Wednesday, July 30, 2008

On Dying and Living, and 18 days.

The last few days I have been trying to focus on posts where I don’t always look passed out, or in pain, or feeble, because while that is part of my world, perhaps a majority, it isn’t all I see and do. And Luminara, as well as going to the Moss Street market and talking in Japanese to Yoko (she is from the prefecture just above Tokyo – here we are talking Punikura poses!) are other aspects to my life. Admittedly I only have these public parts because I have a partner and lover, and a very good friend (not yet lover!), who support me medically and physically to make it possible for me to have those experiences.

I even still have enough humor, on some days to make a “Oh sir, pity a poor, poor crip like me!” face; or is that my winsome face? Or the puppy dog one? I sometimes get them mixed up?

At the moss street market Linda was trying to convince me that the pink fu-fu headband with fluffy pink fuzzy was actually “ME” and would make a great addition to my skull headbands. For some reason, probably because Linda is such a bad liar, I was not convinced. What do you think, is the pink fuzzy that screams, “I want to be a ballerina!” really ME?

We dropped by the bank Saturday and I asked Linda to take a picture of us posed by this old Dodge (1930’s?) as a typical “Victoria experience”. Victoria is a haven for old cars and collectors as you get a $25 “collectors” driving plate and with the seniors, there are lots of 40’s and 50’s cars tucked away in garages until the next generation finds them (same with those silver Gulfstream trailers).

The reason I have been doing posts like that is because the last few days/weeks have been full of conflict with Beacon, and doctor’s orders. To leave a weekend of going out and then go back into micromanaging new caregivers, and spending most of your day's energy getting more tests, and again, more tests is emotionally hard.

Now that I have had a seizure in front of the doctor, he cancelled the anti-seizure med he was prescribing THAT DAY, because now with these additional tests he may find a better medication. But until then, he would be delighted if I could have seizures in front of everyone, and record how many I have this week, be put in an observation unit. While now, after 17 straight days of tests, meeting and activities, and going into another two appointments tomorrow, I AM having a seizure or more a day.

But the pain of always more, the finality of where it is giong, the overwhelming stack severe “ideopathic” things like auto-immune diseases and so much that pulls emotionally and literally at me is too much. Having to explain in detail, how each system is failing, three times a day as Beacon has pulled all my regulars and now I have to explain to each new worker, explain how they could fail while they are there is a hammer of my mortality, my own fragility. To then have to listen to then give yet more advice like going to a herbalist who did wonders. Or "Have you seen a neurologist?" (One of Yesterdays' workers) Or explain that no, this isn’t a condition they just found, it was observed in 1900, it is just nothing so far works. But two treatments HAVE been tried with limited success (in the US). But that I, like the disease Alzheimer’s (in Canada ) can’t be officially diagnosed until after death.

If you want to die, stop reading now. Because I don't. I may have thought I did, until I faced having mini stroke after stroke until my mind was swiss cheese and though function after function is lost (today, I tried to eat and choked instead), the body drags on, like a beast toward Bethlehem. T.S. Eliot was actually a bit of an optimist; because death and the end do not always come quickly, and so it is not a whimper, but a prolonged moan, with sobs and whimpers.

I do not want to die and inside of me there is a child screaming, “unfair, unfair, unfair!” No matter how horrid a person is, do they deserve this? Linda or Cheryl or both have used the ambi-bag this week. It is a bit waking up to being hit in the stomach. Turns out the ambi-bag, which breaths for you does not care if your gut or lungs get the air. So you tend to tense and resist as a first sign of coming to awareness, of self breathing.

Today was a seating clinic for an electric wheelchair; an indoor chair (which I can take outside) with head rest and tilt for seizures. They built it so that I cannot flip out while in a seizure, as I did in the doctor’s office (and still have nightmares about). When I protested, Janet, the blunt speaking but probably more effectively caring person over this last year, said, “Does that mean you will want to be wearing a helmet then?” She is the first person who does not want to observe, she wants to solve.

Janet is the eternal optimist, except on Friday when she saw me again for the first time in several months. I had lost more weight, and we explained the medical situation. She had to turn away while she said, “And you were the person who came to me a little over a year ago because you were falling down.” But then, between then and today, she sucked it in and came back with getting a chair for me that would enable me to keep writing, to use the computer, to get to the bed and bathroom AND to go outside and use it with my limited hand function, and when that fails, she is ready for that too.

