Tuesday, April 22, 2008

Japan April 2008: dying and living

Tomorrow I am going to write about the missing part of our day in Tokyo, the fourth day of the trip; going to Ghibli Museum and how my novel, Zed, owes itself to Hayao Miyazaki.

Today I need to write about the ‘other’ trip to Japan. Donimo said that often she and her partner while often in the same spaces took “different” trips. Because as you may know I am often accused of ‘thinking too much’, there was more than a bittersweet aspect to knowing that you are going on a trip which will not, indeed can not be repeated. Because I go down a corridor, dimly lit, of uncertain length, but which only progresses onward.

For example, my loss of weight which has steadily and consistently declined over the months came to slap my face when returning from the Japan trip. We went to Seattle Tall Girl to get some jeans. Now, I take a size 15, 14 or 13 depending. Even anorexic, though I am not very big in the hips and once you get to the bone bowl you don’t really drop a lot of sizes. So, I saw a pair of jeans that looked good and I had been having problems even with my jeans belted up twelve or more inches, which kept sliding down in the chair. We tried size 13 of the jean, and they hung from me wide enough to invite a friend. Then a size 12. Then a size 10. I haven’t worn a size 10 since maybe 8th grade. They were still too big. So we went to size 8 and even though there was an inch or two of gap it was close enough to a good fit.

Then getting new exercise bottoms, because mine are all hanging and sliding around. I had dropped from a large to a small. That’s what I wear now, small, and jeans size 7-9. And that is just since I last bought jeans, I guess a year ago, maybe less; no special diet, in fact lots of Mcdonalds recently. I couldn’t believe it because I have NEVER, even anorexic been that thin, I mean my BONES aren’t that thin.

Well, that USED to be true as it turns out I am almost certainly losing bone mass and density too. If it wasn’t for all my shoulders from all the wheeling I would more than a size lower in Junior size, I wear a large (a large in JUNIOR at Hot Topic – I wear the tank top what your 16-17 year old wears.) If it wasn’t for my shoulders I would probably be medium, or will be soon anyways.

I did not know until Seattle how far it had gone but I did know, I just didn’t want to know precisely. I mean, my skin is falling off. This it turns out is as my capillaries withdraw. That has happened and keeps happening. My hair keeps falling out and I realized that right now I am both in the best/worst condition I have been in since I got into the wheelchair. I went for a wheelchair roll, about 9K, which took 1 hour and 28 minutes, up and down hills. It was the farthest I had EVER wheeled the chair, even last year, when I was strong I was looking for 5K or maybe a 7K. Now I am planning to do a 10K. My arms, while I wheeled had Reynaud’s clear up to my collarbone on each arm. The arms were stone cold, the same arms pushing for 90 minutes. And I am doing a 10K race in my chair on Sunday. Well, except I have to go in tomorrow because it seems the last 24 hours I have all the signs of congestive heart failure, but if that doesn’t pan out, I will be doing that race.

Oh, this really isn’t going where I wanted to go. There are a few things you aren’t supposed to say and one is that “I am very smart” (not if you don’t like being picked on in school) and another is “I’m dying.” So the actual ins and outs and details of dying are glossed over. The fact is that there are types of dying, degrees of dying and I honestly believe that I will live for a few years. I am not sure what “I” will mean by then however. You see, my circulatory system is determined to save my core, my torso and head and will withdraw from anything at sign of threat. I bruise, I have arms and legs flooded with blood; blood blue because it isn’t getting oxygen. Even when I wore the oxygen on the trip there were several days I couldn’t get my fingernails to turn from purple back to blue or pink. That’s because the oxygen wasn’t getting to my fingers. And the finger I hurt a week or two before the trip seems to have permanently lost feeling in the tip. Oh here I am drifting again. It is just the slight, the mundane, the little accident turns into something permanent, something which would have had me, and would have most of the population very, very concerned and yet, for me it is just another sort of ‘thing to remember’: can’t feel that finger, try not to let it get in the spokes where it will get broken.

This is what I think is going to happen, this is MY progression. I think that some, or many types of blood pooling or trauma or just body exhaustion is going to make my body abandon a finger or fingers or toes (or elbow, as they did in Kyoto) and then they will turn black and eventually the medical intervention will fail or fade and it will require intervention, or the capillaries and veins inside will collapse and withdraw. And that is when the gangrene will start. And then the amputations. Steady, systematic amputations.

