Saturday, February 28, 2009

$23,000 of foot crushing, corsets, my panties and the BBC

Today was a very big day for me as I talked myself pretty much into a stupor with Janet who is now going to be the Olympic swim coach and Ted from Motion as they brought my $23, 000 chair. My GOD! I felt bad, that a family in a trailer park is living without a new double wide trailer because I have this chair (seriously, aren’t medical costs obscene!).

I have been having a lot of memories of Japan, and my trip there because I am helping another wheelchair user right now do some booking of hotels from my blog. So if you haven’t read the Japan section I recommend hitting April 2008 and scrolling to the bottom or hitting here. The cherry blossoms are coming out in Japan AND coming out (according to Stephanie) in Victoria. The Cherry Blossoms near me, by the parliament, are actually a gift from the Emperor of Japan in the 1930’s when Victoria hosted his daughter. This is considered a great honor as Japan marks cherry trees as those from the cutting of the Emperors’ trees and those which are NOT (of course the Emperors’ trees are somehow better). Also much like the UK, they keep a record of ‘significant trees’ – but in Japan ‘significant cherry trees’, so we went during Sakura (the cherry blossom festival as the blossoms open all over Japan at different times) and saw a few of the trees. And stared for twenty seconds before saying, “Do you see anything particularly significant?”

And Linda would say, “Looks pretty much like every other cherry tree to me!” But hey, we tried!

Speaking of trying, I have decided not only to begin my work in editing a book about becoming rather suddenly disabled and how you get to join the cool club (don’t worry, everyone gets there either temporarily or eventually, just keep doing those ski jumps!). I also have written to the BBC to ask to start writing short blogs for them. All of the bloggers were booted off laste last year, and the new site is fine but lacks a bit of the common touch and experience. When most of the writers have jobs for the BBC or are independent comedians while most people with disabilities are unemployed (over 75% in recent surveys - and I consider the complexity of being ME a full time job). So I am going to be really cheeky (wow, what a TOTAL surprise for everyone!), and ask if you can ask Ouch to let me blog for them....for free. The ‘Contact Us’ section you get to by hitting HERE and going down on the left and hitting Contact Us which provides an email address OR you can just put in your comments right there. So I have provided a possible response you might want to put in, just cut and paste:

I like Elizabeth, she show me her panties and she not kill anyone yet. Please let her show her panties and shots of her begging for money on the BBC. Also she is FAR away from your office and cannot hurt you…that important!
If you DO put that in the comment...I will be very, very, VEXED, and come and do things to you; you don’t want to see me vexed (other people do, but you don’t),I may do evil things…..like roll over you many times with my power chair (it actually has a setting you push on the computer for rolling over things, I was rather disturbed by that).

One last thing before back to the powerchair, is for those who are disabled or know someone disabled, I have found a manga series called REAL about wheelchair basketball. The wildly popular writer of basketball series (think millions of copies sold), has a new series about three young men who all are in wheelchairs through different ways (cancer, car accident…), but all end up using wheelchair basketball. I haven’t read it yet, so I can’t tell you how good or bad it is, but it is on my wishlist and I thought if you have a friend or young person in a wheelchair who thinks there is nothing out there for THEM, try this. We all like to be represented in the media of popular culture; we all belong here.

You can thank today’s pictures to Victor who gave me a gift that keeps on giving…kick ass pretty pictures. It is a great gift. Thank you Victor! This is how I thank him, I think he will understand. Besides, the more I try to explain that picture and me thanking Victor, the more sordid it sounds.

Back to the Power Chair (still deciding on a name for it between Lurch or Igor), it is small enough to go from my work desk to my bed and back as well as outside….in theory. It arrived today as did Janet, who talks three times faster than other humans and is about the only person who can out-talk me. She looked like she had been in a fight but it turns out she fell down while walking her dog and her face hit a rock (ouch!). I told her that I could help her in lessons on falling down. She said that she was sure I could, and would see if she had the time. Then she started instructing me on how to use the chair going downhill, like to tilt it backwards on a steep hill to stay inside (it has no seat belt as apparently in an argument I don’t remember I refused a seat belt?). I asked her, “will the tilting make it go FASTER!” She said no but I would learn how to CONTROL the chair or I might fly out of it. I told her, I was used to flying out of wheelchairs and what I need is how to make it go really FAST down a hill! Though having a full on electric wheelchair fall atop me I think might hurt. She said she would not tell me until I learn to control the chair first. I said, “It is straight down hill, what do I need to control?”

