Sunday, September 21, 2008

The Hoh Rainforest and The Question

How fitting it was that the Hoh Rainforest, someplace that seems very otherworldly, was the end of my dreams. It was the fulfilling of my last dream. I now have no plans, or hopes for the future, all burned away, and so this, for now is the end. But a very ‘other’ place to enjoy an end.

In fact, much of the green, the moss and mold reminds me of Oga’s oil artwork which serves as backgrounds in Ghibli films such at Totoro. Here is a scene that seem very much in Totoro’s world.
I guess the question that everyone would like to know, the one that is frustrating and dominating things is, “When is Elizabeth going to die?” I would like to know it, the hospital would like to know it and so would Linda. A lot of people would. Even though Linda HOPED that I would make it to October, but beyond that, there really isn’t anything, a blank. Here is Linda in the ‘other world’. Something we shared together.

The problem is that for single person with one paying job, having someone who is needing greater and greater medical intervention is a very serious business: it has emotional but also financial repercussions. And the truth is, even with me selling a few items on ebay (I don’t have a STORE, I sell a few things when I have the strength to put them on), we are financially tapped out (if having your credit card maxed is tapped out: sort of post tapped out). And I still have a $17,000 chair we are supposed to find 20% of, once Blue Cross approves it, much less how we are going to afford our portion of the $5,000 portable oxygen concentrator, or then, the ventilator as that becomes necessary. We just paid our bit for the $500+ regulator of our concentrated oxygen tubes we carry with us – three small bottles and a giant bottle on Linda’s back carried on the ferry just to go over so I could travel to the Hoh and back.

So when WILL I die? Because while I am brain damaged (I will try to write in detail about this later in the week) and often not able to understand in entirety, and need to be protected from information or myself at times (or in some ways, all the time), I still am alive and somewhat mobile. Yes, my heart is erratic for several hours a day and at some point when it gets to a determined level of erratics we will get a pacemaker. Then maybe a ventilator and port so I can breathe. Then there is the tube to maintain body weight at a non-self cannibalism level. And there are things like diaphragm pacemakers. Nothing really to help the brain, and the increasing problems there, at least these last few weeks with language loss, comprehension and periods of diminished capacity. It isn’t easy for me writing about these things, but I do. My urinary and fecal retention has reached the daily point where some sort of catheter is probably in a near future (and maybe golightly - ug! Good thing I can't taste!).

But these measures all cost, and these are just to keep me alive longer, or the body alive: no improvement of quality of life, that is going down. There is nothing that can be done for degeneration of the brain, of the autonomic system and of the level of oxygen in the blood.

People talk about getting back to me at Xmas and Linda and I wince because being alive or in a state to do much more than lie there has never been concievable for either of us. It is like the person saying, "See you when you are dead!"

I deteriorate every week. Now, maybe the deterioration isn’t quite so obvious though a blog nor does it seem as quick (though in some ways it is lightning fast, with something removed forever in just one day), but it continues. And I guess the question is how far down will I go?

In the forest decay can produce beauty, as these fungi on the ends of a downed log demonstrate. They are breathtaking. But in our society, in humans, death and beauty doesn’t seem to happen. The dying are supposed to give speeches like “The Last Lecture” while looking fairly healthy and then go to hide behind the veil and do the actual dying there (to me, "The Last Lecture" with a visable bulging tumor, slapping on patches of painkillers between sentences and a few stumbles or a scream or two with heavy breathing over the podium would be a bit more my speed, my level of...reality).

I don’t have cancer, I don’t HAVE a mapped progression; am I on oxygen for hours, sure; are my fingers purple, sure; do I get brain damage on a weekly level, certainly. Do I have nose bleeds from spiking diastolic and systolic BP, yup, several times a week. Am I losing weight daily? Am I losing the ability to see, not exactly as we understand it, not a traditional blindness but often a dysfunction of the neurological input to make people blobs or behind a curtain of red dots? Yes, almost daily. Loss of speech, daily. Loss of motor function: daily. Are some days where I have equitable function to someone with later stage ALS: yes. Are some days when I have hours where I have equitable function of someone with only 10-15 years of MS: Yes. There is no mapped progression.

