The Elizabeth of now, maidens in towers, gift buddies and more

This is the Elizabeth of now, trapped in the prison tower of time, writing. As a child I was told of how caterpillars were really just butterflies in waiting, told as that they did not matter, not until they entered a chrysalis and emerged a butterfly. I always looked at the caterpillar who looked quite happy climbing plants and eating leaves and wondered if that personality wanted to die? Because once a butterfly you can’t be a caterpillar anymore, that one has to die for the other to live.

In a way, that is the life I live, trapped in the movement of time. I ask Linda over and over, “If I could stabilize here, with this high level of maintenance, would you want me to? Would you want me for 10 years, like this?”
I have between 10 hours of consciousness and memory and 32 hours before I become someone else, my memory gone. I become a hundred variations of my heart, my fears, my confusion. I worry that I have offended people, that I have hurt others, and I find I have. People ask about the scars on my arms and I don’t know where I did get them. That wasn’t me. Every time the clock ticks on. Every time I sleep I do not know if I will wake the same person.
I can spend most of my energy collecting the information to bring me up a semblance of similarity to the person who sat at the desk before me, the me of yesterday, or I can just….be. And in being, I am lost, I am confused, sitting in a desk that is not mine, but one that has things which I like. I know what I have read and a manga can be read in a day. That is important. It goes into the emotions of the me of that day. As that is all I might remember, the warm feeling, the wanting of that feeling again.

While I have suffered, and been abused, anyone knows that they can say anything they want to me and two days later, tick, tock, tick tock, the clock turns and I am the new blank me. I want what I suffer, what I learn, what I stand up for, what I fight for to be mine, not stolen, but it is, along with the joy I have, the feeling of accomplishment, of intimacy. I don’t make memories for myself, I push myself so that those around me make memories, because the me of that day will die soon, and the new me, and the many versions of me later will not remember.

Every day my life fades.

How can a person who is born, lives, yearns, is ill, suffers, strives, endures and dies within two days have dreams? What can be carried? And yet, I do not want to simply live. To spend all my time maintaining the illusion that I am what I was, when I don’t know what that was, except to read my blog and admire, is draining my time and energy. I don’t have time to be me. I don’t have time to dream. And certainly not to live.

I have been ill this week. I have received very, very few emails, so I guess the me of before was a distant and cold person. It makes me sad, when with fever, I have an entire week of emails including junk on a 20 line page. I was told I was very, very sick on Monday, but got worse on Tuesday, Wednesday, going down. I did not have homecare on Wednesday night, or Thursday due to no caregiver being found. I did not eat for a day and a half, or drink for two days. Now that effects things like bowel evacuation. Until you have sat on a toilet for five hours until you have passed out, had to do a manual evacuation to start the process and then after a few hours go back to the same toilet seat, then count yourself lucky. I do. Because I don’t have to do that every day…yet. As even as I do this, I know it will get worse. As my autonomic failure never stopped, the nausea, fever due to weakness, my going into seizures, into shock, turning grey, stopping breathing, and erratic heart.

So I am very weak, but I want to live, to not just pass the time trying to look like the person who used to be here, but to live until the next version of me comes, and I want them to live too. I know that I probably didn’t write back to people because I was sick, and that makes me a poor e-friend. But I am lonely, and the me before me was lonely too; the lonely that makes your skin ache.

I don’t want to be the cold and distant me that people worry about distantly and wait and see if I have survived.

I know that I am burnt out. As the only dream I have now is someone coming up behind me with a handgun and putting it to my head and pulling the trigger. Linda and Cheryl say that pain doesn’t make a person always rational, I guess some of the version’s of me were not rational. I want a new dream.
I wish more people would sent Linda sheets for the book of who they are, because I don’t know a lot of the time when they comment or email. They say they will go away for a week. That means it will be three to four versions of me since I knew them. What dreams do we share then?

