AAN: auto-immune disease of the brain and the effect on memory & the Brain Board; memory, regression & emotions

I have, what seems to be an autoimmune disease of the brain, some variant of Autonimmune Autonomic Neuropathy. In my case that causes vascular instability, which means that as the pages on my Brain Board report, I had 178/159 BP with heartrate of 79 after sitting still for 4 hours, while doing stamping of postcards gave me 150/124 BP with a heartrate of 101. A steady jog would be about 100-110. This is all pretty medical stuff. What does it mean?

Well, the first reading (178 - 140 is "high blood pressure") is when the heart pumps, that determines if blood gets to your brain and organs, the second, the diastolic is what the pressure of your arteries and veins are when you hear is resting. So there should be a BIG gap, like 120/60. If you have 178/159 that means that like water pipes, the pressure is WAY too high, you can hear the pipes groaning under the pressure, which never lets up – even the ‘resting’ pressure is considered, ‘high’ or ‘very high’ blood pressure. So that means that little leaks occur. When that happens in the brain it is called a TIA which means a mini-stroke were the visible effects like a smile that isn’t even on both sides last only a day or two. Larger ones have longer effects. I have had dozens to hundreds of these.

One of the places my veins seem to bleed (blood is like acid to brain cells, it literally melts them), is my temporal and frontal lobes. Those two place affect my ability to sequence (know what comes before or after things and do math for example) and my memory (to be able to recall the events). Also, the inhibition of emotion from my frontal lobe seems to be diminished (and I loop, get upset, go through a 20 minute anger thing, then forget and do it again, and again...until I am stopped).

I am talking in this scientific way because brain damage is a VERY painful and difficult topic for me. I had/have a very good brain, I had pride in my brain. Yet, I can only write about the effects in this blog because I just had a long sleep and have a 'good day' and a 'good brain day' and have made notes on my brain board (yet by the time I finish writing, I will be drained and fight to write a complete sentence). If you have talked to someone who is older, whose memory is ‘going’ then you will have talked to me: as that person’s memory about what they ate at age 6 is perfect; what their favorite TV show was as a kid, they know. But what they had for breakfast or who you are…..?? No, doesn’t seem to be there, not on a bad day. That is the same for me. But if I sit in one spot, right here at the computer by my Brain Board, I have EXTERNALLY tried to create, over time, as I noticed by what people said, what I am missing that other people have. This is my Brain Board. It has a calendar, it has lists of every thing that I have thought of needing to remember, a monitor for Linda when she is home, and so much more. So when I need to know what to do, I look at the board. When someone calls, I can talk, “Hello, Elizabeth McClung here?” and they want to know something I can see if it is on the brain board and then say….. Well, see, on medium and bad days now that part got too confusing for me, so on my daily list which says "Beth's Daily Check List", and hangs by my little stuffed Totoro,and has, “Turn off phone ringer once worker arrives" because I am not trusted to answer the phone. And because it confuses and scares me.

You can see on the board there is BabyCall monitor which is a listening monitor for people who have babies and it picks up abnormal noises while filtering out the normal. So my oxygen and my air conditioner are filtered out while Linda sleeps but if she hears me going, “Where is there?” or “Help” or “Linda” or “Mommy” or “I’m Lost!” or just crying...THAT gets picked up and Linda comes. Do I get lost, really? Yes. Often people will say, “Oh, I know what you mean, because I lose my car keys.” Yeah. Have you sat for five or six hours because you don’t know where the bathroom is and you don’t remember and don't know why your legs don’t work and you are lost and scared waiting for someone to come get you? Oh, guess that is a little different than car keys?

I know what to write because on the brain board it tells me, ‘Do post of Brain Board’ and “Talk about ‘what I know’ paper” which is a paper on the board, underneath the lists of names (which are the dates and who I sent postcards to so that I have some idea if I am sending the same postcard over and over and over again to the same person). On the paper, if the person sends me a letter or a postcard and it has information, I can put that on, ‘What I know’ so that when I write a postcard, I can find something that interests them. If they write, “I am off to Tuba practice” I write, ‘George Whitterly plays the Tuba’ on the ‘What I know’ paper. Often when I am having a bad day or have had another small stroke, I say, “I know what I know….I don’t know what I don’t know.” Which means, if someone asks and I know it, I will say, otherwise, I DON’T KNOW. Now I have more of what I know. So I know things people said more than a ‘soon’ ago. Depending on the fatigue and pain, my memory can be limited to a hour, a few hours, a day, or a few days. I have good memory of my youth, and often I am confused on when I am. Ever wanted to go back to school or first year of uni? A little blood to your brain and there you are. So if I have an argument with Linda, if I buy something, two days later, I won’t remember. Not unless there is a powerful trigger, usually emotion connected to it. So for example, this week, I had some money saved for getting an art book (art books are VERY important, I will explain why soon), and I was ready to pay when….by email I got an invoice! It seems that I bought some presents at an online store from someone I met at Sakura-con, but they were away over the weekend and NOW, on Tuesday they invoice me. Do I remember buying the items? No. But they are items I WOULD buy as gifts, so I have to believe the person and pay them. As for the art book…..not this week. And what I paid for....I don't remember. I think the brain board has who the gifts go to on it, I will look when the items arrive.

I have a better memory of images than words in spoken language. So, if you see on the Brain Board, I have a Calendar, and right now it is “Deer” – so when Linda says something will happen, she says, it will be ‘later in Deer.’ Before Deer was ‘Sheep’, which I don’t like for some reason. I don’t remember why but Sheep was not a good time, but before Sheep was “Wolverine” and that WAS a nice time, I think. Thinking of Wolverine makes me feel warm. I don’t remember anything specific but I find when I am tired I say, “I want Wolverine.” Maybe it is just that is when time started again for me, as I had figured out how to talk about it. "Late wolverine?", "Is it wolverine or sheep that it happens?" I had a way to communicate where before I just....felt scared and confused and looked like that.

