Many Seizures, a TIA, resting

Didn't recognize Linda for a while, better now. Three Grand Mals last night. Mini stroke while napping this afternoon. Resting.

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?

Elizabeth: the year in video, a gift from Linda and Cheryl

Linda and Cheryl made me a present. I could tell because when I woke up, they were always running off chortling into the other room, all over a few weeks. Very pleased with themselves. They gave it to me this weekend, and I wanted to show it to you. I am not sure where they go SO MANY bad pictures of me but if I hear you using any as screen savers (the bad ones, the good ones help yourself), I will be heading towards your city and your computer baseball bat in hand.

It made me happy, it made me nostalgic, it made me darn confused (some of the pictures I am in, I don’t remember AT ALL), it made me wish they had let me vote for some of the pictures. But this is a picture of Elizabeth from two people who care about me, and have seen me in good times and bad. Some new readers haven’t seen many of the faces of Beth (the not so great ones), or how much weight I have lost, just in my face. Of course the dark faces, the faces of hell and pain, they are too busy doing things to take pictures. Sometime recently parts of my hands turned black in a matter of a couple minutes. My face was terror then, and calling for help. I don’t know what happened after (probably seizures or something), but there is nothing like watching your hands turn shades of black over 20 or thirty seconds. But it is in the end, I think an interesting mirror of me. An interesting mirror more of Linda and Cheryl who are there, caring for me, being there so I can be there, always watching over me: My companions.

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!

Hospital Trip

In short, my trip to bed was delayed last night because of a series of seizures. When I was awoken four hours later by the workers starting early on the roof by working directly above my head for the third straight day the seizures continued. Though I had been given a valium to help me sleep through the work on the roof, when someone starts pounding in nails in your ceiling 60 seconds later, it is hard to fall asleep in the .5 second breaks it takes them to grab another nail. My care worker seemed to be gone, Linda was down talking to the manager (who had “forgotten” I have to sleep every six hours: she was the type were you say, “But can we ask them what their plan is, since they have STARTED over our apartment for three straight days?” and she replies, “This roof is for everyone.”)

I did not know when Linda would return and was too weak to move, I felt an aura coming (the precursor of a seizure). The fear that I would be left alone and paralyzed while seizure after seizure occurred frightened me to the point that I hit the life-line button on my wrist. Because Linda was not there, nor could I respond an ambulance was sent and I was bundled up, nightie and that’s about all; into the ER van. After pushing the button, I did have a seizure so could not speak to the ER people. Linda was again, not recognized at my partner, though she announced herself as my medical power of attorney but neither of that got her past the first line of nurses into the ER, an hour later she bluffed her way in.

Apparently in the unloading bay, according the ER Physican Assessment, I had a clonic tonic seizure in the ER waiting area, was given Adovan. Followed by another seizure in the ER while on monitors (more Adovan). Blood was drawn (using Emla), and the anemia was confirmed, I was given Adovan for home use until I could see my GP and the Lyrica was approved for use until a seizure specialist could see me (oh, how many months?). Then back home….to the roofing, with still a few hours sleep. The rest of the day has been sleep and recovery. The roofers ARE here tomorrow and all next week. I HAVE to hope that this is not a daily occurrence. Much of my memory of ER was wiped by the seizures but this I know: One of the attendants turned to Linda and asked me, “So is this your mom?” Yes, I may be terminal, have no sleep and be in ER, but golly, I look YOUNG!

I will try to reconstruct more off the physician record tomorrow, today was survival, banging, talking to a manager who despite having three witnesses, two standing in front of her assures me that the contractor who is NOT at the site assures HER there is NO way the workers are starting before 7:00 am. Linda offered to call her up to our apartment Friday morn when they start but the manager just closed the door. Odd that.

Am I a liar?

You remember the saying about not listening at doors because you might not like what you hear? Well, recently that is what ‘trackback’ has been for me. Trackback just tells you why people come to your site and sometimes/often it is a little odd. For example my Hello Kitty Yuzen pictures got some links from Hello Kitty enthusiasts (Hello Kitty in Kimono and Fan, Squeee!). And my pics of Kakunodate got mega hits among a forum dedicated to tea. This was because I was shooting pictures of examples of the bark art (It was pretty!) which happened to be tea holders. These specific holders are collectibles for tea lovers because they come from only one place and I happened to be in Mecca, as it were.

