Friday, June 27, 2008


Typing one handed sucks. So I guess no long blog today about gender.

Actually today sucks. I wish I could explain to you the kind of cruelty that would make a care worker watch you pass out because it is interesting. Or refuse to help you transfer, or assist physically in any way because “She only helps those who help themselves.” The more fatigued I become, the more I realize what a cruelty this woman possesses, to hold up her own expectation of what a “good cripple” should be and deny care or even life assistance to those who do not meet it on that particular day.

My life, compared to some I can think of, is pretty okay, I mean, I can’t see out of my right eye but we have all gotten used to that by now haven’t we? Going partially blind is boring on this blog, hardly worth mentioning to be honest. I need something exciting and NEW.

I realized today that deep down, half of me does not believe that I am dying and half of me knows I am. While I was showering, I could not shampoo my hair. I mentioned how it is falling and the same soul of compassion said, ‘Yup, it sure is!” as she shampooed me. And I realized as I looked in the mirror, trying to use what hair I had to cover my scalp, that if I really gave a damn, or believed I might come back; or if I wasn’t so sick that I couldn’t summon the emotions that I should really give a damn, I would be calling a doctor. Because this isn’t cancer, and I don’t get it all back if things go right and this is just a "side effect". This isn’t just part of cost of “Surviving” but rather part of the process of dying. If I had known how much I would miss my hair, I guess I would have done a bit more things with it: I’d like to do a braid. How seriously pathetic is that, to be upset, to be crying because I don’t have enough hair, even four inches past my shoulders to do a french braid.

Linda told me, after she found me unable to move for an hour and had to try and wrestle me into a wheelchair, that she now realized that I am like SICK sick. She has been at work a lot and I guess since she is only home to help me go to badminton (2 weeks since I went) or other sports (1 week), she doesn’t see the progression. I wonder if I am the only one who does?

It turns out that dying is a lot more fatiguing that I thought it would be. And a lot more upsetting, a lot more little things falling out of your control. Today, for some time, I lost everything but the use of my thumb. So I guess that means my forefinger is going; losing axons or however it is my nerves die. My hand turned blue and I passed out. It wasn’t the first time. I had been talking to Linda. When I woke I couldn’t sit up. She said, “We’ll get the oxygen on you.” And traced the oxygen line all the way around the desk, up the chair and up my chest, pulled my head up and it was there, going into my nose. Passed out on oxygen: my new trick. So soon, I may not be able to talk much at all, if talking makes me pass on while on oxygen. Or increase the flow or both.

I’m not supposed to talk about the “D” word, because everyone is getting used to me being ill, being disabled. Not dying. Except I am not particularly impaired; I am FUBAR (fucked up beyond all recognition!). I guess that is what stuck in my head so much with the EMT on the ferry, the Coho. Once he heard my diagnosis, actually even before then, just once he saw me laying down and the lips and then found out why, he didn’t ask any questions. He didn’t fill out the section of the form about what meds I was on, because, what was the point? This wasn’t going to be a learning exercise or a review in marking clients who are high risk. I was ‘a matter of time’ and if he could hand me off to the next in line, then what did it matter what medications I was on because it wasn’t a medication reaction or an allergic reaction that was causing this.

Every day, I watch my hands, my arms, my fingernails to see…are they growing again, is it getting pink, did all that pain push it back for 4 days? And when the hand turns purple, as it does. What then? I am on oxygen, so what then? Go out at midnight for boxing practice? Hope things are better tomorrow? And if they aren’t? Then what, just something else out of my control, some new indicator of “it” getting closer?

I don’t get out enough. Someone today asked me if I qualified for playing Murderball (known as Wheelchair Rugby). The question was so surreal to my circumstances that I didn’t really know how to respond. I told them that technically I suppose I did qualify, the difficulty is that players who have stamina of only 2 minutes at a time tend to not have the highest priority on the team. The same goes with players who leave in ambulances, or arrive with their own “Crew” to revive them. That tends to freak players out. Because murderball players are SCI’s, who lead a nice stable lives and go to training and weight lifting and like the rest of the population, find those who go into seizures or have sudden brain damage between sentences to be a little creepy if not down right freaky. And like the rest of society, usually come up with a rule to make sure they don’t have to be around them, much less responsible for them.