Anyway, the other thing which has me irked is there is this big button in the middle of the control panel and it does......nothing. I told the tech, Ted earlier that I wanted rockets out the back, or sparklers or a little death ray. I mean I pay over $23,000 and they can’t provide SOMETHING to go with this big button? Just a little death ray out the front? Or sparklers to go with my Kimono? Sigh. The controls are electronic and there are 5 settings, from indoors to high speed AND going over things. The problem is that as I can’t really feel my hands, as I turned to talk to Janet, twice I accidentally hit the switch moving it from indoors, to outdoors, to high speed. I had no idea, but Janet said, “Look you did it again! You are going to zoom into a wall if you don’t watch it.”

I complained that once I stop (there are delayed controls for my gross motor function, so if I take a second or so to find forward, it waits and then starts going), the chair sort of still goes. She said, there is a law of physics and something in motion will stay in motion, and we CAN make it stop dead, but YOU, without your seatbelt, would go flying. There must have been my, “that sounds kind of interesting” look on my face as she said, “No, we won’t do that, try it out for a week!”
I have tried driving it but so far I have not made it to the bedroom without a) making interesting marks on the wall or b) crushing my feet (in one case literally to about an inch if I had not pulled my leg clear). Oops! So I hope I will get better at driving!

Janet is a breath of abusively fresh air as she tells me that this will help me through some of my stages of my ‘potentially terminal disease.’ I was, “potentially?” And she was like, “I thought you were into living!” And then I said, “Well true, I could be the FIRST not to die.” And then we traded stories of people who should be dead due to their conditions, like SMA stage I children (who don’t make it past 1 year) who are teens. It is all about the attitude (I hope!), and maybe the clothes?
Plus she had good advice about how families will do things that seem very, very cruel but are just part of denial. So she made me feel normal with her stories, including her own stories. And said a very good line which is that “your mother loves you but may not like you” about how we can ‘fail’ to live up to expectations. And particularly how they just don’t want to think about their child dying – that the parent aspect of thinking and dealing with a child dying before them makes them have a system failure. Which I could understand: also now I am going to the pool she goes to because that is where all the paralympic swimmers swim and they are used to seizures and all sorts of stuff and don’t call the ambulance. In fact she walked in one day and they said, ‘this disabled swimmer is having a seizure, we have them in this room, do you know them’ which she says drives her nuts like she will OF COURSE know every disabled person in the world, or this city. So she goes in the room and it is her friend, xxxxx, so she does know them.

So, now I have this huge THING sitting in my living room which can demolish my walls but I haven’t quite figured out, besides crushing my feet how to make it work to give me a better life (except now I have head support and thank GOD, I was thinking all this week – please when will the head support come – seriously). I will take pictures tomorrow of the powerchair and me with several of my different corsets, maybe I will take it out with me to go dancing – oh, I can see a lot of people having injuries with me on the dance floor – maybe I will take the manual just this time.

I hope you have a good weekend and please, remember like Big Brother to vote me INTO the BBC Ouch house because apparently I think I don’t have enough to do!

Thursday, February 26, 2009

Flying, and what is possible.

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?

Tuesday, February 24, 2009

Booth Gardner, suicide, living and choices

We have a date for Booth-Gardner, though not the one we wanted, Linda’s post covers that. Which is why I am going to talk about deliberate suicide, life, my and other choices and yesterday. I wrote a blog post yesterday and then realized the post was a lie: because it was all about hope (so I didn’t publish it). Hope is NOT what I am feeling. I am feeling something between frustration and despair. Yesterday was spent, the entire day, doing things that were largely unpleasant, but also needed.

