Linda and I talked today, and from she saw the other night, she told me that when the time comes and my organs start to fail, one after another in a ‘cascade’ she hopes that it only lasts 30 minutes until I die. I have talked to specialists in heart and circulation autonomic failure, specialists in Neurology who have seen hundreds if not thousands of people die or have autonomic failure and there is nothing they can do for me. That’s why we weren’t in the hospital. When my body starts to fail, it fails in multiple systems at once, heart, respiration, conversion, vascular-dilation, inability to heal, blood and liquid transfer, even basic commands like, “You want oxygen, time to breath.” Linda and I can’t remember the last time I have been hungry, that’s how long ago that signal died.
As for Saturday Night/Sunday Morning, no human body should be able to do some of the things my body did, and never at that type of speed. For example, my hands changed size, one growing to 1/3rd larger than the other, then switching, in minutes, then switching again. No one knows how much or how long the microcapillaries can stand having most/all the blood withdrawn out of them and sent to one limb and then sent back to the bursting point again and again, all happening every few minutes. I’m not even sure that without an autonomic system on the fritz to give such bizarre traffic signals, that it is considered “possible” for the human body. Either way, I do not expect it to be very long until more “seeping” blood bruises appear: because the microcapillaries were not made to withstand that. It is a bit like attaching a propeller for a plane to the motor of blender, it is POSSIBLE to make a propeller go, but not for long (do not try this at home!).
Okay, moving on. Since I do not seem to be dead, I am rewarded the rest of the week for being sent to nerve conduction tests. There is one on Wednesday which interests me because it will involve at least 7 hours of loss of function and increasing pain. So, I am having a hard time thinking LONG term; want cheery? Talk to me on Thursday when I only have to go to the dentist (ha ha!). So Linda got me from The Chair, and brought me into the living room where she had created, for me, a Teddy Bear Picnic.
We even had the Beatrix Potter china set from the UK so I could give the bears “pretend” sips and feed them cake and then chide one that “no, you already had a piece” to make Linda laugh.We go on. For me, having all of us happy with each other watching TV on Sunday was more important than immediate health. One I can enjoy, the other just does what it pleases. It turns out that badminton, with shutting all the doors and turning off all ventilation to make sure the birdies or ‘shuttlecocks’ are not affected has turned my enjoyment of the sport to something where I wonder how many heart attacks a summer they get (if it is 26 degrees outside then probably 35 degrees inside)? I guess this is a good time to see how quickly I can start that Judo class.
To let you know, in caregiving, during pain, transfers, or emergency, things are counted different. If there is a difficult thing or transfer then many seconds of “No, don’t grab there.” And “Fuck, I’m not actually elastic!” and some odd cursing on both sides, then once settled, both parties go, “Well, that actually went pretty well!” And it is counted as "good." So, Linda pushing or shouting at me, and me brushing my hair is just how we show in our own ways that we care and it means what it means: that Linda cares, and that I want to have some control, however small in a situation both extremely painful and very much out of my control. And no, I haven’t really talked about that before because I didn’t want anyone to misunderstand. But we (Linda and I) talk about it.
I asked Linda what she is looking forward to, because I realized that now, I had nothing, nothing to look forward to, nothing which to anticipate. That is not a good head space. There is a half marathon in 5 days but I am going to avoid a thumping and NOT enter the race and THEN tell Linda. In fact, I am actually going to admit that probably for a person who wasn’t sure they could do a 10K, a half marathon right now might be a bit optimistic (interpretation: suicidal!). Considering that I don’t know if I will be able to get to The Chair in the study without Linda to help me and she is at work tomorrow, then yeah, not quite ready for 1/2 marathon. Pish! Details!
What we decided was that I wanted to go somewhere that had a subway, or train system. And we talked about how amazing Japan was, and how few “bad” times we really had, and how the fights with hotel managers are fading away in the memory to the wonder of that trip. It was a trip that started with me having a drink with gold in it, in the most famous hotel in Japan and finished drinking at Hotel Keio overlooking Tokyo Tower.