Do I want people to be responsible for me? I guess I do, I want to keep being revived until all the fun is squeezed out. I am worried that it is going to be God’s little joke. Because my dying will either occur in the bed or in the head. And I worry that once I can’t do stupid and suicidal things anymore, that I won’t be able to die; won’t stop breathing, will go the long slow road. Is there anyone that wants to go that way? I found out that the waiting list to find out if I stop breathing during the nighttime in Victoria is now….a year. I think there might be a lot faster way, which involves either a care worker trying to wake me up or Linda away on a trip and two days of a heat wave.

I get angry, for no reason, or rather for very little reasons. Get very angry because I can’t lift my arm over my head today and thus can’t blow dry the hair it took three hours to have shampooed in the shower. People move my wheelchair away from my chair for their convenience, so they can put down a drink. It leaves me trapped. Linda does it, everyone does it. They don’t mean to do it, it isn’t INTENTIONAL. How often can you be cruel before it is intentional? I don’t know. I guess that is what I mean by angry. When do caregivers, and nurses and people in the ER and my own partner GET that moving the wheelchair away takes away my ability to make choices, infantilizes me? Well not after a year. Maybe this is some form of grief, at lost things, or hey, maybe I am just an angry person.

This really isn’t turning into a bright shining post is it? The funny just isn’t here. I will get to the post on gender though I wonder why when it took me six hours to write the first one and it seems a lot of people don’t really know what to say. Which makes me think I must have done a pretty crap job on it.

Also, in case anyone didn’t get the message; I do things which are suicidal and/or excruciating painful because I have to. Or because I also have a tendency to be suicidal. These are not “how-to” manuals. I am not plucky, I do not have ‘spirit’, I am dying and if suffering horrible pain for days is the only way I know how to STOP or SLOW dying, then that is what I do. And I do it for as long as I can stand it, because the alternative is more terrifying. I took a risk this week because I felt like I was already dead. Not because I think doing stupid and suicidal things is a good and reasonable way for people with chronic disabilities to live. It is difficult to explain the depth of shame and pain I get from finding out that people are imitating me; and now the suffering they feel, is to me, my responsibility.

If I really wanted simply to die in peace, I would stop blogging. But the truth is I am too scared shitless to do that, even on really crap days like today.

The veins in my arms seem to be free bleeding into the bend of my elbow creating bruises. Does that count as an interesting enough trick for today.


rachelcreative said...

Of course you're allowed to talk about dying Beth.

Sorry today feels so utterly sucky. The cruel "care" worker has surely added to that sense of immense frustration and anger.

A while back you talked about not being wanting to get your living will sorted. I don't know if this is useful to you or not but I found this charity who produce an easy language 5 steps living will which is legal in your state.

The name is a bit ironic Age With Dignity but for $5 it might be worth a look. I admit the evil wikipedia directed me there.

I mention it because I know it's important to you that you have a say in how you are treated and cared for if you can no longer decide or communicate that yourself.

You are loved Beth. Even if the nasty care worker can't see how wonderful you are. And b@lls to you because you won't want to hear me saying nice things about you. If you want to know how people like me can care about you when they've never met you then just think of how you care about us right back. Either we're all good people or we're all bonkers together :o)

SharonMV said...

Oh Beth, I wish I could be the one there helping you. I think my compassion would makeup for my lack of physical strength. I have lost so much of my hair - at many different times for different reasons. Lost hair due to Lupus - that's one of the signs of a bad flare. When I had my first bad flare (in my early 20s) I lost a lot of hair. None of the docs had a clue -my hair loss was from stress & the pain & fevers, well just learn to live with it. My hair was still quite long then, but it became so thin that I cut it off, above the shoulders. The there was the year I was on alpha interferon therapy - lost a lot of hair, but it did grow back. Then if my thyroid was too high or too low, the hair would start falling out again. And with the really bad Lupus flares of the last few years,more & more would fall. I'd find it in between the cushions on the sofa where I spent most of my day lying down. And all around the house, but I didn't have enough strength to work the vacuum & clean it up. And the last few months, my hair also became very dry, some parts have lost their curl & hang limp, while most of the rest have gone from curl to frizz. I think this latest assault on my hair is from my adrenal glands shutting down, so I'm hoping my hair will come back some. And I haven't even been able to go get it cut for 2 years, nor even to a walk-in place.
It's not pathetic to cry over it. Or to feel the loss and the loss of what it means. I haven't been able to blow dry my hair for years, I just let it dry - I'm not going anywhere. Some times it is hard to find the hope in all this Beth, especially for you.