I did not know until today how little feeling or control I have in my hands. I ended up having to roll my left thumb (strong hand) sideways over the on switch to stop double to triple pressing or over-pressing and turning the chair on then immediately off. I could use the thumb and join of the index to drive forward but had to learn how to use my shoulder to back up.

The chair will be rigged so that it has an indoor headrest and an outdoor one. It will be rigged so that I will have not only head support but as things progress, I will be able to maneuver the chair without a sip and puff or a cheek joystick but with micro head movements. That however could provide an interesting demolition wheelchair if I have that feature turned on AND then have a seizure.

I’ve learned a lot in my 17 months as a manual chair user. I’ve done a lot and I hope I still can do more. Janet is moving my Wheelchair report to the top of her list, and will be hounding Blue Cross for me. She says she WILL get approval from Blue Cross in three weeks from today, maybe two; and for me, a person who has had a chair less than two years ago (they don't approve chairs except every five years). I don’t know what she sees, but she seems sure of it and if she can get that approval in 1/3 of the time, that means only extra six weeks until the custom order is delivered (two months optimally). The way she talks, it will be a bit of a race between my ability to transfer being lost and if the electric arrives in time.

That seating clinic took three hours and I had a seizure. In typical fashion she and Randy (wheelchair guy) conspired to convince me that I had somehow agreed to order the chair in Barbie Pink while I was unconscious. As I couldn’t talk my hoots of displeasure amused them. I indicated that I wanted purple, and pointed my good finger (post seizure) to the skulls on my shirt – Dark Purple with skulls!

I lay this afternoon for more than an hour trying to sleep, on valium and pain pills but could not. The voices talked while I lay thre. So when Linda came home she sat on the bed and listened, helped me while I unburdened and cried. In some ways, I can and am already ready for death, in the way one makes a list and does the chores: Given Medical Power of Attorney over – check; Arranged a will – check, Arranged a living will – check; started making special bequests known – check, talked to Linda about going on a trip, back home, leaving this behind, after I am cremated, at least for a week or two, so she is not alone – check.

But then, some days, in the quiet, I realize, that while it feels the same like when I am about to walk out the door on a long trip, like I looked around at my stuff before the trip to Japan. That feeling I get, making sure that most things were taken care of, realizing that I wouldn’t see my books or DVD’s and never got this project or that finished in time; that whatever is, is and it is time to go.

But then it sinks in. This isn't just a checklist, or a trip. Because I won’t be back. And the weight of that rushes in.

I have fought, and fought, and fought, and fought and right now, going into day 18, I cannot fight anymore. With my care agency, with the doctors, with the specialists, with anyone who wants me to suck it up. You come here and suck it up; you go between appointments up to the Y to force yourself to exercise to keep that circulation going, and then overheat that night, and yet after 6 hours of sleep get up for 5 more hours of medical appointments. No pain specialist yet, three pain pills left. I have fought and fought, and fought and what did it get me? What treatment am I on? What more is asked that I 'should' have done?

Oh yes, due to all those test, now we know how many different parts of me are non-functioning or failing. The times I am not testing I am instructing or explaining to new caregivers what doesn’t work, and what that means. I cannot escape it, it surrounds me. And yet, I want to escape it.

I have lost a year with Linda due to those tests and fighting. This week, last week, I have lost 10 days I could have send postcards to people I care about, to people who are alone, who are housebound, who are lonely; I could have MADE A DIFFERENCE but instead I was on the medico treadmill.

My GP won’t use the D. word but he doesn’t talk beyond five months; indeed in a town where EVERYTHING takes nine months, I am getting my tests done from the ordering of them in 2 days, getting seeing my new specialists in six weeks instead of six months after he talks to them. What do you think he says that makes only one of two specialist in town put me at the top of the list? That convinces them I can’t wait 5 months?

I was and am tired, exhuasted, in pain and I cannot escape. There are no tricks, there are no moves. I will not fight anymore today. Or tomorrow. I will send postcards. Becuase that is what I want to do. Though as my careworker last night said looking at my little desk and the box of postcards, “Not much of a life is it?”

