Friday, December 05, 2008

Multiple System Failure: denying death and how to 'splat'

The good news for me is all systems seem to be within normal limits (passing out and purple hands ARE sort of normal limits) a sort of status quo, or rather a little lower than status quo. That is thing, I never get remission, I return to 90% or so of what I was only a few days before and that is as good as it going to get. That’s what we are used to now. Indeed, what should be frustrating is how I am already used to now being housebound. Where is my will? Tired I guess. Or hibernating, that’s a better image. Okay, time to sum up what has happened and is going to happen with the blog.

Why aren’t I dead? It is a good question isn’t it? I only noticed when the police gave me the “evidence” of my homicidal tendencies (the blog about Linda’s bosses and my financial and anxieties of where I will end up like in a “home”), that I went through a period early to mid November where I thought “this is it I am going to die.” Then two weeks later I wrote about stopping breathing, and how long will it be until I die. So the problem is, HOW LONG?

It isn’t quite that easy. If I had cancer, there would be 10,000 other patients who had died in front of me and they could say, “Based on that, I think you will have X months and it will follow this progression.” I don’t have cancer as far as I know. My primary disease is rare, and how it affects systems is unusual and it seems to jump around a lot. That is the whole “multiple” part of multiple system atrophy. But hopefully in Seattle, and we have/are already reserved tickets for that, the date for the MRI is being set up here in Victoria so that will go to them as well. And maybe they can tell me what the progression is. And then I will tell you.

I bring this up because I do not want to seen as a deceptive person. I am not, but with my mental condition of living in the now, because I cannot remember, it may seem that I am creating urgency repeatedly of emergency situations. I, or Linda or Cheryl or others can assure you that this is not true. Once my body becomes so weak that it appears that it cannot sustain breath or heartbeat, or that if hospitalized, I would not be stabilized, then it seems, sometimes for hours, sometimes for days, that this is IT. That I will die. One you believe for two or three days that this is the final stage, eventually I say something. Linda and I want me to die in my home,even if I don’t recognize it that day. This is why we are working to get in the palliative program and delay an unplanned hospital visit/stay (in palliative Linda or home care workers can call for a nurse, drugs and other treatment is administered in the home). Of course, in a choice of all worlds, I would still love them to find that this is a banana deficiency and everything will return to normal. Then, once cured, I will be up and about,and on THAT DAY this city WILL tremble.

But that is the myth of western world and medicine, that with enough money I don’t have to die. And that I don’t have to suffer. That death is beautiful. It is rarely beautiful. This is WHY many places have Euthanasia laws, because dying can often be a delayed and brutal process. My grandfather, who had what I consider one of the most peaceful and joyous deaths still took TEN DAYS to die. You stop breathing, then breath again, then stop, the body tires. This can go on for days.

Indeed, it is the nature of all of us to want to believe that our fears of death are unfounded. I need to be propped in front of the computer but after an hour of only moving six fingers I think, “Hey, I’m not doing too bad, right?” A few days after I stopped breathing for 20 minutes Linda said, “That was a pretty good day.”

I was slightly confused. “But I passed out about 10 times? I was to weak to wheel myself, and you needed to wheel me everywhere and transfer me.”

“But we went to Starbucks and shared an apple cider! We hadn’t done that in a while, it was spontaneous.” she retorted.

“Except you had to carry me into and out of the chair, I was on oxygen and passed out twice there!”

Linda thought, “I still think it was a good day.”

I understand what she means; she means, “Yes, there may have been 15 or 20 little ‘emergencies” but I didn’t think you might die ONCE today!” That’s why we have no plan on ‘when to call the ambulance, or should we let Beth die?” Who wants to jinx a perfectly good day? Besides, do YOU have a plan like that with your friends and loved ones? I thought not!

Linda and I are the same, so is Cheryl. Even yesterday, bent over from cramps but able to type out one or two emails on the computer said to Cheryl, “Well, this is a hellish life, but I still prefer it to no life! I mean, a few good hours a day, that’s something! Sure, I can’t seem to be 20 feet from my toilet but….I’m alive.”

