Tuesday, February 02, 2010

Living out of time

Time (which never stops) creates a shared experience, like being in high school. This is not just assumed in the culture but in creating a self-identity and social interconnections. It is what binds us as humans, the foundation of the four Buddhist statements, and how we evaluate the decisions we make, and the consequences.

Except for those for whom time has stopped.
Am I dead? No, not dead, just not in time, not among the tick-tock, tick-tock of what makes lives. Not in the hurry, tick, quickly, tock of urban life, the slower seasons of the rural life, not in friendships or funerals. It is a life out of time. A dream life? Or hell in a box? And how would I know which without time?

As hard as it is to imagine, such a life is entirely possible when a temporal lobe blood rupture creates damage to the brain. That damage, enough that the short term memory, which is then dumped into the mid-term, to be remembered, from who we had lunch with last week to what we are planning to do this weekend, doesn’t get written anywhere, it just…dies. Much like in Alzheimer’s, known often as the ‘cruelest disease’, that section, among others dies as well.

Without time, I experience, I feel, but I remember little. Every day, or every day I have marked off, those around me verbally remind me what I have lost. They tell me, “That is in the lost time.” Or answer 'no' with a particular sorrow as if while I might not know my phone number or day of the week, I might not know if it is am or pm when waking, I do know that the flood of information known as ‘memory’ does not surface for me, and that is sad. Or it is bad, or both. Like the computer or car we turn over a few times to make sure that it is well and truly dead, I check and remember what I remember which is that I do not remember.

A dozen times a day there is a feeling of knowing or seeing the ghost of what I knew, the shadow on the wall which disappears by the time I turn my head. I want the name of an author, or of where I lived, or what I did, or where I stored something on my own computer, or the feeling I gave money to buy something..but what? So often, the feeling that something was once written here, and I should know what it is. I should. But all I have are the scraps of paper of a memory but before I can see more than a letter or two they blow away. The confusion slows me, my desperation while I reach out to grasp at one single scrap, hoping for some clue of… They are gone. Or rather, they sit in the memory of everyone else, but not within the ‘me’ of now.

I know only to talk in metaphors instead of experience, just notes, and collective reactions. And the anger, I remember anger, the self hatred, the hurt I cause in others, the forgetting. I know some people tell me exactly what postcard I sent them, or send a picture and I am thankful as for the rest who email, I just fake it, as I do for so much of my life. I sometimes stop giving gifts, or emails, not because I don’t care for a person, don’t FEEL the love for them but because three days has passed and there is no paper, or email or other way for me to know them. I have no idea what I have sent and to whom. I am so thankful for the yellow notes stuck on books or manga, as once they arrive I have no idea when they came. So then when I read them either now or some time in the future, if I can remember, on a day with no seizures (seizures are like turning your computer off without saving anything ) and have the strength, I can thank them, I can send them a postcard thanking them.

I live within the labyrinth. But unlike Borges, by the time I finally realize I am in a labyrinth, I realize I am aware only of this: of now. That I do not know how I got into the labyrinth, or what life was like before this. I cannot imagine life beyond the labyrinth and think this part of the labyrinth is home when not understanding that what part of the maze I am in changes over and over again.

I dwell in the ghost of hallways, of places hard fought for and don’t recognize the ruins. The empty accomplishments and meanings stare out at me, as I am always alone. Who can live in timeless void? If I am lucky, I find a bit of rest and pleasure, and if not, I have only enough time to wonder ‘why?’, to ask God a question or two and worry this is all that I am, some testing ground for pain? Some odd experiment? And then a seizure, or the days make even that slip away.

Will I wander here until my soul is ground down to hopelessness? Until love, until compassion, until hope, all fall under the shadow of fear and thus death, hour come at last, brings the first smile in many a hallway, the hope of a rest I won’t wake from.

How Linda and Cheryl see me, or tolerate me, makes me worried and a bit afraid, at least tonight, and by notes, other nights and mornings (once I start writing a blog, I keep going, though the night if need be, as how else can I know who will come to try to find it the next day?). How much of the ‘lesbian sleepovers’ is tired repetition to the two who step out of the world, who leave the shoes of time at the door. Are there looks of disdain, of tired irritation over actions or enthusiasm I think are new (in what age I might be regressed to) but are boringly repetitious? How much do they have to put themselves aside in order to even converse with me? To try and understand the fluctuation of age, and the mind that lives partially 10 years ago, or more and for whom it is always 2006. How many looks of sadness, how many sad smiles hoping that this weekend is not one of tears, or wondering if I will ever understand how much they bear the cost of being the ‘adults’? The cost of being the caregivers? The frustration that builds up because of that? I won’t know.