You see, they can keep my heart beating, they can even keep my lungs moving but they can’t force it to covert oxygen and they can’t turn off or change how it moves blood around. On the last two days of my trip my entire circulatory system switched, and the left hand became the red hand and the right the yellow, and then it switched again. That won’t stop the TIA’s, I’ve already had at least one of those. So my language center will go, my coordination for the left hand is very poor, and my nose is entirely safe from ever getting touched.

I think I could handle the first amputation or the second. Someone has shown me that, you can get used to a lot. It is just it won’t stop, once it starts. And once I do get bedridden, once I stop pushing myself to the danger zone, or stop sweating, then it will all go faster – no sweating at all and just a speedy withdraw as my blood keeps retreating against an enemy which doesn’t exist; sacrificing fingers and wrists, and elbows to something that comes from a mad messenger sending loopy signals from the brain. And the TIA’s, well, that’s sort of like taking a gun to my brain, a little bit at a time.

I enjoyed the trip to Japan: I engaged with anyone I could, I fought injustice as I saw it, I thanked those I saw and those who helped and I savoured it. I also almost wheeled myself down into the track in front of trains about 10 times. When you pray for a massive stroke night after night then maybe things aren’t looking up. And in many ways my illness has provided me the chance to become a better person, the opportunity to meet people I am proud to call friends (lucky really). But I am terrified, terrified. I lie in bed terrified. When people have tried to duplicate half of what will almost certainly happen to me, they have been called monsters, they have been executed.

“This,” I said to Linda in the Ghibli shop, “This is the card (it was a 3-D window card), I want at my bedside (once I am primarily in bed).” In my thoughts it was that this is the idea of the idyllic and the verdant I want to hold on to. I wrote some of my fears to a friend in an email along with talking about the pain, the pain in my bones and so bad that I believe I must have cancer. She wrote back and cheered me up by saying that I certainly almost wouldn’t be able to recover from an amputation operation, with my compromised system. I certainly wish she isn’t just offering false hope.

No, I don’t go around saying, “This might be my last….”, but I am more afraid of what I would become by living than I would by dying. Could I be a heat intolerant torso and some stumps and still be me, assuming there wasn’t a great many TIA’s? Of course, but it scares me, the on and on of it. I want to live very much, because I like being alive and the possibilities it holds. Now, it is the probability of those possibles which terrify me.

I guess that is what put me in shock about the clothes, knowing I will NEVER be a size 12 again. Because I am eating; I am eating carbs, and I am losing weight. I never knew how much it meant to have a body until it started changing without me. I have hypothyroidism, I sit in a wheelchair and I am using a smaller seat cushion than a year ago, I am significantly thinner and I sleep the majority of the day. That shouldn’t be possible.

It just seems that there are worse things than being bricked up to starve to death, there are worse things than a pit and a pendulum, there are worse things than dying. There is being kept alive.

I am sure that I will absorb this and come up with new plans and schemes, but this isn’t post “dream trip” blues talking, it is just, I didn’t want to ruin the trip for others by putting in what was increasingly on my mind. Maybe because I have to write a horror story and as much as I think about it every day for the last several weeks I can’t come up with anything really much more horrible than what I know is coming and is already here. Northing more horrible than being Linda and watching it happen to someone you love.

I did not use my blood pressure cuff on the trip, because it was not going to stop me doing something. Indeed only passing out or heat exhaustion seemed to stop me because I did not know how to come back home. I knew how to pay that price for the bamboo path, or the nights of old Kyoto, or the geisha district of Kanazawa or getting a Kimono. I don’t know how to pay that price for getting up, getting showered, getting a sandwich.

I wish I could pull this all together, to make it poetic and neat and artistic and not a vision of me, lying there a torso and a head like Johnny Got his Gun from Trumbo, only not from an instant of walking on a land mine but a year, years of losing parts of me physically and mentally.

Here is a short film called ‘On your Mark’ from Miyazaki which has never been released that I know of, it is six minutes and tells a story without words. I think you will like it in itself. Before I left for Japan I started writing Miyazaki a letter, because he is obsessed with flying and his films are about flying. I wanted to ask him to do a film about disability, because I think we know more about and we have to learn to spread our wings more than many other people. And that life in a bed can be a story of flying.