It took a long time for Dennis to realize that I was Sick. I was just Sharon sick - it was just something I did all the time, part of my personality. But after the serious diagnoses of 2006 sank in & the fact that I needed infusions every 3 weeks, he understood more. But it was not until I had the spontaneous Achilles tendon rupture that he was taken aback. He said, that's a really serious thing, that your tendon could just rupture like that. Plus, he had to take care of me a lot more. So he's slowly learning that I'm seriously sick and also recently that I'm in serious pain.

I don't know how much good my musings are doing for you. But I did something exciting and while not new, I haven't done it for over 2 years. I went to the craft store. Dennis was take by surprise by my bold plan. I got presentable, put on shoes & made it down the stairs. Then we got in the car & drove 15 minutes to the craft store. There was a wheel chair for use in the store, but as there was only one, I decided to walk to the stamp section. If need arose, Dennis could go back for the chair. I picked out several stamps & other items (my sister had given me a gift card). But I was failing & my SI joints were not co-operating, so Dennis was dispatched to bring the wheel chair. Once ensconced, I was able to shop for a magazine and check out. Walked the few steps back to the care & then we drove home. Exciting & bold enough for you, Beth! Well it was a happy mini-adventure for me. I had to creep up to bed afterwards. But then after a couple of hours of rest, I was able to come down stairs & play with my new purchases. Time for trying to sleep now. Good Night, dear Beth

Meredith said...

All living things start dying at the point of birth. Som do it faster and some do it slower, some on a path more peaceeful and some in a more hectic way, but every individual life is a path towards death. I'm still in indecision whether to hasten or avoid the end, in my internal conflict of instinct and intellect. You seem to be in the same arena, just with different weapons and certainly stronger opponents. The "stupid" things you do, as you call them, are unique and daring in a way I never really could be. They, and the blogposta describing them, remind me that security is not everything, that's there is no point in being obsessed with survival as the end cannot be altered.

I cannot say I understand your feelings - after all, I've never been in your situation -, but I think there's no need to feel shame about mindles imitators. They misunderstand and misjudge you, so they deserve what they get, quite a bit.

And... I can't help but be amazed at what you're doing with this blog and your life. Reading you keeps reminding me the true meanings of life. Thanks for being there.

cheryl g said...


You are allowed to be angry. You are allowed to get upset and cry over things like not being able to have your hair in a braid.

That particular careworker needs an empathy transplant or a new line of work.

Neil said...

I think I'd be worried if you weren't scared, angry and/or resentful about what your body is doing to you, Beth.

I realize that you have a limited time with us, and I wish it weren't so. But if you weren't in the process of dying, would you be the blogger you are? Would I have stumbled across your squirrel photos, and thus found a friend, and started my own, much more sporadic, blog?

You have made a difference to the world, dear Beth, by teaching, by writing 'Zed' and by blogging. You've made a difference by explaining your good days (corsets in cemeteries), your interesting way of ending outings (corsets on graves), and your really crappy, ugly scarey days (of which there ae far too many).

You're making a difference in the world by telling us EXACTLY what your days are like. Maybe you're having an up day, or a Down day, but you're honest, brutally so, and you can sometimes show us the dark humour in the crap days.

You've made a difference by showing me a side of life I wasn't aware of. You've introduced me to things I'd never heard of (wheelchair dancing?!?).

For the difference you have made, and still are making, in my life, Beth, I love you. I know that doesn't stop the pain, the fear, the bloody fools you get for home care; but please remember that through it all, you are loved, and remembered often. And if the world weren't so big, you'd have far more friends dropping in to help however we could, just because that's what we do for the friends we love.

Still here, still reading, still Caring, still sending Zen hugs,

Perpetual Beginner said...

The funny doesn't always have to be there, Beth. I will read and love you for your honesty anyway.

