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.