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.

23 comments:

Neil said...

I'm still here. I sill care I have n clue what to say...

The little money that I've been able to send you? I don't regret it one bit.

You don't need to apologize for ANYTHING< Beth. You are probably breaking new ground in communicating while sick. You are still alive, and I like that. But I want you alive and not in pain.

Parying for peaceful sleep for tonight; we'll work on tomorrow later..

And zen hugs, too!
Neil

FridaWrites said...

Please don't think you're letting anyone down if Booth-Gardner doesn't result in a miracle--we all hope for one, but you need to worry about yourself right now. Your friends are still behind you no matter what. Not to be droll, but you can't die yet, you have something in the mail.

It's really frustrating that you may have to wait for more tests after the appointment when of course you want both answers and treatment right away. And disappointing about Hawaii. It does seem that something like a pacemaker or better meds really would support your body.

Some of the pain you mention from just the weight of your body on the bed--would a different mattress overlay help with pressure points and the aches as your physical needs change? There are mattress overlays with alternating pressure that inflate/deflate at different points continuously to relieve pressure and aches. There are also gel overlays too. I don't really know anything about specific products. A lot of pain can come from bedrest, even though that's sometimes what's needed.

Your family, wow. Loved the lawyer's droll comment. Can't imagine as a mom not giving support.

yanub said...

Booth Gardner does represent so much. I would be also overwhelmed at the prospect of going someplace that will either give me hope, but at a difficult cost, or strip away all illusion of hope. But your fear that we who care about you will be disappointed somehow by what transpires can be put to rest. Any money sent, any time spent, was a gift, not to you, but to us. We do what we can because you are valuable to us. Linda has spent her health and risked her job because that is how much value she places on you. She will never regret how much money was spent. She didn't marry you so that she would be comfortably well off. She married you because she values being with you above all else. Cheryl makes that exhausting trip and takes care of your errands and gives Linda a hand, because you are worthwhile, not because she expects you to go to Sakura-con. Don't you know that your promise and intention to go are so real that they have value in themselves, even if chance works against you? All of us who help you in any way, we get immense joy from that. I'm not foregoing a movie or a book or something if I choose to help you. I am choosing, among my options, the one that means something to me. You mean something to me. I am sure everyone else who chooses to help thinks of it in the same way and that no one wants you to feel obligated to them.

The options before you right now are simply not good. It isn't a choice between Hawaii and BG. If you went to Hawaii right now, you'd be spending the entire time exactly as you spend your time now. You should still hope for Hawaii, but it will take being well enough as much as it will take having the money. If you are well enough, you will somehow find the money, I think. And that is why you are going to BG, to see if you can become well enough. The scary part, if I understand you, is that now you can hope things will improve. But maybe at BG, you will find that nothing can be done. And then, you fear, all your hopes of something to live for will be gone. I don't think that will turn out to be the case. For one thing, there are the postcards, which are important to not just you. Then there is Linda. And Cheryl. And all the rest of us.

I like that palliative care can go on for 3 years. That's a good chunk of time. In that time, you can get your book done. Heck, really, you have at least one book just out of this blog, so that seems like a plausible goal, regardless of what you learn at BG. Even if it is published post-humously, you will definitely get out another book.

With everything you are facing and threat that BG represents to the weak stability you've been able to carve out, it's no wonder you are feeling depressed and anxious. I can only think that is the normal way to feel in the face of such enormous trouble. It's OK to be afraid. And we aren't going to leave you, no matter what happens. You can't disappoint us because we already know you, and know that, however you face down this dragon, it will be the right way for you.

Oh--your mom? Woman has issues. I am surprised that you were even able to get in touch and get to borrow your dad's dolly. Some people are so weirdly afraid of disability and death. I don't understand it, and don't let them off the hook for it, either. They need to get a grip and stop being such shits just because they won't face their own phobia honestly.

thea said...

Oh Elizabeth, all that is not fair, it's so frustrating. I'm frustrated for you. I'd like for all the things to be able to happen easily, the trip with Cheryl, the Hawaii trip, getting medical things fixed quickly...

I wish money was easy for you guys too, I wish for you that you didn't have to struggle and make the choices of which thing to go without.