I had to get ready so that I could go to the lawyers and re-read my entire will, ask questions and sign, read my living will, upon which Linda will determine when I get to die, and the power of attorney. I am sort of a non-human legally now. I would recommend any person read any living will VERY carefully as there are many loopholes and since both sides of my family tend to like to kill each other off or tell doctors, "Oh they are in horrible pain, please give them morphine drip to put them in a coma" - I have to be extra careful. The lawyer aghast at the McClung family dinners where everyone before dinner ran around putting their names on things, pencil in one hand, eraser in the other as they erased the name of the sibling and put their name. Then at dinner (my Grandmother is still alive and would be at the head of the table) the siblings would yell at each other about how they put THIER name on the clock first and YOU erased it...etc. The lawyer said, "So, death is something of a silent taboo in your family" very dryly.

From there, Linda’s surprise was that we were going to my parents to borrow their dolly/cart in order for Linda to get the Wheelchair Ramp from Port Angeles. It was an exceedingly painful visit for me. My father had offered to care-give and I accepted, more as a way for him to understand the actual limitations of my body now. Pus Linda put him to work, moving a bookcase. That somehow unplugged my lifeline phone. Lifeline started calling the numbers to make sure I was still alive and my father was one of them. We were notified and plugged the phone back in. Apparently that wasn’t enough, Lifeline wanted HEAR me, know I was safe, so they wanted me to push the wrist button. I wear this bracelet at all times and if I push it within 200 feet of the phone, they sent paramedics. I have done this in an aura when I thought I was alone and was taken to hospital. Lifeline called us, they called my father and Cheryl I guess.

At my parents, my father was away and I watched through the windshield as my mother held on, refusing to release the dolly to Linda while she made a prolonged emphatic statement to Linda. Linda got in the vehicle upset. We had to go home now in order push the button as my mother did not want lifeline calling the house again. The 30 second call was annoying. The fact that someone, for a minimal amount a month wanted to make sure I was alive and safe, and that there was a safety net in place to keep it that way was irrelevant. The call was annoying. It should not have happened. Was I hurt? Did she care? I don’t know. I know that she didn’t care enough about me having my father called to come and check on me to put up with a couple 15-30 second calls. Though it was suggested she hated the reminder of what she has not ‘processed’: that she has a sick and dying daughter. Or as she said, “I did it with my mother, I’m not doing it again.”

My mother’s irritation that someone called her on the assumption she might care brought to me how there isn’t another human being in this city who would come and check on me. About 18 relatives and many neighbors but no one who either cares or wants the responsibility to see if I am on the floor and dying or not.

From there we went to a new walk in health clinic that was taking new patients. They advertised no wait longer than 15 minutes for walk in. It was an hour long wait and then 30 minutes talking the doctor. We will hold off transferring to them until we provide medical records and they say what they are willing to do (specialist referrals, treatments, etc) and respond to a letter of our concerns (like will they follow what Booth Gardner will tell them to do). Also we need to wait until we hear about the palliative program as all efforts, however minimal where I am currently, will cease once I transfer (by the way the palliative is a year long program, you can register up to three years in advance so it doesn’t mean I am going HAVE to die this month). So, now we are waiting to decide medically to stay with the devil we know or transfer with hope to the new one?

After all this I was exhausted so home to sleep and up then again, since now I now needed to break the pro-biotic wall that I created in order to stop the food poisoning several days ago. Between waiting and pushing it took about six hours and brought me to the point of exhaustion where I couldn’t speak anymore. That was a day. My ‘restful’ day.

So Booth-Gardner (B.G.), we have a date and while it is what we ALL have been waiting for, it is different things to different people. For those who want me to live: it is hope, regardless that it is slim and if dashed I will be emotionally crushed. For the doctors here it is direction on what to do, what tests to order, what to prescribe. For Linda it is the culmination of months of requests from DOZENS of places for tests, and mountains of paperwork. And it is a place where I lose my identity, where a life of stability is gone and instead of everyone had accepting my condition, and my degeneration now the medicos will ‘evaluate’ me all over again. Even if there is a very high probability that they will say that I have what everyone says I have: MSA variant (Cost $700). But this time I will have paid a lot to be told for SURE, that I am going to die. Can I emotionally withstand that? Can I deal with all the tests we are going to try and shove in at the last minute for them to tell me how soon I will die….my phobia and yet lots of needles? But this is the only path to hope, right, so I should be happy? Only they don’t promise hope, they only promise to take money. And people forget that I only have a 50% chance at best of living long enough to make the appointment.

