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.

3:35 minutes: openly, I burn, what do you do?

It hasn’t been an easy few days for me; to listen while people cry, sob because the disease is in your brain. They can see exactly how you are reduced, less; that you are not what you used to be, not by any means, and that you don’t even know it. And I just sit there because there are right, and no amount of play acting or pretending is going to make me better. The only way I can stand that pain of knowing is to disassociate, to feel nothing at all, or try. Which is where I spend a lot of my time. Because people depend on me and I can’t run and hide: I can’t go and find a gun, and blow out my brains, what is left of them. Or I could but I don’t. It is fighting I guess.

Someone asked me how could I grow up in the environment I did and still be…well, me. I did it because I choose hard. Yes, I could have focused on money, or a house, or the façade of family and used that to feel like a shield between my fears and me. I was the lonely child, the lonely tween, the one alone. Sometimes I was used by others, as a ‘usable friend’ so they wouldn’t feel as bad about themselves as they did. Sometimes I was bullied because I reminded people of themselves and what they were running from in some way.

I think most people know what it is like to be alone, and not in a nice way, but where no one waits for you, cares about you. There are no phone calls for you, there is no post for you, and there is no one who wants to know how your day went and no one who cares if you were knocked down. But since other people go on, since there are teachers or bosses to obey, or parents to punish you, you continue because there really isn’t any conceivable alternative. And once a person has freed themselves, they often build up defenses around themselves, so that they never have to go back to that place inside. They would rather live in part, a lie, than face the demons which they think they have walled off. The problem is that as Edgar A. Poe so eloquently illustrates, you can’t wall up all you hate about your life, or yourself without walling up yourself too.
I did that, I made that mistake. I thought I could just have ‘a bad phase’ as part of my history. Except I’ve had nightmares for every night Linda has known me and intense, horrific nightmares for the last several years: a nest of maggots in my head while I try to keep my boss happy and then keep falling down from my hair, trapped under a corpse while people skin my feet, start skinning my hands. Sometimes it isn’t even the dreams, with everyone I have trusted coming after me with knives, but the feeling, the never ending dripping horror, the one that makes you wake with a gasp, and shudder because you know you WILL have to sleep sometimes and then the razor wire will be used on your vagina while you are strung up, or you will be thrown from a cliff until the bones show through the skin. These are the ‘nice’ nightmares. You see, it turns out that walling up parts of yourself, tends to piss off parts of yourself. And it wants to talk, whether you want to listen or not.

I follow what is hard. I was a young teen when I understood that Jesus, as written in the gospels, was verbally abused cruelly, was called the sorts of named I was being called; crazy, stupid, of unwed relations, of inbred relations, everything they could think of. And then there was the physical violence. And yet, every day, this person went out and honestly cared, cared about people he KNEW would hurt him. I believe that even on the final night when he greeted Judas he honestly said, “Friend.” Because even then he knew that this person still had a choice and could have been his friend. Oh, we tell ourselves we don’t have choices, but we do, from how we respond to how our boss speaks to us, to how we accept, as the complicit crowd how our boss speaks to others. We choose to go to work and we choose how to interpret that work.

I decided that I would try in every way in every minute to care about people. This decision has caused me more pain and isolation than any other I have made. It has left me fragile, not just one day, but every day. Because I open myself completely; I open myself emotionally and give that to a stranger. I give it to an acquaintance. I give my heart to a friend. And every one has at different times and different ways, reached in and ripped me up. And thrown me aside. And when I am able, I get up, and then open myself completely to the next person. It gives me the shakes, and it is hard, very hard.

And yet, simply because it is hard, doesn’t mean it wrong. And until I believe it is wrong, I will continue. And as fragile. Just this evening I got a message posted publicly that a man, not a gentle man, wished to be my caregiver. Because then when I am alone and helpless he could stuff his c**k in my mouth and (it went on for some time, there are many things he wants to do). And yet, I have literally had people ask me to send someone like him a postcard, and to fill with it with as much love as I could. And I did, because I could imagine the pain and loneliness it would take to bring that level of hatred/anger at another human. Oh yes, it did make me shake, but I did it. I will do it again.