37 comments:

Stephanie said...

Keep on flying until you think you can't fly any more.

Then fly away.

SharonMV said...

Dear Elizabeth,
If you have to think these thoughts and want to write them, then I'll have the strength to read your words and never stop caring.

I've been sick for a long time-years & years & lived with the losses(no career, no child, no PhD,no friends, no more reading Greek & Latin, hiking, a hard life for my husband).A mystery autoimmune illness plus chronic infections, plenty of pain & sickness, but it "wasn't going to kill me". Got Grave's disease (thyroid), several other things along the way Then I got worse, no more little garden on the deck, no more needlework or art, no more, going out on my own. Then I got diagnosed with Lupus & CVID ( a primary immune deficiency- an bad or improperly treated infection could have killed me) in 2006.
so I'm a bit of a paradox - my immune system makes antibodies to attack me, but few antibodies to fight disease. Got treated, but not much better. Have been housebound over a year. Then in Feb my Achilles tendon ruptured from chronic damage from Lupus, so I was stuck in my room (and using a wheelchair). But at least I know its temporary. And then I found out that my adrenals are also failing. So another system is falling apart - but it's treatable & could mean I might have some energy again - be able to do things. But must wait on more evaluation. Then dr is worried about persistent high white count & so I'll probably need to see a hematologist to check for leukemia.
I'm betting it's just a resitant infection & not leukemia, but still I think about it. Fri I saw the pulmonologist to check my lungs out for permanent damage.

Sorry to ramble on with all the background, but heres what I wanted to tell you. I think I'm coming back. I mentioned before how Itook a lesson from you & gathered my card making supplies in a tote, so I can make cards up in bed. I haven't made one, but I'm definitely contemplating a card. And then Friday, I went (hobbled) out on the deck and enjoyed seeing the trees & bushes on the hillside. I surveyed my nearly completely dead container garden & watered those plants & weeds still growing. And that evening I bought some new needlework charts (designs) online
So even the threat of leukemia hanging over my head, the addition of yet another autoimmune disease and the fact that I'm still sick with constant respiratory infections & Lupus flares, something is stirring in me. I think I'm coming back. I'll be able to do some of the things I love, create art, maybe be able to get out among people again, to enjoy nature. And I think you are part of it - some tiny bit, some small spark of the Elizabeth McClung magic has taken root in me.

Think the dark thoughts,the hard truths of what may come.But live in the present moment, taking whatever beauty & joy you can. And then see with you inner eyes the crane walking towards you, the Geishas on the bridge, the cherry trees, the bamboo path, the dark, lantern lit streets. And remember all of us, with whom you shared these things.
Sharon

Hala said...

Wonderful. I'm glad you wrote this. Because we don't write about dying much, do we? I'll write about the trouble walking and the sexy chair, but not the aspiration pneumonia because, you know, that could very easily do it any day now.

For what it's worth, I don't think it would go down exactly like that with the operations; I don't think people with systems like yours (or mine) get to go through a systematic series of surgeries. Although never underestimate the power of the will, I suppose.

I'm a huge Miyazaki fan.

yanub said...

"On Your Mark" is beautiful. I know I will be looking at it again, and thinking about it. It would indeed be wonderful if Miyazaki would do a film about disability. Now that you mention it, he seems a natural choice.

Elizabeth, I don't know if you will lose limbs or brain function before you die, but I have a strong suspicion that you will find a way to live until you die, much as you did on your Dai Bokken, much as you will when you do the 10k. Your medically ill-advised risks, I think, will be the death of you. And I mean that in a good way. I figure you will go out sucking the marrow from the bone of existence.

elizabeth said...

I got your postcard today. It brought the biggest of smiles to my face. I love the photo sticker. You really did it! You went.

Now, plan your next adventure. Whatever it is and continue to inspire others by being you.

Lene Andersen said...

Thank you for sharing that. For not making it about truth and not covering up.

I haven't known you for very long, but I know this: you will always find a way to fly. You're like an eagle - a wild, fierce, beautiful creature who flies where no one else can.

em said...

Thank you for writing this Elizabeth. Saying the things that we are not supposed to say falls to the artists, and it is vital to all of us that those things get said.