But I can't live in the past. And I don't know how to live in the present. Remember I only promised to TRY and I am trying, trying to find a way forward, trying to find something to jump start me, to get me excited, to make me believe that there is “living” ahead of me, not just “enduring.” And I realize now that one of the hardest things is for someone to care about another person, even a person they have not met but learned about from the internet, is to know that you are utterly and completely helpless to take their pain away. Yeah, it is likely to be rough for a while, maybe for all of us. But that’s doesn’t mean I want you to get in your car with your “smothering pillow” (I did, I think, put my pillow over my face at some point and tried to convince Linda and Cheryl that if they just pushed down really hard, it was a ‘game’ we ALL could play!).
I think in a post a short while ago it was pointed out to me that asking for help is hard. Well, I need help; I don’t want money or flowers; but I do want help getting jump started, I need someone to help me take off again. I’m not sure what that means even. I just know that right now, I don’t have a feeling that I want to live. I want that feeling back of looking forward to seeing the next day, the next adventure. I need to fly.
I need to fly.
Posts
33 comments:
Yeah you were holding a pillow to your face telling me and Linda to "push down hard, it's a group activity'. That's when Linda put the pillow back under your head and I told you we would "table that topic to revisit later".
Cool, you got to have the Teddy Bear picnic!
Subways and trains? San Francisco has both and they are accessible. Shall we brain storm some new adventures when I come over?
extends a wing...
WCD
Dear Elizabeth,
I wish I could fly - I would fly high & far - I would fly to you & take you with me. We would see the earth roll out below us, all the places I know I've wanted to travel to. I would take you on such a trip, just like you took me to Japan. Night and day we would fly across mountains & oceans & cities & farms. I'd look down & read the Greek inscriptions to you. We'd know the minds of the people below & feel the animal's running 7 leaping. A night and a day then night again. We'd watch the moon glow, full above us, its light gleaming on the sea below. Then I'd take you home where Linda lies waiting and you'd sleep a gentle sleep an untroubled dreamless sleep. And wake to cool day with soft wind blowing from the ocean and squirrels chittering at the window.
I made something for you - Oddly on Saturday evening I finished a little somethig I'd been planning for you. got the package ready to mail today - hoping it will go in the mail tomorrow.
Sharon
I've noticed on YouTube that you've already done the hand tricycle thing. Is the racing chair totally out? You could wheel with Linda cycling; but that of course requires a Linda who's not at work...
I'm here, I'm reading, I'm with you in spirit, and I'll lend a wing too.
Love and big hugs! And thanks for letting Linda take a turn at the keyboard. She'll do fine.
Toronto has trains and subways .. not just Tim Hortons and porn. A long trip for you (but not as long as Japan) and there are still some kewl goth shops on Queen St W and as mentioned before, some nice cemetaries too. Miss Hayley and I could show you
Sharmony, that was an absolutey beautiful post. You actually made this old guy cry a little
Yes! The teddy bears have had a picnic. And tea. Was there tension between the bears? Any snide remarks made about how much fur someone may have left?
Now, as for you needing something to help you take off again, might I suggest that it is OK for the moment to do a bit of nesting? More amusements with teddy bears can't be a bad thing. And you can take it public. I have found that people are more than happy to pose with Raaaahr! Monster. Oooh! That reminds me. Wine tasting trip tomorrow for me. I have to pack R!M. OK, back to what I was trying to get to. There are plenty of things to do that won't leave you breathless or over-heated. Take a bear to lunch at a nice restaurant. Be sure to ask the waiter to take pictures. Not that you have to involve the bears. Maybe they are very private. I don't know them personally. How about taking yourself to poetry slams? Or make masks and wear them to the cemetary at night?
It's good to know that when you die, it will probably be no worse for you than what you already go through, and that it won't really take all that long. But that will come when it will come. Until then, you still have a life to lead. Because you want to lead it, even if you are too exhausted to really quite care at the moment, you will indeed live it. You will fly.
Hi Elizabeth, I'll be here flying along with you as long as you are.
I live in the neighbourhood and if you would like we could meet up for an iced mochaccino sometime. I can regale you with some tales of true life crow encounters I've experienced.
Like that time one night at work when I stepped outside to get a breath of fresh air in the predawn. Several steps out the door, I suddenly stopped. Something...wasn't right. Something about the sound of the night was different.