Only now, my capacity to make decisions is being limited, because my ability to think or speak or do either is being affected. I wrote a short while ago about regression and memory confusion, in a post which I hope will help anyone who has a relative with Alzheimer’s, Parkinson’s or other cognitive disorders. I remind people of this post because I don’t know if I will be able to write like that again. There are many types of hell and hearing the ones you love in anguish, and grieving because you exist and they see what this disease is doing is one type of hell. But I fight by going on. I must go on. Because there will be more types of degeneration, and I will need to narrate that.

Some times, some days, I am a confused child, I have the fragility of a young child and the innocence as well, that is what a ‘brain-wipe’ gives you back, the innocence, except of course for the hate mail every day. It also eliminates all but the most vivid memories in your life, which also happen to be the ones you have been trying not to think about (in fact may be the very ones you have been running from – but look, they came for you!).

This disease has tested me but it also has tested you. Yes, if you are reading this, then like everyone you have choices. I get to say things that others don’t (or won't) because of 3 minutes and 35 seconds. That was how long Cheryl counted before she started the ambi-bag on me. I stopped breathing for 3:35 minutes (and I guess beyond when she breathed for me). At four minutes permanent brain damage occurs. How many seconds did it take her to notice I wasn’t breathing, to start counting? 10? 20 seconds? More? So what do I have to lose? I have four minutes telling me, make the words count. So I say to you, what makes you so different? What are you doing to make things count? If you are sitting on a fence, get the fucking splinters out of your ass and get down here.

I don’t have long realistically, and while I may PLAN for the rest of this year, I may also die, I would have died or ended up on machines if Cheryl had not been there, yesterday. So, yeah, you got stuff going on in your life. And yeah, there are people dying in other countries. Except they don’t creep you out like me, because I am like you. I am the person who exercised, who ate right, who shouldn’t be dying, isn't that right? And if someone who has traveled on five continents and seen the wonders of the ancient world, who owned a used bookstore, written an award winning book, competed nationally in sports, and has a raft of degrees is dying in a horrid way...why that means you could.

I’m not overweight, I’m not watching TV, I’m not on welfare. Indeed, I have paid in for 20 years to social security in three different countries: the US, Canada and the UK, and I have received nothing back EVER: no unemployment insurance, no disability pension, nada. Currently, I don’t even qualify for the provincial assistance for payment of my medications. So, I am not any cliche or stereotype. So yeah, scary. Look at your life and realize that 1 in 35 women will get MS, 1 in 700 will get Lupus. You have a decent chance, that no matter WHAT you do, or how important you are, or think you are, you and/or your friends, or several of them will end up a bit like me. Now that is something to think about.

So what DO you do? What are you? Are you the consistent comforter, I have a few people who do send me emails every day, expecting nothing in return, simply to let me know that people out there, like me, care. The emails they write give me the human contact I have lost. They stop for me, they wait, they spend time. They are the people I know, the ones I care about because they cared about me, and show it. They help me, because they show me their faces, their inner lives and I have to strength to do the same here.

Or are you part of the group which helps me fight, which works with me in things like finances or post/mail to try to get a better sense of sequential time. To learn how to read, which is critical in making both emotional and mental connections and links to different parts of the brain. Or to send surprises that I can anticipate? Or one of those to help me with the postcard project by helping me with funding for postage (desperate for 94 cent US stamps by the way!), for shitajiki boards (which I buy as the person gives me free postcards in equal value), for the stickers, for the rubber and wooden stamps? This is the defense, the group which surround me because as I grow less and less able to understand the complexities except, “I buy this and I get postcards” or “I have stamps for postcards.” These elite are there to make sure I can continue to fight in my own way, diminished as it is, because I stand on the shoulders of giants; those who have committed themselves and their lives, or finances to a person they never met.