The thing is that my mix of conditions makes one body system come to the front for a while, it becomes emergent and then goes into crisis. I survive that. Then while I still have many near-crisis, like having me stop breathing for say, 3 minutes or 5 minutes many times a day, that (the not breathing) becomes ‘normal.’ Linda is used to it, and as long as it is just a “few times” with the ambi-bag, nothing to worry about, and then I slowly bounce back. Well that is a lie as it is never ‘back’ but to some lower level of energy – so now instead of choosing to go to badminton twice a week, I need a very good week to go one night at all. As for my mental deterioration, which I hope doesn’t show up on the blog as much, is in and out of dementia. Even now, during a ‘good’ time, I don’t think it would be advisable for me to leave the apartment without someone knowing where I was going, and for how long, and have something there who knows me, and knows that I am coming. And that WOULD be on a good day. I have a need for friends, people who can catch me, guide me, during these final weeks (months, I hope).

As the last few days of fever, and blood have shown (blood as stool can be a byproduct of an auto-immune disease run wild, and I have two), now secondary, or incidental aspects body functions, affected by my condition are starting to collapse. And as they do, THEY dominate my life, for a while. And I imagine that this will happen in different ways, perhaps my retention will develop into a kidney infection, or my liver will do something funky, or I will aspirate more. I am still losing weight with no explanation. It is the same with my peripheral neuropathy and anemia. Every time I burn myself or feel myself for 30 seconds after a chunk of flesh is removed before the nerves die again, I think, “I’m getting better, it is coming back!” I ignore, the blood coming out of my toes, or the possible hairline fracture in one of the ankles, because “I’m getting better.” I even have a plan, I am going to be going to the hospital to the ER to have them examine the erratic of my heart and see what can be done.

That is how the day after I almost die, or technically die or am saved again, you find me hunched over, with two fingers buying stickers on ebay. Because I WANT to live, and I want to act like I am going to live. Yes, I am afraid. I can't stop that. But I want to believe, even if it requires ignoring a bit of reality. However, I have noticed that I have lost my patience for vendors or people who say, “Oh, wait until Jan. and we will restock and we can ship it then.” No, I can’t RISK waiting two months for delivery, it needs to be now, now!

I am going to sleep now, because I want to go out and feed squirrels tomorrow unless it is snowing or raining. I finally am understand what people with chronic conditions already know, that it isn’t always the big sounding things that keep you down, but a fever or, like today, tremors in my right arm, and hand, and my hands turning purple, plus passing out over and over again. Will I die? No, I hope not. But if this is my “new normal” then, I am a bit closer to that tipping point at which my body cannot be revived. Multiple system is a system that doesn’t kill you ITSELF, it lets every single system slowly die at different rates, until enough of them manage to die at the same time to kill you, or weaken you enough to put you in a coma. That is why a simple cold is the number one killer for my condition. Because it gets in the lungs and you aren’t strong enough to keep breathing AND keep the heart beating AND keep the veins dilating, etc. Death by attrition.

I am not trying to be morbid, I am finally understanding the process of this disease a bit, and I believe, with some sort of booster, maybe found in Seattle, I will be able to last a while (quite a while?). I want to last quite a while. Linda says that my readers aren’t mad at me for still being alive. “But they must be,” I say, “I gave them the thematic climax, and now we need the resolution of the story.”

So, I will go back on good days to writing about disability and lesbian fun stuff and other issues with as much humor as I can. I am interested in doing some theme days, and exploring the sexuality of the mind, which yaoi has given me a glimse into (for someone who is losing sensation in their clit, I have a renewed interest in sexual fantasies!). I appreciate everyone’s comments (not about my sexual fantasy obsession! Oh heck, talk about that, you will anyway). I will write about socks. I will write about corsets. I will have pictures of me taken again (I am too weak today for a shower, but tomorrow?), and I’ll post them. Winter will not win. I will openly and unashamedly lean on Cheryl and Linda and all of those who genuinely give parts of themselves to sustain me, from weekly mail to emails. I thankfully take this not because I deserve it, but because living is the only game in town, and anything that helps me keep in that game, is the kindest gift.