I mean, I'm pleased to hear you finally have an appointment. I hope they can help, and I hope also they can give some support to Linda for this, and that you can get in the palliative care support, and better drugs and stuff to make your body easier. But I feel disappointed on your behalf that it's such a struggle to get it happening, and a sacrifice.

Elizabeth McClung said...

Frida: I can't worry about myself, because of Booth-Garner if you know what I mean, what I want is overtowered by what my doctor, Linda, my specialist, other people want.

I don't know if I will die or not, I am actively suicidal and Linda has sort of stopped communicating. I guess I will too.

Hawaii has been promised to me, whenever things are worst and then taken away when things are better, even today, when things were bad, and I asked, are we going to Hawaii, Yes. But as soon as I don't look like I am going to die, it disappears again. I think Hawaii is a metaphor for a coffin or something, 'yes, you ARE going to Hawaii but we don't know exactly when' - I was thinking the off season when it cool and cruise ships are repositioning and kids aren't out of school yet and airlines have deals. But of course, what if BG wants that time, or that money. Don't I want to live a bit longer, or have a hope of living a bit longer if I only give up all my dreams that keep me alive? Too late, we've taken them away.

I have a $4800 bed of which there is one of the highest ranked memory foam mattresses on it (much of the cost is the mattress. And atop that is more softening foam. The things is, I am not so great at taking days, or hours, or minutes in bed. I have hypersomnia but I am also very, very busy. This blog took me 14 hours to write and get the pictures. I guess that shows how slow I work and how darn stupid I am, but if I don't work full time, I wouldn't even be able to try to blog every other day (which I can't sometimes.) No worries about the bedrest though. I simply can't get another mattress, this is rated as a palliative mattress and took 10 months to get funded (due to falling behind the desk at blue cross), I don't think I have another 10 months. I still don't have a back up battary for my respirator since they 'have to make more' since december. So for instance on Monday I ran out...of oxygen. So between the suppliers and the funding sources, everyone is moving as fast as they can, which means I should have an ergonomic wireless mouse ordered I think Feb 08 sometime fairly soon.

I'm sorry, I am not angry at you, I am just frustrated because I assumed that when things like, for "Breathing" or wheelchairs which require special controls are ordered they come...soon, like weeks or a month, not 7 months. I think probably most of the time in Rehab is waiting for your damn wheelchair to arrive.

As for the pain, apparently simply breathing rips the muscles in my back and between my ribs, along with anything else, like....typing. So I am literally laying on ripped up muscles - and in some cases fractured ribs (depending on the seizures) - luckily Cheryl was able to tape me up so I could keep working.

JaneB said...

Beth, we love you. I am so sorry to feel the pain, the emotional pain, in this post. I can't say this often enough - I value you, and being able to help a little is a gift you give me, as much as any things I give you.

It's so easy to feel as if medical stuff, or work stuff (well, for you, the medical stuff IS your work now isn't it? Staying as un-ill as you can to keep reporting, sharing with us here, to keep reading, loving, being), has taken over your life. Don't let it, my dear - I will be ordering you some more manga (or art books if they are on the wish list), and your 'Beth needs pleasure' fund is as important a part of the medical side as the B-G costs.

Dear Beth, just... keep fighting, even if you have to fight by 'resting', by going quiet. Never, ever let yourself believe that you are letting me or any of your readers down - grant us the right to make our own choices, to love as you love and choose to care for you, as you choose to care for your postcard recipients.

Elizabeth McClung said...

Yanub: I think all BG offers is the path to where hope MAY lie. I AM going to die unless they have found another disease with autonomic failure (well, massive lung cancer can produce heart autonomic failure but that isn't really a step up) - the question is when. MSA just knocked you down and down, until eventually something fails, and if that doesn't kill it, it makes you weak and then something else might fail. That's how it kills you, nothing definate like cancer or other diseases, which is why it is colds or being exhausted that kills people with MSA - how do you say, "Within Six months Elizabeth will be exhausted enough to die." Have I been exhausted enough to die - yes, at least twice, maybe three times, and with trauma. Plus I keep losing blood, which is bad as the tests show I can't make more.