I slowly looked up. There, less then ten feet above me were crows. Hundreds of crows. They lined the bare steel beams over the courtyard, along the edges of the roofs. It looked exactly like a scene from a Hitchcock film. But instead of being in black and white, this scene was all inky black crows in the dark of the night. Hundreds of crows. And even more arriving as they straggled out of their roosts in the forest around Lake Burnaby.
Shoulder to shoulder, long rows of crows. Looking down on me with sleep still in their eyes. They murmured and gurgled quietly to themselves. Yawning and scratching and slowly starting their morning preen. Getting ready for the sun to rise, when they would disperse in groups all across Vancouver to do their daily jobs of inspecting the city's dumpsters. Then to play in the parks and along the boulevards, tease the cats and chase each other from tree to tree.
Yay on the teddy bear picnic!
I... actually have something I need to e-mail to you. I don't know if it'll help much, but it's worth sending your way, and if it does work out, it'll give you something to do (admittedly, something on the computer) with the added bonus of getting paid for it.
Your next adventure will come on Saturday. It's not exotic, but it will be a diversion. For now, I must go to work. But know that I will gladly serve as an excuse for any type of diversion...
I would add a tigger or two to the teddy bear picnic. Everybody knows that a little bit of bounce makes everything better.
Keep talking - your friends are listening.
Should we all die our hair pink and send you photos to show you we're with you? :o)
It probably doesn't feel like it but I see that you are flying right now.
Your words reach me and many others across oceans and continents and they lift us up. You come through the air and my heart soars.
When I need a kick-start, I try to think of either something I can make or something I can learn. It's always something fairly cerebral, but it is the best I can do.
It doesn't have to be a big project, but something that's ongoing and doesn't depend on leaving the house or expending a great deal of energy. So I might think, "I always wanted to know a little more about lamp-posts of the late nineteenth century," get books, audiobooks or DVDs on the subject and find out something new. I have to say that's one I'm saving for when I'm in extremis - or possibly until after I'm dead, but still, it could be something going on in my life. I don't know - a period in history? A culture? An area of technology? A novelist or composer you'd meant to get to know better. The only thing I wouldn't recommend is language-learning, which is a git for cognitive dysfunction.
Intellectual adventures are not to be underestimated, and can expand the world just at the moment it appears to be closing in.
But if you can go somewhere fun instead, then that's probably better. ;-)
I wish I could take you flying...
I'm a private pilot. I fly little planes, and I especially enjoy the ones in which I can go upside down. My favorite moment in flying, though, had nothing to do with aerobatics.
I live up in the mountains. One night I flew away from the city lights, over nearby hills, up and out far enough that the city's glow was not over the horizon and there were no lights below me. It was a clear night with no moon.
I turned off the interior lights of the plane. I had to leave the wingtip lights on, but they didn't make much difference. I was up pretty high, so I turned off the engine for 30 seconds or so.
I was hanging suspended between deep darkness and blazing stars, in complete silence, not connected to anything or anyone. Everything was clear and calm, and the stars were amazing.
That's the best I can do to take you flying with me. It was one of the most amazing moments I have ever had.
*hugs*
I love the teddy bear picnic, by the way.
Hmm....
You say 'fly', I say Virtual Reality Headset!.
Hey, barring wings it's the next best option :D.
My teddy bears are in the loft and would probably try to maul me if I played with them now after so many years of neglect.
How about Paris? I mean, you did just get back from Japan, but they have a lovely Le Metro (subway) where old perverts grab your bottom and pick your pockets, but oddly if you turn and give them a shove they become very flustered. Apparently most tourists are too startled to respond. And there is the Louvre, which has big wide smooth hallways and Winged Victory.
I see you as Winged Victory, in a way. (pic for those who don't know her: http://commons.wikimedia.org/wiki/Image:Winged_Victory_of_Samothrace_side.jpg ) She has lost parts of herself-- she must not have much memory with no head and she would have a hard time with most of her functions lacking arms, but she is Going Somewhere with purpose and ambition, triumphantly, and her wings are still intact.
There is also a nice dungeon in the part of the Louvre that is excavated from an ancient castle, which your goth self would like.
If not Paris- even if only the living room- keep flying and resisting.
