Care taking the dying isn't dying. Nightmares and wishes: needing help

I would like your help. In truth, I need your help, in very specific ways, and one of those ways might be your going for a nice meal, or just going out, if you can’t eat. I need you because I am too weak now on my own. I realize that. I can’t survive on my own, much less do more, and I want to do more. Help me please. (Help is not a dirty four letter word)

I went to the video store today (big trip!), not exactly when I wanted, but when my disease allowed me to, having woken me up bloated with bowel troubles though I spent yesterday preparing, with most of my energy, to leave as soon as I got up. But the disease is a mountain, and you don’t go through the mountain just because you want to. On the way back was a corner preacher who had ‘signs of Satan and the End’ of which one was ‘Lightning’. I like lighting. I told him, “Lightning is good.” He said, twice without stopping in this sort of joyful singsong, “All you need to know is that God will raise the dead, God will raise the dead and 5 Billion of us will be ground up for fertilizer in concentration camps, God will raise the dead…..” I told Linda that maybe his emphasis was wrong because if I thought 5 billion people were going to be ground up, I would have a bit more emotion and less joy in my voice. Also, it really did sound like God was raising some sort of zombie army which would round up, put the living in camps before mulching them. Is that REALLY what the person meant? Linda advised against going back. Surreal. Linda was there, to push, to help. She was there to stop me using the rest of my energy on questioning the Zombie army of God and the evil of Lightning. She is the kind of help I need.

Despite what they want to tell you, all people will have medical issues, no matter how many blueberries, or green leafy foods you eat. So when YOU get into the medical whirlwind of testing, treatment and ‘it is probably all in your head’, I letting you know that people get nightmares, lots of them. I did, as did those I know. Those nightmares are probably pushed on by fear of that which can’t be spoken, the pain you live with and that medicinal treatment IS a type of abuse – orders, demands, pain and blame. Plus there is the fear of yet another odd and painful test (“We need to put needle rods into all your bones and then zap you with electricity”). I never had the Zombie army of God nightmare, but I had lots, and they do end. But the truth is, it is better for you if they don’t. You will likely have nightmares if you get treatment because…what if it goes wrong, what if it doesn’t work right after a while and you have to do it all over again, or what if it is out of your control (it is) and you get worse?

I theorize that faced with horror, nightmares are our brains way of preparing us to deal with what we have already accepted in our hearts, or fear in our soul, has to be done.

When they say you have a terminal disease, the nightmares don’t end. But when they have done enough tests and the days you have, the nights you have survived rival anything you have seen on a horror film. Then the nightmares end. When you have a significance chance of amputation, and have to do things every day to make sure that doesn’t happen; or when you have had infections where you drained the pea-soup puss out of them, or hoped the area of skin gone stopped bleeding or didn’t spread, then what is horror in a movie where a person must amputate a foot to save a life (Saw)? None. It isn’t a nightmare, it isn’t a horror film, it’s Tuesday.

Night before last I had a dream that I was pulling bright blue connected and hardened mucus from my lungs, which was literally ripping the tissue and choking me into inability to breathe. As I got one out, another thread in my mouth I would feel and pull on and out came another unbelievably large and expanding blue choking mass from deep in my lungs. This was not a nightmare. This was a fairly pleasant dream. I thought it was real, until hours after waking up I realized that no mucus I have every pulled or coughed out of my lungs was blue, so I asked Linda if I rolled onto my face instead – my heart was very, very, very erratic yesterday and perhaps it just stopped beating for long periods of time (the heart pain woke me up yesterday). See, no nightmare.

So the comfort to take from it is this: you have nightmares because you want to survive, and you are preparing to survive. Take faith in your own capacity to hold on.

For me, long past the nightmares, it is the isolation which sinks me, like falling through icy glacial lakewater, to watch those above, so far away. Or like looking out a cabin door and seeing and knowing the great expanse, without humanity, before contact. We are a culture where babies are collectively rejoiced, and adored, children are treasures, and then sick, elderly or dying are annoyances or negative impacts on the lives of the non-dying. I read again and again about adult and busy children with senior parents and how hard it was for them (the adult children) to ‘go through’ a mothers’ cancer, a fathers’ dementia, the illnesses and death of a parent, or loved one. That is a lie.