With my life of ‘consistency and stability’ I was trying to save money for three things: Sakura-con, art books for the blog and Hawaii. I put up DVD’s on ebay yesterday, as much as I could concentrate and have energy to do and sold one. Last April I promised Cheryl that if I was still alive, I would go with her to Sakura-con. To me a promise is more important than living. To break a promise which has helped keep me alive is an insult to Cheryl, it hurts people’s feelings and that is more important that what I want. Someone depended on that promise, and so did I. I have been saving for some specific art books at Akadot because my memory is visual and so people enjoy the pictures on the blog. I had put up my ski’s for sale and was working to sell my bike to make money for Hawaii, and getting manga ready to put on ebay for Hawaii too.

But in plops Booth Gardner (B.G.) and suddenly I find (on Linda’s blog) that the ski’s I am selling and my bike and the money I have saved is actually for the medical fund. Now while I do contribute to the medical fund from my allowance and a portion of what I sell goes there, the ‘making sure Beth gives a damn about the future so she wants to take her next breath’ fund seemed more important. But it isn’t, or so I am told, compared to the wonders of medicine; which will tell me I am going to die.

Because it won’t be a visit, it will be a lifestyle. I will need tests before the visit, and the doctors will probably want to eliminate the anemia, the thyroid condition and the heart erratics all with follow up tests, maybe every month or every other month to see how their medical choices are progressing, then back for another visit. Time to try for a pacemaker or maybe some sort of treatment for Lymes, or Lupus, or IVIG, or anything that passes the brain/blood barrier as they have ‘had some success with some patients’ and then there will be tests on that and follow up visits. If I live. Where is Sakura-con in that? Where is Hawaii.

I asked Linda today what percentage she gave to me living to reach the end of April, and she said 50%. I asked what had happened to Hawaii, and the money we were raising, the tax refund money, the early filing. There was a long pause and she said that the timing wasn’t right and it would be late summer. “Summer, me, in Hawaii in SUMMER.” She amended that to make it clear it was more like fall. That would be a better time for Cheryl to have a vacation. Better for B.G. too. She got the book from D.K. on planning our Hawaii trip five days ago, and got the news about the date for B.G. three days ago and now we aren’t going to Hawaii.

I am being drowned and disappeared by the medical game that treatment, that appointments are the same as having more life. Right now there is little rest, and my life is NOT ‘stable and consistent.” My night care worker who told me she had ‘lots’ of experience with seizures due to her cousin told Linda yesterday she would fine not coming since she has no real experience with seizures, and hasn’t seen any since she was a child. Not a close cousin then. Plus Monday was her “day off.” So I have no night worker anymore, since I need someone who wants to make sure I am alive and sleeping instead of lying in pain. Not someone who thinks they have to stay up too much and this is their day off after all. My support is crumbling. I feel that E.F.M., that the fragile Beth, that the Elizabeth than needs to be comforted are all disappearing under this blanker of B.G. and the hope it will solve everything so lets just ignore everything until then.

That sucks. Because this isn’t just about me, as so many people have been excessively generous, and I want to thank you again. You have given to the medical fund, because collecting all those test and keeping me alive until I could get a date cost money. We personally have gone in debt further, on this hope of Booth-Gardner. And yet the highest percentage is a frustration that the Canadian Neurologists never did tests Q or R, or did a follow up, or just left ‘ideopathic’ all over my charts (meaning “Fuck! I don’t know!” in medical speak). So they have to make an educated guess and send me for the test, so more waiting, an more into the medico. Then B.G. does a follow up visit to start a round of treatments, and more tests after the treatments (if I am still alive) and then a visit to get an idea of my progress. Do you get the idea? We don’t have that money, and we are selling my book, and wrist bands and t-shirts and trying but I don’t have energy to put on 40 items on ebay (try 4) as having a shower IS my day. Linda is disabled and taking care of her IS most of her day. So we, or rather I will beg; I will beg on the street, when I can, and beg in the blog.

And that frustrates me as I don’t want to do it. These are people who are so kind that they gave me books to read, when I am too ill to move. They made the quality of life better when they had no hope of extension of that life, just because they cared.