Can I reach through my computer screen and bitch-slap your care worker? Because she deserves it. The more I read about aides (both yours and other peoples), the more I realize why I was so damn popular just for doing my job. I showed up on time, did what I was asked to do, and followed the general principle that my whole purpose was to help the client - otherwise what the hell was I doing there? Who knew that actually doing the job would make me a damn hero. That shouldn't be how it works.

Follow up to the strangling story of my last comment. I held the guy up while he tried to strangle me, because he was frail with a bad back and if I had dropped him, he would have been hurt. I was never in serious danger - he simply wasn't strong enough to actually kill me - and I figured that even though he was freaking me out, it was better than injuring my client. So I managed to pry him off, get him back into bed, and then called my boss to get taken off his roster. The next night (which I had been scheduled to work), he did the same thing again, and the aide let him drop into some furniture, injuring his back and landing him in the hospital. I still feel guilty about it.

Yes, people can be cruel unconsciously. Sometimes it's the kind that hurts worst of all, because you've become invisible. Deliberate cruelty, much as it sucks, at least means that the person is seeing you, engaging with you in some form. Unconscious cruelty just is, and fighting it is like fighting air or water, because nobody intended to hurt you, they just didn't see you at all.

In a brighter note - I got my postcard today. It's beautiful! The glowering lady is just perfect. She looks like a pissed-off Madonna (of the religious, not rock type). Since I get annoyed at the misty, sappy Madonnas, this makes me happy. *Toodles off to do some research and find out what the Japanese on there means*

Wendryn said...

Your care worker sounds abusive. She's not helping you with what you need help with, which is her job. Anyone who decides what a "good cripple" is ought to get injected with something that leaves them paralyzed for a month or so just so they learn a little bit about compassion and being a reasonable human being.

That said, you have every right to be angry. Life sucks. You are doing everything you can to remain a viable human being, and it hurts like hell. When you can't do things you could do, it's natural to feel angry, and you are watching things get worse without any clear idea why. Let yourself be angry. I don't read your writing because you are the perennially cheerful cripple; I read it because you tell the truth about your life, and that is a rare and important thing.

I only read this post this morning and needed to comment immediately, so clearly you said something right.

If you don't mind, drop me a line with your address and I'll send you stuff - I don't want to have to wait for a postcard to be able to send you something.

Lene Andersen said...

If you taking a risk and winning, even for one day, over death and feeling dead already and this evokes a similar response in me where I realize that I've stopped living or doing something I love because of fear and then I CHOOSE to say fuck it, go do something that makes me feel alive and then hurt the next day? Not your responsibility. Mine exclusively. Free will, darlin' - you didn't make me do anything. You reminded me that life is about living and sometimes, the pain is worth it.

I am sorry you're having a crap time. I'll email you later today.

VK said...

You are indeed having a shitty day - how dare your careworker treat you like that, just pure evil. Makes me angry enough that I wish I had the money/stamina/time/lack of morals to fly to canada, break her arms and legs and refuse to help her unless she helps herself first.

Advantage of hair falling out - excuse to buy wigs in bright anime colours?

em said...

I'm reading. Thank you for writing all of it. You matter.

Gaina said...

You have every reason to get angry, and other people's stupidity and/or cruelty is a great place to start.

That care worker who watched you pass out is very worrying - what is she, some kind of 'Angel of Death'?. Report her, if not for yourself then for the safety of non-terminal clients she may harm in the future. And if the agency don't handle it to your satisfaction, take it further.

Oh you're totally in grief, everyone who loses a bit of themselves to their disability feels it and as with other kinds of grief there's the 'anger' phase. It's hard to remember when you're in the middle of these emotions as well as getting on with the task of being disabled that other people don't understand what they are doing to make you feel vulnerable or infantalised unless you tell them directly.

Stop questioning your choice of activities just do what makes you feel alive in the best possible way (and according to what kind of fall out your prepared for after the event). To me living half a life is no life at all for someone like you. This is YOUR life and YOUR death and it should be on as many of your terms as your condition will allow, so I say if you choose to go out with a high-speed bang instead of a bed-ridden wimper, you go for it!

....I'll stand by with the brush and dust pan ;-).

yanub said...