But then there are the times I find out that I have been linked to Devo sites (devotee), which doesn’t happen anymore as Devo’s like frail, crippled but LONG LIVING girls to drool over. But recently I have gotten a slew of hits from a couple places where people are concerned about me, my condition and posted about that. And the response there from some/a few people who come/came to read the blog by some has been (I will summarize instead of quoting): I don’t believe it. She may not be making it ALL up but how could someone be so sick and yet post so long every day? How could someone have brain problems and say they don’t remember stuff and yet have such coherent posts, which are perfect? It just isn’t possible and I think this is someone who likes to write and is making this up, like a story.

So after the slap in the face, how painful it hearing that? Well, after telling the personal and often humiliating intimate details that really you would rather people not know about (like telling people you are about to pee your jeans and their living room floor), or having a fugue state when you mentally are 17 and giggle and make embarressing statements, or when you post pictures (not that flattering, and showing hair loss) of yourself in various vulnerable situations to find out someone who reads, or many people who read think you are not just a liar but an amusing storyteller? It hurts a lot.

Linda was not amused when she saw it because she says that things like this “get into your (Beth's) head and they just don’t stop hurting.” Well, true enough.

What hurt me the worst was that the “tell”, the part that gave away that I was a liar and a fake was my posting every day; and the nature of the posts themselves.

See, because once I make a commitment, I keep it, regardless of circumstances (if humanly possible, and at least try if not humanly possible). And my commitment has been to post once a day and to reply to every comment; and for the most part I have done that.

What started my recent post, A Letter on dying, was the reality that everything from the mundane like dressing and getting a shower, to writing a post, were things which once took a short time but now was now taking ALL the time.

Anyone who has read the blog over time can recognize that my style, or rather the eloquence I once had, I do not have. Before I could make you cry because I was a writer, and I wrote out pieces in my head, including timing and that skill was honed after more than a decade of writing 1000+ words or day, five novels and who knows what else. Now I tend to write in declarative sentences and try to get the story out, which may still be powerful, often because it is about a real person and I attempt in writing and edits to tell the truth as honest as possible whether painful or not. I don’t have the same language skills, though my writing still far outstrips my speaking (depending on the schema), and until the TIA’s and seizures stop, I may never get back what I lost. Some days are better brain wise than others, and a few times since the big Brain go Boom, I can still do a blog of research or bringing diverse things together, but that norm is now an anomaly. But I did, as far as any human could do, keep to my commitment.

I have written with one finger when that is all that functioned. I have written with one hand, or the thumb and index of both hands, I have had Linda reading out what she sees on the screen because I can’t see correctly (neuro issues). I have dictated posts. I use a speech program. I have had seizures and been on the floor and started writing from there. I have had days which had seizure after seizure and instead of going to bed, to sleep or rest, be it midnight or 1:00 am or 1:30, I write, as long as I can see, or someone around me can see, and I can put three words together in my head or type it, I write. You can go back and see some posts were put up at 1:00 am, some at 2:30 am, and a few at 3:30 or 4:00 am. I do not sleep until the job is done.

Writing and posting are one of the few ways I have to demonstrate or feel I have control over a disease which has and is taking away the most basic and fundamental aspects of control. I have lost or am losing the things we don’t even think about because we are so used to controlling them including eating, sleeping, breathing, drinking, talking, how well I think, limb and digit control, sweat, heat, bladder control, fecal control, skin falling off, hair falling out, nails falling out, wounds not healing, blood coming out of orifices and non-orifices to name a FEW.

And yet, even with all my “You are NEVER going to stop me” determination to post, it wouldn’t be enough were not for Linda and other people, like Cheryl but also night care workers who have assisted me. Often to write a blog I need an account from Linda, “What did you see, what happened? What then?”: then I call or Linda calls for me who ever else was there I call and get an account from them. I combine this with what I can remember. I look up anything I am not sure about, or write around it; often having to go back and read my own blog posts I can’t remember writing. But oddly, I trust that I am narrating the truth, so I use that info. Then I write.

Now my grandfather painted for several decades and liked watching wildlife, and in his older years, he couldn’t always remember things, and even after he had a shunt put into his brain he liked looking at ducks, and other animals and he knew how to paint. I have dedicated my life TO writing, and every day I spend time reading and watching shows, saying words I see (subtitles) or read over and over again. Because I know that my best chance of having a sharp brain is making the connections I need. Sometimes I cannot write, or speak and I post nothing at all or have Linda write. But if I can think, I can write. A person I know was thrown off a snowmobile so hard his helmet strap snapped and the helmet flew off. He was found after who knows how long. He wasn’t able to speak, and last I heard, still can't, but with the help of a computer, he is able to write.