Well, I kind of did think Linda would be well off, I mean a university prof does okay, but how was I to know this would hit before I got that banked away. But we did get to see the capitals of Europe. It it true what you say about Cheryl and Linda doing a thankless, or rarely thanked tiring job.

But I still think that Cheryl really is going to Sakura con - she is an Otaku now!

I am glad that you make choices that make you happy and I am one of those. I will say though that it does put an onus on me, to try and show you how you have improved my life, or changed it. I try to show you that you are important because you made that choice.

YEah, true enough, if I can't rest here, how many days will I last in Hawaii, like 2 maybe? And then be in the hotel while Linda and Cheryl see everything - that sucks! Maybe if I had a blood transfusion first!

I just don't have the energy, I have three boxes of manga (yeah, yeah, I know, I have been working on it for a while) to sell, but I don't HAVE the energy, putting up 3 or 4 things is a lot for me - for a manga auction to go into the next level there needs to be about 50 lots, of at least 15 a day. I am trying to get that organized, because it would give me I hope about $800, I could pay back everyone (my parents never give money, they just lend it) and have a good start on Hawaii money. I am worried that with BG, that the people who do help will fade away, as right now they are the only emails I get (sorry, that's the truth, Elizabeth Ghost Town!). And since I work full time to do one blog post, I can't go around and support everyone else. It sucks. And yet the plan of me looking ahead I think is working. I believe it is. I want to believe that. I worry that my training will be sidelined by tests, or make me too weak to race, that people will drop out waiting to hear about BG, that everything will be waiting for BG and that I, with my two day memory will simply be destoyed, my communication gone, my hope gone, everything gone, no matter what BG says. And if they say, "You gonna die." Then what has this all been for?

Well, you can REGISTER for three years but you can't use the services until the last year, or the last six months (depends if you have nurse nice or nurse nasty answer the phone that day). Yeah, I would like to edit this book, I would like to get another book written too.

Thank you for understanding that I do feel threatened and I see the weak stability falling apart. I simply don't have the capacity to be the person in charge and yet there seems no one left to find me. No one coming. I think that so many people have left, that this is not what people want to read. And I try to make light posts and happy ones, but.. I am not in the disability carnival anymore because I'm not disabled...haha, that really hurt. I am not linked by others, I am not 'cool', becuase I have this dread disease and kicking ass - though to be honest, when you scream and know you will scream again, getting on with it, and doing posts and getting cool art IS kicking ass. But no one gets that.

Yeah, who knew that there would be a phobia of me? Well, I guess I always suspected it when I was depressed but didn't think it would happen. My GOD I am in my 30's - WHO think this is going to happen - who thinks they won't be able to pee, or take a shit, or feed themselves or any of that - who thinks that people will be scared of them because their hair falls out, and no one will ever say, that they are pretty because the skin dies and falls off, and........nothing prepares anyone for this - I was prepared to help my parents decline but I didn't IDENTIFY with it, I was prepared to be a teacher, be a person on the sidelines, I dealt with disability or impairment, but not this, not this. Fear because I am death. IS that me or them?

rachelcreative said...

Yanub says some things I'd like to have been able to come up with myself. Certainly reflects a lot of how I feel.

For my small part of your Not Dead Yet plan (writing to you regularly) that is not going to stop. Not because of BG or anything else other than you telling me to stop. I made a promise.

As for any money given I echo Yanub - it is a choice. There are no strings attached and despite what you say no pressure on you to show how it has improved your life or happiness. It's just money. There's things much more important - love and friendship for starters.

I always saw BG not as a hope for a miracle but as a hope for filling the gaps in your medical care. Mainly in having the expertise, care and balls to give you the drugs that could actually make a difference to the quality of your life.

Getting to grips with seizure control and pain control for a start would let you do more with the fight you have in you. No doc in BC seems to want to take action - my hope is that BG who have a different experience with conditions like yours - that they will have the humanity or interest to try.

For both Linda and you it's a rollercoster set of emotions (understatement of the century). I'm sure you will pull together to find a way through the fear because that's what usually happens. Linda loves you.