So yes, I am a prisoner of time, and when I go to bed tonight, I will write a note to go to take the D.O.D. (dump of the day) so the 40% of all time spent today will not be a waste. And someone will remind me to take pills, eat, to drink, to have oxy, to sleep, to drink, to eat, to have oxy, pills and sleep again. But I want more.

I would like e-friends, and gift swap buddies. Forget that I am dying. I am lonely and in pain. Do you understand this, have shared this at some time? Do you have time to see movies, to go out for dinner with friends, to have lunches, to spend time watching TV? Then you COULD be an e-friend, or a gift swap buddy, you just have to choose to do it. Yes, that is blunt, but what, if I am then I will have LESS people write me? I don’t think that is really possible.

I want to be your email friend. And I want to respond to every email but I am sick a lot. A LOT. And the next me doesn’t know you sent a great email that made me smile three days ago. But I do reply, as I can, to about every third email. And I am generally interesting, or I think I am. I don’t use you as my therapist, or write you every day with how wretched my life is, or how my bowels are. Because that isn’t an e-friend, that’s a diary. It doesn’t look like such a good deal maybe, but then, us maidens stuck in towers don’t always have a lot to offer. Time is my prison, and no one in history has ever broken it.

I would like some gift and letter buddies. I send postcards to people who write me letters, and postcards to them regularly. I would like to send letters but my ability to write with my hand is limited to how much pain I can take, even with postcards. The time is coming where I won’t feel bad because people make fun of my tiny handwriting but because I can’t write at all. But for now, I can write, and for those who send post to me, thank you, and I hope you get the postcards I send back, trying to do it every week. But sometimes I get very ill.

I would really like some gift buddies. It is pretty simple; we exchange gifts (and notes). I have some gift buddies now and I like finding stuff for them and sending it to them. I try to get the rarest things in the world that I think they might like. I used to think that if I liked something then everyone would like it, so I sent about 40 to 50 sets of collectable stationary out, but have only 1 person who uses it regularly to mail me and 3-5 others who have sent one note with it. So, maybe you could tell me what you like or give me a list to your wish list to tell me what you like. I have a wishlist here, and I like alternative Hello Kitty (like her holding a bloody knife, or Ninja Hello Kitty, or Anarchy Hello Kitty!), I like those little fairy figurines, but only the goth ones, like the ones who sit on skulls, they are very cool. Someone sent me a sheet of Ruby Gloom stickers which have a red haired girl sitting saying, “Happiness is a SAD song” and other great lines. I like that, and she has stationary and a dairy (I tried to find more stickers but can’t!). Gift giving doesn’t have to be expensive, as I got a set of Emily Strange stationary today for $1.00 on Amazon. It just takes looking. Often I get things on ebay, like new wooden stamps for the postcards, to keep people amused. With a gift buddy, tell me what you like and I can send or find things for you. One friend I did not know what they like but they said they liked baseball and since then, I wrote it beside their name and I get them and send them rare and obscure baseball stuff which I hopes makes them happy. I just want to make people happy, and to have a friend who ‘gets’ me and I can look forward to the day once a week or once every two weeks I get the post. I like telling people I finally found something for them. I like telling them it is coming. I think about them opening it and if they like it. Sending gifts makes me smile. Getting the right gifts makes me smile.

I like art books, but I like to buy them myself, I like manga because it makes the pain go away for a while and it can be brilliant. For example, if you can, please go buy Animal Academy for yourself and your kids. It is the easiest manga I have read as most of it is told with pictures, and if you like cats, you will LOVE it. It is good for those aged nine reading level or above and is a manga which made me happy and I made Cheryl read it right away and it made her very happy too. The main girl, Neko, is nervous about this new and sort of secretive High School (which looks like Noah’s ark) and is admitted in after meeting and befriending a girl on the train there. Well, it turns out that the academy is for animals who want to prepare to go out in human world. When they lose concentration they tend to pop into a fox with a pile of clothes around them (still talking). Neko means cat in Japanese and her friend and others assume she is just another cat girl. The best part is that the animals actually act like the animals they are, even in human form. At first, everyone comes to Neko’s room…..because it is the only door open. No one else knows how to open a door. So she helps all of them while her cat girl friend is slapping boys going, “Stinky Raccoon!” and then pouting because, “You are only supposed to pay attention to ME!” which is…well, just like a cat! It is charming, recognizable and delightful.