I know that I am in pain, constant, unrelenting pain, but then a couple seizure cycles and grand mals recently didn’t help. Nor did falling. But the frustration I feel, does it get recorded, remembered, or is it only the caregivers that matter? The books out there only speak for them, the instructions only for them. There is no recorded memory but this. And I don’t remember it, you do.

I do try, try to be a good hostess, a ‘good girl’, not a bother, working around others. I will remember some statements or expressions that Cheryl made about what she doesn’t like. There is no order, it could be a bad day, a chance comment for her but it is the only thing I know. So I repeat the avoidance, the actions, and with Linda as well, behaving according to please. As these phrases remembered have no place in a timeline (as I have no timeline), just statements placed next to people, maybe misunderstood. And even if they explain to me that week, it will be forgotten by the next week.

My living, and this memory is a chain, it is intertwined with flowers, yet still a chain. While the damage was good in limits so that I did not die, it keeps me from growing also. I face all things I once did again, and again, and again. Every worst experience and insecurity I live out in dreams, in darkness, in the island of time surrounding me. The memories I put behind me are here, and here, and here, twice a week so they tell me. I keep trying to overcome them until I ‘loop’, triggered quickly into passion, unable to return to the adult who put these behind her. Meanwhile the decisions which when combined matter the most, the little actions which make up a person are gone. So also are those little things which build a relationship. Cheryl knew me but few months before the brain bleeding and so she is always a bit new to me. Because I see her in many pictures I think she and I know each other a lot (or she knows me a lot). But I can’t remember the common interests we have built up over time, those shared trusts and bonds. It makes me ashamed. I am ashamed.

Right now, you could tell me who a person is, and if they make me cry. If they do then I am scared, but in a few of a few days, I am ready again, open or empty? I am the reason parents make their children repeat not to go with strangers, because I do not know that. And so I will be hurt over and over, and not even know there was a choice.

Yes, I regress, and I regress often without memories, or with some, depending on the trigger, fatigue, TIA, seizure, all three? But I still have questions. If I am this age, why do I not go to school? Where are my books? Why do I not go outside? Where are my friends? Why all these plushies and what are these things I know which come into my head. At eight I might have known a lot but I still thought most of the humor in Reader’s Digest was funny and didn’t see the punch-line coming. And sometimes, I have the same humor, or wander in and out, reading a manga and not getting parts. “Why would he ‘eat her?’, is he a cannibal?” Parents watch kids, remember what is not appropriate. No one watches little Beth and she has a ‘too big’ vocab (one with a pervert bent).

The one thing I know about is a cage. My body is one, my mind another, to keep my plushie in a cage is only because I need to look at myself now and then, through the bars. Time is my cage, and people wander by to see how I am dealing with this new world, this new day to me, this almost yesterday to you. You walk by knowing I will not recognize you unless you want me to, or you approach frustrated that I don’t. I am the epitome of the vacuous maiden, whose head really is a bit empty.

Linda among others try to keep the cage looking the same, keep it stable, keep it secure so that I am not more frightened than I already am. Because I am frightened. I have had a hundred to several hundred brushes with parts of life taken away before being forgotten, over a hundred scary to very terrifying experiences, a hundred hate mails, and lots of angry people. These people are perhaps justifiably angry at the actions of what they assume is a ‘person in time.’ To me, it is someone angry at me, at ME, specifically, and I don’t even know them (I don’t remember knowing them) for something I know nothing about. All of this has imprinted on me until I am fearful all the time, waiting in fear for it to arrive. I don’t know what ‘it’ is, but yet something does. Particularly when the hour or two of Dr. McClung goes and the scale slides down to the child.

It is so simple to terrify a child living out of time, in the body of an adult. What is hard, so hard that few even try is to try and understand this child. Everyone wants to know Elizabeth, so that Beth is always in shadow, never able to share before that which amazed or saddened is forgotten and it repeats. And harder still is to try to understand which Elizabeth or Beth it is, to understand enough to give real joy.
They say that those with late Alzheimer’s live completely in fear, fearful of everyone, and I understand that. The incident is forgotten, the fear isn’t, the tears are forgotten, the shying away is not, and the forgiving of someone is forgotten so when I shy away they are angry once more.

I have little bits back, little memories and things I tell myself every day. I can read books with words now (I put some on the wishlist after reading TWO in a row). I want life to have joy or calm, and I want to bring both to others. But I don’t think that will happen for us for a while, a long while.

