Thursday, October 23, 2008

Where I live

I wheeled down to the dvd rental place, had an argument which meant nothing and everything to me; a guy complained that ‘action films’ weren’t 'REAL'.

I told him, I’d try to make sure to have my next grand mal down here, since that seems to make people run like hell.

Then he got onto through guns somewhere, and this idea that if your heart stops, you die. I told him, “Yes, if it stops for like 2 MINUTES!” But no, he was convinced that if a valve stopped working in your heart you die, that your heart would EXPLODE! I told him, “put me on a monitor, if you want to see a heart stop.” My heart stops every day, it is part of the autonomic failure. And before that my heart beat so fast, it wasn’t pumping blood, and before THAT, I have a genetic condition which causes backflow in a valve. And between those, I have AV nodes in two different sections of my heart, which means two beats, or no beats, or a beat only on one side. And so to hear this person raving on because he felt his movies were “Accurate” enough, made me want to invite some EDS friends down and also the fact he seemed too DIM to understand that THESE ARE the actually conditions people live with, that people (like ME) do 10K races in wheelchair with. That people know SO LITTLE about disabilities and about how complicated the body can fail and you can still manage to live, that I felt even more alone. I struggled up the hill, I cried. I was too weak at 5:00 to get into bed unassisted.

Days like this I feel that sometimes the only person who really gets me is Death. And that he (or she) knows exactly what limits this body can take and pushes them again and again. And when I try to explain to people where I live. Where do I live? Okay, I had a connective tissue disorder my entire life which stopped me from being able to walk until my legs were operated on. Before that I was in pain that stopped me from sleeping and after that I was in constant pain. Pain that made me moan in my sleep. That was life. That was normal. That was jogging and playing the double bass until you couldn’t feel your arm and the bow fell out of your hand because your spine presses directly into your rib cage and there are nerves trapped there. Life.

Where I live now? It is not 10 times the pain, not 20 but often 30 to 40 times that level of that pain. I think of Cheryl and I wonder, how much more is her pain now to take a hike in the Hoh than her worse Ranger Training? I used to out-train everyone. People would be ill, looking at me, they would say, “You are insane McClung.” And I would be white from the pain and I would be standing there and I would say, “NOTHING is impossible.”

Now, now a “good” day is where I only bleed from one or two orifices. A good day is where the pain doesn’t make me pass out more than four or five times. A really good couple of days I don’t hallucinate from pain, or go into deep shock and STILL have to do what I need to in order to live. I don’t like talking about pain because pain is pain and everyone’s pain is equal, or individual. I am not trying to say, “Hey, I am the queen of pain hill!” What I am saying is I have had my limbs crushed in doors and NOT felt it because it couldn’t get through (turns out an air hockey puck at XX miles an hour to my fingernail tips did, for like, a minute – then it didn’t). See, I can fly OUT of my chair, bruise up half of my body (have strange bruises all over my left side which I can’t remember) and NOT feel it, not just because I can’t feel my body, but because SO WHAT. Drag me behind a car….so WHAT? I have my heart stop several times a day to a constricted vascular system. That used to send me to hospital, now it is under, “Irritating!”

I am sorry, you readers deserve better than this. But this is where I live. Today, in my condition, it was difficult to imagine me reaching New Years. I think, “Am I buying postcards that will arrive after I am dead?” Other days, the better days, there are more months. But it isn’t some imaginary far off “oh in six or 10 months or a year or two.” I will STARVE to death because you can now see my front and back of the pelvic bone as well as all my ribs and I eat what Linda eats. I will eventually/soon/already have the anemia count of someone with lymphoma. I can’t go to ER, I can’t go anywhere. I am OUT of time. I do postcards. I get frustrated. Read the last post again. There is something broken in me. It is part that says, “Nothing is impossible!” And it doesn’t mean I’m not going to die, it means I should ACT as if I am not going to die. It means I should sign up for boxing class when I haven’t been able to get out of bed for two days! And I can’t. I haven’t been able to smile. I wasn’t going to blog tonight. But then, I had made a commitment.


rachelcreative said...