I wrote about being sexually abused. Linda lived through comforting me from the nightmares I had for years during counseling, and yet she doesn’t know or really understand the experience or the thinking, the reactions etched into the body and mind from being sexually abused. The same is true of A.A.N., my auto-immune disaster to the brain, and neurological neuropathy disease, she lives with it daily, but doesn’t know it to live it, only what it takes to care for it, and the pain and changes she sees. In that same way watching Philadelphia Story doesn’t gives anyone the experience of dying of, or the sacrifices of taking care of a person living WITH and dying of HIV/AIDS. It is an Opera and TV fallacy…that talking about it is knowing it. But you don’t. A parent or loved one dying isn’t you. We have cancer, WE have dementia, WE have Parkinson’s, WE have MSA, WE have the pain, the cramps, the nausea, the loss of muscle control, bladder control, bowel problems, the lying in bed in pain, unable to be turned. US. Just because we are too tired, or it takes days to make ourselves understood, plus no one is interested in narrating for those who die, so our experience of consciousness while dying is omited. Replaced instead by those with 1,000 times the energy we have towards the end, who stand up in the stead. Even the woman who had a partial stroke, wrote a book and talks about having it skips, except for a mention and a few pages, the 500 plus days of confusion, frustration, and other aspects of rehab.

Care taking is an experience, loss is an experience, those may be your experience, but loss isn’t the same as dying.
But dying without the caring which creates loss, the care taking which is love and sacrifice in action, is a harsh and lonely place. I am asking not just for understanding but for friendship which is action. That friendship which reaches out, which uplifts, which lets me know that there is more outside than the two posters on the soundproofing boarding and the rat-tat-tat of rain hitting. A friendship which ultimately may not have a quid pro quo, though I try, I may not be able to engage or gift back, or email back to the same level, certainly when my hand speed is 1/10th of yours, and the strength to lift my forearms only lasts for the first few hours of the day (and when seizures wiping memory eliminate the best of plans and intentions, leaving only the gnawing that I was going to send something to someone).

I started the postcard project for change. If you go back and look because people on the BBC and in the disability community said that people, that the AB people needed to change: the world needed to ‘get us’, understand our needs/limitations. I decided that they were right, we needed a BETTER world, a different society and viewpoint than we live in. But I wasn’t going to wait for it, that I, Elizabeth McClung, fuck whether I was disabled or not, would make a change as I could. And one thing people who are disabled need to feel, particularly in some isolating and degenerating illnesses, is not being alone. A postcard for those who are ill, who are disabled, who have impairments of all kinds, and for those who will one day be in the above groupings.

For me it has been three stages. Once I found out that a) I was going to die quickly (diagnosis A) or Diagnosis B) I was going to die quicker, and in ‘horrible ways’. I thought I understood that. HA! The truth is I was sick, like having a bad flu sick but I had 1/10th the energy of before (so about 1/3rd the energy of everyone else). And while I ‘intellectually’ got it, I didn’t get it in my heart. Not in every shadow of my being. It was indeed a very fast learning experience, and I like to learn (the discrimination and being talked down to was total crap but learning changed me, and I appreciated that). Until something changed that couldn’t be changed back. See, it is one thing to HAVE one side with bad circulation and so the ‘red side’ and the ‘white side’ and one side getting weaker all the time because, well, something will come along, something will reverse that, you know, some treatment or something. And sure, when the pain is high or depression comes, there is ‘Why me’ but I can come out of this ‘okay’. Until your eardrum blows, until you have a stroke that bleeds into your brain, until your heart is damaged, until your brain is permanently damaged, until you live through the death of millions of your nerves: so many the spine had to enlarge the channel to try and keep up with all the pain signals. Dropping stuff on my foot was funny, being unable to taste food on my tongue…not funny (the back of my throat still has taste buds, and my nose does too). Having a wound that doesn’t heal for over a year is disturbing….having a medical condition like progressive anemia that goes untreated for over two years, something I thought was ‘important’, you know, having those red blood cells to carry oxygen not replicate, not carry blood, have less and less as no one acts except to stop talking to your face and start talking out the window, or at their shoes…that was less funny.

Then came the honest to goodness, “I could die” moments, or “You did die very briefly” moments, which while realizing that as long as I still come back that is fine, right? Except after a few, the statistics start to click over in my head. And doctors say odd sentences, like regarding the upping doses of painkillers, and when I say, “But you told me that would damage my liver.” They say, “It will last long enough.” So it is intellectually getting through more and more that yeah, dying. And then, I had 1/25th the energy I used to have. I set lines in the sand I would follow, but they fell, they all fell. From: “I will go out twice a week on my own”, “I will shower three times a week”, “I will get dressed and wear make-up every day.” – goes to “I will go out one a week”, “I will get dressed three days a week in non-PJ’s” and then it goes to where a shower means that you are done for the day. And I am not able to put my socks on, not able to put my bra on, not able to put clothes on. And somehow, at some point, so much of what I wanted in life, the extra, the good stuff becomes about keeping to doing those lists every day (list to follow when I am too confused, so I do it anyway), the lists that keep me alive. I fight for that every day. The lists that allow me to shit, and eat and sleep. And then, when a timeline is drawn out, maybe a year, maybe 6 months, it seems like every decisions is made by death, by what can be done before….., well, no one likes to say it, but you have to start saying it. Before I die. “I need to let Linda know about the books before I die.”, “I need to watch that series before I die.”

