“Coward: A person who lacks the courage to do or endure dangerous or unpleasant things”
I endure, but only because I fear something worse. I am a coward. I don’t want to die.
If I spend life only being afraid or avoiding fears then that life isn’t mine anymore. I may be skilled at surviving, and I may sacrifice choice and dignity or endure what others fear, but for what purpose?
And so with a cowards’ cunning, I am skilled at surviving, sacrificing what others don’t consider, evading, plotting, and above all, keeping a few heart beats or breaths away from what I fear the most: death. I said to Linda, “’To be with loved ones’ post death, that’s my nightmare,” I shuddered, “Ug, spending eternity with Grandmother ‘helpfully’ ripping my actions and decisions apart to tell me what I did wrong with my life in detail”
In ‘Ne Le Dis a Personne’ (Tell No One’: the winner of nine film awards) the protagonist Alex gets an email at his pediatrics office eight years after the murder of his wife Margot. The email only opens at 6:15 pm, and shows a CCTV camera atop an escalator. A woman stops and looks around, then stares for two seconds into the camera. She is Margot. Alex, a man who has a job, a car, an apartment, everything but what he grieves. As he searches for what, why and most of all how with this and other emails, he is framed for murder with the police closing in. But Alex believes he is close to finding about Margot, and has an appointment that might mean seeing her. So he runs.
In watching this grand French chase scene, I about how different a person looks when they are running toward something than when they are running from something. Alex did not scramble, did not waver, and did not look back. He was running towards love, towards the dream of reunion and end of the long grieving. How could a criminal, a coward, thinking only of evading, match that?
What about me, am I running towards something or away?
Away.
I survive, but in not dying I am running from living and I don’t know how that happened.
When did I lose my passions and vocation? When did my life reduce to a focus on not dying, no more hospitals this week or delaying degeneration? Maybe it happened during the 15 months of scratching by, the fear that sets in when there are days and then weeks without all the medications, or even the important ones. Or was it because we kept running out of food, juggling money to keep the power on. Or did I lose focus in the two years I didn’t have a GP: or the twenty months without pain control? Pain is like the water which cuts through stone, as it erodes you day by day, smoothing your life into a hazy drudgery.
At some point I sacrificed the freedom to dream. Yes, I’m alive, but without the aspiration beyond simple survival.
People describe their goals and dreams in different ways: some speak as if it has happened, some speak soft and shy, lest it scamper out of their life, some talk boldly, their defenses already up, guarding the hurt inside. And then, over time, that description changes, until it is mentioned with an embarrassed laugh, when and if it is mentioned at all. Others talk about it with a smile because they found something on that journey of aspiration that was worth stopping and building around: stumbling into unexpected contentment, which have us repeating with wonder, “This is my life.”
But ‘this’, a collection of medical emergencies or things I do to avoid dying isn’t my life. It just happens to be the situation I exist within.
Linda, in her generosity of kindness, devotion and compassion gives me the security and comfort of our home serving as my ‘care home’ (for whether it is public, private or other facility, my disease now requires near full time care in a controlled environment). She also gave me, as a birthday gift, the grace of choosing to dismantle the emotional wall of protection she built over the two years of hospital trips, emergencies, specialist who gave up, and the conversations with ‘white coats’ about the specifics of my death.
Nothing I am or have done deserves her gift. MY life is better because she is with me, not just physically, but as ‘one flesh’. Linda’s choice to grieve with me, to wound with me, and live without emotional defenses with the person she loves most of all as I experience the late stage pain and degeneration. She bears this in order to share the joy, tedium, frustration, compassion, spontaneity, kindness and humor fully as my partner, my lover, my friend, my companion. She is running towards me.
What am I running towards?
There is no going back to ‘before’, not for me or for anyone, you grow forward, not backward. Neither we or this planet can ever stay still, the only things captured in amber are those long gone.
Langston Hughes in the poem ‘A Dream Deferred’ asks what happens when our dreams are deferred for us socially. But what about those who spend too long getting beat down just in order to survive?
