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.