I like Edward Gorey, I like BL, goth things, manga, little fairy figures in corests, cool rubber stamps (like a hearse!) and postcard for the postcard project, and cool stuff from Japan like anime mousepads. I guess I like other things too but that is a start and if you tell me what you like then I can find stuff for it, and we can be gift and mail/post buddies. I want to send out stuff, I love sending gifts and I want people to be happy getting the gifts, and I want to let them know that I like the gifts they send too (I need a better system as if I don’t write down who it is, then the next me goes, “Cool” but doesn’t know who sent it!). And because I am the same in my heart, though I awake, a new person, a person who doesn’t want to die in two days, but does, I have a stack of gifts waiting to trade. Because I am lonely, and I want friends. And I know people can’t give every week but if I can get enough gift buddies then I will have stuff to send out every week and can look forward every week. Can we build a relationship even if I can’t remember how long I know you? I believe so. I feel warm when I see the name on some letters, so I can feel even if I can’t remember. I care about what people say, and I want to help, or make you smile and want to know people that feel the same about me. I want us to be 'we.' And to every person I forgot to say thank you I want to say it now: thank you, every smile is precious to me.

So I live in my tower, and I am alone. I rarely see the sun. And I am sick a lot. But before this me goes, I want to give the other me’s a chance at a better life. I would reply to every comment, to every email but I was, in two days, only awake 13 hours combined and ill those. Email me at mpshiel at hotmail.com, and let me know what you like, what makes you smile and happy and I will try to make that happen, if you want to be a friend, even if you are in a tower or island of your own.

The late post: speaking plainly

I will speak plainly.

I have post Sakura-con blues. I also have a new future I have to choose and meanwhile I am trying to write a post about that and responsibility. I ask myself how do I take personal responsibility in a system where ‘Cover your ass’ and ‘Keep your job’ is more important THAN the job (To take care me the patient, do home care, etc)? Except THIS HOUR I have a fever which is cooking my brain because I exercised and caused a system collapse including heart and a core temp spike.

I have a fan and air conditioner pointed at me, the window is open and it is cold and overcast. I have ice around my neck, chest and back. I burn. My brain burns with superheated blood.

I chose to exercise for the 10K in 9 days. I chose to wheel to the framers to get matting done for presents to send.

I am depressed, not post Sakura-con but genuinely depressed: a melancholy. Except I am not supposed, as a severely disable degenerative person to be allowed the full range of emotions of humans. Much as people with chronic conditions which require constant maintenance are not allowed full emotions. When a loss of determination, or despondency, or depression could cause death, or dramatic and permanent loss of function, I cannot be allowed to BE depressed. When over excitement and joy, when fully engaging can also cause a crash and death, I cannot, for my own good be allowed that as well. Linda has a whole story for this picture, how this girl was carrying flowers to someone, and fell, and lost that joy, that confidence of not caring what others think but now, injured, with dirty clothes, and ruined flowers.... I think she had an ideal of dreams which now is broken. I feel that.

You do not want to be me or where I am, in body or in mind. As I am sifting my life, myself, trying to find what parts of me I can afford to keep. I learned from Sara that having medical conditions you ignore doesn’t mean it ignores you. And that you DO die in the end. But you can live in between. It is only how to find that living which is difficult right now. I WANT the simple and beautiful life, I want to be this, cat girl with cat, and happy. But that is far from where I am now. I don’t know how to get there, to the part where I am happy. I can’t taste, I can’t drink, I only seem to have different levels of pain, instead of any pleasure, and yet I WANT to care about MY life.