Then it just becomes about staying alive, because death is like a cloud around you, step on a crack, and you break your own life line, get a cold, get in hospital, lie down too long, forget to drink too long, fall over too hard, anything that tip the balance. And of course, the pain. That’s the hardest part, like wading through snow up to your chest, pushing forward against that hard wind and rain which is always there. And this is when people slowly pull away. Well now I am 200 times weaker, and I scream not daily, but moan hourly from pain, a grim contest of wills, of planning, of determination, that is when I have to reach out over and over again, only to find silence. When a sock weighs 45lbs to me, and typing hurts so bad I cry. But I still send out up to 16 emails a day (that takes 9 hours, like it took me three days to type this). Just grim determination not to give up, and determination to keep trying to have relationships, to BE here, so people can understand. I think often people can’t. I wish they could, To accommodate even the memory problems I have are difficult, to care take for me even 4 hours is extremely difficult but to live it...it is like being flayed and put in a bath of hydrogen peroxide and then being flayed again.

So, yeah, I can’t escape my dying because it is shoved in my face, in ways I will talk about next time. But I have a dream and a determination too – that the disease may have swallowed most of me, that 80% of me is in the beast, but survival just to survival when I know that in the end I will not survive isn’t living. Laughing is living. Joy is living. Something MORE is living. And I am making a DIFFERENT list, one of the things I am going to do, not to survive, but because I want to. Manga that I need, not just to have pain control, but because I WANT to read it, I want to smile. Things I want to do WITH YOU. For example, I want us, all of those with different impairments, illnesses or not, to plan and GO OUT for…..dinner, café, starbucks. I want to go out to dinner with all of you, and have us share it here. I will talk about the when and where, and the other things on my list next time. But you get the idea, yes? I am searching for fun.

I will say goodbye soonish (4-50+ weeks). And I don’t think I will change society much. I would rather spend time with friends, spend time living to find those moments of smiling. I started giving gifts and sending postcards, trying to change the world before the recession, and then friends died, and some decided deliberately that they couldn’t take it, couldn’t stand the pain of caring anymore. So they left. I state this: the more we as a society reward or accept those who run from what they fear (the ‘I’ll pray for you’ and out the door, the ‘It just hurts to much to see you like this’ and gone) the more it will continue. And those who ran WILL find out also when the great exodus occurs in their life once the whiff of illness comes from THEM. So making them feeling good about leaving because they feel bad...second hand, does them no favors.

That why, for those who stay, another part of the ‘fun’ list are the gifts, the boxes and boxes I have of gifts which I want to give out, NOW (while it is possible). But they are mostly unique, imported from Japan, Asia, the UK, Europe, and Australia. And I don’t want to give the wrong thing. And I don’t want to be like my grandmother, where for the last five years, her house had tape on the back of everything and siblings went around erasing others name and putting their own. And I am fragile and weak. So Readers and Lurkers, it is time to de-lurk. I want to know you, I want to know you are searching for fun and joy and I will try to aid that. But I can’t send you a wall hanging, a framed art picture, goth fun, a limited edition set of yaoi postcards, a yuri/lesbian towel unless I know you might like it. Unless you want to write, I don’t know to sent a stationery set (I try to send all who write me letters a stationery set – HINT!). How do I know who to give manga to read, and which, or DVD’s to give to watch if I don’t know who you are and what you like? And more importantly if I don’t know that you want to have deliberate laughter and joy too.

There is a sort of plan, which I will explain more with the next post, along with the grim aspects of dying, survival and MORE than that. But it goes like this, gifts are things to make people happy (I don’t like or believe the ‘obligation’ thing), and for everyone who has given me gifts, I try to give back, to show my appreciation, to show as I can, what it meant to me. Sometimes, that is the extra two hours to make another, special postcard to say thank you. I try to give postcards to all who send post (HINT!).

Sadly, a well meant gift can instead remind me of what I have lost: hair, function, the alteration of face and body, not going outside, not being able to….(fill in the blank). I assume people don’t give gifts to make me (or others) sad. So I have changed the wishlist, and will continue to do so. I have on there the things I need to survive. I have on there the things Linda needs to survive, and I have on there things that I need for pain control, for bed days but also things I want to look forward to. Isn’t that the point of wishes? To work for them to come true? So, starting now, for each person who gifts from the wish list, or who gifts a gift certificate from Amazon.co.uk or Amazon.com (to: mpshiel@hotmail.com) I want to work toward giving a gift package. So please a) let them put your name on the, so Linda and Cheryl can put it on a yellow stick it note and put it on the manga, DVD, medicine and b) email or write to let me know what your like, what you do, your hobbies, your interests, do you like queer stationery, yaoi stationery, yuri stationery, goth stationery, what books you like, what amuses you, (and if you have children or young relations that you like to spoil – as I have lots of kids stuff – and YES, Hello Kitty stuff)? That was I can try to match what I have to what would give you joy. A joy exchange.You are giving me something special or helping me work toward something which brings laughter instead of nightmares….I really want to do the same.