Yeah. Fighting to connect to something, anything, that takes you out of your head and out of the crap to persuade you that it's worth it to stick around a little longer is a bitch. And it must be even harder for you, who's used to expressing yourself physically and now have to shift to something else. I'll think on it, see if I can come up with something.
Have one right off the top of my head, though. Might sound a bit... erm, basic (and possibly crazy), but how about getting a cat? There was a long time not so many years ago where Mojo was the only thing in my life that made me laugh. And with a cat, you're guaranteed at least one good laugh a day. They're fairly low-maintenace, damn good company, funny, cuddly and extremely therapeutic. Just a thought.
I love reading your comments. You have such a good group of people around you, the proportions seem so good between useful medical suggestions and poetic incantations and people saying things they think need to be said. I really love rachelcreative's idea, give us some silly mission to go on for you. I agree with her too that you *are* flying, and in a way that has always been who you are, because you are a writer, and you are touching so many people with your writing.
Thank you for writing the hardest parts Elizabeth, that is part of who you are too, I know it is -even if I have never met you.
I don't know, what really fun drug is there that you haven't tried? I mean besides the stifling gymnasium inducing endorphins? I hear opium is nice ; )
I'm here, we're all here rooting for you. That's something anyway, perhaps a metaphoric set of wings.
Cheryl: Well,when you change your mind, let me know. Yes, let us brain storm new adventures with the woman who sleeps with frogs (I think there is a SGT. Frog anime bodypillow - would this be a good gift? Or would she have it already?) - and yes, this is me being VERY naughty.
Wheelchair Dancer: Is there to dance where you are barely out of control? I seek controlled oblivion.
SharonMV: When I sleep, I fall backwards into a giant pit of darkness, it never ends, I just keep falling.
High risk means recovering, then going against the odds again, I somehow never got good at the middle bit.
Neil: Oh, I will try wheelchair racing in the evenings, I have already started to plot a training route (one without lights or much traffic). The techs rigged up the chair with a gatorade AND an oxygen tank holder, I only need someone to turn the handle to get the oxygen flowing while I roll. I just can't do it during the heat, and next week there is a five day heat wave predicted.
Victor: Toronto, the megacity. I don't know, I have gone on every line in Canada already, even the one to churchhill, and every amtrack line as well. Thanks for the idea, I will think on it.
Yanub: my bears are well mannered bears, far better mannered than I in most instances. I take a bear with me on every trip, it just deciding who goes, and that is rather easy since they all have the same name: "bear".
I would like to add some glowlights to my chair and figure out places to go at night.
Sorry, that was just linda's hope for the time, it is hard to say which path the final one will take. I want a day to have meaning? Now just filled with breathing, and trying to eat.
Stephanie: the true crow experiences sound interesting, I won't be going anywhere for a while except to hospitals and testing clinics, but thank you for the offer, perhaps we can delay it for when I have more speed.
Lisa: ha, thank you, I think I will send in as a lark, I just hope I don't spend two hours on just one question - as getting the "right" answer will probably take about 12 pages.
Maggie: a tigger or two would be perfect, I look forward to our erotic adventures. I'm surprised you are so bold, or is that my dyslexia acting up again.
RachelCreative: some days, it is not 'fight, fight against the dying of the light' but 'fight fight, for the right to HAVE light' if you know what I mean. I must live with the constrains of my body, and yet, I will fight for my freedom; the freedom of dreaming, of adventure, of doing things that matter.
Teddy bears I like! I've never quite lost the feeling that they are a bit alive.
Hmm - it's difficult to spark the flying thing in other people. Things I do are - go out where people are, get the sun on my face, touch stones and leaves and grass that is soaked in sunlight. I have to get the flying to creep up on me.
Or I consider space - the universe, stars, just the distances - Louis Giglio is good on space (and on God of course). I love it when people get astounded. And I get that whole Zaphod Beeblebrox thing. When he got put in the machine that showed him his true place in the universe - it was meant to drive him insane but actually it just confirmed that he WAS the centre of the universe... Well he was crazy and etc etc and I'm a geek! But space, it just makes me feel outside myself - it's a glory sort of thing.