Could I die in a sudden loss of heart function over a period of 30 to 40 minutes combined with seizures? Very, very possible, in fact, almost happened a few times in the last weeks. Could I have a massive stroke and end up with brain loss and a body sustained by machines: again, how do you think all those bruises are going to be carried away in a compromised vascular system? Will all my futures mean I will be able to blog less? Yes.

Linda and I have already talked about the days when I cannot blog, when she will maybe report some of our conversations. These will be the times when I cannot speak or use my limbs consistently for enough minutes or an hour or two in a 24 or 36 hour period to write or use DragonSpeak and make a blog post. I have had some very near misses, as you see over time, I have more and more “system down” posts, but I want, and fight, against the time when I simply cannot post for two or three or more days: because then that first "Linda reporting" post will be the start of it, not the single exception. But when will I die?

“See you next spring” – for me, I gave gifts in summer and contributed a hefty shovel full to our financial downfall because there was no Xmas for me. There was not going to be the ability to give or even understand who people were at Xmas. There was no saving for tomorrow because there was no next year, no vacation in 2009.

But now, with the gifts and the packages, my mental deterioration is far worse than I expected. I often fear opening packages or moving the gifts people give from packages because 1) I cannot remember WHO the person is in a few days unless I am emailing them immediately (not often possible) and 2) I will never be able to match the present and package or person back up, the photographic memory is now the reality of mid to late Parkinson’s or Alzheimer’s. Cheryl and Linda protect me, shield me, comfort me because I am frustrated and confused holding a gift I don’t know who it is from or when it is from.

I love getting cards and gifts. But often, if feeling unwell, and unable to email right away, I know that I will not email at all, because I won’t KNOW anything about the item except “cool” and “I didn’t buy that, so it must be a gift!” I have forgotten gifts Cheryl has given me for my birthday, had to ask her where I got it (and it is so common, I have lost my mortification when it happens: "This is nice, where did I get this?" Cheryl: "I gave it to you three weeks ago." Me: "Wow, cool, great taste!"). A host of forgotten gifts Linda and others give me for important dates. This is my life. But I am not dead. I am still writing, and this is what life is, at least for me.

So, I have no dreams to look forward to, no plans, nothing except an idea I came up with today where I could sell my skin on Ebay (except the face), that the winner could come and cut off my skin for transplants in order for me to raise some money. Because maybe there is some treatment that could halt this disease (these DISEASES!) I have for a time, maybe IVIG could get approved if we get to the States with our $1,000 (that we don’t have) to see a Neurologist. Maybe if there was a halting in progression I would heal and my mind would improve. Maybe if I had a pain specialist and wasn’t in constant pain my mind would improve, my life would improve. Those are maybe’s.

Dying isn’t much of a maybe except for when. Will I see cherry blossoms again? What will next summer bring if I had three air conditioners and I STILL ended up in hospital and in emergent conditions over a dozen times? Will I live on, fighting with my exercise and my three or so good hours a week only to die in a spring heatwave? I don’t know. How can Linda start saving money, start planning for HER future with me here, draining her psychically, emotionally, financially. And we still have to get Blue Cross funding and the 20% for what my biggest supporter calls, “your last wheelchair.” And it is.

I should be thankful for what I have, and live in uncertainty. I did that for over a year and yet now, without a date, we can’t get hospice help, we can’t get specialist painkillers, I can’t for instance set the time of my death while I still have the capacity to do so. Yes, I believe in death with dignity at the moment of choice. And for most people with most diseases, I am FAR, far, further down that road than they and I am still not popping pills to die so don’t worry I am not about to pop off any time soon (excepting the suicidal impulses from being such a drain on everyone I know who loves me: both of them). But when it becomes obvious: like, they have to restart my breathing and suction out my lungs a couple time a day and restart my heart and I am in agony and there are no painkillers left that work and I only have the use of one arm a little, then yeah, I am not going to make anyone an accomplice. But right now, no one knows whether I go in a bang, or I whimper on for months (a year? Is that even conceivable, a year, another summer?).