I have to say it now because I have already forgotten when it happened, so long remembering ‘don’t tell’ that I forget when it did. Linda was let go, along with 200 of the 230 people of her government department. She did a great job, her clients, which are government ministry’s say they will be her references.

For insurance, there is no Cobra or anything, nor, after both computers died any savings, though we have rent. If we don’t Linda won’t say. I have I think twenty days or so of insurance. It seems every other day I ‘figure out’ that dying in the next few weeks is the solution. Linda says no. Linda found out the rumors of layoffs were true when locked out of her work computer twenty minutes before a ‘meeting’. Then she was escorted out. She put some of my not-over counter medications on the wishlist. I can’t get a job. I can’t even emotionally support her to the level she needs. I can’t remember anymore when it happened. The tissue bill for tears around here will be high. If you have a ‘what can I do now?’ impulse. Please, if you can figure out how to get ‘gift cards’ for CANADA safeway or CANADA Thrifty’s supermarket – that would be cool. Or email her at Linda.mcclung at shaw.ca

Morning is here and this 'me' is going away.

20 comments:

Dawn Allenbach said...

You may not remember me anymore because I've not sent you a message in a long while. If you don't remember me, it is MY fault, not yours, because I haven't written to you enough. But I am still here, I still love you as a sister. I will be more diligent in sending messages, and maybe one day you'll remember. Even if you don't, I'll still keep writing and we'll get reacquainted.

rachelcreative said...

This really is a blog post that lets me live in your shoes for a moment. I wish I could help it be better.

The news about Linda and her job is a shock. I can't imagine the stress and anxiety that must be placing on you both.

For what it's worth I don't think you are "empty" when time has been wiped. Because there's still you. Even confused or regressed or distressed or seeing things new for the first time (again) there's still you.

JaneB said...

Hugs. As always, your writing, your courage and determination to articulate these extreme experiences, are amazing, and awesome, and frightening, but I'm not looking away or leaving, I'm here and listening and caring.

Oh hugs for you both my dear

wendryn said...

Thank you for writing this. It makes some things less confusing. I will try to connect with the child Elizabeth, too. I sometimes forget and write with assumptions about what you know, but I will try to make it easier. Your descriptions and choice of illustrations are very clear and effective.

I am sorry to hear about Linda's job. That sounds terrifying. It's a scary place to be, I know. I really hope she finds somewhere new soon.

*hugs* and more *hugs*. We'll do what we can.

Vanessa said...

This is a blog that I can understand and sympathise with. As a sufferer of NDPD my mind goes blank every time I have a petit mal seizure. When I come back I'm like a child for... who know's how long? It is at those times that I live out of time as well. The fear of seeing somebody you MUST surely know but can't remember who they are, of the simple things, is overwhelming.

The only differences are that I go back to time, usually within hours of my seizures, so that even though my memory is dumped I can start recovering and trying to store stuff in the long term. That and I was born with this, I know no other way. I can't imagine what it would be like to have the rememberance of memory like it was a shadow... I've always had notebooks with notes scribbled to myself to tell me what to do, how to act, what to remember. I don't think I could cope if I got worse or better all of a sudden.

And I'm soooo sorry to hear about Linda's job. I'm going to send a care package in the next week or so that will hopefully help out. I'm praying that she finds work again very quickly.

FridaWrites said...

It is awful about Linda's job--my heart grieves for you. Linda is very smart, though, and she and Cheryl will take care of you and figure things out. I'll be able to help soon too, thankfully. I know the fear, I really do.

Can Linda also order a debit card for her PayPal account? Then she should be able to use it for food and medicines. We did that.

Cage, yes--aloneness, disability, memory issues are all so confining. I wish I could hold your hand through some of the difficult times--and that of so many others who are caged.

Your metaphors are beautiful.

e said...

Beth,

Your writing is poignant and beautiful...I understand about the cage because there are days when I feel that as well.

You are still you in essence, no matter what, loved and not forgotten.

I am saddened for both of you regarding Linda's job. Hugs to you, Linda and Cheryl.

Elizabeth

Raccoon said...

very evocative post.

And very disturbing, somehow.

Crossing my fingers for Linda.

Anonymous said...

why don't you take polaroids and such like in that movie, momento?

cheryl g said...

This is such a powerful and important post. Your descriptions are so vivid and they help me understand your condition better. Scraps of notes being blown away – brilliant.