Medically, I have hopes that one of the greatest medical problems from the last year is now in relapse. And if that stays true, then I will enter this summer with more energy to ‘do’ instead of just ‘be’. I don’t get any more energy or time, but in teetering stability, I will have my energy and time to spend elsewhere.
I have goals, barely visible. For example, I’d like to qualify for the Boston Marathon. I figure no reason not to dream big.
In order to qualify I have to be able to wheel a marathon first. And that means I need to wheel a 10K before that. So I am aiming to wheel a 5K. And I have an agreement that if I wheel more than two 5K’s before late autumn then we will look at renting a racing wheelchair again. And to that end, I have been wheeling outside by myself once a week. I can do 1.5 km now.
It takes a lot of planning and ‘doing’ to reach a dream.
I am tired of surviving. I want to live, and that takes risks, both emotional and physical. Even now, exhausted and in pain from my 70 minute workout at the Y yesterday, I want to shake my brain like a snow globe and see what dreams become clear as the rest of stuff that clutters life settles into background. Curious to start living.
Yeah, I’m back.
If you only look at my dying body, you will never get to see ME.
What is possible until I SAY it is possible? Today we have a lesson in flight, whimsy and spring. I think we all need a little spring in our lives right now. But unlike Peter Pan or Tinkerbell, you don’t have to have happy thoughts, you can be as sarcastic as you like. I encourage it; because flying takes ATTITUDE, or was that ‘altitude?’ I always get the two mixed up. No, I am pretty sure it was attitude. So grab your rock chick attitude and get geared up for flight.
The guitar says: “It’s better to be wrong alive than dead right.” That’s sort of terminal people humor. Which is the first lesson in flying: one I happen to excel at, falling.
If you can’t fall, then you can’t fly, and wow, can I fall. Falling is a bit of an art; you want it to be entertaining for the spectators but not actually permanently damage you. But the point is, you can’t fly, if you aren’t willing to fall. Now staying here, on the ground, in the snow with everyone else is fine. If that is what you are made for. But there are some of us who have wings burned into us. 
They keep cutting them off, but somehow the wings keep coming back. So is everyone ready?
What is flying really? Well flight, with all the physics removed is being where only imagination can put you, one part of you in reality (the air) and the other part of you in desire, in wish, in imagination, in whatever and where ever you want to be, if you are willing to pay. Because what you dream, you can do. Or you can fall a bunch of times trying. I said I would rather try for the impossible and fall down for the last time further than anyone thought possible than not try at all. That is how I lived, that is how I will die (a bit of slave to fashion, I went to the doctor’s yesterday in my tank top with bats on it, and slim leg jeans – I was smoking hot – if you got to be freezing, since it snowed, then you might as well look hot, right?
) and that (trying!) is how I will be spending the next little while (because here is the secret, I’m not dead yet, and I’m not dying! Well, yes my body and brain may be a little on the blink but like a TV if you just jiggle the antenna…….um, never mind). Point be that, yes, I have been down, down, emotionally crushed. And it has been a long winter, hasn’t it? It has for me, so I for one am OUT OF HERE. Let’s go ahead; you know ‘dreams’, ‘planning’, ‘intention’, ‘wild whimsy’? Let’s GO!
Okay, now was that so hard? Well actually it is, because we spend so much time stuck in there here and now with the government and the council and the other people bombarding us with things to keep us focused only on the problems: They convince us only on what can’t be done, only on barely keeping up that we are so scared that if we lift our foot off the ground, we will be lost.
So you got small wings, don’t worry...they grow with time, the point is to lift off, right? For you to leave, at least for the 5-15 minutes you are here, that crap behind, because spring is coming. Spring is coming to thaw winter and I have to tell you she is a bit of a babe.
Now, first things first, I should say that I don’t just go off on lots of opium in case you are wondering in some sort of Kubla Kahn dream. No, I am working toward an actual reality and to do that I took care of myself, I had hard days, like yesterday but I got my sleep, my REST, I watched anime and ate good wholesome things, like…um…cookies.