I know BG and testing is going to be massively disruptive and testing is no reward for you. But your friends and adopted family are going to stick with you. We'll work to adapt to the changes too and continue to work with you and give you all that we can to help.

I don't see that you have to give up hope and the things that you want to take BG instead. I'm certain there is a balance to strike. I remember the previous rounds of testing and how much it stole from you. So I know this time it will be even more difficult with your body at such a low ebb. I just think that we can find ways to include the Not Dead Yet plan in amongst it all.

Choose both. Have your cake and eat it.

Stephanie said...

I was a Lifeline contact for an elderly neighbour in my old place because his own daughter, who lived just 8 blocks away on the same street, couldn't be bothered to take responsibility. If I was still living in your neighbourhood, I would happily be a contact for you. Unfortunately, where I am living now, by the time I caught a bus over to your place it would be the better part of half an hour, so that probably wouldn't be so optimal.

Still, if there is anything I can do to help you out: post items on Ebay, take dictation for your book, whatever, please contact me. I would be glad to help. Your writing over the past few years has given me a lot to think about regarding my own situation in life and I would like to be able to pay you back in some way.

If you ever do end up going to Maryland or elsewhere for treatment, I highly recommend the Hope Air charity (hopeair.org). They paid for my flight last fall when I had to go to Montreal for special surgery that isn't done here in BC.

SharonMV said...

Dear Beth,
I'm sorry about all the frustration & pain you've been dealing with. I know just going to BG will be very hard on you physically & emotionally. Dealing with more tests, doctors, evaluation is hard and very exhausting. Linda & Cheryl are so focussed on it because they have been working so hard to get you there & because of the hopes they have invested there.

I am hoping too that it leads to some treatment that will improve your quality of life - less pain, more energy, so that you can be you, Elizabeth, do the things that you want to do. I know that you feel caught up in a maze or labyrinth of medical stuff, impersonal institutions, doctors who want to classify you by your disease.

It's like that hero's journey, the one to the underworld. It's scary & full of bad stuff. But there is important knowledge to be gained, knowledge about life & death. But then the hero (that's you Elizabeth) comes back, comes back & goes home to her place, her people, her wife.

We will all be here to listen to your stories, look at the pictures, to help as we can. To help you do what is important to you.

Sharon

Anonymous said...

Hope can be a curse. The hope of hope can be worse. But it's also a firefly light. Terry Pratchett said, "better to light a flamethrower than curse the darkness".

Yanub's spot on - anything spent on the Beth Fun Project is something chosen, not something forgone. Your accepting is a gift to us. And if you get only a moment of lightness from it, a moment's enough.

Fear because I am death. IS that me or them?

It's certainly not you.

BG is going to be demanding. It'd be demanding if you were healthy! So, no, not going away because of it.

FridaWrites said...

I know you're not upset with me--you're just explaining more. Hawaii has given you something to look forward to, and I feel badly that the needed health care must come first when you were looking forward to it--these plans really do matter.

I'm so sorry about the pain level. I empathize because I had a lot of pain on bedrest when I was small, though I know a lot of your pain is coming from other body issues too. I just wish there is something I could do.

The waiting lists for absolute necessities are just ridiculous (like the respirator batteries). No telling how many lives would be saved (and quality of life improved) by agencies taking care of these matters and replacing equipment if something like backup batteries aren't available. You're probably right about wheelchairs and rehab.

I know it takes a long time to blog. But your blogs are as smart as ever, even though I know the physical challenge is difficult and you have the memory issues.

We've all forgotten about the disability blog carnival recently--there's a particular entry you wrote that I think would be really good for it about what dying. I can email you about it.

FridaWrites said...

PS, I forgot to write that if you make $800 from a manga auction, put that away in your savings for any medical tests that may be ordered or Hawaii. Anything people give is a gift, and people don't want that back! I have more movies to watch and books to read than I can and eat out when we like. We are just fine and not forgoing anything at all.

Lene Andersen said...

Hope is terrifying.

Your mother is... I have no words for what your mother is.