But B.G. threatens us with HOPE, or the hope that HOPE of an extended life might happen....except that will cost thousands. Yet already I feel that we have betrayed the people who read here: they thought it was simple, give money and it covers my trip to Booth Gardner (except they forgot the transport and hotel and keeping me alive UNTIL then). So that I am so ill that the government and my advocate say I need a $23,000+ wheelchair or I will be too weak to move. That I need my body supported, my butt supported by a $1000+ cushion or I will have oozing sores, that I can’t feel. Only we can’t get it in the van, because we have to get a ramp: medical fund. How am I to GET to B.G. without the chair, without the other medical needs, of which we are still paying 80%+.

And all I can think is of all the tens of thousands that Linda will have once I die; because in an incentive for govt. managers to stay in government work, they doubled the spousal insurance with NO MEDICAL. Yeah, I am stuck for a thousand or two now, but she will have it when I die. So is it love for me to die quickly, before I burden her with life debt? Is my small stash of money for Hawaii to be taken, my $35 saved for Akadot, to be given instead to the maw of B.G.? No. I am not a machine to work for B.G.

But still, I am seeing what I have worked for pulled away, my art book fund, my Sakura-con fun gone and replaced with needles and the sheer terror of evaluation, since even when validated (that yup, you are dying quick), it never makes you feel GOOD.

Guess what, the NEW doctor I might sign with wants me to go to Bethesda, MD for special clinic there! We went with the Budget Option (in the US, $2,000 or $4,000 IS the budget option). And if they say I don’t have MSA, will they know the two to three auto-immune diseases in my body, the electrical heart problems, the rampant AV nodes (no operation scheduled), the cause of the anemia, the cause of the nerve destruction? Then there is the cause of the autonomic failure; and the cause of the diminishing ability to convert oxygen? Will they know any of this? Or best guess and treat?

So B.G. is good for one thing, at asking myself what I am losing, what do I want: I want to race in the TC 10K, even though that will hurt. I want to do a 5 or 8 K or two before then. I want to go to Sakura-con with Cheryl. I want to write a book. I want to go to Hawaii. I want to see fireflies again before I die. I want to make love to Linda. I want to have art books that I enjoy. Because my mental state is less than 50% of what is was (When I said this Linda only emphatically nodded), I like pictures. The pictures of the last several posts have come from Doujinshi from Japan or Doujinshi (non-commercial artists who publish their books but don’t sell in book store). I think they are beautiful. I want to go to Hawaii! All that is disappearing to (B.G.) and instead of being told ‘rest!’ I read and am told I must fundraise; so much every week. Even if I only have 50% chance of living, my life, though I am sick, weak and confused is to get the money raised for B.G.!

No.

Oh I will go to B.G. and be thankful of every single donation toward my medical fund. But it will not tell me what to do with what life I have. If I have to go to Hawaii alone, I will. If I am the only one to look at art books, stained with tears because everyone is acting funny like I don’t matter as much as the doctors who are to tell me who I am, then I will.

There are razor cuts on my arm less than a week deep. I don’t know why they are there. I know I am a self-harmer but I can’t remember WHY I cut that time. I see the scars of DEEP cutting from a month ago or so, and I can’t remember that either, or the ones before. I used to say that these scars were the story of my battles within written upon my body. Only if the author can’t remember……what use are they? I am wounded emotionally and cry and yet three days later I don’t remember. B.G. I will remember as it has moved in with us, an unwanted house guest. It squats there. In the same way the pain is always there.

I continue to DO, like visiting the new clinic and they have sort of accepted me as a new patient yet…I need to see if the pallative application works first and if it doesn’t, this doctor is a sports doctor and doesn’t believe in unneeded medicine. How does he feel about morphine? Fentynal? How many days and weeks will it take to find out; how many months has it been? How long in pain.

Yesterday I screamed and moaned from the weight of my body on my bed; I was so fatigued that moving me put me in shock. 21,600 minutes when I am awake that I am in pain each month, and I feel every single minute. It has been months since I have had adequate pain control. I scream from pain many days a week. I moan in my sleep; I have fevers from the pain, hallucinations. And yet, I go on.

Why?