The first thing is that people forget, they forget what CAN be. I don’t know why, because I forget everything every 48 hours and yet, I still can see what can’t be seen, and yet others don’t. They can only see hot chocolate and apple cider (not that I don’t like that) but can you see and remember THIS:
Yeah, now we are in the mood. Spring comes in bouncing and flouncing around. There are flowers peeping up where I live and I guess it won’t be long before the whole area is shouting, “Look at me, I’m alive!” And I said, “You do this EVERY year, do you have to make such a big deal about it!” But then, a truly wonderful thing happens, and I think we all know what I am talking about. Yes, the winter coats disappear and finally crop tops and all sorts of curves and cleavage appear!
Err, I must have meant to say something about gardens but got lost in the Sun (whew, now I am hot looking at that picture!) Flowers.
Anyway, I have decided, as I tend to do, that I will have a bikini this year. Linda says, “But you have a great one piece!” And then after looking at my wasted form went, “But you have the figure needed for one!” I am not sure that was overwhelming support but if it works for anime girls it will work for ME. 
The problem is I need someone to bring me one of the super support ones from Japan so it LOOKS like I have DD or E cups when I have something slightly further towards the front of the alphabet.
The other thing I am learning besides the fact after careful watching of MANY anime shows, that a girl in a bikini can a) get away with just about anything, b) drag off all the girls to ‘talk’ and make the guys all frustrated and c) have more fun, LOTS more fun. The Bikini girls are always having fun, and I think the more accessories you have the more fun you get
(I am not sure of the formula, but I am willing to keep trying!).
And then AFTER you have all the fun, I get to have the NAP with the other bikini girls, which I want to point out is MEDICINAL. 
I am not sure why it is illegal in six states, but then two of those have dances were 10 year olds promise their sexuality to their father in a wedding veil (Chastity Dances) so I am not sure they have a lot of FUN in those states.
Oh, and if you have a catgirl with you, try to make sure you are on the other side of the bed, as cat girls have some unusual habits,
like purring in sleep, and stretching a lot and tail twitching in their sleep. Also when they want to wake you up they sit on your face, which can be nice for the first second or two.
You may have realized that you have been sucked into a blog about nothing at all, just a bit of whimsy and pictures to brighten what seems to be a hard week for a lot of people. And you are right. And a little bit wrong. Because I will fly, I will go to Sakura-con, I have put things on ebay and sold them, I am taking action and deliberate inaction (they call it ‘resting’?) because who knows what is possible until you try. And who knows what to try unless you dream. 
I am tired of dying, and I think I haven’t been doing enough dreaming about what can BE recently.
See, if you know that something can BE, like for instance you WILL get a shot of me in a bikini because I WILL buy one. Then I will work toward that, and while I work hard toward that strange men will send me very wrinkled dollars in the mail with the message scrawled: ‘get bikini, many pictures!’ – So I guess another bikini wax too - oh FUN! In similar news (similar how exactly?), I did get again this week another offer for sex, written in email, not not cyber sex but like, "come to me and have sex, or let me come to you!". When the one from Africa asked me, “Why you be lesbian, why not fly here to have sex with me?” I was sort of not sure what to do (since they person was pretty sure I wouldn't be a lesbian after sex with them). However, when the email came this week from a woman saying she had read my blog and that I looked to be the good, GOD-FEARING and upright husband for her, I was a little confused and said to Linda, “I REALLY have to put more pictures of myself on the blog.”
So sort of a message. I am getting out of the apartment this weekend, I am hanging out (next to the daffodils which are just coming up), and maybe going by the sea side to take a look at the seagulls and the crazy people surfing, and flying kites.
I am going to think more about what I CAN do, than what I am leaving or losing, because that is a bore (an painful bore called grief, but still I want a vacation from grief).
And I suggest you do the same, I know that where I am, I have flowers and you have four feet of snow. But you can’t find a flower to smell and think of what it will be like, and what you want to do, and how the taste of fresh strawberries and farmer’s market peas will be like? Give it a try?