Or are you part of the very few who are here to clean up the mess; who either in person or financially, are here to comfort, to protect, to make feel secure a person who does not understand much except I don’t understand and it is scary. So that when it happens that I saw something I liked and I got it but it turns out that $20 and $30 and $40 don’t make $15 (this is a real example), or that a bunch of $16 added up yes, CAN end up being more than a $100, or $200 ("but it was just $16, and $16 is small, right? How can small be big?"), the 'adults' take over while I am comforted.

And with Linda still disabled, and off at her doctors or in a drug reaction or sleeping, while I am not EXCATLY the two year old who drags out the white flour and decides to decorate the carpet, I can still cause a bit of a mess (unintended), sometimes financial, sometimes putting me in an emotional withdrawal. Someone or a couple someone’s has to be there, to set things right, to clean up the mess, to get me out of the withdrawal. To let me know that no, they are NOT going to take me to a HOME and that I need to sit and watch this nice DVD and NO, no one is mad at me. But also it might NOT be best to tell bookstores that I want all these pretty books if I don’t have money in the Ossuary to pay for them. “But I do,” I protest showing a $20 or a $40, which it turns out is not enough to pay for the art books even though I only found FOUR. Which isn’t fair at all! And they need to explain it isn’t fair but it also isn’t 2001. Which is a pretty big shock. As I still cannot accept this number on my Calendar.

I smiled once in the last three days. I was putting stickers on postcards (I think we did 48 or so), and I said, “I like doing this.” Because the thing is, I can be resplendent. I wore a spider web corset yesterday and I am working so that I can even feel things like ‘happy’ or ‘fun’ and so that I am more. That I transcend, because it doesn’t really matter if I am diminished mentally, I can still be very resplendent, that in giving myself entirely to something else, I someone become more than myself. I don’t know why it works that way, but it does.

So get off the fence and ask Cheryl or Linda (click on Girl’s Gotta Fly and profile for email), what needs there are. You too can be more, more than you are. And you know what, I think coming down and giving that a try is a good idea. I don’t know anyone yet who seems genuinely unhappy because they cared about me; or because they asked for a postcard. Not one person telling me they are unhappy because they asked for a postcard and started reading the blog, and maybe commenting, and caring. Or that they gave themselves over to caring and it made them a WORSE person. And if you are planning on getting involved may I remind you: 3 minutes 35 seconds. It turns out that four minutes is a bit of an mini eternity.

There is beauty out there, and fragility, and I will find it, because I hold both in me, and I can find them in others, in the secret and open places. And I will, even with my open and innocent face, tentatively try to find what good I can….and then give it to another. This is all I know. The postcard project is 10 months and I think just over 1600 postcards. That’s not very many, and that is very many. I, Linda and others have spent over $6800 on the postcard project (used calculator!). And another $1300 or more on the ‘surprise package’ project. Which isn’t medicinal…..except it is. Packages are still going out, postcards were posted yesterday, they are arriving around the world today. And what difference do they make? I don’t know. They made me a better person, I don’t know if they have made Linda or Cheryl better people. I think they made them more tolerant and patient people just having to deal with me! And I will go on, because while I am SURE I could have bought a bunch of cows, goats or pumps for villages, I couldn’t have made a person who hadn’t laughed for a week break out in laughter. I couldn’t haven been the only post someone gets beyond bills. How much have different nations allocated for giving back hope, for giving back belief that a person matters. I do not lie. If I believe you matter, you matter. Now you know.

But if you are just going to run away or watch in horror because you don’t want this to be you, or you think I am plucky, you are missing everything. You are missing a once in a lifetime experience because….what…someone was mean to you in junior high? Guess what, someone was mean to ALL of us in Junior High (unless you were THAT person – in which case, I’m glad you’ve changed). You can’t wall yourself off AND care openly.

I am a meteor; I am burning. Now, you can either draw the drapes in case the light bothers you, or you can watch, maybe with a loved one. You can be part of this, you have a choice, I don’t. Yes, it seems that I am burning out, literally, parts of me going until I simply stop and drop to earth. This post, is part of my fire. Every big post literally sucks something out of me. I can’t recover. So if you aren’t part of this, one of those who comfort, who are consistant, who help me learn fun, who keep me fighting, even if that is by defending my ability to continue, then watch and wonder.