I know this feeling, as I had it when I was abused. And I locked part of myself away, a scared child chained into the room of hell. And there it went insane for the next 20 years until it wrote and ripped itself free. Like back then I am always in pain, suffering. I am emotionally and often verbally abused daily. I try but I often feel I cannot please anyone, myself included. Caretaking is a learning curve and those closest to us hurt us the most. When Linda was hurt, and she was hurt a lot for a LONG TIME, she took it out on the one person she knew couldn’t strike back. She doesn’t do that anymore.

Yet others do. And now, in order for self preservation I need to educate people from care workers to cab drivers about my health conditions. They make a joke of it. They are uncomfortable and bigots: if you fear it, and it is a different race, keep your mouth shut. If it is a disability, make a joke, tell them how lucky they are...(to sleep so much, to sit so much, “I wish I could spend so much time in bed”).

Last night, my night worker did not bring an alarm clock, she suggested that she let the opiates wear out and my screams would wake her to give me more pills. She was serious. I told the supervisor. The woman will be sent to someone else and if you don't give her an alarm clock, you will end up screaming.

A couple years ago I never owned a skirt, much less a dress, and yet I now wear skirts because, I was told girls in wheelchairs don’t. I WOULD have sex with a guy if Linda will let me, or if she doesn't get her butt in gear. I do it, I think it because I have nothing to lose. I will die. I will die. I will die. There IS nothing to look back on, nothing to regret.

I am most of all alone. That is what they medically told me. That I am alone, that the pain I feel is mine alone, that the way my nerves die are mine alone, that even my autonomic failure is unique. I am a freak, and I am going to be ‘life shortened.’ So how do I live? Do I hang on to the old Elizabeth McClung, do I have time to take a risk on one or two new Elizabeth’s? Or must I, like when I was tortured, lock away the parts of me which are the most secret. No. Instead I will lock away the parts that are most socialized and let loose the parts most secret.

Every single thing I can understand and claim for myself is precious. If I do it myself it is precious. If I accomplish or get it with help of people it is precious. Even if I just find if; if it is a gift, or if it just arrives in the post it is precious. I don't have the luxury of a life where I can be selective of any small thing that brings pleasure.

If I can live through a manga the idea that I am in love again, or that I am out on an adventure, or just to forget the pain, it is precious. I work every day to try and support people and send gifts. I fight to do that not because people will like me, though I would like that, but rather so that I have not given in to the whisper which is now ever present. It says, “Do nothing, you have tried enough, you have worked enough, it is twice the pain it was a week ago, 10 times the pain and struggle of what it was two months ago. The more you continue the harder it will get. Just lie there, just do nothing and accept it.” I have written the post to end the postcard project at least five times. But I keep sending postcards.

I will die. I will die. I will die.

Dying is some of the most peaceful and pain free moments I have. I sometimes long for it if the day is hard; hope for the ‘zone’ in which I don’t need to breathe and don’t for minutes at a time. It is almost always green or white, always pleasant then and there. I follow a hotel hallway or a forest path, there are people waiting for me up ahead. Yes, I KNOW it is the scream of my brain deprived of oxygen, throwing up feel good drugs. I know that and yet I still seek these times. I even push away Linda and Cheryl, and try to go back, if they would but SHUT UP! I have cried and cried for being here, for them saving me. Because here hurts so bad, in more ways than simply pain.

I have to find a life that competes with that. Almost every successful female I know has some form of self-harm or ways to adapt to stress which if continued would be self harm. The only way I learned to stop self harming is to take responsibility. I realized that yes, my mother and grandmother gave me an eating disorder and my Father (capitalized for God the Father he played and gave old testament lessons of pain) taught me that pain IS learning. Oh how I was taught that perfection is attained through pain. I saw the patterns, and the triggers in myself and yet, as they did not take responsibility to help, I took personal responsibility. They might be the triggers, my boss might be the trigger, my GP might be the trigger and yet it was ME, and me alone who was responsible for the fight to NOT cut. I fought depression by running to bring up my heart rate. But sometimes I fought by just sitting still and not doing anything self destructive. I have nothing but the deepest respect for those who fight depression, who fight self harm. Sometimes, the voices are too loud, the depression gets on top of you but one day you will return and you WILL beat it.