Because like me, spring is coming, flowers and all, 
and I know that winter is still pressing down on us, but for the last couple minutes, you flew. Yes, you thought of bikinis and watermelon and spring and if that is possible, and if I am going to get a bikini and go to Sakura-con (Maybe not at the same time!) what isn't? So those are MY dreams, my ‘possible’ where are YOURS?
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?
I want to talk a little bit about dreams and doings. Because right now I am in a lot of pain, I think maybe because I kicked up my action to twice what it was before Lyrica but also I have been fighting a lot of groups (Beacon). So I am in pain. Boring!
So I don’t want to talk about pain because pain and fatigue dominates my day, my thinking, my breathing, my sleeping. So let’s talk about what I do that is good, and pleasant, which is this case is saving toward my DREAM backpack (for either me OR my wheelchair - keep reading) as well as some of the things I do; from restaurants to ordering things online (Don’t worry, I will talk little and there will be lots of pictures).
First off let’s go back to the weekend, because it wasn’t ALL just postcard and postcards and sexy dress up on the corner with men hooting (though that tends to be what I remember), we also went out for Mexican. And here we are at our favorite place, with our strawberry margaritas. 
And no, I did not go and get all ‘innocent schoolgirl’ on the corner AFTER drinking, oddly I did that cold sober. There was however one particularly startling time when I looked over an a 7-8 year old girl was there (with a teddy like mine actually) and she looked at me and asked, “What are you doing?” And while I am thinking, “ABOUT TO GO TO PRISON....from the look on your father’s face!"), Cheryl said, “We’re playing ‘Dress Up’” (Thank you Cheryl!). And the little girl got it right away and kind of smiled and seemed to want to be IN some of the pictures. Her father, whose mind was elsewhere (dirty mind, dirty mind, not like mine, which is pure and innocent, that’s why I made sure the thong strap was showing) quickly called her repeatedly to come far away from me. But, hey when Maggie and Cheryl went to the Cemetery in May we ALL did “dress up”, you can go back and see the pictures!
Okay, new topic: I have looked all over the net (like done a bunch of searches) and as far as I can tell there are about 15 “Postcard Projects” of one kind or another. However, the others are where people want other people to send IN postcards and the person doing the project wants postcards from every state in the USA for example. Mine so far seems to be the only one where you give your name and address and you GET a postcard. And now there are, well about 130-150 people on the list. So I do think I will reach my thousand postcards sent out (my goal) if I can pace myself and I don't obsess or get out of control. Hopefully everyone will get three to six postcards or so if I make it to the finish of the project.
What people don’t ask is, “How does Beth get her postcards?” At first it was just stock of postcards while I was IN Japan. Then those left over from Japan, and then that ran out. And now, some people SEND postcards which I use and send out again and you can see in pictures some of the postcards that people have sent in for me to send back out. But for the majority of the postcards, like the 31 so far this weekend/Monday, I get my postcards....wait for it....one at a time (no, that isn't Zen, I am being literal - read on!).
Yup, I actually go and search out a variety of sites and referrals and webpages every day to find postcards. And I have a fixed amount that I can spend on each postcard (about $1.50, a little more for rarities) so that limits it as well. So for example here is a postcard I bought today. 
That’s right, one card (and a pretty cool shrine maiden one at that!). I try to buy a few cards from each vendor as it helps with the postage costs but today I got in the post, three postcards from Japan: those I ordered over six weeks ago. So I buy a postcard, I wait for it to come, I sort them, then I start the five to six stages of the postcard project and post 30 or 32 a week. So the prep work IS a large part of the postcard project. But I want people to get COOL cards, postcards like this one here which has a nice little see through Anime cell build right into the postcard. 
So yes, this is one I bought two weeks ago, I am waiting for it to arrive. One postcard at a time.
So when sometimes the postcards are damaged, that gets me very sad, because it takes so much effort to get them here. So for example, one of the cards from Japan was damaged, they offered me to take another one so I ordered this one. 