Seems to me that neurologist visit had a big effect on you. But that neurologist was an ass.

I'm sure it's not that simple, the way you are feeling right now. And it's another huge knock back that you should not have to bear. But he is still an ass.

Go see the squirrels maybe? Stay in your pyjamas, put on a big coat, screw appearances and get out that door anyway you can. That's what I would do - but that's me. I find it easy to lower my standards ;o)

I still have the last postcard you sent me on the mantlepiece in the lounge. It has glorious colours - bright orange yellow. It brightens my day over and over.

yanub said...

So, that's where you live? Dang, girl, you need a roofer.

I'm glad you got into an argument with some random guy, though it is hard for me to figure out exactly what you were arguing about. (He actually thinks action movies are realistic? Probably also thinks the drama in pro wrestling isn't scripted.)

The bleeding out your orifices is not good, and is creepy, but it's also OK and sort of funny. Well, it was funny when I looked at Carapace today, and asked her what she had been eating that had dribbled out of corner of her mouth. Oh, nothing. She was just bleeding. It made for a great Halloween look. Though was less scary than the sound of her hips all day and the look of her finger when it dislocated to the side. A regular feast for the senses, if one's idea of a feast is on the ghoulish side.

Oh, I hope I can help you smile, or at least ease one line of tension in your face. I am not at all surprised that you have posted, even though you don't feel like doing it, simply out of commitment. You are incredibly steadfast.

shiva said...

I know i haven't commented in a while, but i just wanted to say: i'm still here, still reading, just not sure if or how i can produce any sort of meaningful response to a lot of your posts... which doesn't mean they don't hit HARD, both in emotional and literary power, because they do...

You've had a connective tissue disorder all your life? Which one? (from looking at you, probably not EDS... maybe Marfan's?)

Is there any chance that some of the stuff that the doctors don't understand and/or refuse to believe in is caused by them not being aware of and/or ignoring the connective tissue disorder? Maybe that might fill in some missing pieces?

Only asking because i don't think i've read you mention it in any of your posts about being unbelieved or treated like shit by any of the doctors or neurologists...

Elizabeth McClung said...

Shiva: It's marfans, I am sure I mentioned it because the "pain specialist" was more excited about having REAL female marfan's person in his office than my pain and got Linda to stand me up so he could see how extended I really was. Hey, my aunt has it too, so maybe I should given her number so he can call her up - wow, never ran into a Marfan's devo before (sorry but when you are there to talk pain meds, and he spends his time wanting to touch your fingers and comes over and checks to see how high the roof of your mouth is (high arch is a sign of marfan's), kind of a sign he is not mentally on the job!

Rachelcreative: Hey, you got it. I'm glad. It was very, well, I thought with your cameras and filter you would like it. The girl amoungst the orange.

Yeah, that neurologist was my last "Ass" - my one chance at having another nerve conduction test done (can you believe I have been asking for one) to try and track the amount of nerve degeneration since no one else seems to a) care or b) know basic scientific method.

Yanub: Yeah, let me bring Carapace in, I get tired of these guys going, "It's not 'real', that's not what 'really happens' when you take a bullet or get hit. Err, okay, you want to find out? No, it annoys me becuase most of us, with some aspect of our disability survive on a daily basis MORE than an action or horror movie will depict, and we just.....get on with it! So oh, "mr I want reality" - try checking out the local human population and what they are dealing with.

That was the arguement basis I think. Dunno. He seriously thought that if you got shot by a .22 you would die or fall down. I told him about some of the people from the civil war who had over 40 bullets in them, and people who came back from WWII and Vietnam with bullets in thier HEAD and lodged against thier heart. And how quite honestly, if I wanted to come into the store with a machete and cut off his head, unless he had a .45 and maybe wadspreader bullets, even in my condition, I would likely be able to decapitate him - just most people don't WANT it bad enough. I am sure you could decapitate him too Yanub!