I hope that makes sense. I know that many people have been kind over the years. I hope you understood I tried to show my appreciation. For the packages, with my current limitations, my brain issues and my weakness, two hours a week with a careworker is a day’s energy, and I want to be able to sort items to match with names. Building relationships and joy within the limits I havethat means I need the names, if you are on the postcard project, the name is all I need (unless you have moved) and the interest to laugh, to joy. For example, I try now to spend 4 hours letter writing a week (that is half a day), which makes two letters. So another list I am working through (a slow return in writing people who write me, but I am trying to create better than just surviving).

The nightmares are over, and so soon will life, but now we have a time, and I want to make as much of it a place where good dreams happen.

When the Man Comes Around: "At least I went out fighting…"

My mistake was in thinking that a cold or flu now would look like something I recognized. Or that the three deaths for autonomic deaths: pneumonia, heart attack and suffocation, were something that happened separately. Now I know better. And what it feels like when 'The Man Comes Around'.
I learned, barely, what chemo and other survivors already know. That when the nausea is so bad, and so long I couldn’t remember a time before it, and the aching, the pain, the weakness that the easiest thing to say, the greatest temptation is to say "No." Because there is always some new horrific and painful thing that ‘should’ be done, or ‘needs’ to be done to increase survival chances, but at night, with them changing the cloths, and a fever of 104.8 while my entire body is covered with goosebumps and shivering, that’s all it is…..a chance. For about 36 hours, or 42 hours the question of would I die or not was THE question. I was terrified, Linda was terrified and there was no hospital or team or drug or anything that would save me, I either woke up a little better or I woke up with my lungs full of liquid or I didn’t wake up at all.

"Oh I’ve had a cold/flu/bronchitis/pneumonia" people will think, but that’s from a perspective of having an immune system that works. From having reserves. "It’s not the same." Linda said, "They won’t know what it was like." Maybe, but I’ll try.

I got home and the first symptom was a slight sore throat I guess on Tuesday, the days get mixed up a bit, a little because it goes in the ‘illness blur’. I’ve worked retail and I’ve worked big venues and one year at a multiplex I got 14 colds, I have always been susceptible to infection and with all the years in retail have had over 100 colds/flues and a couple cases of bronchitis. What happens is I get a tickle, it turns into a sore throat, the throat gets worse as I sleep instead of better, I nurse it along for a few days and I ache and just as I start to feel better, whammo, head the weight of a bowling ball, as the sinus’ are filled with mucus to come out. It takes me 10 days on average.

I had a tickle and thought ‘sore throat.’ But in five hours, my whole throat was raw all the way down to the bronchial opening and the pain was….extreme, and I was unable to talk, my vocal cords were simply non-operational, even to whisper. And by the morning, my upper respiratory tubes had inflamed, mucus of congealed dead cells was coughing up or blocking breathing, my large and small bronchial tubes and lungs down to the sternum were all inflamed and swelling shut and I was on the full oxygen mask. That was the first 12 hours or so. Purple fingers, waves of weakness literally knocking me unconscious, needing to swallow something, but unable to eat, and lying there, without the strength to keep my arm from sliding off the bed. That all in the time I normally go, "I might be coming down with something." And if it is moving quickly go, "Oh dear…I might be getting a cold."

My heart beat had gone up to 120, and stayed there, awake or asleep. I had no idea how to bring it down since beta blocker didn’t work, and my pain pills would lower my respiration even lower, so feel the full lash of the storm, or hope that in the next 12 hours, my lungs get better?

When my kidney wasn’t just hurting but bulging through the skin of my back I knew it then. I had dropped extra weight, and could outline the organ, tried not to lie on it, so painful to touch. I knew that this is what it was going to look like, this time or the next, or the one after. That even if they gave me medication it would need time to work and in five to 10 hours either I would be down to one lung with the other filled with fluid and mucus or not. Multiple organ dysfunction, lungs, heart still racing at 120, so long I would have died from that if I had not exercised so regularly, liver, kidney back-up, in shock and infections running rampant over my body, pus and blood coming out.

There were those minutes or long seconds with Linda beside me on the floor as I shook in seizure after seizure, or holding my arm when I couldn’t speak but only lie there. These were the ‘I love you’s’ The goodbyes because we both knew that this was what is was. I tried to say it, and because my voice was so mangled, she couldn’t understand. So I whispered it, "At least I went out fighting…" Yeah, she told me, now sleep, sleep.

This is the way I will die unless I am lucky. And I realized and she realized that the amount of stages between my ‘building reserves’ for Sakura-Con and now might have been 60 a year ago but were more like 10 or 12 now. There just wasn’t that much left to slide, until I would hang on a thread, waiting for the slightest thing to knock me over. And then my lungs WOULD fill with fluid, or I wouldn’t convert enough oxygen, or as I did, I would stop breathing. I was weak, I was helpless, you were there. I would not have lived this week if it were not for Linda. Thank you.