Elizabeth, you do what you have to do, because not doing it is not living. I know you are dying, but dying is still being alive, and until you are no longer dying but dead, I figure you will keep doing whatever you can in order to live. Whatever you do, whatever choices you make, only you can know if they were good ones or bad ones. And it really doesn't even matter if your choices are good or bad. What matters is that they are your choices, that you are still choosing. Do not even lie to yourself that you have no choice but to do what you do. You have not had to choose fencing or boxing or badminton or racing. You could have chosen to do what the Good Cripples do, and gone to PT, where trained medical professionals would have decided for you what activities you should do. But you haven't done that. You have been naughty, you Bad Cripple, you. You have made your own decisions. If other people are emulating you, it is not because you have inspired them to want to take crazy risks. It is because you have encouraged them to do what they want to do, instead of what people in scrubs want them to do. It's never the things we do that we ourselves think matter that inspire* other people. MD was telling me the other day that she always admired me for sewing and gardening and crafting and so on. "But I do them so badly!" I said. And she said, yes, but you do them anyways, that's what I admire.

Your carer--can you get a different one? No one should be subject to that sort of abuse, both medical and emotional. If she doesn't like her job, she shouldn't let the screen door hit her ass on the way out.

And, yes, typing one handed and half blinded is crap. I'm sure it would be better if one did it every day, but it's a bitch when you aren't used to it.

*I know, bad word. But the right one here.

Veralidaine said...

I am here for the long haul, Beth. I'm not going to make any rules that say I get to avoid the ugly parts of your life. I'm here every day except when I don't have 'net on the weekends, and I read every blog.

If your careworker is being cruel, can you fire her? Aren't you hiring your own careworkers now, or did Triumph go back to picking them out for you? It's hard to keep up with what stupid thing Triumph is doing from day to day... there are so many.

You are allowed to be angry. I don't understand, because I can't understand your life at all, and I think that's one big reason you're angry-- hardly anyone CAN understand your life, and most of those who could are gone. But I understand that you are angry and you are right to be angry.

Kita said...

Beth, my sister. I hear and understand the pain and frustration that you are feeling. People (even carers) that are inconsiderate to others certainly are a pain in the ass. And the arms and the legs and the ... well, everywhere, really.
You have every right in the world to be angry. We all do.

We all die. Dying is not a 'nice' process. There are no prizes for who dies with the best attitude..for me, this walk with you is as painful as it is joyous. But you are the reason I walk with you. Well, wheel with you. Ya know what I mean.

Oh, guess what happened...
yes, someone decided that the wheelchair didn't really want to belong to me, and has just parked it in the middle of the room. Hmmm. Bit of a bugger, that. Hmmmm.

missnomered said...

Sending you rainbow-colored, warm thoughts.

I arranged a package of smarties into a pride flag today - maybe I'll post the picture on my blog.

Judith said...

Beth - it sounds like a ghastly day. I wish I could be there instead of your evil careworker. She is something else... Do you have any say over who is sent to you? That one needs reporting and replacing - makes me angry too.
Was thinking about you today since I was feeling at odds with the whole world and was pretty sure you'd know the feeling!
Cloudy and grey here in England. A bit humid but not warm. Eastenders on the telly. Glastonbury all muddy. Sounds about right! Still thinking about you and wishing you better things. x

Ruth said...

Oh Beth I hope you know you don't have to hide your anger or write about certain things. I hate caregivers who judge. It's so difficult to deal with and sometimes they say things that can stick when you're feeling down already. We all know that caregivers like that are out there and regularly employed and come our way. It's even more painful when you're trying to manage with every last ounce of strength you can muster.

Carapace said...

Wow, your care worker is terrifying. I worked with a few folks like that in my caretaker days. Please, please, please, report her or whatever you can; every complaint is one step closer to getting her the heck away from others.
I'm stunned at the wheelchair/drink thing. Seriously. I know you have your dignity, but have you considered throwing a screaming fit at these people?
To me your acts of maybe-suicidal maybe-heroism seem stone-cold badass realistic. You know there's never going to be a better time to do this stuff, you know sitting around won't help--Why not go out there and stir things up while you can? Would being genteel and retiring help you? Or just make it easier on the sort of white coats who sent you the Cryptcarer this morning?
I always love reading your posts, funny or not. It makes my world feel bigger.
And makes me wonder how you're spell-checking with one eye and one hand. THAT is a trick for the day.