I held my breath it seems like the whole time you two were over there, because I wanted for you to have frivolous moments of buying Hello Kitty vending machines. Frivolous moments to balance out the horror filled ones.

We are all dying, but some of us can pretend we aren't. I hope you finish that letter to Miyazaki, and send it, (I often write letters and then don't mail them.) because I think that something gorgeous could come out of it.

Mostly I'm just sending love. Your writing has changed me. I'm grateful for you.

Perpetual Beginner said...

That was a difficult post to read, but a good one.

We (North Americans at least) are very afraid of death and dying. We try to avoid noticing their existence or mentioning them. When someone talks frankly about their own mortality - especially when it's impending mortality - there's a tendancy to resent them, to change the subject, to do anything other than actually face the truth that the people we know and we ourselves will suffer and die.

I wish I could give you all the good things you deserve. It hurts that all I can do is read and respond - to be one more ear listening for as long as you need me to listen.

Cindy

cheryl g said...

Just so you know, I intend to take the entire journey with you and Linda. Love you both Sis!

Dawn Allenbach said...

I watched an episode of Babylon 5 this morning, and there was a great line: "If you find yourself falling off a cliff, you might as well try to fly."

You're already flying.

Lene Andersen said...

A-hem. That should be "for making it about truth and not covering up."

I figger you know that.

Victor Kellar said...

Thank you for that. Your honesty and your insight has opened a door inside me that has been closed for a long time.

A lot of people should read this. This is the truth and we always need that.

I sent you an email. I hope you read it and I hope you know how inspiring you are; not in any maudlin movie of the week sort of way but in a way that is human, scared, brave, sad, silly, angry and poignant.

The anime was beautiful. Even thinking about flying means that you are high enough already, to feel the air.

FridaWrites said...

You are and will be beautiful no matter what happens. I'm glad you went to Japan, and I'm very glad to have the opportunity to read your thoughts. You say you wish they were poetic, but they are more poetic than you know.

Elizabeth McClung said...

Stephanie: Thanks, that was very poetic and gave me the acceptance I needed after writing the post

Elizabeth McClung said...

Sharonmv: Thank you for reading, even when it isn't pleasant. And thank you for sharing your journey and I wish, without seeming ghoulish, I knew what you did or how you dealt with or survived each loss after another, each step your body which took you further away from "everyone else".

I will go on, but I need to find some way to as I said to linda, "see love AND this future coexisting" and I think that includes personal passions as well. So now in your comment have given me something to look for, something to co-exist. A friend with Aids talked about learning to live with the monster in the house. I was ready to have a massive heart attack at some point; but with the information before I left about my heart being sustained, I wasn't ready for the me that lives on. But I will be, I promise.

Thank you for listening and honestly, the joy and the enjoyment do co-exist, I just needed to share some of the thought of night, and of moments in shops or looking over a beautiful shrine and the realization that I should not, MUST not dream my way through the trip, that I should know what it is, and why it is.

Hala: Thanks, I did a very ramble job and just felt that I needed to be honest about all the trip and such. What scared me the most was how often I would NOT pass out, how my limbs would go colours, my arm would go BLUE, I would feel like I was rupturing and I would still be conscious. That is when I feared that my body: which got ill at its athletic prime and kept as athletic as possible would betray me in survival on...and on.

I also think that any surgery will be/may be too much for the system to handle, then maybe systematic organ failure or stroke. Cheery, eh? Tomorrow (or tonight will be Tokyo, I promise!) I'm not going to spout crap about flowers being beautiful because they die I'm justing saying that knowing, and knowing the "any day if it goes wrong" produces a filter we see through, one often unnoticed, but then, sometimes, very noticed, if you know what I mean.

I'm a major Miyazaki fan too (oh, please stop sending over dubs!).

Yanub: I do think that I will live until I die too, and as I said to a friend, "What difference will a few TIA's make? It just might make me easier to understand." (sick humor). I have learned, mostly from the people who read this blog and thier own life stories that you can stay still, waiting in fear that nothing bad will see you or you can learn to fly, even from a bed, or with dragonspeak or with whatever limitations you have.

Elizabeth: I'm glad you got the postcard - now we have to go drinking! I guess I missed the "stiff upper lip" part, or maybe when I came out, I decided that living as living instead of as lying makes the good times better and the bad times just intervals. I'm just a little concerned that I have run out of tricks and my body is changing without my consent (how dare it!).