I did, I do live, struggle on. Realizing that in the worst pain, the worst situation, I only have to say ‘no’ and not do those horrid thing (I was sick for a week, I still had to take dumps, all the icky bits of degenerative disabilities), I would die. Not that minute, but soon. I decided from the engorgement that the toxins were not leaving my body and the medicine I was taking was only hurting my liver more (since it required my liver to break it down). So I drank water and peed, and drank and peed and drank and peed. About once every 90 minutes. I drank gallons. Through the night, Linda helping me, too weak on my own to pee, waking from nightmares to pee. And slowly, I got to a day when I could have a shower with assistance, and this was ‘better’. People always tell me when I have a heart going like a woodpecker, and part of my face sliding that I 'look great'. I look great because a) I don't sweat and b) Any time I recover I work out to build up reserves. Or is that just something people always say?

While I was out of it, a couple times this week, people in positions of authority had singled me out for discrimination and dropped the phone message bomb. Singled me because I WAS weak, and because I could not fight back. They threaten my health and where I can live for the months I have left. But I will go into that later. It did make me sad, to live in a land where the heads or managers of two organizations can illegally pick on me, sure that no one will stand up against them: because we don’t. Socially we let the bullies run rampant and think to ourselves, ‘That’s a shame."

I say that because a) it is true and b) I really do have so little left to lose, I am helpless, barely able to type, often to sit up and yet, people still think I am a threat because I do say that picking on someone because they are in a wheelchair is the act of a bigot and a coward. (Next post Beth, next time! Focus!).

I started some interesting manga series from Sakura-con. When lucid that is pretty much all there is, unless the noise of construction makes you all tingly. Queens is fun, as is Pearl Pink both saucy and light and leaving me wanting to know what happens next (good writing/drawing, I think), and I recommend Bunny Drop strongly! I put those and the books and supplies Linda needs on the wishlist. Thanks to those who sent a DVD. I got well enough to watch something today with Linda. Quality or not, this is the time we have.
Oh, I will get stronger, though I expect the next while will be hard. Plus all sorts of cracks and sores have opened up as well as flesh diseases running rampant (it seems without ANY defense, they really go crazy). I did some hacking away of toenails and digging out dead flesh and opening wounds for hydrogen-peroxide (yeah, did make the room spin, but it is one of those things that gets done, or drains my body using up cells, and resources).

Now, with two cycles of memory being only sickness, I have lost all the knowledge and rituals I passed on to myself every day, every couple days. I know only how to get my email and do this. Linda says she will help me with more, learn more, from the ruins. The month is Eagle. At least on the calendar here. Linda is reading the Pop children’s books to me, she reads the S.A.S.S. books for herself off the wishlist. The Stories of Ibis, another of Viz’s signature translation are the stories of a winged android to a minority of humans in an android filled world, seven tales creating a history of here to there. Which is like the light novel Keili (a girl in a post apocalyptic world who sees zombies…with pictures! Cool) – also on the list along with Volume 1 of this Beautiful and Ugly World (I got volume 2 at the con but they didn’t have volume 1, suck! Each week, I use what money I can to get a manga so the next week, my time in bed, in the bathroom has something to look forward to - the library books are running out.

I matched some postcards before I got too weak. Some presents went out, not as many as I hoped. But I try to reply to each postcard and mail that comes in and then more. I want people to know that every kindness is important. I don’t understand life up there, where what is on TV or going out for ….dinner, movie, a game – going out at all is possible. That isn’t my life. I know I live at the bottom of a well, a nice well, but still, not your life, and so I understand the kindness of slowing down to try and understand my life. Sakura-Con created some great memories for Linda and Cheryl. Sakura-Con, for me, the memories are already gone (remember that no mid-term memory thing). But I have pictures and notes, but no, bummer, the memories did not help during the illness, nor help still. Which is why things like Fear Itself: First Season are on the wish list – 45-55 minute movies from the masters. This weeks’ money went to pay for something. I wish I knew what. Thanks to the person who gave me UK amazon gift certificates, I got Being Human Series 2 (here in 2 weeks).

I lie here, I suck oxygen, I feel like throwing up because my heart beats too fast and the medicine stopped working, I feel funny and pass out because my lungs stop working. I am getting better. Slowly. Linda didn’t say she was terrified. She hates to say that. Hates to say that there is nothing she can do and she is frightened. I want to protect her, and I can’t even protect myself. This time the dice came up "live." I'm glad.