I burn at both ends, I will not last the night; but ah my foes, and oh my friends; I give a lovely light.

Pain and dying: lay down your life.

Pain. Last night my pain was so severe that I used up the 24 hours of pain medication including my ‘breakthrough’ pain medication in the first 4 hours. The weight of my body, my limbs were crushing me in pain. I used my sedatives, a day’s supply, to try and get sleep. When I did it was of a guy hunting me down and hitting me with a baseball bat, or being thrown off the side of a building. In one unusual dream I was on board the Shuttle Challenger as it blew up. I used every opiate and painkiller I had and it didn’t stop the pain. I used all the nerve blockers and it didn’t stop the pain.

Nothing stopped the pain.

I groaned in my sleep, I groaned myself awake; and begged for more pain killers only there was nothing for me to take, not for another hour if I did not want to die of liver failure. How long does it take to die of liver failure? Three days? But I get my pain relief now? Great!

No, I was told.

But now, awake, as much as I feel like a cat who has been petted the wrong way for MANY hours, this is where I want to be. Alive. Alive and with my daily battle, how to make the greatest choice a human can have: to make a positive difference. I can, in my way, fight against apathy and the voice that says inside, “it is too big”, “you don’t matter”, “you can’t make a difference.” Last night, because someone fought for ME, I had extra padding on my bed: I was cradled as an egg. My pain was bad, but I was able to get some sleep. Hundreds of miles away, THEY had eased my pain, as they will ease it tonight. They fought for me when I lay helpless. They were there for me.

What or who do you fight for? If you are not struggling, whether it is to make yourself, your family, your friends, or your community, into something better, then perhaps you are already dead. Being a parent is a struggle, being a good partner is a struggle. Following your dreams is a struggle. Loving someone and being a good friend also means you will have bad times, you will do something stupid, you will cry. It HURTS. But it is worth fighting for. I know. I know.

I have almost died/died or been revived several times, but I’ve never been the one to fight, to be awake to pay ALL the cost. This time, coming back from Seattle and at Cheryls’ house I was the one fighthing, for hour upon hour. If I wanted life, I paid.

I was desperate. Not desperate people get when they are late for a ferry. Desperate like needing a miracle, and needing to make it happen now.

Because if I did not figure out how to put two systems back in line before I slept, it seemed, and after a few hours it became VERY clear, as the bright red blood was pouring over me, over my hands, that I would die. Not just pass out and let Cheryl and Linda deal with it. Dead. I was desperate to do things previously unthinkable, overcome phobias: if I needed to shove a needle into my heart, I would have done it. I was shaking, in shock and I couldn’t tell Cheryl or Linda how bad it was. I hadn’t told them in the 145 minute drive that my left leg was useless, my right leg becoming so. They were worse than useless, as muscle groups were locked, due to pressure on my spinal for hours. It was agony and I think the muscles were so tight in one calf section they ripped apart from the tension: one strand shredding, then another. But that agony was secondary to dying. “Just get me inside” I begged.

Agony was living. I had to figure out how to stay alive.

Somewhere after five or six hours of trying and agony and nothing working we took a break, and tried a short nap, though my breathing was cutting in and out. It was a gamble of a chance death over the growing probability I would soon fall over and bleed out. It was a prayer.

When I woke up, I was feverish, hallucinating and I still had to fix my body up. I had some horrific problems. I tried again, with desperation to do what needed doing, and this time it worked (EDS people, I now have some idea of what you might go through). I did not know if I had been internally bleeding for the last hour. If I had I was already statistically already dead. Because from my reading, at my level of anemia, any anesthetic and I wasn’t coming back out. So I was carried to the bathroom and waited to see if a liter or more of fresh blood poured out of me. If it did, I would have to go to the hospital because they were my only chance of living, to find what had ripped open inside and burn it closed, all without anesthetic. How much blood had I lost already? As once they put me out, would I ever wake up again. My research said no. It takes blood 21 days to replenish...if a delay in producing blood isn’t what is causing the anemia.