And so when Linda tells me that I bought something from Japan in 'Sheep', and I ask 'is it here?' It will be here “soon” I am told – “soon” is a week for me, which is about 2.5 days. So Cheryl comes to visit every few “soons.” I get mail when Cheryl visits.

Here is a page which is a list I made with the help of everyone (Linda/Cheryl) of the rubber stamps we want at Rubberneckers for the postcards. And then, when the donations come in, there is a list, done by stars (**), on which order to buy them.

I was emailed that the owner would be discontinuing the Stamp Oasis in July, whenever that is. So I have more rubber stamps to get which are not having stars but I cannot get what is not starred as that is what people have donated for. Do you understand? This is how I remember things, not IN my head, by OUTSIDE. And it takes longer but I still have a lot of the things people need to remember, I just have them outside.

This is a sheet of art books, the names, the ISPN, and where they can be bought, but also since I don’t know when I researched it, I have to recheck it, and also stars on which to buy in which order. The page on top is an ‘addition’ page with new books like the book of watercolor paintings I have been using recently. In many ways, I am like a child who has a very large vocabulary but can’t find the words; I know how I FEEL, I know what I MEAN, but I can’t say it. I spent 14 years AFTER high school going to university to learn things, and to learn in particular the connection of things between humans. So when I am losing the ability to be able to speak that. And then starting to lose the connection to be able to write about it, pictures are what I HAVE. Pictures that anyone can understand, that I understand and others understand. To know what it is like to be lost, to be in a large place with lots of sound and not know exactly what to do, and just smile because maybe this person knows you and it is better than looking lost. Or because it is better than crying. I feel that way in my home, I have had shop owners call Linda to come and get me because I am lost.

If art was the way you could understand others and others could understand you, how much would that be worth to you? If you went from Dr. McClung, to Elizabeth, to Beth, to Sweetie, to ‘No, this way, come on.” How much would it be worth to be able to express yourself in a way that others understand? I have no idea when I did that research for those art books, I have to do all my research in one or two days maximum, and write it down and put it on the board before I forget. Then I check: the invoices, the bank, the paypal, the art places orders before I order a book to make sure I don’t order a repeat. But if you couldn't express yourself and no one would talk to you, how much would that be worth to you; to communicate? $5? To be able to have people email you like you are not disabled. To have people understand what you say. $10 a time? To understand what is happening to you, to find a picture that explains how you feel? $20? Seriously? Or do you just want no human contact at all, never read, never want to connect to people. Never want to have a book that you and your partner can look at together and point to the people and point to yourself and the other as a means to communicate? Because that is why I spend, what I don't on postcards and gifts on art books. Art books let me talk to Cheryl, to be at home alone most days but NOT be alone but finding out what I am feeing, to work, to have a conversation with Linda, to write a post so I can talk with you! The reason I though RachelCreative's piece for CFS/M.E. day was so brilliant was because I felt what other people felt, the pictures expressed something we both understood.

Here is a list of things I can do during the day. It is here because if it is not, I will not turn on the fan, or find the gatorade. I am in a strange place, I know computers, but I am not going to open a yellow bag in someone’s house! This tells me how to do that. And when I come to bed, if I am able to come by myself, this list pictured here, on the mirror, tells me specifically what I need to do in order to go to bed. And I mutter, ‘number 1 and three done,” and keep checking the list and when it is all done, then I get to wheel out and to bed. I am terrified that Linda or the home care will put me in a Home but she says that she will not, that even on the bad days, I will be able to stay with her. She has on the list, “Email Linda: call in emergency” – she has the number on speed dial, as I don’t know any phone numbers. I don’t know my birthday, I don’t know how old I am. I don’t know what year it is, how long I have lived here. We avoid topics that I can’t remember as why would Linda want me to feel stupid. It is a testing of different topics to find ones that we remember together.

With my brain board, I can spend much of the day by myself, because I HAVE my brain or part of a brain there, it is just OUTSIDE my head. Beneath the Totoro are pages which tell me how to operate particular computer screens, like Amazon and such. I can’t talk as well, or write as well as I used to but with writing and the right pictures, I CAN, which is why I spend on the art books I researched because I have limited funds and I need to make people understand. I need to narrate this. No, it isn’t fun or proud, and everything I do takes longer than you simply ‘remembering’ but I am still here, still functioning. But only here, at the computer, by my brain board, across from my manga (a shelf for those read, a shelf for those unread) and art books (a shelf for those photos taken of; and for those still to have photos to be taken). But if you take away from here, this room, then the memory and mental degeneration and regression becomes much more apparent. On a bad day, this is the best life I have: me protected, while I enjoy myself, with Linda or Cheryl watching over me.

See in writing this, in PUSHING, I am losing my mental ability to articulate in the NOW. Linda came by and I can write but I can’t talk anymore. So I can make noises, and she understands. I can also make hand movements. I like making circles on her breasts.....boobies! Linda tells me that I can’t do that to anyone but her, that not Cheryl or the care workers. I look at the list and look back to her to show that it isn’t on it! Nothing saying who I can make breast circles on. She says that is the list of things I CAN do, like read manga or watch DVD’s: she needs to make a list of what I CAN’T do.

With the loss of memory, and the loss of inhibition, along with the inability to speak at times there has been an increase in the feelings I have. But also, there are clear cases, frequently, of regression. Cheryl and Linda both say that my entire voice changes, different changes for different ages, it goes up, it is softer, and Cheryl says coming in, “I need to know the age of the Beth I am talk to!” So for example, Linda will try to convince me to eat (I don’t eat a lot, one because I don’t taste much, just things like sweet or sour or bitter) and if she makes something new, then I will sit there and not eat it. And her saying, “Fine, don’t then..” won’t work because I once didn’t eat anything and drank little for over three days because I forgot, and Linda was busy and forgot and worker’s forgot (people assume others get hungry and eat - I don't GET hungry). Even today, before dinner, I had eaten maybe 600-800 calories in the last 30 hours. So she made pasta and has to convince me to eat it, and how she convinces me depends on the age, I am at the time.