Please be assured that I see YOU. I see someone dear to me who is so amazing and so easy to love. I never view you with disdain or tired irritation. As for the lesbian sleepovers… they are loads of fun and an important part of my life. I love watching your enthusiasm and seeing your wonder and excitement. Being with you reminds me to live in the now and enjoy each moment.

Conversing with you is mostly easy. It is only hard when you really don’t know me and are very frightened. That is hard because I do not want to frighten you anymore and I have to remember that you truly don’t know me. I may not always adjust quickly enough to your regressions but that is my fault and my challenge to over come.

You are a good hostess, a good person, a loving friend. You have told me that when you see me you feel safe and that makes me happy. Please don’t be ashamed. We are family and we have a strong bond. The rest of the details I am happy to fill in for you. I find you remember more about me than you realize,

Linda is right. The solution to her being laid off is not for you to die in the next few weeks. Linda and I will make sure the rent is paid, there is food, and Beth is taken care of. We will all get through this.

Elizabeth McClung said...

Dawn Allenbach: My brain says "Black Rhino" and "Little Fish" - that's what I know. And "SMA". I know this, and that you get sad at an anniversary but without time, I don't know when that is, I am sorry. I am still here. I hope I am the same person you loved, or you love the person now.

Rachelcreative: 'pop-up', 'art', 'CFS/ME day', 'needs gift of stationery'.

Linda said the blog not only showed what it was like to be me, but what adjustments and filters it takes, the efforts to be close to me physically, that I had noticed or guessed some, she said she would write more on that.

Linda is a good worker and a good manager and I want her to laugh and smile. Anxiety, yes.

I don't know if I grow, I hope I do, I hope I am not just repeating ideas and thoughts, but that by being 'me' in whatever state, I continue to challenge myself. I guess while others build their accomplishments a day at a time, their life progresses in starts and stops I do what can be done in 2 days or less, like doing the blog, and not stopping until it was done, though I had a high fever and was in pain and still am it was worth it. Linda says it was a good one, not to long, long enough, helps people see how I see and live. The point of the blog in some ways.

JaneB: The manual said that the Ph.d. was for the quest and the documentation of original material. I don't think what I experience is original, any more than what Margaret Mead wrote down was the first time anyone had sex, but I am still trying to create documentation of experiences, so that they may be used as reference for others, may be printed and handed to relatives, or put up in homes or for anyone who has an aspect of this to feel less alone.

Hug to you too

Wendryn: I am glad the writing was effective, I am sorry I have let you down in understanding at some point in the past. Have I? I must have.

I think Linda is feeling more confidant and that makes me feel less scared.

Vanessa: I searched the mail, the internet is a wonderful thing, and your descriptions there have a similar feeling, to be somewhere and not know why, to lose that aspect of self but able to intake input. As Linda says of me, you deal with it very well, I think better than I, I used my past and such to fake and paint over, except for when people are close and I cannot at all times. You have been doing this since birth and participate, have a place in the world, have friends, you grow.

Thank you, I pray too, and for others who have not jobs.

Elizabeth McClung said...

Frida: She and Cheryl talk a lot and the few days feel like many and the things I am not to tell crowd out the things that happen until I had to tell before that disappeared, but Linda said it was okay.

Linda is looking into the debit card on paypal. Thank you. To not be able to have $10 or $25 gift certificate delivered by internet is odd for a huge multinational like Safeway, or to use in shop online - I can get food delivered as disabled but I can't pay for it online?

I will write about medicines, later, and the terror of that. I hope the metaphors are good for others too. And help understand.

e: I am sorry about being in the cage, I know the cage, I know the need for a safe space even if it is someplace where people can come from 'life' or what is out there to see when time talks to them.

Thank you for your care, and hugs. I don't understand some of what you say, but I think Linda will. It does not hurt or scare.

Anon: I know this film, it is from the before time. Since the person goes around killing a person in differernt towns endlessly, I think not the best model for living. But I have something like that, both a brain board and a screen saver which shows pictures of what I have done over the last time, and the people in the pictures, reminders of faces and people. The board and notes tell me what to know - just have to make sure not to lose them, or worse find one and not know if it is from yesterday or last year and if I have done it or not.

Raccoon: I was worried with your comment I did something bad. Linda says that it means the post helps people see my eyes, my living, and that is hard. I said, "It is not hard, it is living, it is what I know." and she said that for others that is not what they know as living. I hope that is what you mean by 'disturbing' - I do not fear you, I feel you are friend, so I don't want to make you disturbed or disgusted with me.

Yes, fingers crossed for Linda.