A bad Fall: damage severe

Bad news and um, bad news. I am supposed to be in bed due to a bad fall lateral from my wheelchair yesterdaywhich gave me: a concussion, whiplash, a something rotator something in the shoulder, partial dislocation, torqued back, sprained wrist, ripped muscles on four ribs and between the ribs and slight sprained elbow. I kinda went sideways and smashed my head so hard that all I saw was this red flash (it as very odd, if I had seen ‘POW’ inside I would have thought it was a cartoon) at this point my shoulder slammed down, then other parts, most not arriving atop my head. But as my head was twisted (kinda like an owl!) and I couldn’t move, it turned out later to be very, very painful. Which is why one handed typing is slow and this blog post is short (9 hours later....).

HOWEVER…..the comments were so good on the last post, and I really appreciate the people who made them, I have responded to every person, so if you have any other observations/questions/things to share after those responses, that would be cool. I want to do a blog post on chromosome 17B-3-HSB and what a Canadian doctor in Palestine is doing (which isn’t really that nice!). But that is after lust, desire and tea. Gotta take time for tea! Nice hardcover book she is reading too.

Okay, finished ALL the comments on the previous post, on Intersex, please let me know, keep the dialogue going. Text me, write a comment?
I am high and low on pain killers because so sore and don’t want to lie down until this is done! So on to the important question: In school, where you the one who wrote on others with your markers? Wrote on yourself and were sent home having coloured your fingers multi-colours? Or the one who was written upon? What I found out is that in this picture, Linda went, “That’s me.” And I thought, “The crazy girl writing on people, I NEVER knew.” And she continued, “My friend F. used to write on me all the time.” - ahhh, she was the passive one written upon! For me, I was the wild one, but I couldn’t by nature and ethics force myself on others so I wrote on myself. Indeed, in high school one of the assignments I gave was to write a poem ON your body and see how the poem you write changes when the medium you write on changes from paper to your body. Great idea, and a great way for a student teacher to end up with the educational supervisor going, “You told them to do WHAT? No, you tell them to read 20 pages of Lord of the Flies and answer 10 questions, no writing on the body, non of this ‘poetry boxing matches’ you have….we can hear the screams and cheering all the way into the office! Just follow the syllabus!”

Oh, how to explain that 15 year old girl taking off her top in my class while popping gum going, "I call this: Cleavage"....uh....distract...."Would you like a cup of tea, Supervisor?"
Tomorrow Linda has promised to help me bath, oh boy, rub a dub dub – is there room for two of us on the tub bench? We shall see! Linda keeps wanting to put me to bed. Which would be great if we went in together but she wants me to be in bed just because my hands are so purple you wouldn’t believe or I am ill or I still have the whiplash and I pass out a lot (is 25 times a lot? I think it needs to be like 30 to count as a ‘a lot’ right?). Basically my plan of ‘Do what I want while Linda isn’t looking and then go, ‘oops was I not supposed to do that?’ isn’t working because during my cute, ‘oops was I not….’ I end up stop breating and faceplant (messes up the hair too!). I did however get some things to send to people sorted that I have been meaning to sort for weeks – yeah! Loss of time and faceplants – boo!

If you give a damn about this blog or about me, and oddly, I think of my readers as my friends, and that I have dozens of correspondences I enjoy. So the truth is, for a while now, we are just trying to get to the end of each week. And this week, the preparation to make the final move into hospital was made, and it was Linda’s FIRST choice. She HOPED I would not regain consciousness so she could transport me to hospital, even though there is little they can do there. That is how bad it is. I am not ill, I am not dying, I am visibly declining in health at a rate which would be weeks or months in days. We talk of Sakura-con, and we talk of where exactly to scatter ashes.

I am beyond the rim of the cliff. Okay. I fell. I didn't die, but I didn't get better either. I fell down and I am on a little ledge and I hope damn it that I can get back up and climb back up, but without significant rest, like week to weeks of bed rest, that is simply impossible. And yet, with the gravel and movers, I can't rest in bed. I have had a fever for a month straight because my autonomic system is failing. I cannot sleep to rest, or even lay there. No laptop, no TV. No use of one arm.

To give a SINGLE yet graphic example of what is needed so many times a week, those 'difficulties' with my intestines means that I am in a small room, with no air conditioning, and little to no natural lubrication after daily preparation, three times a week for about FOUR HOURS. I do that so when I leave, I do not have jaundice or toxins building in my system, though sometimes, I do, and the puss comes out my eyes. When I leave, I am exhausted and I have the physical after-effects of being forcible violated.

Yeah, that’s right, raped. I am being raped every week by this disease, LITERALLY. I bleed from my intestines, from my anus. That needs to heal, only it has little time before the next time. That is one of dozens of things I have to do in order to stay alive. Most weeks I bleed from my anus, from my nose, from my mouth, and last week from my ear, and puss from my eyes. I drink 2 liters a day of water, every day, to get out the toxins. I have been drinking gatorade for years and I hate it. I hate it and I drink it. Only lately, I have been too sick to eat. To weak to drink. Because I no longer have my ability to externally do what I need to survive, my body literally withers. You would not recognize one of my hands as a human hand anymore. It bleeds inside regularly. This isn't a metaphor, this is life. This is my life.