Yes, try to keep the dislocations to a minimum BEFORE halloween - I am having some experience with them via seizures and turns out - not so fun - wow, big surprise. But then again, didn't go screaming to the hospital becuase Cheryl was there and went "Well, I COULD retract it (some word like that) but it would hurt a LOT more than is worth so wait for the muscles to relax and see what happens" - see, this is what I do between doing postcards. Your kind of stuff!

thea said...

That is pain, that is where you live. In that analogy, we all live wherever we live. And that's how things are. It's just that you reach out to a lot of us and meet us there too, so we see a bit of yours. Thank you for sharing. And that guy in the video store... if he maybe gets it one day, if he has some sudden glimmer of 'aha! that's how it is!' then, well... I guess you brought someone else into some understanding too.

I echo rachelcreative, if you can possibly see squirrels I am sure they must be therapeutic squirrels. Except the psycho squirrel that try to make it with your leg?

yanub said...

I bet she said "reduce," a word tossed about casually only in ERs and homes of people with EDS. Just try going up to an acquaintance with a request for assistance in reducing a joint. Oh, they look at you as if you had just beamed down from your starship. Or like you are asking them to join you in committing a drug law violation. Or both.

Silly how that neurologist was about your Marfans. But they do get like that, like Columbus "discovering" "Indians", while the Caribs and Arawaks are thinking "what the hell?" and the next thing they know is that they have been de-registered as human and re-registered as exotics who can only be made human again through complete submission to the new authority.

JaneB said...

Can't think of anything to say but... I'm here, listening, and caring.

thea said...

Oh yes love the drug law violatron.

Maybe that's the real reason Elizabeth's not getting proper care... because the ***s don't want to work for a koala.

thea said...

Oh no! I meant, maybe the stupid staff don't want to work for a druggie. Not a koala at all. Nothing to do with koala.

I don't know where the koala came from. Maybe it just wandered onto the road or something.

I just know every time I think of you now, Elizabeth, I think of koalas and people not allowed to hit them on the roads!

Um, that's the chemicals talking... shut up now!

Drake said...

Is it bad for me to say I feel ashamed of my ache's and pains...?
When I look at you and realise just how bad MFS can be.

I can't believe you were so active. I can hardly run a couple of paces before heaving and spitting ...buggered knees aside...

I totally hear you on the high-arch is that getting old. With all of those "quirky" signs that amuses the heck out of the doctors, how is it that a psychologist notices that I have MFS the moment I walk into her office, yet doctors couldn't figure it out for 29 years?

I think that guy at the store should come with me to my next Cardiologist exam... I have two "floppy"/"leaking" valves and a set of lungs that would put an elephant to shame. I should be the epitome of athletics...yet I can't out run a toddler ;D

All I can say, is * HUGS *. I don't know how you do it, but you are an inspiration to me...and I have only known you from your blog...and that in just two days.

Anna said...

In a way I am sorry that you seem down, and angry. It is natural, and I suppose angry was a way to survive your childhood. But isn't it a waste to be angry at things like the guy at the dvd/shop.

Anyway.... love the pictures but sorry that that is how you feel.

Devi said...

"I told him, I’d try to make sure to have my next grand mal down here, since that seems to make people run like hell."

Considering your description of that guy, I would almost say, "do iiit!" but that would be wishing a grand mal on you and of course I don't want that... If I could have a wish granted, it would be "no more ignorant people" (aside from world peace, but that would result from no more ignorance, no?)

"I am sorry, you readers deserve better than this."

No need to apologise; this is your life after all, and I appreciate the honesty with which you share it with us (though of course I would prefer you being not in pain).

Neil said...

It sounds to me like Marfan's might be a prerequisite if one wants to be a supermodel. I get my daily fix of cartoons on the 'net, some of them through the Seattle Post Intelligencer; there are links to fashion photos (some interesting, some gorgeous, most extremely silly) that show models with hugely extended limbs.

Come to think of it, my Beloved used to carry on about the height of the roof of MY mouth. I wonder if I have it? I am 197 cm tall after all...