Dawn Allenbach said...

The careworker should have HER abilities slowly (or not so slowly) taken away from her and see how she likes it. I mean -- SHIT -- what the hell does she know about your life and your circumstances? Doesn't she know that the fact that you FUCKING GET OUT OF BED somedays is an act of "helping yourself"? Sanctimonious bitch.

Sorry, but shit like that pisses me off so much that I start cursing like a drunk in the ER on Friday night.

Your blog post yesterday was great. So what if no one really knew what to say in response? You expressed your views, and I'll wager you got lots of people to thinking. That's something to be proud of, sweets.

You just keep blogging as long as you're able and as long as you want. I for one will be here to read on.

FridaWrites said...

I'm angry today too (I'll blog later). I wish we could have an angry party together.

The gender post was excellent, just out of energy yesterday (whole family sick). I joined the clue boat for several reasons a few days ago and asked my husband, "what if our son is also gay? Has it ever occurred to you he could be or will be?" And he said yes, he had thought of it. They're probably too young to know, and neither of us are concerned if either of our children are, except that we worry about discrimination. Yeah, I can't see him participating on typical boys' teams. Actually, I think girls' teams sound better for everyone.

kathz said...

Of course you're angry. I expect everyone who reads your blog gets angry - often about trivial things. You are angry about big things.

Of course you should blog about dying. We're all dying, even if we're in excellent health. It's something all humans share and in writing about your experiences and feelings you are reminding me and other readers of our common humanity.

You write about when you are angry and when you are scared and unhappy. I'm glad you share these times - and it makes the intensity of your pleasure at the good times more valuable. Thank you for this post - and all those I've read without commenting.

Elizabeth McClung said...

SharonMV: Well, I'm not supposed to make love with commenters on-line and in public but, I love you (Let's make out! - oh, I mean a sort of awe and wanting to be there with you kind of love). Thank you for writing the comment and I know the type of person you are and it is a very rare and special type indeed.

I respect and anticipate your "musings" with a sort of compradere of understanding. I don't know what you know becuase you have lived the road longer than I; but you know where I am.

What can I say about someone who hasn't been out to a craft store for over two years and then LEAVES THE WHEELCHAIR AT THE DOOR IN CASE SOMEONE ELSE NEEDED IT? I am curious what stamps you got, I am curious what you will do with them? I am curious how much hallucinating you do during the night and the pain. Wait, how did that get in there. Sharon, are YOU aware that you are SICK, becuase you still have this elegant politeness which would do you well in Japan, that you don't want to bother other. Quite honestly, I think they should have had a tickertape parade to the store for you and carried you in with a palanquin (of beefy guys with shaved and oiled chests?).

Very exciting, very bold for me and very much understanding the nature of your condition (though if you had NOT sent Dennis back for the chair because of some pride or over politeness I would be all over your butt! That's not as sexual as it sounds)

Statements I understand: "well just learn to live with it" (the last several months when I am between shower days and can't tell if bald spots are showing and can't lift a mirror to check).

"I just let it dry - I'm not going anywhere." - Yup! Becuase quite honestly, unless it is a GOOD day, I am unlikely to move for quite some time after a shower.

"I was just Sharon sick - it was just something I did all the time, part of my personality." - It is hard for people to NOT get used to being ill as just part of your personality quirk, which dries up the empathy or if, so, "I'm having a bad day." Gets a response of, "Great, I guess that means the computer is open!"

Thank you. Thank you for sharing so I wouldn't feel alone.

Rachelcreative: yeah, not a good day, things bounce off on a good day but on a bad day....

When did I say I didn't want you saying nice things? I care about you. I would list you amoung the top ten people who get me through a day just by thinking of them; mostly it is the competitive, "Hey if she has the energy to buy cameras and develop films and post it surely I can..."

I just wanted people to understand that I am NOT acting in a way that is healthy for a stable chronic condition. IF you recognize that and want to be (shudder) 'inspired' to do something, that's okay. But don't go off without meds or telling people becuase I do? That's stupid. And I say that it is stupid and that wasn't a joke. That's me recognizing that I do stupid things, sometimes for strange reasons, and sometimes there are positive results but NO ONE can LIVE that way - because Russian roulette catches up with you.