When Cheryl is over it often feels like two against one as if there is something new, or something I can’t remember (Linda will say, “Did you like that chicken wrap we had three days ago?” - I stare blankly at her – she has to convince me all over again to eat it – poor Linda). So they are there telling me I will like it and either way I should TRY it. So I do, and it if it is sweet then sometimes, even if I don’t know what it is, I will eat it, and then want more. Cookies. I know that word. Linda says she is going to get Black Forrest Cake as it is my favorite, but I don’t REMEMBER, and I don’t know if my tongue NOW (which some things taste like ash or grey) will like it!

How do you deal with someone who is asking you for help, who is hurt emotionally, who is in pain, who has been told that they are dying, and they don't know what to do? And how you do know if it is the 15 year old who might be able to understand you or the 5-6 year old girl that you are comforting?

And how do I handle being that person asking for help? Asking to be held, when all I know is I want someone to hold me, because this isn't where I live! And I HURT and I want to go HOME! And Linda, crying, tries to tell me I AM home.

Regression is hard. And then there are the strong emotions, I think I have always had strong emotions but when you are told you have little consequences (dying is liberating in many ways; oh no – you might not give me a job next year? Wow, how much do little jars of ashes get paid?), added to strong feelings life is very complicated and very simple. When I like something, I want it again, and again, and again. And Linda goes, “You’ve had melon soda for two straight weeks, aren’t you sick of it?” And I think, “I don’t remember that, but NO!” like this fox girl who likes apples, if one is good, a whole sackful is better, yes?

But yes, by most nights I don’t know who I am, I know that I used to be a lot of things, and I have lists of them, and sometimes I remember them, I know I will always know what to do with a sword. But I also don’t have a future, all that I was building towards is……gone. So who am I? I don’t know, and when it comes to the last year or two, my memory is spotty. I don't know what I am working toward, and yet, I have to go on.

Every night when I take out the contacts I look in the mirror and wonder who is this woman, her hair falling out? Where is the 12 year old, the 19 year old, the 22 year old, the 26 year old, the 28 year old that I know I am?

I have strong emotions, and part of that is the grief process and part of that is because I am at times a 6 or 8 year old. And I have diminished inhibitions. I literally don’t know to come out of the rain, like a child, at times, things are freshly new for me. That includes the pain, from emotional from the comments or emails, to the things people say or things that happen in my life. Then there is the fatigue and times pain overwhelm me, having carried it too long. Combine both and there is an emotional reaction: I cry every day. I have three rules which dictate everything I do: of which, at the end of this blog, mentally exhausted, I can remember only two, “I am always afraid” and “Don’t get Linda mad.” But on the other side, I have strong pleasure emotions. I am trying to find those, as I don’t laugh like I should, or smile, Linda says that I am burned out, more burned out and burdened by expectations including my own than anyone she knows. I want to be happy, I want to smile, I want to feel that feeling of happiness inside, instead of ashes.

At the end of the day, and in the dark and hard times, the times I have bad pain or remember little, it is Linda who holds the sword now, who defends me. I think I called her ‘mommy?’ once and she recoiled a little; that’s not who she is; she is a partner, in sickness and health, right? I know I have called her, depending on my mental age and understanding, ‘lover, partner, guidance counselor, baby sitter..” and yes, “mommy.” She understands that inside I am still the fighter, that that will always be a part of me, to bear what others cannot, for longer that should be bourne until it crushes me. But she also understands that right THEN I need a person who will be a refuge for me, who will take away my fear, the fear which she guards me from, protects me. With a board and help, I can pretend I have the same level of brain as everyone else, sitting in one chair. But if change happens, and change always happens, I need a lover who is a protector; someone who loves all of me, through the ages.

Brain damage and knowing when to go

I used to think that the most important thing was that people should know ‘who I am.’ And thus I stacked up a string of accomplishments, because I was a shallow, self-absorbed twit. Then, I used to do things because they hadn’t been done before; first in my family to get a masters degree, first to a doctorate, first to run a marathon, first to…. Because I was an externally driven twit.

But then I guess we all are in some way or another, as it took me until 19 to start to realize that I could be what I wanted to be: instead of simply NOT being what my parents wanted me to be or being BETTER academically than my older brother, or the other odd drives a youngest child has. I realized I could decide who I wanted to be for myself.

I have granted several awards from different people, Lisa over in Questioning Transphobia gave me an award as a Certified Honest Blogger. Which makes me feel honored. And winning E for Excellent at Andrea’s Buzzing About. Again, humbled and honored. As Cheryl would say, I am about to go “old testament” in my thinking. I cannot accept these because the awards require that I pick others; other blogs to label as excellent, or honest. I do not display awards won in voting even the top lesbian Canadian blog (which I told you to vote AGAINST me!), because something is true or it is not. And I cannot say that this is true. Which is why of the 20 or so awards I have won for my writing, the only one I accept is the Book of the Year award for 2006 for Zed because it was from a collection of book owners, librarians, and readers who annual say, “This we like.” They are not like the Booker Award saying, “This is literature”, but just, “We like this, a lot, so much we gave it gold!” Okay. I can accept that. I cannot and will not judge another human being if at all possible so I am in a way disqualified from getting many awards, but humbled that the people thought of me, in listing them.

