through opening a door or saying "good day".

The biggest gift and the greatest talent, in this life, is that of selfless giving and love. And from what I see in your post, that you have an abundance of and THAT is what you live for and fight for.

Dying is easy. Living is free. When you die, you lose the time you could have had. When you live, you have nothing to lose...

Abi said...

You are in distress, but you have a lot more "will" about you than most. You are a bit like water - you just keep going as long as there is a way to keep going - you are practically a force of nature!

I think that the best thing about the old EFM is that she felt less ill, and (I expect) frightened. I love the old one and the new one, and do not feel that you are short-changing me by who you are.

Also, you are being very biblical, in a New Testament sort of way (with the whole love vs indifference thing). It's rather amazing to "meet" someone like you. Thank you for putting yourself out there!

anna said...

I never knew any old Beth so I can't compare, I'll just take what I get:)

Donimo said...

I haven't been around in a while because I have been flooded out of my house and won't return for many weeks. I know your sense of time is f'd up, so I don't know how my absence feels to you, but please know that I didn't go away. I haven't been reading blogs because my computer set up is tough on me and also, I suppose, because my life has been a little too full lately. We had a sewage flood! Sh*t happens, eh? Anyway, when I get back online, I will link to your brilliant Postcard Project. Your postcards have really meant a lot to me.

I know you're exhausted by the disease and the ridiculous doctors. The neurologist sent you to the depths and somehow you have to find the courage to face someone else in Seattle. You have Cheryl and Linda and all your family here, trying to help you move forward. I think getting away from the toxic letters that your GP is sending to all your referrals would be a good thing. It's really hard to get away from things that doctors commit to paper about you. To a much lesser degree than you, I have experienced this destructive paper trail. Get thee to someone fresh.

I agree with others here that you are a compelling person as you are now. New Beth or old, you are fabulous. If you do figure out something that people can do to help you directly, let us know.

Neil said...

Beth, I treasure you. The 'you' you are now, the 'you' you were 11 months ago, they're equally valid. You may be losing bits, but you're gaining in experience.

May the experiences you gain tonight and tomorrow be positive, enjoyable ones. no seizures, no party tricks from the brain.

zen hugs,

SharonMV said...

Dear Beth,
Wrote you a long comment this afternoon, but somehow lost it in cyberspace.
The fact that your answer to despair is to reach out to others, to create a little joy for them illustrates how caring and strong a person you are. I am in awe of you, yes the now you, even the "shadow" you.

I'm so sorry that you're on this descending carousel of hell with the specialists. Not to mention the evil GP.

I was thinking about you all day. Dennis mailed out your package today. And I got another postcard from you today!!!

I understand your feelings about the Boston Legal episode. This kind of attitude about life & death pervades our culture. Denis' father passed away last week. he was in a coma for almost 2 weeks before he went. I was quite uncomfortable about some of the conversations & remarks made that Dennis related to me. Things like his Dad "would never want to live on as an invalid". I was thinking, how much of an invalid? I also began to think I should put some very specific instructions in writing in case medical decisions about me are being made by others.


Elizabeth McClung said...

Wow, one of the more unpopular post I see. Too bad, as it was one of my more desperate.

Anon: Um, er?

Fridawrites: Thanks, I appreciate that. Linda says (who tricked me out of my 8K!), I will get another race before the end of the year. I think I want that.

Yanub: thank you, I really appreciate that. I hope they were one of those who contacted me today.

I think I need the "old Beth", I need the convinction, the strength, the will, the perverse determination, I need that. I would like joy, perhaps I don't yet have enough pain to know joy. I will not let anyone who is sent to me down.

Rachel: well, I don't know, I think a lot of people hide themselves and I am not sure why. I want to send out more cards becuase that is what the ME who is out there, who will come for me, would do, will do. I don't know what it is yet, but I wrote Zed so that the ME that came after would know they were not alone. I write these so that they know the same thing.

Perpetual Beginner: That's just because old Beth would have taken up martial arts just to drive down and take you on saying things like, "Oh, getting tired, I only flew 10 feet that time? I thought you were good at this?" - I am sort of a motivator of bringing out the highest level of um.....a certain type of focus in people.

Thanks for speaking to people about the project, now as for coming down, remember, like terminator, I can't feel your blows - hah! However unlike terminator, when you break my ribs, I can't heal. So a small down side. Still should make an interesting match. I should take a few weeks of martial arts, except if I remember correctly, most martial arts is made up of kill or dislocation movements, which I won't do - it is against my credo.

Cheryl: Hope is the sneaky bitch all right. She's left me and she took her toothbrush!


One Sick: I would really appreciate you listing the postcard project, and yeah, I now blame hope, because I have crashed, worst than the time I came down with the "Danger, avoid!" sign wrapped around me before I bounced off the snow making machine.

I am really glad that you found someplace beyond hope - how cynical were you then, did you trust them or did they have to earn it?

Wendryn: I worked a couple hours on the pics. I bared myself. Thanks for finding some people. I will keep you and X to task however - do not lose hope, that is my job, keep going, please keep going.

Drake: Send me your address! I lust for your address.

Sounds like you are having a hard time of it, and having a bit of burn out too - with the programming end. I don't know what to say. I know what I would have said. If you want to play, take a tradadol and play!

Actually it turns out that dying is not all that easy. I used to believe that too - suicide is easy, living is hard. Dying, particularly from certain diseases is brutal, scarring everyone who gets close. It is relentless, it wants to take over your consciousness and your identity and you have to fight it, even though you will lose. Dying is very, very hard. Because I only have one chance to be the person left on the bed for Linda, and I could lose that; to being a mindless blob/or something they do have to sedate to stop from screaming in pain endlessly.

Abi: I will keep going, until I find the right engine to start again.

Yeah, like I said, I follow Christ, not organized Christianity. Oh, and I hope there is something showing up for your soon. I hope. Or did my brain do that thing again?

Anna: Well some days more of one than the other. We will see as more of the dementia and fear sets in - but thanks.

Donimo: I am sorry about your house situation since it is so horrid and dicken's isn't it?

Yes on exhausted, yes on not being able to fight anymore and Linda and Cheryl being burned out by the things which I used to bear.

Even if I figured out something that would inspire me or that I wanted, it would break my code to ask for it. But thank you very much for the offer. I suppose that is sort of a paradox, I ask for help, but then I won't say if I am hungry or thirsty.

Okay, I am lonely. I don't need people exactly, but I need to know that people exist, that this isn't just a hazy dream. I need to know that there is more than ME just to fight for. Or that I should not be ready to die.

Neil: Well, I sort of "lost" most of yesterday - which is this day, but that is stuff with Linda and other stuff.

Thanks I think - I hope your card gets there soon!

SharonMV: I was concerned about you, I worried that you were very ill and here I was not able to do a thing. I am glad the postcard arrived!

I don't see as what we do so different, you gift me, you send me packages, you do your art for people to enjoy.

Yes, needless to say, after my grandmother was put on a morphine drip becuase it was determined that she "should" be dead but was still out actually trying to have parties and get men to come to her room - I have extreme feelings about what and who gets a say if I go into care.

Sheesh, I mean would either of us "wanted" to be like this - probably not, but here we are making the best of it, right?