But there was no fountain of blood. It had healed somehow, some dark binding blood and that’s it. And only then did I let Cheryl check my abdomen for rigidity (sign of internal bleeding). My skin so thin she could feel the coils of my intestines. I was on oxygen the whole time but by this time my hands and fingers were purple/blue and I didn’t know if I was de-compensating (dying) or just if my body had pulled all reserves back to the core, abandoning my arms. So we slept. That was my second prayer.

I woke up. I couldn’t control my limbs but I woke up. I was alive and it was daylight. So I decided we were catching the ferry in 95 minutes. Nothing like exerting a little insane control to try and deny that sometimes we have no control at all. I had treated Cheryl badly, less as a colleague than an enemy, someone who might figure out how bad it was and call an ambulance and I would be dead and Linda would have a bill. Of course when you are delirious and hallucinating, it is unclear how clever at hiding things you really are. If I made the boat and lived for 60 minutes we would cross into Canadian waters, and the rescue copter and hospital would be paid for.

On the boat ride back, I entertained a 15 month old who played peek-a-boo. I showed her the pictures from the postcards I had with me. All still lying down. Still hooked up to oxygen. And I finally understood, what it was to lay down your life. To fight and spend your life with purpose.

I am alive. I should, with my memory problems; my health problems and my financial situation live a life in total fear. The only reason I don’t is because other people carry my burdens for me and fight for me. I was able to eat lunch because someone bought me utensils I can hold. I am alive tonight because Cheryl has watched over me, she knows when I am likely to stop breathing or when I have a fever (as I did off and on until this morning). I can sleep because Linda watches over me, literally carries me when I need it. Others watch over me, from helping me with the postcard project, to writing me weekly, to calling me to let me know that someone out there gives a damn. They haven’t given up on me. And if they won’t give up on me, I won’t either, however much my inner voices tell me I am not worth fighting for at all. For I am a thing, an animal, a sub-human. I don’t always look like a human, I scream and grunt and breathe in short choking breaths at times. I turn odd colors, and this planet doesn’t agree with me that much. I fight against my voices to give proper value to the gifts and sacrifices others make for me, on my behalf.

Spending our life is something we do everyday, sometimes in frustration (traffic!), and sometimes (more rarely) in deliberate action. But it is spent either way.

When someone spends part of their life for me: whether that is the money they have earned, the time they spend writing a card, or making or shopping something for me, deliberate acts people have done: this is a gift of greatness. Thank you.

I will try to list, another time, the long list of people who have done what I believe is the spark of the divine in humanity; to lay down their life for another.

No, not to die, to lay down LIFE, their life, the time they have to spend, they spent on me. They laid it down for another. And the other was I. I know of no way to give adequate thanks for that. But I can recognize it, honor it and emulate it.

I have run into people, recently, who are sick, not sick in the way I am, for all I have is pain and a body going to rot, but I LIVE. They don’t. They let others spend their life, they have decided not to fight for anything, including themselves. And they think of this as good, as normal. It makes me angry. No, it is not normal to ‘accept your bit’ and let it lie at that. Or to think politics and morals are the same. No law can contain the human body; lawmakers can only show their ignorance by deciding by law that one human is property of another, or one human is 3/5ths of a human being. Or that humans joined of different sexual orientations are not equal (Doesn’t God get a say….nope, the state constitution overrides God it seems). And that those who are disabled or elderly are to be weighed in economic terms.

When I first became severely disabled I asked, “What purpose do I serve in society that justifies the costs of my existence?” See how I had accepted the inequality of humans (of course, the same argument was made on the use of child labor 150 years ago). I am a human being. That society does not know how to incorporate me and others like me into the spectrum of what is human experience is not my fault. I hope Society can grow up, can learn, but the disabled, the elderly, the dying are still equally human.