It's Friday, so I'm betting that Cheryl will come a-visiting tonight. I'd vote for "let the squirrels find you" too.

I wonder if your video-store clerk thinks Wizards Chess is a real game? Oh, don't be too hard on him, though. He's only aware of what his friends can tel him through text messages. Tell him to study hearts on the internet.

I am fairly sure I have very little to help me understand the depths you're in at the moment, so I'll shut up and just say that I'm here, and still reading. I'm trying to hold out my hand to steady you, but it's a long way to reach, even if we both have Marfan's.

Sending positive thoughts and hugs as best I can,

OneSick said...


As usual you have very eloquently explained the inexplicable and have chosen some wonderful art to underscore it (love that snowscene!).

I have to admire you for getting into an arguement with a videostore guy who is probably the first member of his family to walk upright. Most of the rest of us would have rolled our eyes and rolled away. But no, you HAD to try and educate him, and I laud you for that.

On the beyond-hope doctor: I was less cynical then than I would be now, but I was still pretty dubious that he could help me. He didn't help his case at first by looking at my MRIs and saying things like
"that is a real syrinx"
"that is a REAL syrinx"
"that is a real SYRINX"

(ya think?)

Had I been in possession of my old reflexes at that time, I would probably had jumped over the desk, grabbed me films and ran. But he seemed faster than I, so I heard him out:

The fact that he had read all the documentation I had sent beforehand and then he read (correctly) for himself the MRIs I had brought along, offered independent opinions and then some pretty good analysis did sway me somewhat.

I have followed up with him since and he has proven that he knows his stuff, believes my issues are real and is willing to do what he can to help me, although I am not a surgical candidate (he is a neurosurgeon) and therefore not a moneymaker for him.

There are some smart and decent doctors in the world. The trick -and it is a VERY difficult trick- is finding them.

(sigh) I wish you lived nearer to NYC, I could point you to several docs around here that I personally recommend.


Diane J Standiford said...

YEAH! Give it to that video boy! I'm all for shoving reality in dumbnuts faces. My body is covered with mystery bruises. "I bet that hurt," I often say (like to the medic who stepped on my foot.) That feeling you lost, the one in your soul, will return in spite of any Dr.(most of them don't have it either.)

Lene Andersen said...

Dude's an ignoramus. People who don't have pain think it's the worst thing that can happen. We know different. Wusses.

The neurologist ought to be shot (just a little, in a place that hurts a lot) for pushing you into the abyss like this. Like your life isn't enough of a bloody uphill battle.

I am here with you in the dark. We all are. Trying to bring a little light in. A smile or two - you know I saw that as a challenge, right? I'm with Rachel - go see squirrels. It connects you to joy.

FridaWrites said...

You remind me to keep going every bit as much as I can too. Thank you. It genuinely does help. Too much I've not been able to get out either--but I will every bit that I can, and push myself more than I have.

Ooh, guys like the video store guy--some people think they have it all figured out and can't deal with additional information.

LOL, yanub, she's had enough roofers.

Maggie said...

Hi Beth-Sparky and I have arrived back on the West Coast. We enjoyed your wedding post card and look forward to you and Sparky meeting.
We also have presents for you so remember there are those who love and care for you--don't waste your time with those who don't get you or don't care to.
Lots of love-

Tom P. said...

Thank you. I know you take your commitment to your friends (your readers) seriously and I appreciate that it is not easy for you. So very seriously... thank you.

Veralidaine said...

Hey Beth, I saw you said on your last post that it was one of the more unpopular-- I don't think that's quite true. Your comments were messed up yesterday, I think maybe Blogger was making changes? They appeared differently for me and I think my comment got munched by the system, because it never appeared. Probably other people had the same problem. It didn't click over to this screen to make a comment like normal, the comments just showed at the end of the post but it didn't tell me my comment had been received when I clicked send.