I don’t HAVE an answer, it is a question that follows us to every GP appointment (why else leave progressive anemia for months, unless you just don’t know what to do?), to most if not all specialists appointments and lives with us in our home. I am NOT GOING to San Fran: I have no money, I have no oxygen concentrator approved and owned as yet so I can breath if I HAD money. Plus thanks to Linda’s employers, her vacation has been stolen away for every MINUTE of when she comes to the ER to make medical decisions as my legal medical power of attorney (because usually at that point I have NO CAPACITY TO UNDERSTAND or make those decisions).

So what dream do I have. Nothing.

What gets me out of bed in the morning? Pain. Pain so bad I can’t stay in bed. Heart so bad I fall on the floor and lie there for hours. I am now at least once a week found stuck, too weak to move, until Linda comes home (and her bosses are right behind her at working pestering for her to pile on the overtime! Which she doesn't get paid for: "There isn't enough 'buzz' about you Linda!"). Soon, I might be unable mentally to leave the apartment by myself, but until then I will continue to leave, on my own power, by myself, at least four times a week. To sustain a life I am unsure what to do with.

There are no easy answer and yet, as much as we question whether life should come INTO the world before and during pregnancy, this is an important question too. And the uncertainty of when I will die is jamming the grieving process: I die tomorrow, Linda is not ready. But if I linger until a blind vegetative state and then what: she has to leave me in some facility to visit on weekends, to talk to and hope that I hear her? That is going to be a messy grieving.

Beauty is in decay, at least in forests, another world Heritage Site, after the seven I saw in Japan. I don’t know what to live for, or why, and surely that will not help in my vigilance in doing all I need to stay in optimal health (or what that passes for in me). I don’t know what my future is beyond death (or what it is between now and death), I don’t know when, I can not work (I have paid rent since aged 12), I have little resources, I have diminishing functions and it should be useful to everyone to know....when will Elizabeth die?


cheryl g said...

I am here. I am going to be here to the end whenever that may be. I'm in no hurry to get to that end.

I am going to keep thinking about new dreams, goals, things to look forward to for you.

Diane J Standiford said...

My partner, also in pain nd disabled, working, getting up each day for me, she and I discuss the end when one (usually me) or the other has a will our relationship in this world end? We glance at old photos and feel our hearts breaking at how close we came, for such a short time---to pursue our plans/dreams. Now dreams are the playground of others. Each day does sometimes seem too long, too short, too much. I live for her alone and she lives for me alone. We no longer live for dreams. But I recall my own words to a young man dying from AIDS in the '90s; he was full of worry and sadness---I told him, "Hey, you have as much NOW as anyone else. See that guy there? He could be hit by a car in two minutes. He would trade places with you, then, dead, in a heartbeat." I never saw that young man again, just a stranger I passed by in my scooter. And so, I force myself, my shrinking brain, my atrophied body, to dream still---reality/dreams, not so far apart as we each have now. And when I die I must believe there is for me a life. And if not, well, I won't know. I know only that I have as much now as anyone. You have more than 2 who love you. As Carl Sagan said before his death, "We are the stuff that stars are made of." When I look at or think of the stars...I see souls. I see life. I see dreams. One day my partner will see me there or I her. One day I will see you. But not today.

yanub said...

I do worry that you will suddenly die, which is why I send things to you now while I have the chance.

If you had $1000, would you go to a doctor with it? It's really such a small amount. Ten dollars from 100 people, $20 from 50. That's not much at all. If people sent you that much, you could use it to see a doctor, or for some other purpose.

I wish I could help you find a new dream. With so many people going out of their way to crush your dreams, and your own body betraying you in new and terrifying ways, it has to be hard to summon up the strength to keep dreaming. The most wounding part, it seems from your writing, is how Linda is being treated because she loves you. I'm glad you don't intend to off yourself, because Linda obviously values your presence above anything else. And I know she would never do anything that would simply prolong a lingering death, and thus you are safe with her in every way. Man, what love you two share!

Now, about you forgetting who gave you what, I suppose it is pointless to tell you that I'd rather you enjoy anything I send you than that you remember I was the one who sent it. OK?

Anna said...