It is LIFE, though, isn’t it? And that is enough. And that maybe someone smiles out there because of how I choose to live, while I can continue to find and send postcards, it may not be enough, but it is something. I have been working on another project. Maybe it will have some use, maybe it won’t. For me, Xmas and Birthdays, this year, are when I have the energy to celebrate. That is now. This is my Xmas.

I know that every day, or night or activity in which I stress myself could be my last. I also know that I have a body built of exercise done almost every day (or four times a week after disability), of never smoking or drinking. And I believe that I still have a long way to drop. Yeah, I’m below a lot of disabilities now; a partial quad without traumatic injury among others. But the heart beats on, and I can get a pacemaker when it doesn't, and the lungs breathe, and I can, it seems get a diaphragm pacemaker, if I find anyone who knows how to install it.

I want to see the cherry trees blossom again.

Right now, I get heat stroke at 22 degrees centigrade and Frostbite at 13 degrees centigrade, yes that is far above freezing (as Cheryl or Maggie will verifty if you don’t believe me). I cannot survive traumatic amputation, or surgical, not without a lot of transfusions and some luck. So, as Janet, the diabetic said, “Be glad of the bits you have while you have them.”

I asked Linda on Saturday to get pictures that day, that weekend which showed me living. Living in that day. Because I am moving toward death, and I can either, in pain and exhaustion, be dying. Or I can live, in pain, and suffering, yes, but live, the hours and minutes of smiles and getting to know people, using my gift to talk to people. To joke, to see the grass and trees, the cat crossing the street, children throwing tantrums, people angry on cellphones; and on the other days, to live, even in a room, closed off, writing postcards, writing blog posts.

I love living.

O that there were more to go around.

26 comments:

yanub said...

That top picture of you at the market is great. You look like you are a regular, whether or not you really are. The pink fuzzy? No, not with red hair. You need the white flowers with the multicolor centers.

Pink is conspiring against you. A Barbie Dream wheelchair? Next thing, someone's going to hook you up to a pink respirator. Have you considered a new medic alert bracelet that says, "Please, for the love of god, no pink!"

I don't understand your doctor not prescribing you an anti-seizure drug on the grounds that there may be a better one for you. He doesn't seem to be paddling with both oars.

I think your caregiver, the one who said "it isn't much of a life," is wrong. You can't get out and about very well, and even staying home has its risks. But I don't see how that undermines the value of the life you have. It's a full life that you squeeze into the moments of clarity and consciousness. I'm glad you share it with us.

SharonMV said...

Love you Beth - I'd give you some of my days if it were possible. Hope you get some relief from all the medical stuff & dealing with new workers. And get started on your new meds soon. Will GP prescribe pain medication for you until you can see the pain management doc? I hope so.
I think the postcard project is an important part of a life. Who knows how many souls it will touch? What you will learn - how much it will ultimately mean to sender & receivers & those just going along for the ride by reading about it. It already means a lot to me to be involved in a small way as my stickers get sent out with some of the cards. And of course I cherish the postcards that I've received.

Sharon

Meredith said...

I can understand you. That inner child screaming thing is what drives me to at least help my researcher friends find the key to immortality. This way death wouldn't be forced on anyone (by either medical or financial factors).

And wow, frostbite at 13? When I tried last time, I was half-naked in -24 and didn't get it. No sign of discomfort either. But unfortunately, high temperatures are just as sworn enemies for me as they're for you. It's like 30 'round here and, although I didn't get seizures or something, my abilities are hindered much. And my fright level is so cranked up I get an urge to run away when someone speaks to me... I hope this heatwave passes in two weeks so I can be more presentable when the university administration begins :-)

You still look pretty on the pictures. And why can't I find a picture of an exocitally colored hand? :-)

JaneB said...

Oh Beth, if I could magic you more, more time, more help, more energy, more days, I would. Keep on making some space for a little living around all the 'shoulds' - although pink fluffy wheelchairs may not be QUITE the right way to go!

Hope you have some better days soon.

Lene Andersen said...

Life is life and to opine that a particular one is "not much" shows a stunning lack of insight. Or maybe it's the arogance of health. If it has meaning to you and to the people who love you, that's actually quite much in my eyes. And I'm greedy, so I wish that there were more life for you and all of us who love you.