Elizabeth McClung said...

Em: Well, I'll write this hard one but not the "Gosh, I'm so smart" one, I leave that to someone else (Didn't Bill Gates do it already?). Yes, I wanted the frivilous moments too, and the moments of surprised wonder, and I got that (and arguements with JR and hotel managers that heat isn't actually "air conditioning"). And I am glad I went, but I'm not pollyanna and clueless about what I was doing to my body while I was there, it is just, I could choose not to face it (until it was flopped upon me). And ever increasingly now I do. But this too will become normal somehow, I just need to balance the horror with love and passion. Thanks for being there for me.

Lene: Thanks. I know we (I think there is a "we" and it is not just me) feel these things creeping in on us, but how or can we articulate them. My fear was "poof" everyone would go away because I wasn't what I was supposed to be. I never promised invincible, just idioticly daring.

Perpetual Beginner: Yes, it seems that the only health news is that if you just run enough, eat enough flax and do X, Y and Z that you will never have to face what caused the pharoahs to build giant pyramids to try to escape and avoid.

Thanks for listening, I think my culty background would say that either a) God REALLY loves me to 'test' me so much or b) I AM getting what I deserve - which is why I avoid a lot of culty or related branches of Christianity who preach health, wealth, blah, blah because what, I just need to repent a bit more? Oops, sidetracked. Who will take care of Linda?

Cheryl: just so you know, I intend to take you with me, already tried to sell YOUR soul to the devil, but he said it was already morgaged, what is that about?

Dawn: Well, yeah, better to fly than fall. Though I kind of think doctors are bit like the people who say, "Don't look down" - what do they EXPECT me to do with the 'incurable' info, file it next to, "Books I bought to impress my friends but will never read"? I think about you; since you seem very good at getting on with getting on, and wonder how you do it - probably a minute or a day at a time, I guess.

Victor: I got the email and am working myself up for it emotionally. Thank you for honoring me to send that email.

I think calling me a human or the inspiration of the paradox of being human is a great compliment, one I try to achieve.

I think I like the video becuase it shows the possibilities and even the worst one is still about TRYING.

Frida: Thank you very much, I will keep on keeping on and one thing I fear is how much can I lose as still be...I dunno, human? Female? I mean when you start to look like Gollum from Lord of the Rings there is a bit of an identity crisis.

Abi said...

I picture your readers all gathered around you and willing you to fly. Metaphorically, it would appear, they are (my mental image is a bit more literal :-)

That blog post was incredibly beautiful; I feel honoured to have read it. Thank you.

Heather said...

We're all moving toward death but most of us don't see the unchosen death as clearly as you have been forced to. And most of us don't chose living as clearly as you have.

cheryl g said...

Wait a minute... when I signed that contract they promised me I would be able to take out a second mortgage...

sarah said...

thanks elizabeth, again, for giving so much of yourself on this blog for people like me to read. i can't think of anything else to say, just crying because of the sadness of what you are goign through and also the beauty of your spirit and also because i am grateful to you for writing things that help me understand my own and donimo's lives better. i wonder when you will be up for vancouver visitors.

Dawn Allenbach said...

We're both progressive and degenerative, but there are two big differences:

1. You progress and degenerate much more quickly than I do.

2. This is all I've ever known, all I can ever remember being. Sure, there are days where I wish I could still brush my hair or wash my dishes or scoot on the floor. EVERY day I wish my back was getting straighter or at least not getting more compressed which caused my vagina and part of my butt to go numb almost a year ago and is causing more and more problems for me to urinate.

Some days, *I* don't know how I keep on keeping on. Guess it's as I've said the last two years with doing this Ph.D. -- I'm either too stubborn or too stupid to quit.

Marla said...

Stephanie's comment made me cry. It just hit a nerve with me. Now, I can't read the rest of your posts because I am a mess.

Thanks for the post cards. Hugs and more hugs. Always thinking of you and your struggle. Prayers being sent.

Raccoon said...

After reading that, I think I sent you the wrong song.

Tears again. Makes it difficult to read your post, or to write comments.

I never used to get this racked up emotionally -- I think I've cried more for you than I have for myself. Is that good or bad?