ANYWAY, maybe it will brighten your day to know that I received a TOTALLY AWESOME SURPRISE from you yesterday!!! My heterosexual male roommate and my boyfriend are just going to have to DEAL WITH the boy love postcard being right in front of their noses on the refrigerator until I find an even more awesome place for it.

Actually, this gives me an idea. I put the boylove postcard magnet on the fridge, the men lose their appetites every time they look at it, and perhaps they will STOP EATING ALL MY FOOD! Beth, you're a genius! Oh, happy day, I can bring home brownies and not have them all disappear overnight! Perhaps I should cover the whole fridge in Yaoi...

I'm with Rachel. I say you should go see the squirrels. Except, screw the big coat, you're heat-intolerant anyway-- tell Linda or Cheryl to strap your cute self into the skimpiest corset you've got! If you gotta not feel pain on your extremities because of nerve death, it might at well be pain from "OMG squirrels' claws scratching my boobies because my corset doesnt' cover them!"

I think maybe the Nothing Is Impossible part will give the finger to the Realistically, Some Things Are Impossible part if you go turn a few heads with miniskirts and corsets.

wendryn said...

"I am sorry, you readers deserve better than this."

We're here for you. There is no "deserve", and we'll read what you write. Sometimes it makes me smile. Sometimes I am so angry I don't know what to do with it. You write. I read.

The pictures are perfect, as always. I do agree that you need a roofer. :P

I hope the weekend brings a little relief. I'll be thinking of you.

cheryl g said...

Guys like the video store dude have no idea what real is and they couldn't handle it. The phrase I have always hated is any variation on "I couldn't live like that." My reply is always, You would be amazed at what you can do because you have to."

How much more is my pain now? Well I do tell people that on a scale of 1 to 10, getting run over by a tractor is about a 3. That tends to freak them out and shut them up.

I think the part of you that says nothing is impossible is still there just a bit too battered to speak up at the moment. Your determination is still there. If you decide you want to do something (box, go on a trip, take a pole dancing class, whatever...) tell Linda and I and we will do our best to make it happen.

I do love the pictures. I think I know that corridor. The snow scene is lonely and peaceful.

Abi said...

I hate arguing with people whose idea of an argument is sticking to their incorrect initial statement. It does frustrate me so, and makes me want to shout at them. And they are just WRONG, and persist in their wrongness. It happens to me quite frequently.

What do we deserve better than? (Sorry - bad sentence - am tired.) You give us bits of you: caring, thoughtfulness, great writing, examples of perseverance, and more caring. I feel that you give me personally far more than I give to you, which I do not deserve, but in a different way to what you mean.

Thank you for blogging tonight. There is no obligation for you to blog every day, but I appreciate it (and worry less, mostly) when you do.

Tammy said...

Oh Beth. This sucks. I don't want you to live there.
I received the coolest card from you today. It made me think of "sleeping beauty" guy/guy style. So very pretty. OH...the stamps of the summer berries are amazing. You made my day. Yeah...another amazing card to add to my bedroom mirror. I see them first thing in the morning, and last thing at night, and wonder, think and worry about you each time.

Raccoon said...

Yeah, I think that little cottage needs a bit more than just a new roof.

Postcard! Who wants a postcard? You asked for us to pass the word, and lots of us have. Hopefully, you've received some requests.

It's not much, but hopefully it helps brighten your day.

Raccoon said...

Yeah, I think that little cottage needs a bit more than just a new roof.

Postcard! Who wants a postcard? You asked for us to pass the word, and lots of us have. Hopefully, you've received some requests.

It's not much, but hopefully it helps brighten your day.

JaneB said...

Incidentally, I love the snow scene. So peaceful. Any chance I could move in there and off these damn mud-flats? Depression to me feels like being on low, shifting, slimy mud-flats in a wide river (or estuary) in the fog - you can't see the shore, you know where you are is unsafe but you can't see how to get to anywhere safer, and there are all these shifting shapes and odd, distorted noises... and lying down in that lovely, kind snow looks so much nicer!

Hugs... and 'nil illegitimi carborundum'