Linda has done a post, and I think it is part of some fundraising she has regarding my books. I am selling my manga on ebay and LJ for the trip to Seattle. I won’t be able to do anything except send postcards for the next month. I know from years of selling is that 5% of post is lost in December. I have limited resources and I tend to get things that are unique, so I am not going to risk YOUR gift disappearing. That’s why many people should have gotten packages this and last week (about 50). This isn’t Xmas, this is me saying that I think about you, I care about you, you are part of my life. If you didn’t get a present this week, well, maybe you got one earlier, or maybe it is still coming, I don’t know. I just am saying that I can’t risk losing a package during this month. So more postcards. More blog posts. More community.

Together. That’s a good word isn’t it? I need to remind myself on slow days, and bad days and days I can’t move that I am not alone and neither are you. Together. You are as close to people as you want to be. Just write a line, and I will try to write back. I know that feeling, that question, “do I even exist in this world?” as people go on, completely missing your misery, your terrible day, your loss, your frustration, your fears. Yes. I can’t solve everything, I wish I could. But I am here. Just as others have been here for me, from knitters, to film editors, to organists, to belly dancers, to librarians, to students and university teachers. And to the host of people who are SO much more than their disability, and yet have shown me how to survive mine, if not with grace, at least with a gigantic splat and then a voice coming from the ground, “I meant to do that you know!”


Stephanie said...

I am glad you're still alive! I still haven't read your blog very long but I want to enjoy it for months still, even if it continues to be a bit morbid. I've never been around someone who was dying before, so for me it's a learning experience about what it's like, so that I'm not repelled or something disgusting like that when I am around someone dying.

I was also thinking earlier today that since I do have a cold it's a good thing I read your blog online, since that would probably be the thing to kill someone with broken systems. Lean on Cheryl and Linda! It's good to see that people are there for you.

Neil said...

I love you being alive, and I am greedy enough to want you around for a long time. But if it doesn't happen, it doesn't happen. You have helped me change, and I love you for it. Always will.

Many thanks to Linda and Cheryl for helping you.

Love and hugs to all three of you!

yanub said...

I don't know how you manage to always have the perfect art to illustrate your posts. It is such a gift you give to us!

So you aren't dead yet? As Linda has assured you, I am not mad at you for that. I hope you will continue for months to come to be not dead. And I won't be angry with you if you do die. Life is like a good book that a reader wishes would not end, and yet knows that every book has an end. Only, I suppose we are more like a serial, with no announced number of segments. Who can be angry when the book does finally end, when it was such a gift to have had it all?

I hope you get the chance to feed squirrels. May pleasant dreams weave for you a restful sleep.

cheryl g said...

It is hard to explain how your disease manifests itself. In this post you have really helped me get a clearer understanding. I know other people probably read about some of the medical issues we have dealt with over the last few days or in previous posts and wonder why we aren’t calling the ambulance. I guess the easiest way to explain it for me is to say I use the “do no harm” rule of thumb. I weigh the emergent condition that you have against whether a trip to hospital will do more harm or if it will actually provide relief for you. If the hospital can’t help or the help will cause other potentially emergent problems, I choose to recommend we wait. I know you and Linda want you to die at home. I agree. Better to be at home surrounded by love than in the cold, sterility of hospital.

I remember how disconcerted I felt when the thought first went through my head, “Beth only had 6 seizures today and was mostly conscious all day. It’s ben a pretty good day.” It seemed so weird that what would panic most people and result in a hospital visit for many had become “a pretty good day”. Now I am thankful for every one of those “pretty good days we get.” Like you say, it isn’t the most pleasant life but it is life.

Thank you for sharing these beautiful pictures with us. They illustrate what you are saying so well.

JaneB said...

Very glad to hear that you are still with us, but you need to stop having daft ideas about your readers - we don't expect a perfect narrative trajectory, we expect you to share the reality of your journey - and we honour and value your willingness to do that to the best of your (still considerable) abilities.

A friend with a lot of experience of terminal illness once told me "death's no problem, it's how you get there that's scary and uncertain"

SharonMV said...