No comment. Really. Dream of...don´t know. I know I frustrated yell, THERE MUST BE A DOCTOR. THERE MUST BE. SOMEBODY. I don't have any answers. Dream of enjoying christmas? You could start ,making christmaspostcards sothat everyone get's one. And you should dream of getting the largest amount of christmas cards if I send one now.

Dream of getting your blog published. You really should try that. a completely different matter. Here in Sweden, there's some sort of hype around one of the Paralympics goldmedalist. (Since we didn't do very well at the Olympics.aaaaah) I think there is some comments about that he should be awarded for being the best athlete of the year in Sweden (or something), and not "only" disabled "athlete". Fair enough. That would be equality I'll guess.


Lene Andersen said...

Breathtaking photos, breathtaking post.

I don't know the answer, but I'll be here. And like Cheryl, I'm in no hurry for the end to come, although I know you probably have to fly before any of us are ready.

Many of us who read your blog would happily contribute to you getting a proper doctor and equipment that could help you. I know you don't like the idea of a PayPal button, but please reconsider. Individually, we may not be able to give much, but together, we might be able to ease the strain. Please let us do soemthing tangible for you.

Neil said...

Hello, you two who love each other so:

I, too, am here to the end, whenever that is. I admit that your faithfulness in daily blogging has me expecting you daily; and when you can't post, I have wondered a couple of times whether there will be one last post from Linda saying, "It's over. I know that day will come, but it's not today, so I will appreciate you for your beauty, your incredible skill with words your joy, and occasional frustration, at still being alive.

Many hugs for you and Linda.

Gaina said...

I'm not going to beseech you to 'hang on' and 'keep fighting' because that would be selfish of me. I just hope that you are allowed to leave when you are ready, with dignity and not before and neither are you forced to exist when you've had enough.

I really do wonder how much less fear and depression would surround the dying and their loved ones if we in the west had a more healthy attitude to that transition.

Have you read 'You Forever' by T.Lobseng Rampa? It's got a great chapter about death and explains how we are all just a bunch of particles vibrating at high speed and when our bodies die, that set of particles stops vibrating but all that does is allow the soul to move out and move on. This was illustrated by taking a sugar cube and a glass of warm water. The sugar cube is you 'alive' then when it's dropped into the water the molecules change and it seems to no longer exist...but if you taste the water its still there in another form.

That makes sense to me and is the reason I don't fear death and that allows me to get on with the business of living, even on the crappy days.


Veralidaine said...

There are many more than two who love you. Linda loves you more than anything, as it's clear from her battle every day for the right to love you and the time she needs to meet your needs. Obviously Cheryl loves you. There are your two-- but what about Maggie who also came to visit and play in the cemetery with you? Neil, yanub, diane, myself, all those who comment on each post?

And what of the many people whose lives have been touched by your writing, whether your blog or your book, who've never spoken up to tell you so because they are in awe of you? What about the people who were having a terrible day until they found a postcard in their mailbox that said "thinking of you?"

There may not be Christmas for you. But then again (and I'm with Yanub here-- need $1,000? We can raise that. There are 100 people who would give $10 to see your writing have a chance to go on a little longer) there might be. But the certainty is that Christmas already WAS for every person you reached out to.

I will admit to selfishly wanting to know what you thought of the things I sent you, but if you do not remember, don't worry. I want to bring you smiles, not pain of trying to remember who sent you what. I think I chose well and regardless, even if nothing was quite your style, I am sure that you were happy to receive a gift and the thoughts of friendship and love that come with it. Hopefully as happy as I am each time I see something from you in my mailbox.

If it would help your piece of mind I can email you saying what I sent, and you can file that away so that you can remove those things from their package knowing you can just look in your inbox and remember where you got them.

Of course that would require remembering that you have the email...

wendryn said...

I'll be there, in spirit at least. I know I'm far away, but even if you don't remember who I am you can enjoy the things and postcards. That's what matters to me, not that I get a response.

I hope you find a dream and more things to look forward to, even if they become more focused on things at home than things outside.

I hope you don't die soon, but that's also me being selfish - I like knowing you are out there somewhere, being EFM.

Joan K said...

I've thought about offering to give you a little bit of money, as Yanub suggested above, for a while.