If you care, you should know because I am telling you now, I have no interest in being told to ‘go into that good night’ or ‘fly away’ but I want to go to Sakura-con, I want to see the cherry blossoms.
So, Help! HELP! Can anyone hear? Do you know what I do when for four hours I am having bits of my flesh in my colon ripped away so that I can live? When I am not screaming, or moaning, I try to read something to look forward to, I read manga. Manga is medicine. DVD’s are medicine. CHOICE is medicine. When I spend all my time, for as long as I can remember (the mid term memory problem, right?), just trying to survive, with nothing to look forward to because I stayed up and read all the new books/manga in order to stop bowel impacting and now I lay in bed and wonder how much blood is pooling around my anus. Is it staining the bed? And what I have to look forward to tomorrow? To having to do THIS. AGAIN.

That is why a $5, a $10 gift certificate matters, at Akadot, at Amazon, at Amazon.co.uk. Because then I have now what I did not have before. CHOICE. I can send a gift. I can get Linda a romance. I can get something for myself. I need a DVD player for the bathroom for when I cannot read, and for the times when the noise is so loud outside I cannot do anything. Linda found one for $50, and it is on the wish list. Will it make me happy? I think you misunderstand, it may make me LIVE longer, make it so that I LIVE the 28 days until a new neurologist appointment. LIVE until a new GP appointment. LIVE. Or if you want you can donate $50, and my first of 8 small bowls of pills costs $16, my second costs $8, my third costs $17 – three bowls of pills: some for my immune system, some for the free T4, and the rest is pain, pain, pain medication. And it helps. Kinda of like when you ask a new parent how they are sleeping and they look at you with the thousand yard stare and say, “You know, now and then.” Yeah, I get pain relief….now and then.

Never you mind, just keep thinking of me as the postcard project and as the indomitable Elizabeth with squirrels. Because you haven’t bothered to adjust your view of me with the disease. You don’t realize the level confusion, fear, pain that I live in every day. And that Linda and I work to get to the end of each week with me alive. That is why I haven’t returned your email. Yes, brilliant brain, but also a terrified child, becasue I am also someone whose only memory is pain as if someone had ripped the skin from my back with a whip of chain mail. If a friend, will you love ME as a friend, the ME here? No, not the me who started this blog, but the me who is here now, struggling, still fighting every day, but someone who is, in many, many ways, in need of understanding, and of soothing calm voices.

To say, I understand, no, to understand is to know I forget every few days, to know that everything you send gets a post it note, and so you leave messages of love for me. That is just one type of understanding. I might forget ever few days but still, to live, I have to go and do a dozen terrible things a day, every day, on and on for....ever. So for the child me, a little something more often makes the difference because that Beth made it this week (thank you W., you helped, all those weeks, you really, really helped). She is alive, and it seems that there is a ‘yes, yes, but show us, give us the posts, be there’ – I am here, because I have fought hell, and you want me to go back and fight hell again…..without a single thing to look forward to. This week I spoke to two people. This week I looked outside three times. This week I damaged almost every part of my left side and I have a cut on my face on the right. There are NO reserves. I am fighting to be here another year by being here another week. Now I am fighting another hour and day to be here another half week…that’s it.

Why the hell should I? I don’t know, I don’t know, I go crazy trying to tell people, “I care, I care” and having bits of love, tangible bits of love. No, no, not the gifts. I have sent out, in the last month, about 25-40 manga as gifts, so say Cheryl and Linda. I have received in the last month…..four? In the month before I sent out 18-24 manga as gifts, I received……(according to Cheryl and Linda)..none or one.

I know in my head that people care, I know that people send gift cards sometimes, and that is good. It makes it so I have something to look forward to, so that room isn’t just the room of despair.

I AM thankful for every bit of choice that allows me to claw an inch forward. That helps me wake up and do what needs to be done that day, because I have to look forward to deciding what CAN be done, as I have a choice, a gift certificate perhaps. Except I am too ill to be able to get out of bed for two days. I know every inch of that wall. When I sleep, when I am half awake I think that my hospital bed has chains across my legs, that it is like a walled crib, holding me down for the disease to eat another piece of me.

I want to read a romantic series that gets me aroused. Don’t you? Make me blush, find me some gentle sweet uke to grow from innocence. I read Butterfly, Flower A story where the daughter of a noble time honored family who has run into ruin is asked at her very first job interview (as she was trained to be a princess of sort), for an office job: “Are you still a virgin?” She is mortified, answers yes, gets the job and asks a co-worker, what was with that 'virgin' question. This produces a big laugh, as no one else got that questions and second, 'Who is a virgin these days?'

