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.