My Brain? I don’t have front lobe brain damage, but some form of left hemisphere damage and a limited right hemisphere damage. How do I defend or even write about what I don’t remember, that seems an oxymoron to me. But actually, due to memory loss, certain aspects of things I studied earlier in life are more accessible to me (much as for older people the tastes, smells and memories of candies and other objects from childhood become vivid). Most days, I remember very few people, on bad days next to no one. I suppose the cynical reader could call up Beacon home support and ask them for the incident reports from care workers on memory…if you want to be an invasive asshole who cares more about whether what you think is right than my right to privacy and dignity.

When I write a postcard, I have a name on a sticker printed by Linda, I look up the name on the computer and every comment or email the person made comes up and I read them (this is why it takes 30 minutes or more a post card). Once I have some idea of what to say, I write the card. Often within a week that memory is gone. For example I found today that a response to the last comment of Frida's about heart rates was answered in a post on her blog from what Linda says is recently (one hand of fingers). She talks about her meds and her heart rate. I see there are comments, I click on the comments, my face pops up. I was the comment. I am talking about cocaine, so that SOUNDS like me, but do I remember it? No.

But then, how many of the disability bloggers out on the net write about their disabilities in exacting degrees with pictures. Not many. And the point isn’t that I need to prove my disability/disease or not, but that of instead of someone taking a shit in my hallway, my private place, I went out in the wide world of the web and started posting this stuff. And apparently ON the wide world of the web you are free to attack individuals and call them liars because golly, how COULD they be in so much pain, and so affected and still keep going? How could they, with only a couple good hours a week convince the people who care give to help her do wild and crazy things (or actually “normal” things which would have been but a small, small part of her life before getting ill). So while I go and DO things instead of stare at plants or whatever us fucked up disabled dying folk are supposed to do when we have energy. That makes me a liar? That makes it "not add up".

I was told by the AIDS group at Pride, after I wheeled across an unaccessible hill to go find “a support group” and essentially get away from them and be with ‘my people’. (My people?) Where do I find a one in a million presentation like me? Or that support group (on the net it turns out!). So, yeah, got dissed, got told that AIDS groups aren’t interested in people who are dying, because AIDS is all about LIVING (I’m actually quoting here). Since I was in California in the 80’s, I find that kind of response along with the "I don't know where dying people GO" to be pretty much what Reagan told the people WITH AIDS, didn’t he? Go back to ‘your kind’, and stop bothering us because America is all about regular diseases we FIGHT and about LIVING, and TAX CREDITS, and WARS, not about YOU (and your wierd and scary disease). The one thing PRIDE taught this year is that in this town, when it comes to LGBT, you die alone.

Anyway, back to me being a creative liar. The thought of people reading my blog as some sort of work of entertaining fiction makes me feel ill. I suggest those readers head up to your oncology hospice if that is what rocks your boat (they just vomit to make it look convincing!), but get the fuck off this page. I can’t make you go, but I can say what I think about a person who would rather believe a person is a creative liar than a brilliant woman with a rather fast and horrid terminal disease who refuses to let any obstacle, even the gaps in her own mind stop her.

So it seems some people can’t believe it (the me, the posting, whatever). Well, let me tell you about my friend Terry Fox, another one of us liars. He ran an average of 23 miles a day on one leg, and a homemade prosthetic.

In his last weeks, for over a month, he ran and then crawled into his van and sobbed, because of the pain. Sometimes he couldn’t leave the van in the morning because he was so tired. He cried and then would get out and run. Finally, he stopped because he couldn’t breathe, and it was found that cancer was in both of his lungs. While in the hospital, though he could not run, he outlined and worked with Isadore Sharp (President of the Four Seasons Hotel and who gave Fox a room in Montreal) who wanted to create the Terry Fox Run. Terry wanted no winners, no awards just participants and the goal of money raised for cancer. A few months later he got pneumonia, went into a coma and died on June 28th. How could someone have cancer in both lungs and go out running with a prosthetic? How could they feel that level pain of that for over a month? The pain he documented was incredible. How could a person do that day after day? Gosh, he must be a liar, right? Even on his last day, coughing and with pain in his chest and neck he ran, ran his miles before going to the hospital. Even in the hospital he did films for Cancer Canada. Gosh, it just doesn’t ADD UP! (By the way, this is the polite Canadian way of calling someone an asshole, except in the Maritimes, where they just go; "ASSHOLE!").