Linda says the worst part of my disease is that I have lost all the therapy, the years of overcoming and now I live in a world that was 10-15 years ago memory and dream wise. My triggers and wounds are fresh. Is the 10K an act of defiance, an act of identity or an act of self harm? How do I separate the self and the self-harm? Is there joy without pain? Can the rose bloom without the thorns? I only hurt myself, that’s what I told myself, but in reality I hurt every person who cared about me. I would take that back if I could.

I will put up a more complex post later. Right now I have to survive. Self preservation is what I MUST do. Sometimes that means fighting myself: that desire to give in to the voices, or to the whispers.

I go into this weekend alone, isolated. And tired, so tired. I remember my last bout in epee, a direct elimination for the quarter finals. I was staggering and almost fell several times. My heart beat was well over 250, and I was in a fever like now. The ref said, “Do you want to take a medical break?” Then later he asked, “Do you want to medically withdraw?” And between the gasps, I had my sword arm resting on my knee and I said, “When I cannot...toe the line...” My head sagged for a minute and I checked to see if my foot was on the starting line, “Then,” I finished, “I will withdraw.”
I didn't quit. I won 15-4. It was a good way to end epee. But I lived on to see my running, my walking, my feeling, my taste, my world turn to one of black and white, a world where most would not want to imagine much less live, where 10 minutes without checking temperature of oxygen can result in permanent damage. And if I want to live, I have to keep going. I want to live. Can't you see the desperation looking out from the darkness?

Yet I will die. I will die. I will die.

I finished Epee, and now, the life I knew from last year is gone too. Spring is here and I need to take responsibility of my disease and my life. I need to find a way to love life, to look forward. I want to care about those who understand caring. I want to support Linda during her five week trail period at work, in which she already has a new boss, new portfolio and everything she used to use or rely on, including her furniture and assistant was stolen from her while on disability. I want to ACT, yet sometimes the best gift is to take care of myself, so that she doesn’t have to.

Is that all life is, a series of monitors, readouts, feedback, oxygen lines, pills, medicine, pain pills?

This is life on the defense: guarding, preserving. I want to go on the offensive.

Elizabeth: the year in video, a gift from Linda and Cheryl

Linda and Cheryl made me a present. I could tell because when I woke up, they were always running off chortling into the other room, all over a few weeks. Very pleased with themselves. They gave it to me this weekend, and I wanted to show it to you. I am not sure where they go SO MANY bad pictures of me but if I hear you using any as screen savers (the bad ones, the good ones help yourself), I will be heading towards your city and your computer baseball bat in hand.

It made me happy, it made me nostalgic, it made me darn confused (some of the pictures I am in, I don’t remember AT ALL), it made me wish they had let me vote for some of the pictures. But this is a picture of Elizabeth from two people who care about me, and have seen me in good times and bad. Some new readers haven’t seen many of the faces of Beth (the not so great ones), or how much weight I have lost, just in my face. Of course the dark faces, the faces of hell and pain, they are too busy doing things to take pictures. Sometime recently parts of my hands turned black in a matter of a couple minutes. My face was terror then, and calling for help. I don’t know what happened after (probably seizures or something), but there is nothing like watching your hands turn shades of black over 20 or thirty seconds. But it is in the end, I think an interesting mirror of me. An interesting mirror more of Linda and Cheryl who are there, caring for me, being there so I can be there, always watching over me: My companions.

Pain, dealing with pain and trying to stay Elizabeth (and postcards)

It has been a kind of rough few days. That’s probably not helped by the fact that I am in, a large rolling ball of pain. Admittedly it was pain from something that I chose to do, but that doesn’t make paying the cost any better (how come they never allow you installment plans in something like this?).