Whether you use it towards getting the spiderweb rucksack, towards some pressing medical expenses or for a bit of fun is immaterial to me. It isn't much, but it is something we can do. My feeling is that if I can give you $10 - 20 it is something at least.

You may not remember who gave it but you will know at some point that it was given to you by friends who care about you and want to do something, however little, for you.

Victor Kellar said...

Elizabeth, I have been struggling to give you some comment that would give you some degree of comfort .. I am still working on that but the second part of your amazing gift arrived today, the bento box today, the fan earlier .. I am speechless with gratitude, I know how much this means to you, I hope you know how much this means to Collette and I. Just knowing you has meant so much to us and I know your blog touches and affects people all over the world; perhaps that is your mission, your purpose, few of us can aspire to that.

My brother is coming to Victoria mid-October for his workplace conference, he works for Independent Living Canada ... kind of ironic eh? I'm thinking about if I can find some use for this resource, if nothing else, maybe having him deliver something to you .. let me mull on this

Thinking of you as always

Abi said...

But what about the spider web bag? Have you heard back from the department store yet?

If you can't get it from the department store, I really would like to help you to get it from ebay. Although I can't afford to buy the whole thing, I would like to get a bit of it for you.

Also, as Yanub says, small contributions add up. I don't forsee anyone spending more than they can afford, but I think that a lot of people would like to help. It's horrid being so utterly powerless.

It would be good to help you to achieve this particular dream.

Kate J said...

Another beautiful post card arrived from you today. I can't believe that with everything happening to you, that you find the time and make what must be a huge effort to choose, write and send postcards... to me?! I have to say how very very much they mean to me.
And then to read your latest post on the blog... oh, Beth I wish I were nearer so I could help in some practical way, but not a lot I can do, from Wales, I guess.
But is there any way to help financially? Could I make a contribution to the cost of the wheelchair, for instance? How could a payment be made?

The Girl said...

I am here, in spirit anyway. I wish we weren't all so helpless, but, as you say, there are no easy answers. But I had two thoughts. Firstly, over the last week or so, I have gone back and started reading your blog from when you started (doesn't 2006 feel like a lifetime ago?). I am trying to see how everything fits together and, as I go along, I am starting to think "is it insane to love a person you have never met?"
The second thing is that I don't believe in an afterlife, but, if I did, I would hope, beyond all hope, to meet you there. Trite, I know, but the best I can do.

hakalax said...

Dear sweet Elisabeth, maybe you'll die before me, but maybe i'll die tomorrow if I get hit by a car? God only knows.
But some day we'll finally meet, you & I - if not actually in the flesh, then in some other way!

Heaven might surprise us! It will be a ball for all of us!! For all the bullied children with Downs, for all the sexually twisted, for all the humiliated and poor; we're all invited to the big fiest! No pains, no depressions, no eating disorders; only the eating order: EAT! Be happy - no worry!

I LOVE the forest pictures, they're almost unreal, magic, - celestial?.

You are talking about gifts.
You yourself are a gift, Elisabeth. Your life has affected me, and I'm so grateful.

SharonMV said...

Dear Elizabeth,

I'm here, sick, but not dying - at least not any time soon I hope. But I understand about the financial (and other) burdens my life puts on Dennis. My IVIG alone, without insurance, would several thousands for each treatment.I may get better, but I'll never become less expensive. How much is a life worth? How much is love worth - the love you give Linda & the love she gives you? I have been fighting so hard the last few years, just to endure. But now, I am just beginning to have a glimpse of light among the shadows, to dream again. To hope of a better future for Dennis & me.

I don't know what to say to you, I couldn't even read your entire post, as the tears are streaming too fast. I don't want to dream of a future without you in it. I have a dream of coming to see you, be with you. I'll hold onto that as long as I can.

And I am still sending you a package - it will come soon. It makes me happy to create & send little gifts for you. If a present gives you a smile or you think it's cool - that's great. It doesn't matter if you remember who sent it.


Maggie said...

I'm sorry that we didn't get to see each other while you were here this weekend. I will send your presents over with Cheryl. Next time you see me I will be a married woman with Sparky by my side. I will try to check in when I can, but I will not have my computer so will have to rely on phone updates from Cheryl when I can get them. Meeting that's something to live a little longer for.
I love you.