I have no words today in general again and this is a post that deserves words. Or a hug. That could say what I feel. I understand, I think, why you're so depressed. Aside from the dying, uncontrolled pain makes you depressed. If BG can get you adequate pain control, I will love them, but I also hate that they're taking your dreams that were giving you joy to anticipate. What's the point of living if you have nothing to live for? Medical appointments aren't life. But please don't feel bad about BG or the money. I would give millions (if I had them) if it meant you couldn't be around longer and be in less pain. I'm working on winning the lottery. Will keep you posted on the progress.

We'll find a way to get you to Hawaii still. And in a 5K and to the conference thingy (oh dear, really have no words today, do I?). We'll figure out a way.

yanub said...

Someone actually told you that your posts don't qualify for the Disability Carnival? Well, that must have been just one person. When I host in April, you will certainly qualify. Disability isn't all sunshine and roses, and we aren't obligated to pretend otherwise in order to curry acceptance by the nondisabled. The whole point of disability rights is inclusion and acceptance as human beings even though we do, in fact, have impairments of various degrees.

OK, I think I understand the palliative care set-up better. But I don't see how a person is expected to know if they are in the last year or six months of their life. What happens if you don't die on schedule?

As for you whether I know that I make a difference to you, the answer is obvious to me, so don't worry that you don't show it. You do.

Abi said...

First, I must comment on the pictures. You have surpassed yourself here! There are so many gorgeous ones! I want the corset the girl with the bandages is wearing, as well.

I think that what I am hoping for at Booth-Gardner is that you will get a treatment plan that will treat some of your symptoms and actually make you more stable. A miracle cure would be perfect, but does look unlikely. Basically, I want you to get what you should have had already. I am annoyed that achieving this will cut into your quality of life, though.

Whatever the outcome, you will not be letting me down. I know that it is an impossible situation at the moment, and that people are wishing all sorts of things on you (me included - sorry - trying to be helpful but only succeeding in being annoying).

Thinking of you and sending lots of gentle hugs xxx

Nancy said...

I really loved the images today, and the way that they reinforced what you were saying. The final one, in particular, spoke very deeply. Thanks so much for your honesty, and for sharing what's going on--we're thinking about all of you.

Veralidaine said...

Ach, Beth, this is another of those posts where I have so much to say, but I don't know how to say any of it. First of all, I'll echo FridaWrites-- you are NOT letting me or anyone else down if you don't get a miracle from BG. The only thing that would make me feel let-down would be if you decided to stop fighting NOT because you were ready to stop but because you felt alone and overwhelmed. But I know you will not do that-- you will fight as long as you live.

If fighting is going to BG, fine. If fighting is going to Hawaii, fine. If fighting is staying home and taking a lot of morphine and looking at manga, that's fine too. I didn't sign up to purchase with time, love, and money the service of "My cousin goes to a doctor and gets better." I signed up to help my cousin fight for her life and quality of life. I will do that, no matter what form the fighting or the life takes. As much as I can from a distance, I will be here for you and do what I can to make your quality of life better.

I googled Sakura Con and it seems to be April 10-12. If you are going to BG April 6th, why not stay for the weekend and go to SakuraCon? I can't make Hawaii happen for you (I think you need some richer cousins!), but maybe I can help make Sakura Con happen for you.

What do you need? Tickets? Money for books and things while you are there? A goth Hello Kitty corset to wear? Yes, I saw one of those on Ebay the other day... We have until 3/15/09 before the ticket prices for the full weekend go up, and then until the actual Con to make sure that you have the other things that you need to go.

I am on your team, Beth, as well as from a distance the medical team by contributing to the medical fund, and I hope on Linda's team by trying to make her laugh and leaving supportive comments on her blog.

If we were to play Badminton as a team, you would not be afraid to shout to me, "Get that one!" if a birdie passed out of your reach but within mine. If we did a race as a team, you would yell, "Keep up!" so our team wouldn't lose.

We are a team running the "Keep Beth Alive and Improve Her Quality of Life" marathon together, and there are also many other teammates, from all over the world.

You and Linda and Cheryl are the team leaders, so when you have a need, shout, "Can you get that one!" to Yanub or to Neil or me or anybody else on the team. It is not begging or an insult-- it is putting a team member from the bench into the game, or from the sidelines into the race. So if right now your need is to keep a promise to Cheryl and go to SakuraCon, YOU focus on staying alive long enough to make it, and let the rest of the team focus on hitting the other birdies.