I am working on postcards again. Which is a bit of a joke. Because working on Postcards is how I have been keeping my identity, how I focus on who I am by what I can do; in what I can achieve. I am not what I do, but either I am just a body in pain, a person who is a list of illnesses and disorders either I AM my disease and disability or I am Elizabeth McClung. And so during the day, and the week, I can be Elizabeth McClung, except when people see the wheelchair. But last night, like every night, I cry. It is mostly because of the pain. I can’t cry normally anymore because I don’t have the diaphragm or throat muscles which can't talk lying down, so I can’t sob, I just have tears running down. I cry because the pain of my spine and my back and shoulder lying with the weight of my body hurts to the point where sometimes I pass out or go into a seizure just from that pain once I am put into bed. So that’s the part of the day when I am not Elizabeth I am pain and symptoms and disease.

This weekend brought the four week total to 131 postcards, which is I think a record for me, I couldn’t say because until the recent spreadsheet I haven’t been keeping track and there are still holes in that like my mid-week posting of postcards.

These are some of the cards from last week. Here are some of the cards of Nature, we go through these a lot because children of a certain age or younger like baby animals and we have a significant number each week we send out to kids. But we send to all ages, we send some every week to seniors too, and all the ages in between. I wish we had some people in Central or South America who requested cards, or some more people in Asia or India. Last week there were 14 new people requesting postcards, this week already a handful, usually 7-10 people a week, now. I do the new people first.

Here are some of the postcards of girls already posted. You may recognize some of them. I don’t get them in bulk lots or even in small lots but once I see a card I like, I try to get it again.

This week I tried to do a theme of couples, and yes, a group of HETEROSEXUAL couples too (hey, even sexual minorities deserve representation. What? You mean they are the MAJORITY? Okay, that’s pretty weird – girls with girls is better, take it from me!)

And here are some of the boys we sent out this week, ahhhhh, aren’t they cute! Well, at least, um, smooth – one thing I LIKE about Japanese anime pictures – no hairy guys! Woo hoo – if only the world were so well run. All I can say is that with summer ending the reign of terror of the hairy men who love to take off their shirts is over (I think there is a syndrome: the MORE body hair, the greater the likelihood of taking off your shirt in summer near me and traumatizing me!)

And of course the week wouldn’t be complete without a nice goth loli card (although this is sort of goth loli goes a wee creepy, like “Daddy!” creepy).

I will try to show a couple back of some cards in a future post. But I hope this has been nice for you, I know it isn’t deep. It is about me keeping it together. I have to go on. I have to get out of bed. I want to write a blog. When all you have is pain, and frustration, and discrimination, I write about the nice cards and what I hope they do – which is bring a smile from those who get them. And a thank you to those who send some to me. I haven’t been able to sleep well in a while because the pain is so bad. I don’t after all the promises, yet have an appointment with a pain specialist. Lyrica helps, it helps me to function to an extent during the day. The tramadol is barely working. So I could stay in bed, except I vowed to go outside four days during the week, no matter how bad it hurts. Fighting FOR something keeps me alive, it keeps my systems going. No, I don’t think lots of happy thoughts. But I keep going. It is not because I am inhuman and don’t feel pain or there is not ‘give up’ in me. I would LOVE to give up. But if I do, will I get back what I lose? I lose function somewhere in my body every week. I lose feeling or use of something every couple of days. I have so much loss, so often I don’t know how to grieve. Maybe next time I will talk about how much brain damage I have, and how fast and how extensive it is; and how I am trying to cope with it – I can’t beat it, or force it, but I can’t stay in bed either.

I don’t want to die, but I am getting very tired of trying so hard, of doing so many of the ‘right things’ and yet, for what? More pain. More seizures? More brain damage.

So off to do postcards, where I can look up emails and get an idea of what might make a person happy. Because I know the intense desperation of the weight of life, and how there are no pleasant surprises. Well, except for a postcard, if you only ask.