It's your life, your death. Do it the way that's meaningful to you, regardless of what the medical world wants you to do.

p.s. now if it was a black fuzzy headband, I'd say go for it!

tornwordo said...

Although you made me cry, I am really looking forward to the pimped out chair in purple with skulls.

Anonymous said...

I'm glad there's someone like Janet amidst the three-ring circus of incompetents you've had to deal with. *shoots nasty look in Dr. Whatsherface the neurologist's direction*

Sending postcards IS a perfectly good life, because that's what you can do and what you enjoy doing. I got the latest postcard you sent. The skeleton and brain stamps are great! A garish, sparkly reply will be on its way in a few days.

~yakiikaonastick

Gaina said...

It's sensible to make wills and what-have-you weather you have a terminal illness or not, because it's one less thing that your loved ones have to deal with. I just hope that like most people you'll see a LOT more Cherry Blossom and read a LOT more Manga before those arrangements take effect xox.

The thing about the head-controlled wheelchair made me chuckle...it is my sick sense of humour you love me for, isn't it.....?

Laura said...

What an incredable piece Beth. When it comes down to it, you have to live what life you are given with as much satisfaction as you can get out of it. The postcard project gives you some joy, and that is satisfying.

If I could, I would also give you more days. You are also right, it isn't fair. But, there is no time now for "what if's." I also know that you must live your life as though each moment is your last, because it very will may be. I never say goodbye, for that very reason. One day we will meet again and then you can show me the ropes. I just hope and pray that that day is a long way off for both our sakes.

No Pink!!!!! Yes, skulls and purple!!!!

Hugs,

Laura

rachelcreative said...

Oooh a purple chair. Cool!

You know there are a lot of people with the health and the opportunity who don't LIVE much of a life.

Yours is a life lived to the full Beth. The absolute full. And I'm very glad to get an insight into that and share precious moments with you.

Anna said...

Hi
I am warm, it´s humid and I've got PMS so I'm not going to be forgiving regarding your carer, "NOT MUCH OF A LIFE, WELL FUCK HER" Jesus, has she no common sense or fucking empathy.

About pink. I love Pink.(I have a pink Jesus in my bathroom. I think the wheelchair people was right:) and you could dye your hair green to go with the flowers.
I'm sorry the heat is messing with my brain. Could you get a "glowing-in-the-dark-chair"?

Anyway, I friend and I have a pact. Should any of us become disabled, or ill without being able to communicate, the other one will see to it that the clothes and wheelchair/bed/room is cool and matching. And that we don't have to go to the Bingo.

About dying, has said everything I know about it.....It sucks. Even though one sort of know that one is dying, I rather not, yet. At least not for a long time.

So keep having fun, postcarding and blogging.
bye
Anna

Veralidaine said...

Oh m'lord, really, a Barbie Dreamwheelchair? Well.... I love pimped out wheelchairs, I gotta admit, but Barbie might be pushing it a little!

My niece is in a brace for a hand problem that is causing her thumb to straighten and not bend again right now, and when asked about the color at the doctor's office, she wanted them to make her brace patterned like Spiderman's outfit. I think, if she were just a couple decades older, she might get along with you and your purple skulls pretty darn well. (She got blue, and was only a little disappointed that "Spiderman" wasn't among the color choices)

And Beth, who's to say you won't be coming back from this vacation in some form or another? I don't want to sound like a new-age flower essence wielding, crystal-waving hippie, but I can't imagine YOUR soul/spirit/whatever you want to call it really extinguishing itself permanently. Maybe you will become a ghost who haunts the owners of inaccessible businesses? Or you will become the muse of some anime/manga artist...

cheryl g said...

Sis

You have repeatedly proven to me that while you live, you LIVE. You mean a lot to many people and are a positive influence on their lives. You make a difference.

I do agree that dark purple with skulls would be better than pink for the chair. If you want we can trick it out with skulls like I did my cane.

Elizabeth McClung said...

Yanub: yeah, not a regular, but talkative so I guet to know people quickly. The one with white flowers, really? I don't know if I can still pull off wearing a garland outside a Ren faire.

Yes, what is this pink onslaught. I think they use pink because they know me; Linda was like, "She want black!" and I actually wanted dark purple...so there!