Meredeth: If these are the decisions you face, then I am not evnying you (off to find someone else...). Seriously, you are right that sometimes people with different conditions mistake what is desperation for inspiration and I can't feel they deserve it becuase these are people I care about, people I sent post cards to, people I think about. I don't want the fact that I have come into thier lives or them reading my life, to mean that they have a lower quality of life becuase they didn't understand for example that I am capital T - terminal.

I am not quite ready to drive over a cliff with a bus, if you know what I mean; I would LOVE a nice stable life space where for just a few weeks I could post postcards, but that isn't what we got on the plate eh (wow, lots o mixed metaphors), I hope that my sort of honesty (which can including whining and self pity, anger and frustration), has some sort of use.

Elizabeth McClung said...

Neil: Well, that first line made me laugh, I think in relief; I worry you if I am NOT going wobbly?

I'd like to think if I wasn't dying I would be a better blogger because a post could take 1 hour instead of 4 or 6 and I would have more time to edit. I would still visit squirrels but you are right, cut off from society has removed me from whatever it was I was chasing before. And that is what would have dominated me, becuase I'm still a WEE bit type-A.

I do miss that I cannot see or visit with you, or many others. And I thank you for being my friend, and for caring about me, and what I experience. Well, as my mother says, Brutality is something I am experienced in.

I think, even now, if I dropped my morals, I could survive, I just can't do that; who I am is more important to me that a survival built on blackmail, extortion, and the kind of money it would take to get me treatment which might prolong things. It isn't that I couldn't do it, it is that I have grown up with people who would, and so won't. If you don't understand that, then bless you for being such a nice person.

Perpetual Beginner: Yeah, the problem with immediacy is sometimes I can fall away enough to have the funny and sometimes I can't.

Yes, well, I think a lot of care givers forget the first word in their title. And other treat it like a long day of janitor work, and I am just another bathroom to be cleaned.

As for the guy, it was your supervisor's fault, with a known issue, I know that doesn't help much but you did report it and you can't do ALL thier jobs for them.

Yes, how do you fight cruelty which is done under the best of intensions? And yet so much is? Or done with helpful ignorance?

I am glad you got the postcard - if you find out what the Japanese means, let me know, no one knows and I am worried I am sending out swear words or curses or the like.

Wendyrn: Yeah, I think dependancy and a day in a wheelchair should be graduation requirements for all university degrees. Teach them something experience wise!

Thank you for commenting and I am glad the cheerful crip isn't why you keep coming back becuase BOY are you going to be disappointed!

Sorry it took so long to comment back (still under 24 hours) - my address

Elizabeth McClung
PO Box 2560
Port Angeles, WA

Woo hoo, stuff! I like stuff! Unless it is dried poo - please do not send dried poo.

Lene: Oh I don't worry about you, I figure if you can't tell the difference between a chronic and a terminal condition then you NEED a slap of reality. Sorry, that sounded a bit cruel didn't it. I mean I trust you to know how to manage yourself and then go over your sensable limits and regret it - becuase that is us. People who want more pie that we were served!

VK: Um, thank you for that angry yet um, sweet yet scary sentiment (please note all future boy/girlfriends - this one has a temper!)

Maybe, I don't know, I think I have to lose a bit more, of my "fuck it who cares what people think!" before I get a wig. Just my grandmother wore a wig and everyone knew. So some family jokes associated with that.

Em: Thanks, are YOU okay. I am like, er, I dunno, a really stupid tank that gets hit a lot but keeps on going, I am more concerned about you.

Gaina: Trust me, I've tried to swap her but apparently she has enough union time in that I CAN'T change her unless it is with someone who has more union time. A system in which clients are treated like assembling a car?

Yeah, the problem with the "stages" is I seem to bounce continuously between anger/grief and denial. No bargaining or acceptance as yet. Just grief, followed immediately by doing something stupid (denial!), then anger and around we go!