I am not dead, I am dying; and I won’t know all what I can do before that happens until I TRY will I? And I am not going to roll over and whimper just because I can’t remember some names or faces or years or speak on some days. Maybe what I do, or how I act or that I spend up to 12 hours a day to write a post seems impossible or illogical. So also might be the fact that I have only now just recovered from my Canada Day 10K and I am going to look for another race. But that just shows that you aren’t me (and aren’t we all glad about that, because even 100 E.F.M.’s could be havoc wrecking to ANY city).

And while I have never wished what is happening to me on anyone, I came close, for a minute or so when I read comments about people speculating if this was some grand fiction from an aspiring writer. The people who know me, know, and for those who have closed their heart to others, what is there to feel about THEM but sympathy or pity. And since the post, A Letter about Dying got Linda and I dragged back into the “Okay, we’ll go to the US for a doctor.” Maybe there IS a treatment to delay things. I’d love 18 months: that’s my goal. Because to go to Sakuracon (Anime Festival in Seattle), I have to make it to next year.

As for today I lost speech and the use of my left hand for quite a while. I wrote some emails, I wrote this, and life goes on. It is too hot to go outside. The bed allows me to sleep longer with less pain. That is good. Really good. I’m not sure if I would say it is $4000 good, but still good.

I wish people would understand that having a complicated condition which SHOULD be terminal doesn’t always mean it is (I could point to some people but that is their story). And also that people live their conditions, their disabilities and yes, their dying in their own unique ways.

So is it a surprise that the person who used to climb naked up on her roof might also have to be forcibly stopped from dropping things on her feet because she can’t feel them cause 'it's neat!'. Or that a person who ran 200 km a week as marathon training might have a slightly different idea of what is and is not possible.

When I was hiking I hiked with a couple who at an age something older than 65 (I never asked, not polite) decided to hike the AT. They were doing 12 miles a day with full packs but the husband (both him and wife as thin as sticks), kept saying he had ankle pain. After being with them for eight days, they hiked down into town. His ankle was broken, and yet he did about 100 miles on it carrying a pack over 50 lbs, and doing elevations of several thousands feet a day. She hugged me and cried and we talked. He wasn’t quitting, he was going to drive support for her and meet her at every road until his foot and ankle could support his weight. They would post all the food ahead. They weren’t quitting. Maybe not what seniors and grandparents are supposed to do? They weren’t liars, they weren’t quitters, they were just doing.

One way or another, no matter how bad this gets, I’ll be doing. Post on the blog, postcard, maybe in the end post it notes, who knows. But that’s who I am. Okay.

A letter on dying: #1

Dear friends and readers,

There is no way to make this easy so here it is, I’m dying, and probably fairly soon. I am going to try to use a series of letters about the emotional experience around dying and my thinking about that to share where I am and what I am feeling.

First off, what does “soon” mean? By my calculations I am in the Penultimate Stage; the ultimate stage would be where only machines are constantly maintaining my life and the removal of them would end my life. It isn’t just me but Linda who has been feeling it too, particularly with this new progression of my inability to convert oxygen, even when ON oxygen. As she said, this was the first time I hadn’t come up with some “trick” or way to make things go back to ‘normal’ (no matter how much rest or exercise) and that is when she realized, that my life is coming to an end. Now that could be a couple hundred days away, or maybe if we get the right equipment in time, even longer, or of course, much shorter. The sad reality is because of the medical system in Canada and the exceptionally long delays in certain types of diagnostics and treatments I will almost certainly die sooner than if I had the proper equipment at the proper time. Even now, perhaps IVIG could do some good, make some stabilization but it is a treatment that even if approved would take months to get enough specialists to APPROVE that it was approved. Laugh, everyone, laugh.