In our culture, we DO treat the dying as sub-human. There is a circle of life (not a straight line into infinity, sorry to disappoint) and while we treasure and have protections for those who choose pregnancy and children, we have nothing really for those who are dying. Yet, it is the same circle. It is just there is no place for us. No societal aspect in which we are accommodated or even expectations we would be out in public at all! You know the one word I was too ashamed, too socially pressured not to EVER say for all the time I was away from home, the word I can only say on-line and in my own home. No, not ‘lesbian’, I can say that fine, I can shout it along with ‘Boobies!’. It was ‘terminal.’ Over and over people projected onto me that I was just like them, just sitting down and I let them. They acted as if I was stupid (“So you’ve….taken….a course at university?”), or if I was heroic (“That’s the way to show them”), or a stereotype, (“Are you wheelchair BOUND?”) but I never said the truth. I’m dying. I’m terminal. I have a degenerative condition. Because I knew they would have no way to deal with that. And socially neither did I. And yet, it is a shame because we are all dying. Only it is a few of us who know that, and the rest, well, they just stare in surprise.

I wasn’t doing anyone any favors by staying in the closet about death and dying. In fact, my denial, my need to feed their vision of me probably helped facilitate my OWN delusions and brought me to the closest I have been to dying while conscious.

On the ferry I thought of the Greek and other city states, who had a designated group who were those who helped decide the rights of the city against other cities. In one specific city, the women learned the sword, the men the spear and the armor to crush. These were people for whom all knew that someone would die every time they marched out. They fell in love, became friends and lovers, and then that group marched out and killed another’s lover or did not come back themselves. I am a pacifist, and an idealist but I can understand the appeal and ease in which one simply is, to represent your friends and family as you go to fight. It is harder to live, and to lay down your life, every day. People are broken. Children are broken and scarred. This is not fixed by marching out to kill someone: it is fixed by laying down a part of your life over and over and over again.

The things worth ‘fighting for’ are we, our lives and how they are spent. This is what I see in people. What I see reflected in those I know. They fight to remember that they are spending their life deliberately, laying down their life and that it matters. They fight while working long hours in a hospital; fight to save animals who are abandoned and in pain; fight to save humans who are abandoned; fight against yourself and your disease to BE there for those who fight for you. There are those who fight to have clean blood so that when, as I have been bleeding almost constantly since late Monday, as I may need to go to the hospital soon for a transfusion, that blood will be there. It matters. You have to remember that. Yes, it is a job, it is politics and jerks; it is dealing with a disease that never quits, that punishes you for nothing at all. We keep on because someone like me waits. I wait, for that blood, that letter, or for a smile of greeting from you. And when you have HAD it with the kids, when you have an argument with a friend, when you are hurt and instead of speaking what first comes to mind you think and remember the love you have for them. That is fighting within you for something that matters.

When I was able bodied I was a fool, believing that ‘once I get my job teaching’ or ‘once I get tenure’ or ‘once I get a deposit on an apartment for Linda and I, THEN I will make a difference.’ My disease has many gifts, the pain I love not so much. But I love the freedom, and the insight. For now, with all the power in my being I fight. Because there are so many things worth fighting for: things for which I am going to lay down my life.

Every postcard is my arrow, my act of resistance. Every package, every note, every email is my attempt to drive back this idea that somehow people don’t matter, or some people don’t matter or that people don’t matter equally. Like I said, it is a sickness. And it is my intention, entirely, for my next trick, to live a good many years, which I believe is possible, if only I were in charge of all the hospitals and could get things done (nice dream eh?). But if that doesn’t work, I will work my havoc here and there. I am taking GOOD care of this body, as I have another 1000 postcards to write. I will tell people over and over again that they matter, until they realize one day that they have been telling people the same thing because it IS true.

I do this not because I am in any way sanctified. But because I am one of those people who are broken, and maybe, because of the people who fight for me, that which is broken will heal a little.

Then one day, I will ascend to human. And I will matter.