Elizabeth McClung said...

Thank you for your comments, and yes, probably the pain and the conclusion of this dream has left me in the space of doldrums, the return of holidays to face the pile of bills as it were.

I am NOT dying today (as far as I know, what Linda does with a pillow is up to her!).

And it turns out Linda set up some sort of paypal account a while ago and is having it validated today, so I don't know how that goes. I am the giving side: I send out the postcards and the little packages - and I get to open the mail that comes for me! And I like that.

The financial stuff is done by Linda (since having a person who has a seizure and loses memory of a day and can't remember more than five days generally isn't a good financial manager - and has a tendancy to buy the same thing over and over - and mail postcards to the same address over and over too - so if you get 3 postcards week after week - um, that's me!).

I need to rest now, tomorrow I have three big medical appointments including the pain specialists and another specialist and I imagine I will be drained and either feeling hopeless (like all the other specialists before) or better and that someone gives a damn the readers here.

I have paid my way but now, dependant on Linda her concern over financial matters drips down to me, I am not feeling secure becuase I don't have that security. What is a person to do when specialists and PT's and OT's say: "You have to have this" and I am one back spasm away from not getting transfers anymore and I don't know how to cover the 20% - that is real. But there are MANY people, many north americans who are in FAR worse financial shape than I. On the one hand, I believe in free choice and thus would not want to remove the possibility of free choice, on the other hand, I don't know how to help the people who are worse off than me. And I feel bad that I cannot somehow channel people toward someone in need, someone worthy.

As for the actual dying bit, I guess when I start moving through those stages or when my mental capacity diminishes enough, you will be able to make an approximate guess. I wish I had the white coat with the "sure answer" but I don't. I'm in no hurry to go, and I would very much like to go on, and meet readers and have challenges like the May Madness to go to cemeteries, and the challenge to give a gift and have some fun. I need to laugh more (I hope the pain specialist can help that). I want to be there for people. Not as dust or bits of space but there.

If it would heal everyone who reads, I would take the place of loki, or be scourged eternally. But my suffering and passing are not going to be the things dreams OR myths are made of. I will be back to reply individually.

Thank you.

yanub said...

You say, "And I feel bad that I cannot somehow channel people toward someone in need, someone worthy."

I say, you are worthy. Yes, there may be others who are also worthy, but, dear, you are my friend, and I want to do things to make your life more pleasant. And maybe a lot of your readers are also in pain, and feeling a loss of function everyday, and feeling helpless, and feeling unable to do anything for anyone. Being able to help you a little bit would bring such joy, a feeling of making a difference in the world. I know it would bring joy to me. And look at everyone else who has said the same thing, essentially. We really mean it.

During my long depression, several of my friends would send me money, unasked, because they saw that my life was in chaos and that I couldn't muster the energy to bring order to it. Some of those friends had problems of their own which I considered more severe than mine, but were having a bit of good luck. And it pleased them to help me. And it did keep me going, not just being able to pay a bill here or there, but to know that I mattered.

You matter, Elizabeth. Let us help.

Neil said...

Beth, there are still postcards to send, aren't there? Have you been able to keep track of how many you've sent?

I trust you're in no hurry to give up hope; the will to live is what keeps some people going, and I'd hate to see you lose that will to live.

Maggie: Congratulations! Beth was unable to lure you away from Sparky? Oh, well, even SuperYuriBeth can't win them all.

Hugs for all,

Cygnet said...

I don't have anything to say. Or maybe I have too many things to say. In fact I've written 10 or 15 things in this little comment box and erased all of them.

If there is anything that I could ever do for you, however small or huge, to make even one moment of life more joyful, please, please tell me.

Elizabeth McClung said...

Cheryl: I am glad of you, glad that will stay with me to the end. I want to think of new dreams too.

Diane: Yeah, this is the gritty day to day that people don't talk about, that one lives on one time and the other lives in another, one might have hours more a day than the other. The gritty, dealing with the now and the next or what was wanted.