Cheryl: I am glad that the metaphors mean what I hope they mean to others in writing them.

I am sorry I don't know you like I should, like a person who has shared to much should. I am sorry.

I am glad you like the sleepovers. I try to be me, and to not do things that hurt you, as I remember them, and I hope I remember right. I try to do right, and I lean on you to help me to do that.

Will be okay? I wish I could see your face. But I remember you saying 'Thai food is okay', we should play air hockey, I remember what I remember.

I would like to get through this, not have to worry like this.

SharonMV said...

Dear Beth,
You never stop growing, always you unfold like a flower, revealing truths to me. Sometimes beautiful as the words are beautiful, often painful, yet the words still are beautiful. Such hard & brittle truths at times - falling petals, fallen blooms of the cherry trees, walked on by the careless.

So sorry about Linda's job. I sympathize with your worries and with the pain you feel, feeling unable to provide support. Love to you both.

Sharon

Baba Yaga said...

Sometimes, Beth, you write in poetry. What you write is painful, but beautiful because true. I'll take poignant truth over bland fudge any day.

I understand some aspects of being out of time, from having been very dissociative - 'though that as often dropped me into the wrong time, which is not quite the same thing. (Except that the fear and trying so hard to be goos, as though you were not quite wonderful, is Then, is it not?)

I understand more because you write it, because you speak it so clearly.

It seems to me that even with regressions and lostness and blank time, you've been growing all the year or so I've known you. (Before that, I only knew your blog a little.) Maybe it isn't the kind of growth adults are 'supposed' to grow; but some of it 'feels' to me the same sort of growth I had to do to become an alive adult, instead of a walking-dead adult. The alive adult has much more child in her make-up.

Yours has been growth of the heart and soul, not merely of the intellect. I don't think it matters whether one's 6, or 76, or 14, or all three at once - that growth is always meaningful. (& I think it outlasts explicit memory.)

I'm sorry about Linda's job - it never sounded a very happy job, but I'm sorry about relative security lost, and extra worry.

Dawn Allenbach said...

You're absolutely right! The black rhino is my favorite animal. I'm working on a Ph.D., and my experiments use little fish. I have SMA, a disease of the nerves going from my spine to my muscles. The anniversary that makes me sad is my brother's death. We became friends right after his death because you reached through the black void and offered me friendship and sisterhood. I'm always grateful for you and Linda and Cheryl.

Bonnie said...

I've been reading your blog for a couple of months now, but only commented once; therefore, you don't actually know me.

But I wanted to give you a heads up that a package from Amazon is on it's way.

I have been fighting my own gastronasties for several days now (IBS with random puking) and because of it, haven't gone to nursing school 2 days and had to leave early on the day that I did.

I've been feeling pissy because of this and needed a little pickmeup...what could be better than sending random gifts to someone? Shopping is FUN! So that has helped me get over this and I thank you for that.

yanub said...

Oh, dear. No sooner is there good news for one friend than there is bad for another. This economy is dreadful.

I emailed you before I read your post, which is why I don't say anything in my email about your post, since I was intent on emailing you before I forgot why I had sat down at the computer this time. But things should smooth out a bit now, and I will be back to emailing you every night.

Lene Andersen said...

this was so beautiful and there was a strange sort of joy in it, a very sad joy, but reading your words, the words are so brilliantly capture exactly where you are in that knee understand a bit better, the giving and receiving of that gift was joyful. If that makes any sense at all?

I'm so sorry about Linda being laid off. 200 staff laid off? My god... me wish I had the money to help you, good thoughts and good wishes are not as useful now, but I do send that.

Veralidaine said...

Beth,

I don't comment much on the blog these days, but I am reading and this post was I think one of the most touching you have ever written. I know you worry that the parts of your brain that are gone have taken with them some of your talents as a writer, but know that anything you've lost in terms of memory and the ability to always find the right word instantly is balanced out by the emotional responses and understanding your writing evokes.

One of my little fantasies for you is that you find immortality in these writings of yours. I hope that people who are in similar situations will find what you have written about illness and dying and feel not so alone anymore, even a long time in the future, because you weren't afraid to share completely and resolutely your feelings and experiences. I hope that relatives and caregivers read posts like this and come to understand the other side of the caregiving relationship.

I hope you got the mangas I sent to the Port Angeles address recently and have had some time to read. I care about you no matter which Beth you are on any given day, you are always my friend and cousin Beth.

Diane J Standiford said...

Many of us wish we had as much life as you. (()) Jobs come and go, it will work out.