SharonMV said...

I'll try to answer any questions you want to ask. And I'll share more of my story if you'd like to hear it. I'll send you an e-mail soon. I wanted you to know some of what I've been through just to show you why your blog, your trip (& you) now, at this particular time, have meant so much to me.
Sharon

Elizabeth McClung said...

Abi: Thanks, I am not ready to take off yet, but I do fly when I need to. Thanks for the support.

Heather: yes, it is a sort of full body "Flowers for Algernon" experience which I find so horrid, the very thing I need to take for granted slowly slipping away while I am still here, with enough nerve endings to pay the price.

Cheryl: You know during an election year there is always a glut on the market and a downturn in those morgage clauses.

Sarah: Thanks for letting me know that it did something, it meant something. And I am, I don't want to say sorry, becuase I don't pity you, I emphathize, I want to change things or wrestle angels but nothing so passive as pity, but that life would be different for you (and us, I guess). Vancouver visitors no problem, getting there without a crash....a bit of a problem (vancouver is BIG!).

Dawn: Yeah, those are kinda differences but still, maybe not so different I mean, like you say, you are degenerative and you are progressive and you started......what is usually a 5-7 year degree program? And you moved 1000 miles. So I like that. And the creeping loss and pain sucks. Maybe stubborn AND you like it?

Marla: Sure, I hope maize liked hers (I hope she got it!), and thanks for listening, I didn't exactly mean to spread the dread around. Sorry.

Raccoon: Thanks. I think it is because you have enough experience to know, KNOW what loss is and what looking ahead to that not so slow progression would be. And what do we say when we have to face it? I don't know.

Also when I cry about someone's disability blog it is becuase I need to believe that there is a holding on, that THIS time I won't lose anyone, or see them suffer, even if just on-line.

SharonMV: thanks for sharing that and I would like to know - what do you do when all the doctors at the hospital know you are untreatable or that any form of conventional treatment is a crap shoot since no one knows what reaction you are going to have. Sorry, that was probably more my story.

Veralidaine said...

I'm here. Like always when you post these poetic, but scary, things about dying, it's hard for me to read and impossible for me to come up with anything to say that would have enough meaning to compare to the self-disclosure in your blog.

But I'm here. I'm reading. I'm trying to understand.

Maybe you could fly- in a glider? I see sit-down gliders floating around near Mount Zion all the time. Might not be terribly easy to land one, though.

Disabled Giant said...

Thank you for your post, you raise so many important ideas and express them so movingly. I have a little taste of what you experience with the issues of weight. If I’m even slightly less than perfect about diet and exercise I drop down below my ideal weight. It means my clothes hang wrong and when I look in the mirror I’m reminded that my body is closer to the end than my age would suggest. I know I can still do all the steps and keep my weight up. It means a lot to me to read your experiences and your willingness to fly, no matter what.

The Goldfish said...

I'm very slow commenting just now on account of being rather stoned on new painkillers penguin.

I guess the real crappy bit of your experience - I mean the bit that's worse than for other people facing functional loss and a young death - is that it all so mysterious, unpredictable and thus extremely scary (did you like what I did, brushing over the loss and death bit?).

But it is my belief that you will have some choices as far as the future is concerned; none of them involve getting up, returning to your old life and living to a great old age. What I hope you will get some control over is how you get to go. If you don't want to be alive at any point, you don't have to be. You don't have to be now, but you choose to be. Which is nice. But it's not like something will suddenly happen to remove that option, at least not in any of the scenarios you describe.

As for the idea that your body might slowly rot and be chopped back and back, amputation is a massive shock for a body; even for healthy people there's a significant mortality rate and I think doctors would think twice before proposing any kind of major surgery on someone with your ticker.

You are deteriorating and fast and to be completely blunt, whilst I reckon you probably do have a couple of years as opposed to a couple of months, I can't imagine it will be slow once it really gets going. You have a fragile heart (in the physical sense; quite the opposite in other senses) and that's not going to take a great deal of stress or inactivity. In theory they could wire you up to a life-support machine and keep you alive no matter what, but in reality they won't.

I think this might be a rare case for doing some serious health-related research to explore your own personal worst-case scernarios. So you can identify what might happen and at what point you'd feel better off getting out of the conga-line (and if there are such points, maybe you can talk to Linda about where they lie so you're both prepared).