Dear Beth,
Well, you have given another reason to fight off all these infections - not only to get well enough to come & see you, but to make sure I don't bring any nasty bugs with me. I've been through a down period the last few weeks, & still have not gotten back to where I was before. Been stuck in the house again except for a couple of doctor appointments.

It is amazing how you can get used to not going out. When we had to give up one of our cars a few years ago & Dennis had to drive to work every day, I thought - oh how will I ever stand it, not being able to go out (no place within walking distance here). I got used to it pretty fast, in fact realizing that I hadn't been going out much anyway.

But I am going to get out soon - must go to the craft store! Need some new supplies to inspire me to get working again. Saw my doc today for various injections & some blood tests, so that will lead to some improvement I hope.

I'm glad you made it through this latest illness, I hope you get stronger & get to see the squirrels. Some pictures, please? I forgot to tell you last week that a raccoon walked across are deck one evening - right in front of the glass doors. We used to get them quite often, but not much in the last year or so. It was fun to see him.

Speaking of presents - thank you again for the lovely gifts you've sent me.

I'll be here for you, reading your words, for a long time I hope.


rachelcreative said...

I agree with Cheryl - you write about some things that are really difficult to explain about your illness and I feel I understand a little better. I trust you, Linda and Cheryl to do the 'right' thing and understand what that really means.

I can understand why for a lot of people it's seems so strange that the big things are not so big and the small things are so dangerous.

Not on the same level as you but ... I've learnt to cope with feeling knackered ALL the time the kind of exhausted healthy people feel when they get a flu virus and have to stop in bed. That's my usual thing.

But come near me with a cough or a sneeze and I am backing away because a sniffle from that healthy person has had me laid up for 4 months previously.

I can understand how those with systems much more compromised than mine have to walk a tightrope with seemingly harmless stuff but those big things just get managed.

Well I am rambling a bit. Hormonal I think. Having a distinctly grumpy, hard on myself kind of day. Hoping when Paul puts some Christmas decorations up for me it will help soothe the grumps ;o)

Lene Andersen said...

So glad you're still here and I'll happily wait years for the "resolution", if that means you being here for much longer.

Breathtaking pictures - I think my favourites were the women floating off the wall (sooo beautiful) and the girl in the grey dress. Dunno why with the latter, but it got to me.

Love the splat line. Just love it. Sya his to Psycho and the other squirrels for me!

Perpetual Beginner said...

Add me to the chorus - you never have to apologize for not dying, we're very glad you're still alive.

I remember how fast the expectations alter when someone is dying over the moderate-to-long term. One of my first clients as a PCA had malignant brain cancer. My first day there was shocking, but within a week or two "she was able to get a shower and eat a meal" became a very good day. Indeed, people who can't adjust to the new normal can be a huge problem, because they spend a lot of time being horrified and shocked when they could be useful, and because they can try to push a sick or dying person into "normal" behavior that simply isn't sustainable.

Anna said...

You still seem so fucking sharp and smart in the midst of everything. I am not "cheated" by you being alive¨, I like it.

I have made "christmascandy" tonight, I hope it turns out OK.
Take care.

Abi said...

I suppose that one of the factors which must be borne in mind is that you are you, and have excessively impressive staying power.

Please stop apologising for still being alive. I consider you not being dead to be an excellent bonus, and do not consider your predictions of imminent doom to be untruthful - they were your opinion. Alas, even you are not right all of the time. ;-) (Except that in this case I am glad that you were not right.)

As Yanub says, life is like a book that you don't want to end. You are like a book with lots of really thin pages at the end. The thickness of pages left makes it look as though the story does not have much left before it finishes, which is very disappointing, but more pages just keep coming. If only more books were like that.

I hope that you have a good squirrel day!

Elizabeth McClung said...

Stephanie: Thanks, I'm kind of glad too I'm alive! Months to come!? Um, well it is great to be optimistic, I guess this means I should buy clothes for the first time in 18 months, like a new pair of socks or something. You know the whole, waiting around to die thing means certain things like new shoes and clothes get postponed.