B.G. has made me question everything about what it is to BE me. It threatens the work I have done with others to try and sequence; to look forward; to try and WANT things; to feel things, to have fun. I still don’t smile, but I am trying. B.G. put all that, even my lonely isolation in shadow, as it is all now secondary, is the feeling I get, to B.G. After all what is manga when I need medical treatment? When I could have a diagnosis? And I do, and I will go, and I need help to get there. As the new clinic head doctor said, “I am not sure if this clinic has the experience you need.” I replied, “I can assure you, that currently the province of BC does not have the medical experience I require, so that is NOT an issue to me.” What is something to read, or the feeling that might be enjoyment, or joy when I might live an extra six months on the backs and the cost and donations from dozens of people.

I think of those donations and think of the dozens of dinners out, dozens of little trips, weekend trips, surprise gifts they could have, for a 10% chance at a slight prolonging. I can’t ask that. And yet if I want to live I have to. I am supposed to want to live. And I do, but not in a way that makes others deny themselves.
The more I see all that I am and what I and others have worked for threatened by B.G. (which I WILL go for the consult, however terrified I am), the more I feel that I have no choices. Some days the only choice I have is what manga to read, and I wouldn’t have that if not for people who wanted me to have a better quality of life. Choice is the greatest gift. Thus the more attractive a idea, suicide, that would give Linda all the money she needs, to give back to those who cared, to take care of herself, and which would end those minutes and hours pain and give me one choice again. I don’t want to lose Hawaii. I don’t want to lose Sakura-con. I don’t want to lose trying to writing a book (even if I have to re-read it each day to know what is what). I don’t want to lose a plan to see fireflies again. I don’t want to lose the (is it joy?) anticipation of getting a new art book. I don’t want to lose competing in a 5K and being more than just that person whose life is over. And I don’t want to lose the reasons I have for living. How can I do that and co-exist with B.G.?

I asked Linda what she thought was the best way to commit suicide if Liver Failure is so horridly painful (though I bet I WOULD get morphine for that pain). She said she didn’t want to play this game. I said, “It’s not a game.”

This last Friday, death WAS imminent, I came within a breath of dying, over and over again. I was kept alive by continuous emergent care. Moving my body at all put me into a state of convulsive shock and pain which lasted for up to 20 minutes. I literally had to be held upright, while I continued to work. I have two books I would love to do, love to know I had time to finish, love to have that hope, but I guess I am terrified at the cost of that hope.

I want to try all MY dreams. I want to rest and make myself stronger. “Resting when everyone is wanting the action Elizabeth because you KNOW it is what will make you stronger IS E.F.M.” Linda said. I want to be E.F.M., and sometimes that is resting. But sometimes it is not, but trying when there is no reasonable expectation of succeeding.

I cry from the terror from the thought of failing so many people if B.G. goes wrong. I don’t want to use death as an escape and yet, why am I thinking and have been thinking even before B.G. about suicide. I have worked so hard and so many others have for me to remember to think AHEAD, to plan for the future. And just because I am in pain 21,000+ minutes every four weeks, I want to throw that away? Sounds kind of wimpy doesn’t it. I don’t know if you know what it is like to scream, not a short and punctuated scream of pain from slamming a car door but one that goes on and on and on because the pain doesn’t go away. It takes you past the brink of sanity until you claw back and you force yourself to trail off into moans and whimpers. How many screams did that take? How many minutes while you were held down? And I can't take any more meds, that is on all the pain meds I can take. And that is a couple days a week, it gets that bad. But I go on, because living is important, Linda is important, the postcards are important (at least to me), Hawaii is important and I want to FIGHT. I have been fighting with the help, some in time, some in finances of good and loving people for weeks (I think) to try and relearn time, to learn that living and the future is good! That Future is worth fighting for.

I don’t want to betray them, or myself. But I am very, very scared. And I am genuinely deeply depressed. I am tired and a little angry at people wanting me to be at peace, or fly away. Know this, and remember it, not in one thing except unconsciousness from fighting in my life over the last several months has there been a moment I have been ‘at peace.’ I fight, or die. I fight, or give in. And when I fight TO die. That is sick. I want to stop that. I want to fight for Hawaii WHILE I live. I want to love the future. I am not going to ‘rest’ or ‘kick the bucket’ or ‘fly away’ or ‘be at peace.’ While I live, I BURN! Even when I die, I will burn too!

I want to care. I don’t want B.G. to take that away. And I don’t know what to do.