It has taken me a couple days to work up to writing this post. I guess in the same way I never sent out the letter to all the people I had fenced with saying that I would never fence again and to thank them for their support and the enjoyment we shared. I wanted to believe that something would be found, someone would care, that it would look like one of those medical shows where doctors seem to give a damn and go around yelling orders and being impatient for results because they actually want to do something. And even after the neurologist told me that the nerves in my limbs were destroyed, permanently destroyed, that I would not effectively walk unassisted again, even if they figured out the heart and BP problems when I am upright, I didn’t send out the letter. I was scared that I was the only one left who cared about that. I am not a fencer anymore. Period. Full stop.

There are physical aspects and psychological aspects to dying. One example, right now is that I don’t buy things for myself, and haven’t for several weeks, just postcards, stickers and gifts. I have accepted that anything I buy, unless it provides months of constant use or joy, will just be another item that Linda will have to deal with once I am gone, and there are going to be plenty of those.

I am tired, fatigued on a daily basis that isn’t seen by outsiders or even visitors. I am also in contant and continuous pain. What used to take me two or four hours after Japan takes me all day and all night now. In fact, approving comments, responding and writing the blog takes about 10 hours a day. But I’ll get back to that. There are the increasing number of seizures and TIA’s (5-10 a week). There is always the threat of another stroke. My heart is failing at a slow but steady rate but the circulatory system and oxygen have sped up in terms of failure. I asked a nurse on the lung unit who saw that I was on oxygen and my fingers were purple, my lips blue, what exactly was the progression, what intervention could they do? As the circulation continues to withdraw and the blood fails to convert or circulate, the oxygen is pulled back further and further, until I am on oxygen 24/7, like at Port Angeles, but I would go into the hospital. At least until a 24/7 unit could be set up at home. What then? I asked. The blue will advance or the black until it goes to the shoulders. And the solution? The only thing they can do is increase the flow; give me a face mask. And after that? There is no after that.

Oh yes, I could go to the USA now and spend a couple thousand dollars of Linda’s money to get a diagnosis. Know of any disease that hits athletic women who never smoked and have healthy hearts but can’t get enough oxygen even when on oxygen? Know a disease that destroys the entire peripheral neuropathy while the person is still alive? That takes away the need to eat, to drink, to take a breath? That makes EACH CHAMBER of the heart individually erratic and the blood pressure fluctuate in minutes from 195/176 to 105/50? That takes away eyesight, and makes your organs slowly die inside you? I am not leaving Linda further in debt because I cannot accept what a neurologist screamed at me, There is no treatment.

Of course, I could stroke out instead, have a massive stroke from a blood vessel breaking down and splitting or bleeding in my brain they way they already do in my feet and the hollows of my elbows. The last few days, I have woken to painful spasm in my leg muscles below the knee. Maybe they are just deprived of oxygen and maybe now the muscles are dying too. I don’t know.

I know I have an auto-immune disease, I know that my limbs and perhaps every nerve in my body is dying or already permanantly destroyed: the axons destroyed. I had an MRI a day or so ago which will either prove my neurologist was right that “nothing is wrong with me and the MRI machine is wrong” and my T1-T-4 is not losing nerve function or that I am. But as I was put in the chamber I was told the MRI would to take 20-25 minutes and I was in there 75 minutes while the head radiologist was called, and they repeated sections and did my C section as well (not asked for). Very um, thorough if they found nothing. Not that would stop the autonomic failure of my central nervous system. If my night system ever fails as my day system does, I will simply stop breathing. I won't wake up. I will be dead.

I have both oxygen bottles AND an ambi-bag (the one EMT’s use on people who aren’t breathing) around me for use by care givers.

So that is the physical aspects, besides that my hospital bed ordered November 2007 and approved some time ago by blue cross is being installed this week, and I will have a special table to keep doing computer work as able. I will spending more and more time in bed. I say that because right now it is only the pain of a poor bed that forces me to transfer to the better computer desk chair. That too is being replaced with an electric chair which will include seat belt and neck support. Linda is ordering a portable oxygen concentrator. I need these things, Linda and my caregivers will be happy to see them.

Psychologically I can’t say I am in the “acceptance” stage, but I am also not an idiot. I have a box of the mail I have received from people organized chronologically. Because I do not understand time, it helps me if and when I have extra hours to make sure people get a thank you in the order they arrived. Also, I need to look up their name on the computer if they are now in the “blank space”; and please don’t take it personally, Cheryl has often ended in the blank space or ended up with another name altogether.