It is a learning experience for me too, it was only when I edited this that I finally realized, "Ahhhh THIS is what multiple system atrophy really means, it means that it knocks ALL your systems, big and small down, until it can start chain reactions and eventually one of them will kill you." I was thinking cancer and the BIG thing, but I just keep having multiple system failures, and eventually one of them will be the final one. It really does suck as diseases go. I do hope that some of my understanding came through in the blog post, as living it every hour makes it more connective. Thanks.

Neil: I am pretty greedy some days, other days not so much.

Thanks, and thanks for caring about Linda and Cheryl. I never expected Cheryl.

Yanub: thanks, it takes a while, several hours, and days of photographing when the light is good with Linda's help but getting the right pictures often helps me tell the story and I find that anime does that for me, it seems to have a broader spectrum of female emotions/situations than a lot of other traditional artists.

I DID feed a squirrel, on my lap, even though it was raining a little. But it was Cheryl's day, they LOVED her, many climbing on her leg, I had a grey and several black squirrels on my lap but with ducks, crows and peacocks so agressive, it was like we and the squirrels were being chased around.

I would like to be a bit of a serial. I have, against my will, become dickens, with a climax or a crisis every two chapters (how his work was serialized). I WILL NOT be little Nell!

Cheryl: Thanks it really helped me understand too, as well as the three of us talking about it after reading the post.

The hospital: the problem is that the hospital is so used to dealing with minor things AS minor things that someone with a major system teetering is just as likely to be given a intern or a nurse who through no fault of thier own, will treat you like other people and then when you stop breathing or have a heart attack......

No offence to those who work in hospitals, but ER's and ICU are NOT places to get a lot of rest, not when you are noise intolerant. If you HAVE no reserves and are in ER, you WILL be admitted, and if ANY stress, including noise, or even having your body moved, can trigger shock, then how can a hospital help? Well, it could give me a blood transfusion, after bloodwork and maybe after 3 days once I am stabilized by ativan and a pain medication which is NOT a breathing suppressor, they can then begin to help me with what I came in with. Unless they are vastly different to what I encountered. The reason so many early AID's patients ended up in rooms with an saline IV and water for 24 hours is no one wanted to say, "What do we do?! I've never seen this disease, I've never seen these types of bloodwork" - and yes, prejudice and fear but also I think, just a "What do we do?" as well.

Yes, this isn't a life I would sign up for, and I have always thought of Sharon's constant flu's and the EDS people dislocations "How can they live like that? How do they stand it." Well, they probably think the same of me. It is just what life becomes, annoying and difficult but still life.

Jane B: Well, I know but I feel that once you start a building climax there should be some payoff - haha. No, it turns out the nature of the disease and that of the serialized novel is similar, minor crises with major possible implications every two chapters.

That is a great quote from your friend. It is scary. And when you know you ARE going to die, and that your disease has been known for over 100 years and no treatment has yet slowed or helped it - there is always the, "Is this it" because, hey, I'm not ready. So, I don't mind a delay, a LONG delay in the final act.

Sharon: I identify more and more with you and my respect for you grows more and more, because of how you deal with it with grace and giving during your good times; Dinners for Dennis, gifts for the postcard project. To go on like that, I have take you as an example, a mental mentor.

Yes, one day and another and suddenly I realize that except for Linda taking me to an appointment, I haven't been out for X weeks. Does it scare me? No, becuase I am too tired to protest right now. But when I am not, then I will fight back. I just, well, you know, down period.

Every day, I fight in my mind for you, wishing you a slow and steady improvement, hoping that IVIG and the other treatments bring about the balance that lets you, if on a tightrope, walk in some sort of stability. Every day.

I went and saw the squirrels, at first I thought none would come and was so sad as I thought, "Now everyone will be sad" (from online) but had a black one climb in my lap right away and that was good. A light rain but it was good. I'd like to see an eagle again, and a raccoon, lucky you. We are still part of the world.

Victor Kellar said...

Is this appropriate? The old "Dying is eay, life is hard" Maybe both are. Maybe they are worth it. I cant't imagine how hard your life is, but it's still life. That's about as profound as I can get right now

Neil said...