I know it's very painful and unpleasant now, but you are still able to do so much and you are still, so far as I can make out, enjoying your life. In between being shit-scared.

Since this is already a comment of epic proportions and dubious pertinence (I really am rather adled by painkillers so if this is totally off base in some way please forgive me), may I take this opportunity to thank you very much for the postcard, which brightened a bad day. It was such a funky picture and cheered me up no end. :-)

Gaina said...

It's far more damaging to the soul not to write these things down that it is to face the consequences of sharing them.

I'm going to be random and practical again. I have found one thing that works for my poor circulation (blue feet with nice salmon pink blotches, anyone?) and that is an apple, carrot and ginger juice - 1 small apple 1 carrot and a 1 inch piece of fresh ginger.

If I were you I would talk to your doctor about your fears for the progression of your illness like you have done here, so at least they can tackle symptoms as they arise and arm you with more information.

kathz said...

I can't tell you how much I admire your courage in facing up to death and the loss of so much. And I also admire your ability to live intensely and to share your life with others.

Elizabeth McClung said...

Veralidiane: It is okay, I am mostly self disclosing for disclosure sake. Actually I've looked into doubles with hang gliders (the instructor does the work and you just fly).

I think however that having a disability requires you to fly beyond the self, which is suddenly so burdened; not as often as one would like, but in order to survive mentally, you cannot stay forever on the ground.

Disabled giant: thanks for posting, but what a one to start with eh? I don't know, there isn't a protocol for me, but I make what I have to. I do know the feeling of having a health regime without control, where you MUST do X or Y will happen and it is not a pleasant place.

Goldfish: ah ha! First, I really want your pain pills, because they sound very good and make you very lucid.

Well, you do get to the point, which is good. The simple fact is that I do not believe that the medical doctors will do much of anything at all (which is why gangrene seems likely) becuase, for example the heart specialist is so far behind in what is going on that he is operating out of Dec 2006 I believe which is why I am getting my long term care from the ER, my GP wants my neurologist gone and a real one to replace her (And with the recording of the last session, I don't see that as hard) and even the specialist who do know what is what say, when it comes to me, they don't know what is what - nothing works like it should. Indeed if I did not start off with a top notch body with over a decade of marathoning, mountain hiking and such I am not sure how long the bod would have lasted. I suppose a great part of my fear IS that I will survive....whatever: amputation, etc. But you are right in that liver overdose is a cupboard away.

At least you do talk bluntly. I am curious at what you see as "fast" once it gets going since all the medicos view me like some sort of human water as they see me a couple months later and I'm, "No, that doesn't work anymore; no that doesn't either." But then, I guess I don't know how long the fall is really, since you tend to think, after changes that take up to decades in something like MS in a year that you have gone a long way, but probably not. Sure, lungs don't expand properly and only one really converts; heart is continiously erratic and now the circulatory system is playing footsie on where it wants to be. But that doesn't have to mean death; there are OTHER ways to get sustaining fluids and OTHER ways to breath, so how far is it really? I don't know, none will answer my questions except my neurologist who lives in some alternate denial land who has revised her "You will live until you are 60" to "You will live two years maybe" or "You could concievibly live five years" - however since it was only six months between the first statement and the second and third it makes me wonder what the statement in another few months will be. Everyone else just says, "Try not to think about that" which is usually a "Oh shit, it's that bad?" kind of feeling to that response.

I wish there were some other cases, which I guess means writing mayo or Chicago or somewhere who does see progressions and find out how fast is fast,

And you are right in that I can still do a lot, even sitting at a computer is doing a lot - I may PAY for it, but the future will bring a time I pay for it and can do nothing at all, right?

I have a living will but I guess I do need to talk to Linda bout alternatives, I guess the other worry is that medicine in Canada is almost entirely reactive as in: Oh, you've HAD a stroke, when then we can help you live with that though this four year therapy plan. When facing someone who might get strokes say, every month, they just give up and suggest a palative hospice (I think they have tried to 'suggest' one for me about three times).

Thank you for your comment, particularly about the perspective that I still CAN enjoy life, and maybe I should leave the worrying until I can't at all (except that no one seems to really be keeping track of these things except me?).