I like ideas or concepts that I can't get my mind around. I like it when my brain is too small for what I'm thinking. It should be a big deal - what we do and what we are. It IS a big deal!
Or I write. I know the rules about sentence structure and grammar. So now I can break them and twist them to get what I want down on paper. That's something for me - lifts my heart.
Hoping there's something here for you too.
Thoughts of solidarity and prayers for purpose.
J
Emailing you. Reply if you are willing and able.
Elizabeth,
I know sleep is not a good thing for you. I'm sorry about the pit - I've been on the edge, but not falling into it. What I wrote was just a fantasy, a wish for you & me. I'm sorry it did not comfort you, but I understand. I'll try to be less fanciful.
But speaking of fancies - I have a teddy bear family too. 3 bears & one monkey who thinks he's a bear. they're called the Curmudgeon family & keep me company. I'm sure they'd like a pinic.
Sharon
LOVE the teddy bear picnic!!
You know, in my circle of family/friends, we call that "pillow therapy" and I think I've asked for it a time or two...and not just for myself.
I can not fathom the health issues you are going thru. When you describe it, I picture in my head, a computer screen flashing "fatal system error".
You will come up with something for your next adventure. I'm sure of it.
http://youtube.com/watch?v=Z3q9WdjD5wc&feature=related
Wendryn: the joy you take in your flying really shines through and that does sound pretty magical. Now, if you had done that while flying upside down....count me in! (see, no silly risk, no extra juice).
Giana: I'm a little scared of them after reading that guy talk about using them as birth control (I assume he is talking about the addictive qualities, not the level of radiation). But I did use a virtual headset to fly a gliders, and the person doing it wanted to know if I was a helicopter pilot, becuase apparently most people don't use thier glider to point straight down to the ground to gain speed before flying inverted and sideways between buildings before looping up and out - I knew the theory, I just wanted to see if it worked in practice, and since no on will let me try with a REAL glider, that is as far as I could get.
Good idea but no way could I survive that flight and I have been to Paris and the Louve and Versaille - the one place I want to go is St. Micheal (Michelle)? The castle/monestary seperated by the tide on the northern french coast/brittany coast/Gaul coast (depending on your time reference - I guess it wasn't there during Gaul times).
Lene: I SO much want a cat! To bad we are in another no pet building, which being one of the few accessible ones in Victoria, - I wish they had guide cats but so far only the cats have trained the owners, not vice versa! Right now we are fighting to get a window air con for the summer as the portable can't keep it cool enough and our lease says we can't have one but it is a medical neccessity.
Em: thanks, actually it is what I don't write which is the hardest part. What I don't say, or what I don't talk about, what brink I pull back from to talk about something else, to force myself above myself. If I could not write, I don't know who I would be. Or rather, I try not to give in to the easy but to look again and write the hard - so maybe you are right?
Tornwordo: well, I don't didn't do drugs before and right now even doctors IN hospitals are scared to administer much to me becuase if drug A is supposed to make the heart beat faster in the general population what will it do to girl from the exorcist turning funny colours and body doing impossible things....make her start bleeding out of her eyes? Seriously, doctors will like give me a 1/20th dose just to see if I live before they even try to give me 1/10th or 1/8th of a dose. And the opiate I use is a synthetic which is specially made to NEVER give you high - it just blocks pain receptors, it doesn't ever make you FEEL GOOD. Figures that would be the one I would choose, huh! But I do see some pot in my future.
Dawn: Nothing has arrived from you, slightly concerned, you okay, computer problems?
SharonMV: I am sorry, I thought that was what you saw, this is what I see when I close my eyes, not a metaphor. I don't want to be so far away, it makes me feel a bit like The Little Prince, so far away, alone, on a planet, only to come to earth and land in a desert. How can I bend people to my will if I am too far away - Maybe I need a horse and a banner (again, not a metaphor). But the falling into a pit is a reoccuring dream I have.
I hope you give your bears a chance for a picnic.
Tammy: Yeah, I seem to have recieved an body operating system from Bill Gates - "Try Vista for Autonomic Systems!" - Blue Screen! Blue Screen!
I have an idea, but that can't happen for many months, I need something for the now.
Frida: Well, I AM intrigued by the job, do they have a position where you use your wheelchair along the powerlines?