So I'm listening to Sarah McLachlan and decided to pop in here to see how the day's going. And there's a comment from you, my dear niece. And while I read your comment, what should come up in the play list but her songs Answer, Time, and Perfect Girl? Soooo apropos...

Linda would appear to be quite a treasure. I hope you let her know that (I'm sure you do). But would you think of Cheryl as a gift? The timing of you two meeting her seems to be so perfect; perhaps she's more of a miracle for you.

You most certainly ARE part of the world, Beth. I'm going to have to seek out some funky postcards for you. But all I've found are the tacky touristy cards. Yuck.

You? Little Nell? Not at 6'3", ducks!! 'Sides, isn't she all brave and plucky? You're just gritty and determined. Much better than her, definitely.

Love and Hugs,

Maggie said...

was glad to know what was really going on and was greatly relieved when I got the email back from Cheryl. I'd like to come feed the squirrels with you tomorrow, but Sparky has been sick and I'm now afraid it's transferred to me. I so hope you get to have a nice day tomorrow. Lots of hugs and love.

Raccoon said...

ladies with wings.

You know, that's getting to be a theme with you...

Some great pictures.

We don't hate you for not dying. We prefer that you don't die.

Feed the squirrels, and then the rest. Then do some postcards, and then rest.

A Bear in the Woods said...

My dear, please take as long as you need to do whatever it is that you are going to do.

And I hope it takes a long, long time.

I won't be disappointed a bit, if the end of your life-novel drags on a bit.

I never cared for a speedy anti-climax any ways.

Tayi said...

It occurs to me that if you're having problems with your bowels and such you might want to start drinking cranberry juice on a regular basis, as long as there's no health reason not to. Cranberry juice is good for the kidneys, and you really don't want your kidneys to get infected. I mean, I'm sure you could handle it and all, but it would be painful and boring. So it's an idea anyway, relatively easy prevention.

I wish I could help you to live longer. I do read your blog every day, even when I go silent for weeks at a time like I have been lately. You are a real treasure, Beth, and I don't believe there's anyone who would want you to die more quickly for the sake of a good story arc.

Neil said...

Just looking at the images again, I am appreciating your choices even more.

Clover is a sweet young thing, though her wings look very uncomfortable. And the second-last image, labelled "Original" is pointing to where it itches. Or did she bump into a table and needs a kiss better right there? At least her fur-lined stockings will keep part of her warm.'

Zen hugs,

Dawn Allenbach said...

*falls out of wheelchair laughing*

On going splat and saying, "I meant to do that": I have done that so many times that I've lost count. It puts the humor back into a situation that really is funny as hell -- like someone I know (me) driving off a three inch step she didn't see at the skating rink in the sixth grade, making her wheelchair go BAM BAM -- and gives non-disabled folks permission to laugh about it, too. Because it's DAMN FUNNY!!!

I'm here, and I'm tickled that you're still alive. You can stay alive -- though with no seizures or bad days -- for YEARS as far as I'm concerned.

Elizabeth McClung said...

I am trying to get 40 postcards finished in the next 2.5 hours so I will work on a post after that. Thanks for your patience.

Raccoon: Yes, the women with wings does seem to be a theme, I think I don't really relate to the athlete women images, I picked up several magazines on doing racing or training for 10K and there wasn't a non-AB person in there, not an amputee or wheelie, so I gravitate to this image. I like to fly, one day I will fly away (or some part of me) whether I want to or not.

Did this happen with you, did you find some images that didn't seem to be "you" anymore and find others that did?

Raccoon said...

"Did this happen with you, did you find some images that didn't seem to be "you" anymore and find others that did?"

Both images and activities.

For a long time, I avoided both. I liked climbing rocks, bicycling, camping; I skipped watching the 2000 Olympics and didn't know that Armstrong had won the Tour de France more than a couple of times.

And the Ren Faires? Working them was out of the question -- I couldn't do anything that I used to be able to -- even now, I get homesick when I visit.

It's not so bad, now. Of course, I've had time to adjust, which you haven't.