That seems like a long way to say that for me, what has been for over 20 years important is to be true (in the most ancient sense): to care as much as possible, to not hurt others when so hurt myself that I cannot care for others, and to seek to create what it true, not what is popular or fashionable. This actually was most of my Ph.D. dissertation, that what one person likes, just because they are the head of oxford, doesn’t make that a better work, it just is more likely to make it a famous or work required to be studied.

Which is how we get to why I am thinking of having Euthanasia.

I have brain damage which produced emotional liability (an overreaction to stimulation, which is not just a reaction, but an uncontrollable reaction), and severe and continuing memory loss. My liability and loss combine to create states which are not unlike those of someone with Alzheimer’s, that I interpret the context, I remember an incident (which may be months or years past) connect it to the current event and have an emotional reaction. After the reaction, particularly if I have a seizure (and fatigue and high emotion are both triggers), the memory will likely disappear.

I have picked up, or learned that I had such a reaction on this weekend. Of this I have no memory whatsoever. Yet, I am informed that due to my emotional liability I stayed up to 5:00 am because of this, either upset or crying. My care givers will not tell me lest it happen again. It appears that for several weeks I have been emotional hurt and argued with people close to me, reacting to what they said. And yet I have no memory of this. Indeed, it sounds impossible that I could not distance myself from the situation. That I would or could hurt people important to me emotionally and not remember, or that I felt emotionally hurt BY them and not remember. And yet, a day or two ago, someone close to me said something, and I responded in what I BELIEVED to be a rational way, pointing out that what they were saying was an exaggeration, and gave an example. I was told that my example was not recent, but from far over a year ago, and this counter, along with the realization of my inability to explain myself and my views rationally without displaying the evidence that I cannot do that made me burst into tears.

Those close to me are burning out, because now, there is no set aspect, but I will completely forget things told to me a day or two ago. Even the morning before becomes hazy. And when people I trust tell me how I have acted, or what I have done, it simply doesn’t seem possible. It doesn’t seem that it could be me.

I am told that I get reactive and cannot emotionally see beyond situations, or even phrases. That I become obsessed. And yet I remember none of this. That I burst into tears for hours. While obsessed sounds a bit like me the rest does not. But to be obsessed to the point of damaging myself, to hurting through callousness others? Who is this person? Just hearing about it from people I trust makes me loathe myself and my skin. That I have disagreements, emotional ones where both parties are hurt and yet remember NOTHING a few days, even a few dozen hours later?

It has reached the point that for my caregivers, they are careful not to react, realizing much like someone with Alzheimer’s, that my asking the same question or being upset about the same thing is not ME, it is the disease. And that when they lose sleep for the third or fourth night in a row because of seizures or other conditions it is not ME, it is the disease. Except it is very hard to do that, even for a short period of time. Which is why I know those who have loved ones with Alzheimer’s call it a disease of intense cruelty. Because eventually the loved one, the caregiver DOES snap, does lash out verbally and hates and regrets what THEY are becoming too. That they are burned out.

Which leaves me, the intelligent, humorous me hearing second hand from my partner or other loved or trusted ones that they need to be away from me, that they won’t be around me so much, and I can’t understand why, I don’t know what it is I need to change. And as much as they say, “It isn’t you, it’s your disease.” It still feels like I, the friend, or companion, or lover or partner, am the one who is being left behind. Because so much of me is starting to be taken over by disease, by this disease.

There was a time, when we talked earlier in life, that if we reached a place where I knew that I was hurting others, that I could not reasonably enter a home care facility, that I had cognitive facilities but that I was aware enough to know I was hurting those I care about, it was time. I don’t know if that is true of this moment or month, but at what point do I wait until the memories of those closest to me is that of a overgrown and highly intelligent child: unable to control emotions, overreacting, often reacting for extended periods and then forgetting and starting all over. How long until they begin to hate me, and that memory is all THEY have, while for me the recent past is gone, the middle past is spotty. I know more about high school than I do about last month; and I know more about Los Angeles than I do about Victoria.

Some of this is vanity, I admit that. I at first would not be with Linda, partner with Linda because I knew, being human, that I could not help one day but hurt her and make her cry. And if I could not live up to the perfection I felt she deserved, I didn’t want to be the one to make her care, and then cry. But I grew, and Linda grew and we fought for our relationship. This isn’t something I can fight. This isn’t something I can “work on.” Because even if I talk and talk and decide I am going to be different in way X, in a day or two, I will remember nothing. I talk before sleeping because I do not know upon waking if I will remember what I said before laying down.

Perhaps this, like many things before it (Oxygen deprivation, muscle wasting, fatigue, pain) is just the cycle and progression for this month, for this time period. I hope that is so, because I can hold on a lot longer as a clear headed person remembering Linda and the life we had together while my body fails, than I can as a person whose mind, emotion and reason fail leaving the body to falter and fail after draining the energy and patience of all those who had, before the nights and days of care giving, cared for me.

I will continue to communication, day by day, day section by day section to Linda and Cheryl and others. Asking what have I done, what am I to do, who can I send a postcard to, who should I send a surprise to, and have I asked Linda to do anything with me recently as a partner instead of a caregiver?

I am not even sure how it is done; do I look at pictures and try to remember things and write goodbyes. Do I have a party? Or is there some line of decision when I cannot remember the daily routines, cannot remember the morning, the last hour where I say, “This is it!” and how will I know THAT is a rational decision. Because even if I make the rules to that line today, I will not remember by weekend. Already I have no idea if I am posting the same posts on my blog, if I am having the same conversations about the same things to people I meet, to people I see regularly, to Cheryl, or Linda. I know that I do, as Cheryl and Linda at least will tell me, “we did this already.”