Send me an email with what must be done to make SakuraCon happen and be a good experience for you. One sentence is fine, like, "I need three weekend passes, such and such a costume, and such and such an amount of spending money."

Pass me the ball, and I will promise you that everything I can do from a distance to make SakuraCon happen for you, I will do. I want that for you, so that after all the needles you have a few days' rest and the anticipation that if you just get through the needles, you will go to Sakura Con and see all the sights and buy little figurines and art books.

wendryn said...

We're still here, still supporting you. It's hard knowing you have to deal with all of this really difficult stuff.

I agree with yanub - the time we have spent sending you things, making food, and sending postcards has not been a drain. It's been a gift. You are important to us.

cheryl g said...

I have no words where your family is concerned…

I think I understand your feelings about Booth Gardner. I want you to live but I am afraid to hope. I don’t want to see you lose your identity or stability. I do want to take the risk in hopes that we can get you better pain control and some treatments to improve your quality of life. I would give anything to have your life improve so that you can actually give me a genuine smile.

We are still going to Sakuracon. It is going to happen. I have a plan. I am also continuing to work towards Hawaii because I want you to have that dream. I also believe that the artbooks will happen. I actually believe the ‘making sure Beth gives a damn about the future so she wants to take her next breath’ fund is more important than BG but I also think we can have both.

I want to see you continue with artbooks because the pictures you use on the blog are beautiful and help tell the story. I want your life to hold more than just tests and medical stuff.

You say you feel like you have betrayed us and you are afraid of failing us. Everything I have given and will give has been done freely and with love. You have not betrayed me. You can not fail me. I can’t say what I feel nearly as well as Yanub did but I echo her sentiments.

Suicide, your death is a choice but it would not give Linda peace or security. It would give her pain and unfathomable sorrow. It would do the same for me. I don’t want you to lose Hawaii, Sakuracon, artbooks, the postcard project, seeing fireflies, doing 10K’s or writing a book and so I will continue to help you work towards those goals as well as do the BG thing.

I want you to love the future, I want you to care. I don’t know what to do either but I think we can figure it out together.

Raccoon said...

Okay. I'm going to have to read this again, because there's a lot in there.

However: Hawai'i -- I have faith that you'll go. Hopefully, you'll be well enough to enjoy it.

BG... I can understand the (ambivalence) that you're going through. "Looking forward with dreadful anticipation." So much hinges on them. But, at the same point, what will really change? At this point, I'm just hoping for better pain meds. Anything else is bonus.

I said this a long time ago: I'm not going away. I'm going to keep supporting you as best I can, with my e-mails, with my comments here, with the little things I'm able to send your way. You are important to me.

Michael

(PS: I got the cat girl card today! Very pretty looking femme. Thank you!)

SharonMV said...

Dear Beth,

I'm sorry that you're going through so much. I do hope BG will give you some help - pain relief! that would be so good. I hate to think of you in so much pain. The whole situation must be very difficult - all the tests & waiting - such a drain on you. And having to go to this new institution which now has so much power over your life and Linda's. No one could fight harder than you have Beth. No one could do more than you are doing. It's not wrong to want things to live for, things that make you happy, things that you choose and not some doctor or disease choses for you.

You have been a wonderful gift to me. Making stickers for the Postcard project and presents for you have given me many joyful moments. Every time I get an idea or think of something to make, I think, yes, Elizabeth would like this, these images, these colors. You have been my Muse almost since the moment we met and have become a very dear friend. I want that friendship to continue. I want you to have many happy moments.

By the way, if hair falling out makes people run away, then they'd be running away from me in droves.

Sharon

Stephanie said...

I really don't know what to say (as always). I've always believed in quality of life over quantity of life, but I can also understand everyone wanting to lengthen your life. But if it gets in the way of your quality of life, I don't know. It's hard. I always thought your trip to Seattle was about improving your quality of life rather than quantity. That makes sense to me.

What awful feelings. I can't imagine how you're feeling, but I sympathize that it's frustrating and depressing, especially as you've laid it out here for us. I've got no suggestions for you, just hoping something stabilizes...