Dearest Elizabeth,
I cannot imagine (nor do I desire to) the pain you are going through because of your disability.
As a disabled military veteran, I can however, relate to the pain you are going through. There is a difference, contrary to what people may believe.
Because of my disability, I will never be the same, but what I have learned is that my disability does not define me, but rather, I define it.
This is not to say that a disability or disabilities can overwhelm a person, they can, and do...as anyone with a disability can relate, but rather, I look to what my disability has offered me in life. Although I can no longer walk without a leg brace, or do mere simple things like tying my shoes by bending over in a chair and doing it, or making sure I do not slip in the bathtub by grabbing a towel bar, to name a few simple things.
My disability has offered me the ability to become a much better public speaker, speaking out about people with disabilities and their abilities, and to write about it, informing the general public.
I fall upon the adage I learned a long time ago...it is not disability, but ability, that defines me.
Sincerely and Respectfully,
Gothguy
P.S. I advertised your blog on my blog, I hope you do not mind.
It was only a 24 hour trip I imagined. And I would have been there - so not completely alone. Being so isolated, I'm definitely out of practice with trying to bend people to my will. I admit, there are times when I'd love to be proficient at that skill.
By the way, I used to live in Berkeley & took the underground train to San Francisco all the time. Went to school at SFSU. The metro in SF was good too.
stephanie - I loved your story about the night encounter with the crows.
Victor - thank you for the comment about my post.
Sharon
I could just imagine some poor person sending in a cell phone question and getting 12 pages back two hours later. :)
Now you're just out of control.
Wow, I haven't been able to read in awhile and I drop in to find that you've been through another hell time with pain and body breakdowns. I'm not surprised that you've come up against that edge again of not being sure you can continue to live. This maybe is the upside down flying you are doing right now, the hang onto your seat, grit your teeth wild ride. You'll right your plane again and feel you can bear it and can see the life in each of your days that is worth living.
I've written to you before of being a daredevil and an academic overachiever and I can really relate to the daily struggle to find meaning and finding enough light to feel like this life I have found myself living is worthwhile... is still ME somehow. It's tough, Elizabeth, and I think it requires so much rethinking and refocusing. And acceptance. Acceptance that some days will be bleak and some days will have a bit of light and some days will have a bit more. And none, perhaps, will have the amount of light you have known and still crave. I think it takes a lot of mental gymnastics to focus in on the small points of light and joy and really let them sink in. Paradigm shifts, and all that.
OK, so those aren't direct ideas to help you fly, but I do hope that they help you know that the bleakness makes sense and that it will ebb and flow.
Have you ever tried a glider? Not quite the same thing as flying, but it's something. I've seen advertisements somewhere about people who bring disabled people up. I'd suggest ultralights, but I think it be too easy to slip out.
San Francisco! In the summer it's in the 70s most of the time, 80s once in a while, and 50s at night (Fahrenheit scale). The subways, trains & buses are accessible; upper Haight St. is mostly tourist/hippie, lower Haight St. is a bit more grunge/biker wannabe. Of course there is the Fisherman's Wharf tourist trap... I don't know how accessible Alcatraz is...
And depending on when you come down is how much hospitality that I can offer! A place that's at least semi-wheelchair accessible...
What would you like to do if you are able to come to San Francisco?
If you went to San Francisco I would have to drive up and join you.
thank you, again...for all of this writing. it's been a real gift.
i've been thinking about what you said about Christians the other day...and really taking it to heart. i wrote one of my more important (to me) papers on mental health and theology, and one of the things i kept hitting was that a lot of congregations didn't have a capacity to handle serious pain...especially if there was no clear solution to that pain.
i never found out what the x factor was, the thing that made a church able to constructively meet someone in pain...but i'm still searching. and that presence that you talk about is truly important.
i also take solace in that as I know God, that God has experienced all of human existence, including disability. someone wiser that i once asked me: "how do you walk on crucified feet?"
may you fly...
-sly
Alcatraz is most fully acessable if not completly accessable. They have at least one employee who is in a wheelchair. If need be, I can make some calls for you, have Linda or Cheryl remind me on Saturday and I can explain.
Post a Comment