Is it when I recognize Linda less as my partner than the times when I do, and who, besides Linda or those around me would tell me? How am I to know? I only know what I know from picked up conversations and “But you remember this weekend, staying up until 5:00 am!” But I don’t, I don’t remember Monday really, much less Sunday. And so this post has to be written today before I forget that I am in some ways not the person I thought I would always be; that I am childlike, yes, delighting but also highly fluctuating emotions, with no understanding of the pain that I am in, or the limitations that I have.

I have not hurt people, at least not physically or deliberately, I have not said anything to deliberately hurt anyone so there is that; though I have hurt those I care about because we are so close that my emotional reactions are painful to them. And there is no cure for that, it seems, not for my disease.

But I fake very well don’t I. Except to those who have to clean up, and cuddle me and find me as I live now. I am afraid of things but not knowing why, afraid of care givers coming in but not knowing why, afraid of noises, of phones, of so much fear but not remembering the incidents that created the fear.

And worse for me is the fear that I WILL become someone who hurts others. That I will stop caring, stop knowing how to care even for myself. Time to go, then, but when?

My progressing Brain Damage #1 accompanied by Oga and other beauty

This is a post about my brain and the destruction that is happening to it. A destruction that seems permanent and no matter how horrific or terrifying I find that statement to be it doesn’t make it go away. I am putting in pictures from the double width page Oga Exhibition Catalogue, 268 pages shipped from Japan of an Exhibit, now finished of his complete work, and a Catalogue in Full and breathtaking colour. The first picture is a three double width page large display, a foldout starting his work (and a few pictures of other pretty things).

How do I begin? Because for me there is no beginning, there is no day, or week, or month, there is now and soon, and tomorrow sometimes, and sometimes literally just “now.” And when I am in a better state, I am able to articulate or try to explain to Linda how she needs to talk to me, which is to use simple sentences that do not refer to time or things outside of my memory. I need this because otherwise I will become worried to the point where fear overcomes me and I may be curled up because I do not know what “We have some bills hanging over our head but that should be okay by December” means. I know “Bills” and I know it is my fault and I know “hanging over head” and that is all I know. I don’t know what to do, I know that Bills must be dealt with and if they are “hanging over head” then they are serious indeed. I am frantic and by the time Linda sees me seven hours later I am trying to wheel down to a book store with books to sell or I have already done something. I have sold something and have $12 and I give it to her crying and ask, “Is this enough? Will this stop the Bills?” I do not sleep. So she needs to say, “Everything is okay.” Or “I am glad you bought that gift for XXXXX but we need to not buy much for a little time, okay?” and sound calm. And then say that again tomorrow or the day after because I cannot remember beyond five days, or what used to be five days, only now sometimes it is three days or less. “We are going to not buy anything more for a few days but everything is okay.” She says a few days later.

Do I know that being talked to like this makes me sound like a child? Of course, and people who are intimate with me say things like “while you might be not as smart as you used to be you are still one of the smartest people I know.” Which hurts. A lot. Because I spent my life obeying what I believed what my calling, my vocation, my onus by God, to use the gift given to me, of a unique mind that could remember almost anything. As Linda says, “There wasn’t a word or phrase however obscure I could say that you couldn’t talk for an hour on the history of or how it came to be or was used in history.” Which isn’t as boring as you might imagine as I delighted in the obscure like the rich who used to advertise for hermits to go with their “follies” (fake castle ruins, that they built; which wouldn’t be complete without a mad or poetic hermit to go with them).

And I am not a person who sits in my 60’s or 70’s or 80’s and realizes that a bit of blurring on the edges is inevitable. I am a person in my 30’s who has had a partial stroke in the right temporal lobe (it is believed, and all evidence supports), and now has seizures there, big seizures which PERMANANTLY destroy even more of what is already damaged. If not for Linda, Cheryl, my workers, the computer, my wall charts and other systems, the damage would be affecting my writing and my life more than it does. How do I know I want a punk backpack and now one with wings from Japan? Because I think about it EVERY DAY (it is literally re-imprinted daily). Things that are important I have routines. I also have sheets Linda has written and posted in places telling me what my routines are. What do I do to get to go to bed? It is written on a list, is #2 done, okay now on to #3…

See, I can’t even tell if I have already written this in a post for everyone to understand. But I have good days and bad, and I think this is a good day.

This lack of remembering is in a way why I am putting up pictures of beautiful things, because the things I remember best are those I am most emotionally connected to (I might remember the pictures and thus remember this blog). But yes, I forget Linda, and on a regular, almost a bi-weekly basis. This is painful for her, I know, and for me, because I pretend later, that I cannot imagine what it might be like for your partner of 15 years not to know you. What should I say, “Sorry about that TIA/mini stroke I had that night where I forgot you for two days.” It is only recently that I am now back to the present, or so they tell me, since I believed it was 2003 after another seizure. But with only 1,000 words or so, you don’t see what I have been hiding since…….haha, see, I don’t know. We argue, Linda and I: I say I have know someone for “years” and she says, “Since June”. To me that means almost the same thing except that it wasn’t as recent as June because June was very, very recent, and only now and then can Linda and Cheryl convince me that it is NOT June. I am not sure why I think it is always June or 2003 but I do.

Today and yesterday I asked five people “What IS Thursday?” and only Linda was able to answer me. She showed me on the graphs she puts besides my computer where she was and where I go and who comes and goes. I point to her sheet and point to 10:00 am and said, “I called, you not there, not Thursday. What is Thursday?” She said that she was different but Thursday was here. This is a concept I cannot understand. There are a lot of concepts I can’t understand. In fact, I can only write this because I haven’t HAD a seizure in three days, because time before and after a seizure is forgotten, and the mind retreats and I retreat. In my recent seizure which turned into a TIA (which is a micro stroke), which I can remember afterward, I woke up in an apartment I did not recognize. Linda was there but not Linda, a different Linda. And I came into the middle room with the computer and the computer my hands knew how to turn on, though I did not know how they knew that. It asked if I wanted to play a disc, and I did, and a show started playing.