Her male boss, after he is so mean to her, she remembers is her male bodyguard/nanny, sworn to her. At work his is the manager from hell trying make her a perfect elite office manager, but one minutes out of work, and he won’t let her ride the train, but drives her home, calls her, ‘My lady,…” because she will always be of the noble line, and the young girl he promised to protect. Problem is, she falls for him. He doesn’t get it. She kisses him. He says he ‘understands.’ Whew, he isn’t as dense as she wondered. He continues, “you will one day meet someone suitable for you and need to practice your kissing on me, I am always here as your servant, my lady.” AHHHHHHH! What will it take for him to get a clue?

Ooku volumes 1 and 2 – put out in the deluxe edition, winner of the Eisner award is an Edo period love story. Japan has a plague which kills 75% of the men. Poor Samurai family sell their son’s seed to survive, prostituting their children. One man only has sex with poor women, women too poor for his ‘noble’ seed. In a world without honor, he decides to enter the service of the Ooku, which is 3000 males only, except for the female Shogun. There are two books so far, each book is a complete story, and together they are a complete story. Together they tell a story that inspires me to go on. It tells me that sometimes greatness is not having a title, or being famous, but in being there, simply being there for someone who is wounded in the soul. Like chicks huddling together, I can identify, knowing only the hands and hearts that show love, my memory is in who I shrink from, and who I lean against. It is a yaoi romance, it is a straight romance, it is a romance for all time. It is about the after-affects of rape, and the pain and suffering that come from it, as well as the cost of keeping ethics in a place where all people care about is position and power.

I read the whole series of Cynical Orange, now done, in nine volumes, the retelling of The Little Prince, as The Little Princess, a girl lost and the idea of appearance, and dependency.

These aren't manga tucked away, just something I read on the bus, this is something I read after I pray to God, “Please, let it be over, let it be over quickly.” I read it when the tears of pain are cleared from my eyes,because I don't want to smudge the pages. I grip the pages and try to read the text, because it helps to relax, to have something to look forward to. It makes it easier.

Before you tell me: The magic bullet (anal suppository) does not work for me. Senecot does not work; Milk of Magnesia does not work. It is not just the colon, it is the whole system. It is what I eat to slow the blood that comes down my intestines congealed to the sides of shit, the blood that runs down my intestines, pooling in the colon. It is the roughage I need so things move, yet same roughage that cuts me up (but less of that). It is the balance. A single carrot, can leave me bleeding for a week.

This is hell, but it works, and I live. I live and manga is what keeps me sane. And every person who gives a manga, there is a post it note with a name, and in the middle of the night your name is whispered, “Thank you, thank you, thank you.” Because you made 30 minutes something other than rocking and letting the tears fall.

Someone wanted me to put the medical stuff up at the top of my wish list. I didn’t understand. It IS.

To be somewhere else, to feel something else, to want to be in an adventure. Now, so disabled, I am a child again, emotionally, and in ability. I dream of things I want to do, of places I want to see. And books and manga and DVD’s and artbooks are the way I do that. They are the way I communicate to you, and the way I communicate to me.

Do you remember the wonder of a child, of exploring a place, a simple building that you had never gone in before? And inside is a wonder, you learn it is a pipe organ but for you it is a wonder, and there is a kind adult there who listens to you, who tells you about it, you maybe lets you play. These are the emotions I seek.

I cannot go outside, I cannot wander into buildings, and I am entirely dependant in my life on kind adults, and yet totally at the mercy of cruel ones. “Why do things have to be so hard?” Linda says, “I think about it and I don’t know, I don’t know why.” We just hang on, go on.
I find wonder in art books that I get from Japan, where the diversity of art is amazing – Pop, one of the great Artists in Japan is doing the entire fairy tale series, from Red Riding Hood to Little Mermaid – there is one on my wish list, as it is translated to English. What person with a serious degenerative disease does not understand Little Red Riding Hood and how hope is turned into despair?

Well, on to the slumber then, the mess of a slumber party is a lot more like THIS, with people waking at different times and snacks and crying and living. Not quite the lesbian lingerie parade. This is human.

I long for the spring, I long to read Ooku 3 or Butterfly 2, which Linda says are not soon but not far-far either. I long to get art books. And I long to give out the presents to my friends. Sure, I feel like the kid suck at home sick over summer break, when everyone is too busy to remember, because that is who I am. I still open myself up, wide open, in every blog post. I want to live another year. And I pay, I bleed in bleakness each day to do that, each hour of each day. And right now, well, it is too damn close. Losing is dying. My dreams are in red.

Let me just think of the spring, when the cool means sweating or not doesn’t matter, and I will have been able to have my hair cut and will be outside, reading a book for....pleasure. Linda reads to stay sane, for both of us; I read because if I scream I will wake Linda up, I read because I want to be at a ball, or talking to people, or working at an office, trying my best. I am so willing to join the author and fantasize.
But sometimes, I do break down sobbing when I have to come back here.