Well, there have already been several squawks about "She is doing WHAT?" regarding the 10K but since I am USED to going right from the finish into the first aid tent and it is like an hour and a bit and if I can last that long then go to the hospital, the worst that could happen is I die. So I am really not understanding the worry, what ELSE do they think that could happen, I could end up in first aid? I ALWAYS end up in first aid! I have to be on oxygen on a 24 hour watch - again, ALWAYS for a day or two after something stupid. I die or I win. And I still think there are plenty of things to go wrong before "massive stroke during THAT hour" - so I am betting on live and PAY, and PAY, and PAY! haha (I laugh now becuase I'm not in pain now!).

Yanub: so true, becuase even opting out of a choice, is still a choice, so I might as well choose, right?

Um, where are you - I have never been to a PT because....I can't be referred to a PT until I have a definative diagnosis and then I can be assigned treatment but with an autonomic failure they don't allow for PT's. So, yeah, wait for nothing or do it yourself. Very Canadian actually.

Actually, I am getting better at the one handed bit and Linda is buying me a patch to stop the odd images coming in but still kinda sucks. HArd to pass for 'norm'.

Veralidaine: You won't see this till Monday but I am here for the long haul too (except I think this might not be as long a commitment as say...a car lease).

No, I could get the funding but I can only pay 2/3rd of what the bad careworkers of getting, so what type can I hire for that. And I just haven't had the time/energy to get that set up yet, and they won't let me change. But I will work on it. For instance, becuase I complained last week, they sent me NO NIGHTCARE AT ALL this week. so, I don't have BAD care this week (I have none!).

I just need to write better so you can understand. Figure out how to translate that.

Kita: What, I don't get a prize for "most improved attitude while dying" monthly award (wouldn't it be sick if they DID that?).

I know what you mean. Don't worry, in the end, I won't have the energy to describe it all. If I take the long road (oh we all know that I am such a coward I would rather take the long road and see what happens that the short one!)

Did that really happen to you? Oh my, what a shit who did that. I remember when I got taken to ER and the ambulance left my wheelchair OUTSIDE on the sidewalk - a wheelchair that took 5 months and much money to procure and they leave it like, hey, no one is going to walk off with a several hundred dollar cushion or multi thousand dollar chair? AHHHHHHH. I hope they brought your chair back to you.

missnomered: does this mean you have TOO much time, or too many smarties? I look forward to the picture!

Judith: well, the care worker will, regardless of her current attitude actually get older and more dependant on others, have an accident or break a leg and need people to care for her - that isn't like a nasty wish, that is just what happens over a life. Maybe that will educate her?

Yes, my life a muddle, your weather a muddle. Ack! On the other hand, now they are predicting a heat wave here. JOY! (not! Called a Death Wave by us heat intolerant types).

Ruth: Thank you, I will try to be honest, but not nasty or whingy too much. Yeah, it is hard when trying hard and something insensative leaves you stinging.

For the rest of the comments - I will return, I just have to lie down now. Sorry about that. Seems that between nature and willpower of Beth, nature wins.

SharonMV said...

Beth, I am flattered (& in a respectful, love to be with you way), but I did blush a little (and smile). I haven't been quite where you are (never had the big "T" dx), but it has been & is a long, long road. Glad you enjoyed the story of my craft store adventure. Have been resting mostly today, but so far no damages. Will be another day or two before I know if I escaped catching another virus or other bug. But at least I got to go somewhere fun.

Another small miracle yesterday - I actually spoke to a live person at my rheumatologist's office. Got advice from the doc via his assistant & an appointment on Monday.


Neil said...

Hi wonderful:

Yes, dear, I did wonder if you might be slightly type A. Just a little bit? (Snort)

You don't want to receive dried poo? Darn, there goes my next prezzie to you. Maybe you prefer the fresh stuff? :) Sory, beth, couldn't resist.

As for trying to help yourself before Ms. Nightingale helps you, maybe you should have a large wrench handy, and help yourself by flinging it at her head when you need help. Only problem: if you miss, you might damage something.

Actually, it wouldn't upset me that your care? worker doesn't get all flustered or bothered when you pass out - AS LONG as she actually does something for you when you do. Maybe she was an EMT and has lots of experience with people passing out.

Or maybe not.

Thinking of you often, reading daily, caring always, sending hugs every time I think of you,