We will press him to prescibe Dilantin or one with low side effect to see if it makes a difference and we can always trade up from there.

Yes, Frida and her bathtub experience reminded me how dangerous the house is. Thanks for being part of that life and the clarity.

SharonMV: I love you too, I care about you, a lot and I hope that the things you are battling now (infections, flareups) all go into remission and give you good days. That you can be so supportive through such difficulty helps me.

What I will learn. Yes, that's what people forget, that sometimes the act of doing or giving or just learning to accept limitations can be more educational than years of living the same rut over and over. I cherish your stickers and I know that those who have recieved them have left you thanks on here. Between you; Cheryl and Linda Helping; and some others who provide stickers, or people to send postcards to, this is a group project.

Meredith: Ironically, I think I understand you. Sure, I've lain down on my share of benches in sub zero temperature. Never did me any good then either (try an ice bath, cold water with ice floating in it, to see if you are really depressed, if you feel nothing, or at least I did, then you are VERY depressed).

I hope your heatwave passes too. As for the hand, since it was within my first hour of getting up, my body has not tired enough or gotten hot enough to turn funny colours quite yet; though if you look at the picture of me with the puppy dog face, you will notice that my fingers are already a different color than my wrists. I think I posted a purple hand a couple weeks ago, these days that is so...passe', I don't bother taking pics of it.

Jane B: I feel resolved somehow, maybe because I am in the day 18 and so punked, but also becuase I did two postcards today and planning to do a few more. Yes, no need to go all Stepford Wife, one hopes (Denial can be ugly!).

Me too, once I get two or three good days I will be back to, "Hey, three or four years, why not!"

Lene: Well, she didn't particuarly impress me as someone who oozed emphathy, rather the opposite. More like my illness was her TV show, so she kind of liked my seizures (didn't do anything, but liked to watch).

I'm becoming greedy too - aren't we both, all the pain free days we would order on demand if we could?

Yes, well, I might listen more to the medicos if they, like Janet, seemed more interesting in solving problems of quality of life than checking boxes in diagnostic sheets.

Tornwordo: Well, that's why I had the good pictures becuase I wanted people to see that it isn't all bad, but there is that aspect. Sorry I made you cry. I hope the funding is as easy as Janet and Randy seem to think it will be as I look forward to seeing it as well. Actually more like desperate to get a non stop-gap solution.

yakiikaonastick: Thanks for commenting again! Also glad you go the postcard. I think of you. And I miss Japan, odd how I bonded with it (I mean, I don't miss having to carry around tissues to use in the public restrooms and such), but I do miss aspects.

I am also glad of Janet who has been instrumental in getting me a working racing wheelchair (so I could do the HBC 10K - and another one next month maybe?), as well as her gift of my indoor chair - now fully accessible, no more dragging myself into the bathroom, I know that floor all to well.

Gaina: It is sensible and I have had wills when I take long trips but they were more back up plans while this is more like "The Will" meaning, it is going to be used so think a bit more about it.

Yeah, why stop at one, two cherry blossom seasons. I did have this odd plan a week or so ago, based on how I can wheel 10K, that if I just start off, I will see Neil by end of summer, then on to Victor and Collette, to Lene and down to see Saraarts, make a grand wheelchair tour, on 10K a day. The realities of it, brought home by Linda quickly crushed the fantasy.

Laura: True enough, I have to live what I have, and the one thing I don't seem to have is consistancy, my condition can change quickly. Even over the last weeks it has changed so now, efforts or risks taken or energy spent is not paid for later (though it is then also) but causes fast and drastic changes immediately - so play now, pay later is play now, lie and feel like vomiting, then pay and pay and pay. So yeah, do what I can when I can.

No goodbyes, not yet, if I stroke or have lung failure while DOING, I think everyone would understand.

RachelCreative: Yeah, supercool, it is very dark purple, almost back!

I don't live my life as much as I should or want to, but then that is why I guess I stop and reflect and tell myself to look again, to make a choice, instead of letting others do that for me. Now you, you seem to be a person who bursts with passion (albiet a sort of unholy passion for obscure cameras), but a blazing passion and life all the same.