The postcard still hasn’t arrived (but it will). I like the postcard for many reasons (it has a cat AND do you notice that the anime character and I have the EXACT same Kyoto Bamboo umbrella? Neat!). So it is about 10 weeks so far in waiting for this card. And I could hold on to it and look at it now and then but instead I usually within a few days process it and start sending it out. That is what the purpose of the postcard project is after all. And yeah, sometimes I send out collectable postcards. But it seems I collected them.....for you.
I am not sure how many hours a week I spend buying postcards. Now that I have done it a while I am often contacted, as I was today by a seller who had some new Yaoi cards and I ended up buying seven from them, that took about 90 minutes (they will arrive in two weeks or so). But sometimes it takes an hour or two and you get no cards that day, or that week. And sometimes you hit a jackpot and sometimes you just find one – but it is the RIGHT one, like this Gothic Loli postcard I got yesterday (with cat ears!). 
So now I am waiting for this to be shipped from Japan (where I get some of my cards, some from the UK, some from New Zealand, some Australian, Singapore and from around the USA).
And the same is true of getting ‘surprises’, I try to hunt them out, one at a time and then find the right person for them. For instance here is a small stationary set of Hello Kitty as a Maiko, an apprentice Geisha. 
So I have ordered and paid for this limited edition and soon it will be shipped. Arrive here, and then I will try to find someone to “surprise” with it along with a few other things. I don’t get out much. But I do work as much as I can.
Of course, the problem is that when you are spending so much time looking for postcard and things for others occasionally you might find something for yourself…like this nice Pencil Board from Japan (De Capo II). 
It was only a couple dollars and after all that hard work….I needed a reward to look forward to right? Right?
My big thing which I have been trying to save up for and if all goes well I will have the money to pay for in about 10 days is this backpack from Japan. 
It is by the designer h.naota (who does some rare and kick-ass Hello Kitty stuff). It is very adjustable so that it can be worn on any back but also I think on any wheelchair. And, most important it comes in COOL red spiderweb punk pattern! Yes it is $88 BUT, I have a 10% off coupon so the shipping from Japan is free! I could get it from a limited retailer in the states online but they are selling it for $198.95 plus shipping. So I will go with the Japan order, I think. The satchel doesn’t just look cool it also closes with a flap (and some punk pins!)
so that people with limited hand use like me can open it. Plus instead of just a giant space like my ti-lite one, it has LOTS of pockets so I can put things like “cold break packs”, pain meds, my emergency pack with money and stuff, and even a book in all the different pockets. 
So right now, that is my dream, I just have to hope they don’t run out of them in the next 10 days (NO, don’t go and buy them, that one is MINE!). I haven’t had a lot to look forward to in a major way as our trip to San Fran seems a little delayed (thanks to our Tax return for 2007 still being reviewed…and 2006: they have finally sent a letter to say, "Yes, the Canadian Government accept I have a disability.....please let them know when I get better or die so they can remove the tax credit").
So that’s today’s post, I wanted something where you could see what I do, which is that I still use my brain, keep track of dozens of objects, find the right thing for the right people. And yes, I know that I could get postcards in bulk – but they wouldn’t be THOSE postcards, they wouldn’t be the right postcard for the right person.
And I try, even when the pain and my rather certain future makes it feel like a cold grey planet where nothing seems to matter anymore, to find dreams, like a sweet spiderweb punk backpack for my wheelchair. I am also still trying to get out, even a little, four or five days a week, I didn’t today but I WILL tomorrow and I did yesterday (saw a black squirrel – need to go visit squirrels!).
I hope in your pain and your situation that you can have a dream, or something to look forward to. I have been selling off my stuff on ebay to get money for the backpack. I saved stuff for years so that I would have DVD’s to watch for the rest of my life; well, turns out I won’t have that much time so...on to ebay they go. Hurts, but hey, once they are sent off to a new home, I am sure I will happy, and right now, I want that backpack more than the collected film works of Stephen Fry (sorry Fry). So, if you have a dream coming up, I’d like to hear about it!