I have just come to realize and accept, with frustration, that I likely do not have the time to write those thank you notes. I don’t have the time or strength to get the Ebay auctions together for anime. I have books I have saved my life to read and now, even if I turned off my computer I would not have time to read them all. And the ones I read, I would have no one to talk to about them, no time to write a paper, and if I did, I wouldn’t be here to see it printed.

Before I was playing at dying, sure it was dangerous but I always had another trick and I knew the day would come when the tricks ran out but that wouldn’t be today so lets just go on……except, well it IS today. And what will it feel like in 100 days when summer is over, and I will not have the strength to go places but rather be ‘taken’ places. And that is a major distinction.

I went to the library and I got a few books. Reading is harder and harder for me. But while there I felt the need to write. There is such a lack of books on disability in the Teen Section, a lack of books for female athletes. I want to write. It was the first time I WANTED something in a long while. I am stopping my job hunting after many applications and over a year of trying. First, Canada is not ready to accommodate a disability, and second, people make the type of judgements about a person in a chair the way US Southerners in 1890’s made judgements if a person’s skin was black. Yes, I still want the human contact and satisfaction of a job, but I am admitting that I no longer have the energy to do job hunting as a hobby, nor the capacity to keep that job if I got it. My protest is over.

In the last three weeks, I have been too weak, tired and occupied with one or two appointments a week and keeping the blog going to have the energy to do postcards. I have to wait for assistance for that. The spirit is willing, but the flesh is weak.

So I am asking the people who read here. I will be honest, the comments, the knowledge that people read here is what enables me many mornings to get up, and get through dressing and getting to the computer. I am in pain constantly, I am alone, I am tired. Without the blog, none of that would change; but I would not chuckle at comments or have the freedom to express my frustration or joy and have a response in hours. I would not have this community.

I do not want to give that up. And I know that if I blog less that many people, as many already have, will drift away. The blog isn’t sex reviews and sarcasm all the time, or me off doing zany things. This is the part when it is going to be pain and then even more pain before laughter, at least for some weeks; more losses, probably each week, each month. And one day Linda will post I am in the hospital, and then some time later there will be a post that I am dead. There won’t be any more postcards after that. Screw Bronze will be over. And I am scared.

So I want to know what to do. I would like to post a little less on some days, maybe just short posts. And I would like to take one of the days on the weekend off, just for now. I know that a lot of people come here every day and I know that once I am gone, they will drift off to another blog. I’m a realist. But I want to know from the readers what they want; is three big posts and a couple smaller ones a week enough? I would like a couple days to try and write a book, and I’m not just writing that like so many do: "I want to write a book"; this is my last go. I know I won’t see this book in print, I just need to write it. Sometimes the joy of writing something that should be written is worth more than seeing it credited as an accomplishment. I have learned so much in the last 18 months and I don't want that to end with me. I need to start soon. I guess I am asking for collaborators here, for you to help me so that I can this done. And I will post how it is progressing. God, I hope it progresses.

I guess that what makes death and dying real to me, is that I realize that this is IT; this is all that I will do, all I will accomplish, that whether I like it or not; this is the culmination of the life of Elizabeth McClung. I can have a wish list as long as my arm but I might, if I keep using my tricks, get one or two more things done. But the meaning of them has to be more than what anyone will think about it, any review or applause. This isn’t about a legacy, because I don’t have one. I learned a lot and hoped to pass that on. It didn’t happen. I started this blog and now this is what I do. I want more than your permission, but support to do more. While I can. And that you won’t leave me. If it looks like I am publicly begging, I am. I have nothing to lose in begging, I have everything to lose if people drift off, if I die alone, a blank computer screen my contact to the world.

And yes, won’t it be great if we joke about this post a year from now. I will be the first to point out how drama queen it is. But if you know of a way to breath and keep your brain going without oxygen, now would be a good time to tell me. If you know a way to stop the fatigue, the pain, the whole horrid ride, then tell me, tell me.

I will not see all the TV series on DVD I own, I will not write all the postcards I want. I don’t know how much time I have but once I start the “final” stage, I expect it will be very quick, so while we are ON the edge of the cliff, lets dance while we still can? That’s where things are physically and emotionally for me, so I need to hear from you, what do you want to keep coming back every day? Because soon I won’t be able to post at the level I am now even if I spend all day doing it. I want to write, there is another book in me, and I want to write it. Do you want that? How do you want it? All I can say is that once I have the book done and edited a few times, I will send it by email to those who are interested (Oh golly, I might miss out on some Royalties when it sells, ha ha ha – laugh, people, laugh.).