Unless I spontanously combust (in Beacon), I am not ready to be part of stars, it isn't that I don't want to be dead, I just have finally found something I can't outthink, outwillpower, outlast. Ack. So when will Elizabeth die?

Yanub: I appreciate that and that is also why I send things and why I worked and got 32 postcards done this week.

I would go to a doctor, but I won't do anything that makes Linda's life more difficult when I am gone, or sell her future now on simply the CHANCE of a treatment. For a disease that doesn't have a list of treatments longer than one.

I will remember who send it, because I get Linda to write down who sends what. I maybe have to remember it again and again, but I remember.

Anna: Yeah, I know that feeling, want to scream it too. Last Xmas I was excluded from my family while my abuser was entertained by them. So I am not sure how to make Xmas a dream. I send gifts not becuase I get them, we don't, or cards, but it is important to others. If things are important to people important to me, they are important to me.

Glad there is equity in Sweden. Cool, a paralympian the toast of the country.

Lene: Yeah, I guess you know this headspace more times than me. But do I come out? Or does the body follow me down?

Thanks, I left the paypal info in todays post. I don't know what to do. I should get that on my tops: "I don't know what to do."

Neil: thanks, but I am still here, sometimes I can post earlier in the day, sometimes later, sometimes at 2:00 but I try, if humanly possible, if inhumanly possible, if dictated, to post. I made a commitment.

Gaina: I won't be ready for a while, whatever that means to a person who understands five days at a time. I wish I had less pain though, the pain, it is so much.

I don't know is possible now in this new brain/new body- destroyed brain/destroyed body. Rampa, and brownian motion, interesting.

I fear death becuase Linda is not there, I want to be with the people I care about, I want to be in the world where people I email and talk to every day on the blog are. I do not fear the rest which lies in the dark or bright depending on the day when I stop breathing and my heart stops beating. Dying is easy, living is hard. I do what is hard not always becuase I want to every minute but because it must be done.

I hope that makes sense.

Veralidaine: I have your name down and when I recieved things, I am have been busy being a bit spastic of late (or passing out, I did that about 12 times or more Saturday) to send you an email but I know what you sent and what it means, I don't know what I sent, so I hope you do.

Maggie has her boy toy, which will now be her married man! I lose out!

If you want me to be happy, I am from what you sent becuase I discover things that are wonderful all over again, or I use them immediately, if there are cards or stickers, some from here, from Australia, they go on postcards that day, are sent out the next, go and live in the world. The gift to give.

Wendryn: It isn't a dream, sometimes I do dream of dying, like a night sky, like the Little Prince. But I suppose I want to see what happens next too - I want to confound with some more EFM nonesense, breaking the expectations, rules and international laws!

You I know, X. I have more problems with but you are eteched daily into me. Haha. For those whom much is recieved, much is given, I hope! Which means, watch your mailbox.

Joan K.: Linda has set that up and I am letting people choose as they will, though it seems the spiderweb bag, like the perfect pair of shoes is always what the person in FRONT OF US IN LINE bought!

thank you for understanding and not being angry or frustrated. I am frustrated, I do not want to be a person who is not grateful, who does not remember with fondness each individual kindness - this too, like dignity is removed from me. I have no choice, I am not insensitive, I am brain damaged. Sigh.

Victor: Ah, sorry, the varieties of the mail system, we broke them into two packages so as to not risk damaging the fan at all.

Thank you for what you say but I didn't walk 60km like Collette did for cancer, or record and edit the May Madness weekend like you, I just write, that's all, and send out postcards and when I can find things I think friends would enjoy. It is only too bad that I will only know of these friends in language, instead of in person. But still, Wait and see, I have something still for thee!

Hmmmm, using your brother to mule things, sounds like a great idea. Does he carry things both directions? And what does October mean?

I have to go now and sleep for the test in the morning.

Cygnet: I am sorry, I did not wish this kind of pain on anyone, I did not. I just struggle and that struggle I think is part of reaching this part of the illness and so I write it. Have a good time, live life and joke becuase that is what I do and will do once the pain is gone. And once I have another mad idea, it is just the times and days in between and we all have them, those days.

I live, I die. But before I die, I live.