Gaina: I think I will talk to my doctor about progression since I now have more physical evidence, though much like "red side/yellow side" - he saw the arms, he saw the pictures and he said, "I'm a GP you know." haha.

Dawn Allenbach said...

I'm hoping to have the degree finished by the end of next Summer, and that would put me at the end of my fifth year. Everyone tells me that if I finish in that amount of time, it would be "an amazing accomplishment." I haven't figured out if that's a normal comment or related to me having a disability.

Neil said...

stephanie: That's beautiful. You have a lovely way with words.

Dearest Beth: in 1989, my immune system began attacking my kidneys, and I had a few days of terrified wondering what was going to happen to me. I was convinced I was going to die while waiting for a transplant. And the biopsy that I will NOT describe again occurred on the day of our second wedding anniversary. As it turned out, there was some medication that helped, and I was fine for a couple of years. Then it started again and this time I'm on blood pressure medication to reduce the pressure in, and thus the stress to, my kidneys. The kidneys are functioning fine, but I lose a bit too much protein in my urine. Normal is under 0.26 grams per 24 hours; at one point I was losing over 12 grams daily.

I've had, therefore, my scarey dying thoughts. Sometimes I still do, and yes, the nights are the worst, aren't they? But my scare was nothing next to what you and Beth live with daily.

Despite the certainty of death, and its possible proximity and disagreeable nature of its arrival, we do have to live while we're here. And I think you're doing a wonderful job of living while you can, Elizabeth. So I'll believe in miracles, and pray that you can at least get a diagnosis before you cash in your chips.

Meanwhile, you just keep on writing as long as you can. We're here for you.

Interesting movie. It makes me wonder how wings would work on a human; after all, a bird's wings are its arms. Angels must have a really weird set of extra muscles hidden away.

Thanks for the movie, Beth. And thank you both again for the card (I'm replying in reverse order tonight).

Reading, crying, caring...

Elizabeth McClung said...

My doctoral program had a 90% failure drop out rate, I think many people start the program and few finish so finishing IS the success - I choose to view the statement that way. And five years is a pretty fast progression as I know friends who took five years to do MASTERS (not the highest motivated people admittedly)

rachelcreative said...

You have some very wise readers here :o)

I suppose if this next part of your life (and your dying) came with a manual ("you will lose limb x and feel xyz") you would throw the manual out anyway and do it the Elizabeth way.

I welcome you talking about dying and life. I too thank you.

I too am already a changed person through your blogging and know that along the line that will have a ripple effect on the people I touch too.

Your blogging, your living, your dying, your thinking, your actions, your knowledge, your ideas, your fears, your understanding, your insight, your words ... have value that I cannot quantify.

Elizabeth McClung said...

Neil: I'm not saying I am GLAD you had your experience, I am not, it is just easier to understand the sudden facing of the reality, the many realities of what a world without you in it might be. And what the world with you in means to you. I am glad your kidneys are stable.

For me it is the incredibly rapid shifts in condition, from feeling okay to feeling nausous to passed out to can't feeling an arm all in say three hours and having some things (like for instance the oxygen not getting to my fingertips and nails) not changing back, just like that. And I have to accept the new reality, and wonder how long until the next new reality. It is a very passive thing, watching yourself go like that, and I am not a very passive person.

glad you liked the card.

Rachelcreative: I really liked what you said about the manual and me throwing it away and making up my own becuase it is obvious that you know me too well, it is exactly what I would do. I would, "This is "statistical" and I am NOT a statistic!"

Living and dying are supposed to be parts of the same cycle, it is just since everyone hides one; even my mother, with a severe disability for a couple decades now and NO ONE knows, she works so hard to hide it. Well, when you pass out here there and have people look at you because you are funny colors you can't hide it - so what to do. I think in "olden days" I got shipped to arizona to a TB and other issues place to sit in the sun. What boredom, eh?

Paula Apodaca said...

Elizabeth,
Writing about dying is something beyond difficult. I know, for me at least, it creates all kinds of upset among my family whenever I write about such considerations. I attempted a post on it and then strayed from the point a bit and left the whole thing obscure.

Thinking about the end hasn't got anything to do with anything other than a natural certainty of our own mortality and a curiosity to see where we will wind up.

Keep writing, expressing, and challenging all of us.
mrspaula
http://www.epilepsy-paula.blogspot.com