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.

A Message from the Heathen and the Doctor

Hi everyone, it’s The Heathen here, err… I mean Linda.

Earlier today, Elizabeth looked around the study dazed. We (Cheryl and I) had asked her if she recognized the books in the bookcases lining the walls. “I’m not allowed to read fiction.” she replied in a hesitant tone. I told her I had just read Peter Pan. ‘That’s a tool of Satan,” she said. She looked at me closer. “Are you one of ‘US’?” “No” I replied. “Then you’re a Heathen!” Beth stated, in the black and white tones of a brainwashed teenager.

Confused? You aren’t the only confused one today. Beth had a bad seizure earlier this afternoon while I was grocery shopping. Apparently she was in mid-sentence talking to Cheryl when all of a sudden she passed out. When she woke up she was back in 1987, living in California and going to high school.

Cheryl was a doctor because she asked her medical questions and had a stethoscope and stuff. When I arrived on the scene she did not recognize who I was. As she was talking about her religious private school, when she wanted to know who I was, I said I was her guidance counsellor. She wasn’t so sure about that, as heathen’s wouldn’t be allowed to work at her school. But then she remembered heathens were occasionally employed.

Beth looked carefully at me and said “but you’re old?” (Definitely a teenage point of view. )

She was very concerned for me and wanted to save me from being killed and tortured during the end of the world. Only 'the Chosen' would be saved. While this was fascinating, it was also sobering to hear her talk about the way things were when she was 17. We both grew up in the same conservative church/cult, but listening to her recount things, twenty years after they happened, made me realize how far she and I have come.

At one point Cheryl told Beth that she was married and when she want to know to who, Cheryl said that she was married to me. Beth giggled and told Cheryl she was silly. ‘Girls can’t marry girls!’

Cheryl was treated with suspicion because in our church, people didn’t go to see doctors. And you didn’t take any medication. (Elizabeth: “If you truly Believe you WILL be healed.”)

Beth’s memory was stuck firmly in 1987 for over 4 hours. She wanted us to call her parents to pick her up and take her home (to California!). I did eventually call them, let them know what was happening and asked if they could come over for a few minutes. When Beth saw them she became very upset because they were imposters – they didn’t look or act like her parents. “My father would be wearing a suit,” Elizabeth declared.

I had asked her parents if they could help her by saying it would be better for her to stay with me and Cheryl rather than go back with them. Cheryl could help her more because she was a doctor. How else could we explain why she needed to stay here at home in a place she didn’t recognize.

“Those aren’t my parents,” she told the doctor (Cheryl), as I escorted her them out. “My parents don’t ask me what I want to do, they COMMAND.”

We were eventually able to get Beth to use the bathroom in preparation for lying down. In the bathroom she found my straight romance and read the back cover. She was shocked and appalled that I had this book in my house. Coming out, she said to the doctor (who Elizabeth had been told was, likeher, of ‘US’, 'the Chosen'), “There was a man and a woman having a relationship and they weren’t EVEN married!”

This made me crack up so I had to turn away as Elizabeth turned and whispered to the doctor, “How can you still be friends...?” (Elizabeth had been told that while Cheryl was ‘US’ and I was not, we were still friends. This was humorous, but also heart-wrenching.

It was sometime between the bathroom and the nap that Beth thought we were sent to deprogram her, or had kidnapped her for ransom, and were drugging her and keeping her against her will (because she had no memory of yesterday or the day before). We decided this was not the time to offer her a valium and muscle relaxant. Didn’t want to fuel the ‘drugging’ idea.

When she did wake 1.5 hours later we were relieved to find she was starting to put things together and no longer 17 years old. But all the 'new information' was making her head hurt, and more seizures followed. We have decided to leave the connecting of memory dots to another day and instead show her some of the old familiar. We went for a drive to one of the local parks and stopped at Beacon Drive Inn, a favourite haunt of ours, for ice cream sundaes.

It was an exhausting day for everyone, physically and emotionally. Personally, it made me face the possibility that there may come a time when Beth won’t recognize me and may never recognize me again. How will I cope then and how will I help Beth to adjust to whatever state she is in, and her relationship with me? I’m just thankful I didn’t have to tackle that problem today alone. Here’s hoping a long rest overnight will keept the the memory button reset for a long time to come.

All being well, you’ll be back to your regular programming tomorrow night.