Anna: I understand your sentiments, like I said, this woman didn't give off a lot of empathy. Why she chose caregiving is a mystery to me.

Okay, a pink Jesus? Does this mean you like pink, or Jesus or is this some sort of revenge? Well, different colours go for different folks, as long as you don't go Barbara Cartland level Pink, that is fine. I actually want sort of green-glow in the dark skulls on the chair. A way for the caregivers to find me in the dark.

I like your pact, I want someone to make the same one with me - no bingo and NO sing-a-long! And why is it always with an indoor organ, who uses organs but caregiving and senior living homes?

Ditto, rather not, yet. I have a few projects left to finish.

Veralidaine: a little, maybe if I was like 18 and wearing pink joggers with matching top, but no, I have skulls with batwings.

I have to say that I am disappointed that Spiderman is not amoung those colours either! Shame!

I like to think I have such a dominate personality that even when I TRY to surpress it I can't - only Maggie sitting on me holding my lips closed has come close to succeeding.

It is just I have traveled so much, and moved often so I am used to the, "I guess I have outgrown this." or "I won't have time to finish that." and "Ready or not, the taxi is coming, so we better go." Feeling. Now, as I go down the checklist, and make these meetings, it feels the same in some way. Would I like to come back. No. When the story is no longer told, another will come to tell it...their way. I am not needed and my shadow should not weigh on anyone.

Cheryl: Good! Since that is what I am choosing it would really suck if I was crap at it! So I better get living, eh - maybe save up for those poi? If I can unobsess myself for a little while?

After seeing what you can do with a little glow rope - do I want you to trick out my chair - totally!

Carapace said...

Your caregiver is..well, just wrong. You have more of a life than most of the TABs I know, and no, I'm not joking. You may only have moments, but they're all packed. You've got a love and hobbies, you get out and do things on a regular basis. What else makes a life?

And to heck with your doctor. Treatment, not tests, and RIGHT NOW! There's no reason you should suffer just so they can gather data. That's insane.

I love your market photos! No matter how worn you may be feeling, you always look so vibrant in your pictures. Thanks for fighting against the pink-for-redheads club. It offends my aesthetic sense. Want me to keep an eye out for Spiderman theme stuff;)?

Tammy said...

Oh Beth...pink, it's waaayyy over done. I like the idea of dark purple with skulls though. ;)

Extremely well written post. You do LIVE with zest. I agree with the above poster that I know many able bodied people who don't live much.

I hope the med. appointments are fewer and far between. I plead with the universe that you get the actual health care you need out of all this at least. Hugs to you!

Neil said...

Beth dear, I cried too, a little. You're a VERY powerful writer, far better than I, who can't explain in two days what should take only a couple of short sentences.

As for pink, aren't you tough enough to wear pink? Yeah, B, Cartland pink might be a bit much; maybe a metallic sort of seashell pink would work for a chair.

As for "not much of a life," I'd say you've more life in you than any three of my local friends, and a hell of a lot more than most of your care workers. Put together.

I too would give some of my days to you if it would help. But would you want to stick around if it means a slow decay on respirators in a coma? I can't imagine you doing that. You'll LIVE until you're gone. And you WILL leave a shadow that will haunt people, but probably in a good way.

You just call when you get to Regina. We'll find a place for you. Then I'll race you to Victor's and Colette's, then on to Dave Hingsberger and Joe's.


Love and zen hugs to both of you, dears.
Neil

Shea said...

I love the pics that you posted.I too like purple way better than pink. I hope that your new wheelchair comes fast and is comfortable!

Victor Kellar said...

Sure Beth, come visit us. We have central air. And beer. And goth girls on Queen St. West. And a purple wheelchair in my garage ... and swords and several hundred DVDs and 10 grand worth of video hardware and ... well, what more could you want? We'll meet you in Sudbury or something ...

Victor Kellar said...

Oh, Collette reminded me, we have a newphew who lived in Japan for over two years who also misses the language and culture ...

FridaWrites said...

I didn't realize you'd only been using yours for 17 months--I assumed for years more than I have. Doesn't take long to learn access issues.

Sounds like a great chair. No pink! Well, it depends on what shade. Hmm. I'm trying to decide on a blue or emerald green Amigo. Green's usually more my color, but the blue is more vivid on this one. Wish the green were a little brighter or darker. With the Amigo, you can customize the paint to any car color (including pink) by sending them the chip, but I'll be ordering where I can get mine for $1000 less.