The phone rang and there was someone on there I did not recognize so I dropped it. Linda was not here. There was a lot of mess. The counter was covered with things, and there were wheelchairs all over. I was very tired. Linda showed up. She said she was at lunch. I asked her why I wasn’t teaching. She said that I was sick. I said does that mean I wasn’t going to get any substitute teaching jobs until I was over the Mononucleosis (a disease which makes you tired for a month or so, easily caught at uni). She tried to explain that I was sick longer than that. I gave up listening and she could see that because my head was hurting. She told me I needed to use the wheelchairs. I said, “Isn’t this a bit much for mono?”

She laughed in an odd/funny way and then got me lunch and I fumbled with my hands, I must have been more tired than I thought. As she left she asked me what year it was and I told her (2003), and she shook her head and said she would see me in several hours. I watched the disc until it was done and then I went on the internet which was much faster than I remembered. But then, sometimes when someone would ask a question, like on the blog, I would know the answer but afterward my head hurt and I couldn’t remember how I knew that. I couldn’t remember what I had just written (which is on my left side of my brain) and when I read it back it sounded like someone far more sure than I would say.

Sometimes there are days that I cannot go outside or someone has to be with me to stop me from trying to go “home” wherever that is that particularly time (in this picture you can see Kiki if you look closely, from Kiki’s Delivery Service, running up the path home – Do you remember Lene, I still do?).

I also have emotional liability, which means I have extreme emotional responses, sometimes from nothing at all. I am not sure if I have talked about this. But for example, I have cried through almost two complete toilet rolls for no perceivable reason. This isn’t depression because that I can remember. And sometimes I am very content for no reason, but that is less often, because there are always so many people who want answers that I don’t know the answers to.

I spend my time getting postcards ready for people I cannot remember. I have to look up each persons' name on the computer and cards and read all the text and get a sense and pick the card for them and then do the next person, all 30+ cards. And when I do the wood blocks and the rubber stamping, I have to do it all over again. And when it is done and I put on the stickers and write the note, I send it out. One of the reasons I take pictures is that I have no idea how many postcards I have sent out. Cheryl I think estimates it is about 400-550. I don’t know. I don’t know how many “surprise” presents I have sent out or to who, I think it is 50-70. Maybe more. Now that I have no money I just use what is lying around. Which is the other reasons of these pictures is because I will keep things and then I will send them off but because I don’t know that I will remember a week or a month later and want to see it but I gave it away. So like a butterfly, I must appreciate what is around me, which is why I try to surround my desk with things that will appeal to me and stop me from looking elsewhere. I sometimes buy things like this A4 holder about the Anime show Air TV, which I can relate to far more than I would ever want to (“Gao!”). This I traded for, so it cost me nothing at all, actually I got some postcards in the deal which I sent out.

I think what I was saying is by the time I get the thank you from people for the postcards, I have NO IDEA what you are talking about. Please don’t stop from emailing me, because it is the way I know I am making a difference. I try to fake it in a reply but if they are happy then I am happy because the part of me that had a brain that day did good, even if the me of today can’t remember. I have a list, or lists for the weeks of the post and gifts that are sent and this week and maybe last week, I can’t remember, but there are ticks by some names so I have been trying to send out thank you emails to people. I am sorry if it is weeks late or only a week later, I don’t know. Sometimes the lists Linda or Cheryl make don’t have dates. One week Cheryl brought boxes and then we were busy all weekend and I simply didn’t open them until she returned because I could not trust myself to open things by myself, not to get them mixed up. I need someone there, someone with a REAL brain, to remember what came from which package.

I appreciate every piece of post and every gift, and I try to write back how they are emotionally remembered by me. And I hope that if you sent a gift you got or will get a email about that. But you can see why for me, I cannot carry the obligation of financial issues. I simply am not mentally capable anymore. I can work at making people happy, people who I may often forget until I repeat their name every day or every few days. Or people who make a strong impression. Or I will have a seizure after I open the gift and then forget and receive the gift all over again. Which makes it sound very romantic, like Totoro here from the movie of the same name, making the sound of the wind, creatures of the wild, of myth, always existing in the now.

Except in THIS WORLD I have to be watched all the time. I have a lifeline phone with reminders and the phone will NOT stop telling me there is a reminder until I push the big button and then Linda’s voice comes out and tells me exactly what to do. And I do it. Because the person who is MOST likely to overdose me is ME. I can’t remember 10 minutes later if I took a pill.

Is it great that the people and places I go know that I am brain damaged, that I “Used to be someone”? No. It is not fun to have a 20 year old snidely remind you that you took out that DVD last week, and “You ranted about how bad it was for 10 minutes.” And I have to smile and say thank you and find something else. Because I will remember the story: stories I remember.

I guess this is the end of part 1 of trying to explain what it is like to be brain damaged, and I REALLY hope I have not done this part already. Next time I will try to explain the idea of language schema and how exactly my language center is damaged and how sometimes I can fool people and how and why it becomes obvious. The fastest way is just start asking me questions, and I think I am speaking normally only I am speaking slowly with mixed word or “word salad”: words that start with the same letter but mean something else altogether, or I just get stuck and start stuttering, or I look around in confusion. And people turn and start talking to Linda because what is the point of talking to me, even if I CAN understand them. Except sometimes I can’t and I say, “I don’t know what you mean.” And sometimes they say it over and over and I keep saying “I don’t know what you mean.” And they get angry, this happens with Time a lot. My care worker stopped getting angry at me and now says, “Today is Thursday and soon you see Cheryl and then I come back.” Which I can understand. I still have a high IQ, reason and deduction, I just can’t understand sequencing, and I don’t know why, but knowing that you can’t understand something doesn’t make you understand it. I wish it would.

Oh, if any of the pictures here end up in a package to you, that means I have emotionally enjoyed them and am giving them on to you. It is okay to get them, and if you don’t enjoy them, please send them to someone who does. Because I am trying to send you the feeling I get, not just an object. It is a form of communication.

A bad day for brain cells, a good day for trying medical equipment

I regret to say that much of Saturday (and I guess now a bit of Sunday) has been, healthwise, a disaster. I have had more seizures than can be counted.

I also stopped breathing for an extended period of time. Extended being about 25 minutes off and on (though thankfully we have an ambi-bag which breathes for me).

However, so many seizures and the results of them (no breathing for example) mean certain brain damage. But lets just say that 80% of EFM or a percent or two less of EFM is still plenty to go around (That is the opinion of Brain Damaged EFM, which we will now refer to as "EFM Lite!" - see, still can do the sick jokes).

However, I and others have already noted speech and other cognative difficulties. Let’s hope they go away (brain damage is like the flu right?). I also, in a great deal of pain and frustration, helpless in a body that left me staring at a patch of ceiling for a great deal of time, let that frustration get the best of me and while briefly ALMOST functional (like I had four fingers working, two on each hand) was stopped by Linda and Cheryl from overdosing on pills. At that time, tired, hurt, and after several series of seizures, I wanted out, I wanted to die while I was still me.

I might point out that while the sentiment is understandable when one continues to experience wave after wave of physical slamming and chipping away at my brain, the entire 10 seconds of deep consideration to terminate, I now consider a bit rash. Linda suggested I go to bed (Translation: Linda put me in bed and then drugged me into a sleep), and think things over.

Right now, I still have minor seizures almost hourly and high levels of heart pain due to the erratics and the general weakness of my system.

I do however want to say Happy Birthday to Dawn and to say that I still got that last bit of your present and now your birthday present has been prepared and is awaiting the postal officer! Ha, I can be suicidal, in seizures, have crap health AND get stuff done - talk about multi-tasking (take that Martha Stewart!)

I am going to rest now, I have answered the comments and will continue to do so. Even during the bouts, or rather between the seizure bouts if and when I a) know where I am, b) know what year it is, c) Remember what my blog is and d) Have enough strength in my hands to type, or hand to type, or finger to type, I will sent emails and answer comments. I have always been a doer and that is how I want to continue. Linda was right to stop me (from killing myself). I wanted to “fix” my problem and choose an easy solution. I was overly emotion and exhausted at the time. Now I am just extremely emotional and exhausted. Seriously, I broke down in tears today because I had to fold up the $400+ special walker that we waited months to get, and now, is folded and put away after a few months of morning use. Linda has said, “We can recoup that when we sell it to your parents.”

I said, “If you expect me to live SO long as to the day my parents admit their need for assistive devices, you REALLY are an optimist (my father talks about having to come down the stairs holding the rail one at a time, and due to his nerve spasms, spending the first hour or two walking into things like WALLS, and COLUMNS and TABLES and yet doesn’t see any need for a walker, nor understand why I think a split level apartment might not be a good long term choice).”

I will do what I can, when I can, and I guess the rest is out of my control. I am going to TRY and take it easy, in the “take it easy and not have a seizure series every four hours” plan. Don’t worry, the whole “going to go off and do badminton or the Terry Fox run" plan is still on. Just, not getting upset, not talking to Beacon or the likes of them. Taking it easy, trying to get strong enough that a few heart erratics don’t keep making me pass out…..I think it is good to have goals!

Seizures and Memories: Elizabeth

Yesterday, my nap ended as I woke to my arms in spasms. I called for help. Linda and Cheryl came. I knew the memories that I had, the smells, sights and presence of 1987 pouring over me like a waterfall let loose. Memories so overwhelming and powerful that they washed even the comments Cheryl had said hours earlier, that I had been college, that I had been married, until they were shadows I could barely see.

Where I lived, what I smelled, and heard and felt was the fear of living in LA, of a world were people were kept in Beirut for years, and no one ever told me why, and the Soviet Union was looming, always looking for some way to advance the revolution. I was an obedient child. I didn't get in trouble much. I wanted a treat, a new health food, the Frojurt (Frozen Yogurts) up on Lake Street, Pasadena. I wanted to go shop at Trader Joes, or go to Macy’s. I knew the terror of five to seven helicopters coming in a silent V formation dropping a sheet of Malathion, whether you were inside or out, leaving cars pitted and pets dead behind them. I knew how to get to level four of Qbert and level 5 at Frogger, but I always messed up the last “home” in the top right corner because the logs moved very fast and I jumped my frog too early.

But I wasn’t there now, I knew that, I was here, and here was where I belonged, though I couldn’t really remember much beyond that. I was an adult now, but I remembered that I had spent hours talking to “adults” as a teen, calling Linda “ma’am” and minding my manners. I did not question ‘adults’ asking me questions because they were adults and I wasn’t. Being a teen was about people calling you in and asking you questions about your future, about what you where doing, what you were reading. I had told them about Typing Class and how I had done all the extra credit assignments and was getting an A, and what books and authors I was reading. I remembered them trying to say this was my place, which was so funny. I was a teen, how can a teen have a “place”? And all this stuff, a whole collection of things, a teen can't have that, not what was beyond what can be stuffed under the bed or in drawers or the closet (for room inspection to determine if I could go out this weekend)? When they told me that it belonged to the lady there, Linda, that made more sense. Adults could be messy if they wanted to, they had places, apartments. I waited for more questions, and wanted to know when my parents were coming to pick me up. I talked about how I got yelled at when I spent too much time on my Atari computer.

Only now, I had napped and was awake. And could see and remember one world but I knew I was in another. My arm started to shake on it’s own. “What is happening?” I asked.

Cheryl said, “The heat, maybe the dehydration, it’s causing another seizure.”