You have a very full life. She's wrong.

Bathrooms are dangerous places. My own fainting is benign, I'm told, but it wouldn't have seemed so benign if I got a concussion or broke something.

Maggie said...

I'm here and enjoying all of the pictures. As you know, it's been a bit of a rough week and I'm a bit raw. Hopefully we'll be able to visit a bit this weekend.

Elizabeth McClung said...

Carapace: Yeah, I have my couple good hours a week, and I still have drive, determination, obsession, stalking....oh wait, I don't do that last one anymore.

No, I'm not for spiderman, but I don't know what I am in the mood for, purple velvet mostly. Yeah treatment and change would be nice. I don't think I'm ready to be a ballerina!

Tammy: I agree, go dark purple with skulls. I tried to make the post a sort of 'not so fun' sandwiched between "see, I do get out" and "well, I am still planning, exhausted but planning"

I feel like I am in a war someone has forgotten, Saigon? Are there no reinforcements, is no one coming back? Yeah, treatment would be good.

Neil: Thanks, that was just mostly musing after release. and I am tough enough to wear pink, with star sparkles (they used to give those bandages to me at Peds ward where they had the needle phobia expert to take the blood).

Well, Linda does say I work longer at at higher capacity than her, but then, the more time slips by, the more there is to do, and less time to do it. To stop and feel, that is what is scary.

Slow decay on respirators..fine - in a coma, not so fine. Hey, with SOME brain I can do things, and at least one eye and a few fingers.

I think you would win that race, legs are still better at cycling than arms are.

Victor and Collette: You have a purple wheelchair in your garage? Dish? What is the story. Hey, I have several hundred DVD SETS, much less DVD's (I did run a DVD wholesale for two years). But the video editing equipment, I could use. And software! That is a LONG push and a lot of 'squito bites between here and there though!

Oh good, I will pack my language phrase book and some things and practice phrases on the trip. Really, how old is the nephew, I might be able to ease his need for Japanese items.

Shea: Thank you, I wanted to people to see that I have BOTH sides, the feeble in the wheelchair and the 'fast talker', 'smooth charmer' making a scene normal me, which doesn't get much light of day anymore, or energy to exist. Huzzah, let the purple unite, and I hope the chair comes soon too.

Fridawrites: Yes, but I did in 17 months what most wheelies do (or don't according to that support group I went to) in 10 years; several trips, overseas travel, five or six sports including tennis, sailing, boxing, badminton, rock climbing (geez was I inhumanly strong then or what?), wheelchair racing, I think I might have done some others too.

But no, a quick learning curve on access issues and frustrations, eh?

I like the blue simply becuase it blends with sea and sky and is easier to hide the chips but if you like the green, go with it, I know you can carry it off.

Yes, the fainting is benign, it is the gravity and all the things you hit between the faint and the ground which isn't.

Maggie: I have been thinking about you. Hard job this week. I hope we have time to talk too. Thanks for letting me know you are still around, on-line (You should come next year - how is that for crazy optimism - actually you should come next year regardless).

Gaina said...

Sure, your plan is odd (you wouldn't be 'Elizabeth Fuckin' McClung' if it wasn't!) and I agree with Linda, 10K might be ambitious, but even if you do 10 FEET a day, it's still moving forwards! :)

FridaWrites said...

My dad always says it's not the fall that kills you, it's the ground (when watching Road Runner cartooons and the like).

I think blue, too--it will go with more color choices in my clothing than the green. Definitely good to hide the inevitable chips! Wonder if they have touch up paint.

I went back and read some of your archives--you certainly have done a lot more than most abled people when using a wheelchair!!

Anna said...

Yep... the Pink Jesus is for real. I love pink. I love Jesus so one of my best friends and his husband got me this pink one. Sadly, when I moved to a new apartment which is very tasteful, Jesus don't match, except in the bathroom, which is pink:)

I think I would go for a black chair if I was forced to have one. I need a serious appearance at work.

About the organs.... we have one like that in our church. It is cheaper, easy to handle and move. And connectable to the loudspeeker. Maybe thats why they have them:)