Another seizure, more pain; my arm was twitching and flopping as individual muscles in my arms seized or acted as nerves fired. I was having a prolonged neural storm. The heat was a trigger, but my nerves were firing independently. During the seizure, they had removed objects from around me, in order to stop me from hurting myself.

I was exhausted, not tired as I as just woken but like I been placed in a centrifuge. We talked a little, enough to confirm, I knew I was in Canada. But 1987 was still there, and my head hurt. Linda wanted to touch me, to rub me, comforting herself that I was back, or some part of me was back. “Fire” I told her, every time I was touched it was like fire lighting up in my brain.

Then the fire hurt more, my brain hurt more, and my right arm locked, my face started to writhe. I pointed with my arm to a book on Superstitions. They opened it for me, I pointed to snakes and my face. And they understood as my face was changing, writhing, contorting on its own. Cheryl said something like, "Independant face contortions." I pointed to my belly, and Cheryl placed her hand there. She said later it was taut but like a skin over a bowl of snakes and the muscles were not acting like muscles, acting together but each having the nerves and firing independently to twitch, to flop, or writhe between two other rigid muscles. I passed out.

When I awoke, I begged the two of them, to stop this, a seizure every few minutes. Please, stop this, this helpless violation as the control of my body was given over to an invisible and sadistic puppet master; leaving me to wake with the consequences. I drank 3/4th of a litre of Gatorade and some caffine. Anything that might work. I waited in case the nerve in my stomach decided to projectile vomited.

“What is that smell of burning?” I asked.

Cheryl said, “There is no smell.” She looked pointedly at Linda before asking, “What do you smell?”

“Well, it is more like a taste now, a burning.”

Cheryl said, “People often report that before a seizure.”

“No…” I begged her, with my eyes, with my mouth, she was sitting right there. She couldn’t let this happen to me again, not just after I had done everything, not just minutes after the last one. Please…please…...save me?

And then the Grand Mal hit.

When I woke up I couldn’t use my right side but I could use my left hand. I was signing questions, doing ASL better than they had seen me do it before. In 1987 I was an ASL interpreter: and what I knew in 1987, I knew that afternoon.

My body was cooled and I started to recover but things, from the big to little were gone.

I looked back on the day with humiliation and violation. Not by any person, but by my brain. As an adult, who would want to reveal every thought, every intonation, every immature black and white thinking of being a teen? And yet, I was that, for hours, because that is who I was; from the fear, the terror and listening to sounds, as sounds could save your life in LA. I spouted my juvenile brainwashing, and bubbled my teenage reading tastes all discussed with an openness that precluded the ability to chose what I wanted people to know about me. Because I wasn’t me, I was the me of 1987. And I had been taught to obey. And as open as I am on this blog, I would have preferred to chose, to make context than just have my spouse and my friend/adopted sister see WHAT I was; without defenses.

That was followed by having my body, seizure after seizure again and again. I couldn’t even stop my right arm from flopping around between them, just cover it with a blanket. No, it wasn’t sexual but it was a violation, a removal of control of my body and my mind. No one’s fault, but the feelings of shame and humiliation remain. I feel them, I remember; of looking to Cheryl in desperation and pleading that she STOP this, please. If she loved me, then just stop it...somehow.

With the heat wave, and the lack of sleep reserves, along with being active and talking; all of which seem to be triggers, I had two more seizures this/Sunday morning (though I can’t remember them, because I had a couple more this afternoon). Clonic/Tonic, petite Mal, Grand Mal, heat stroke, Neural storm: I have seizures in my sleep when it gets warm. I lose time, I lose memory. Did I have another stoke this weekend? I don’t know, I know I had a stroke earlier but I can’t remember when it was. I will be glad when this heat stroke is over and I can talk to someone without risking a seizure.

I’m watching an anime, it won’t be in the US for many months if not a couple years. It is called Ef: A Tale a Memory and involves two female twins, one who goes to school and another (pinked haired) called Chihiro, who does not, she stays alone. She goes to an abandoned train station and reads. There she meets a boy named Renji. When he says he’ll see her tomorrow, and she see him tomorrow, she starts crying. After day and day of spending time together Chihiro tells Renji that because of a car accident she lost an eye but also her memory doesn’t last longer than a day. She talks of the “me” of today, and the “me” of yesterday. She talks of reading her writing, her diary to know how to interact, to know what people expect of her.

To hear someone, even a fictional character saying things that I have written, have felt. That it would be better if I was removed from society so that I would bother people less. It is such a personal and bittersweet pain that brings me to tears.

I cannot watch much of this series at a time, maybe 10 or 15 minutes. Chichiro has a dream, that she can write a story while being “me”, a single person, with THAT current memory. But there is struggle, and pain because those around her, don’t always understand. One day it is pouring rain so hard that Renji decides that no one, not even Chichiro would go to the station in the rain and he stays inside. The next day she isn’t there, she is sick. Her guardian comes and tells Renji that she came and stayed until midnight because it said in her diary: “Renji said, ‘I’ll see you tomorrow’ Renji is my friend”

She spends her morning reading her dairy, and the afternoon remembering and repeating to herslef what she wants to remember in the morning, what things are important, that she was in an accident, for example. And when she wants to self harm, she only has to rip out pages from her diary to make cuts deeper than knife wounds to her mind, her stability. This is a short two minute AMV about the series, which is titled Stand in the Rain. The title means, that when you cry, Stand in the Rain. We cannot stop the pain; the emotional or the physical. But we can choose not to be stopped by it, to cover our tears by standing in the rain. Or we could be stopped, but that won’t stop the pain, or the tears.

I likely won’t stop begging when the seizures come, or stop feeling the fear in my gut, knowing that my body is not my own again. But I either face and admit I have the fears, the shame, the feelings of violation, or I hide away.