Monday, June 30, 2008

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… 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.


Kathz said...

There's nothing shaming in having been programmed to obey as a teenager - you courageously broke free of this and the experience shows how strong you have had to be.

There's nothing shaming in being looked after by others - it's part of being human. And there's nothing shaming in the tricks your brain plays when you are tired and ill - it could happen to any of us. There's nothing shaming in being afraid when frightening things happen.

Your courage and strengthy is demonstrated by the way you face such events - your generosity and your ability as a writer is shown by the way you tell others about them through your blog.

Heather said...

You've had a horrible couple of days: exhausting and frightening.

I suspect few people would want to have their teenaged selves back in the room with them: we worked hard to grow away from being that version of ourselves and it's hard to see that the teenager needs to be met with compassion, with loving kindness.

I hope that your night passed peacefully, that the seizures diminish, that the pain lessens.

SharonMV said...

Dear Beth,
It must have been so confusing to you,the 1987 teen. And so intense to come back to yourself with all the vivid memories flooding over you. I'm so sorry that you have to endure so much. And then the muscular seizures . & the Gran Mal. No one should have to go through so much. You may feel humiliation that this other you was there to be seen. That you became the you of the present. The teen Beth grew up, survived those difficult times, the brainwashing & more. You survived them & grew & changed becoming the woman you are now. I can understand feeling betrayed by your body and brain. But it is really the disease processes that are attacking your brain & body so that they can't function properly - they've been betrayed & violated & injured by illness, disease & damage. I know it's hard to be so naked & vulnerable in front of people you love. but sometimes it's good that they see these moments - to understand what it's like for you. to be able to help you and comfort you during such times can actually be a boon for them.
Hope you are sleeping & will wake up feeling better

rachelcreative said...

You're back. You were always in there. Good to hear your voice.

Your description of what it's like to have your present float away, your brain to violate you, the eletrical storm inside your own body feel like important testimony to the world. On a personal level it helps me understand life from where you are. And it's something I'll always have an insight into now and no doubt can use again.

I'm struggling to find meaningful things to say!

You asked us to witness. Through your blog not only do I witness but I get to know what's on the inside too.

I just wish your brain would do what you want though and stop giving you cr@p to deal with!

yanub said...

Oh, Elizabeth, I can understand about how embarrasing it is to have your teenage self tossed up there for all to see. I have well and truly buried that myself, and would hope it stayed buried.

Your seizures are horrible. I wish I could wave a magic wand and no one would ever have seizures again. I hate that MD/Carapace has them. I hate that you have them. I hate that they make everyone helpless.

I'm going to have to look for Ef. Thanks for sharing yet another great anime to watch.

Lene Andersen said...

You don't bother people. Never believe that, never hide. Be here.

Bigs hugs.

Veralidaine said...

God I don't know what to say again except I'm here and I wish I could take the seizures away from you.

And like Kathz said, don't be ashamed of who you were as a teen. The people who love you love the person you became through all the horrors of your childhood and teenage years. They love the person who grew from every moment and experience in your life. I understand the violation of your privacy and why it's horribly unpleasant, but remember that they love you and that every cross section of the past they might see is part of what made you into the person they love right now.

FridaWrites said...

I'm glad your memory has returned to you. Can your primary care doctor or that excellent ER doctor prescribe anti-seizure drugs (if you're not already on them)? I know the neurologist is a lost cause.

Are there books/games or something else familiar you liked as a teen or kid that Linda could keep on hand? Even if you can't use them while you're feeling disoriented, it may help or be reassuring at the time to have some familiar objects around.

Hoping the rest of your week is more smooth. Cheryl, you are a blessing.

cheryl g said...

Oh how I wish I could stop the seizures and return your memories to you.

I wish these things didn't happen to leave you feeling so vulnerable, violoated and humiliated.

If wishes were horses... so I do what I can to ease your fear and pain. I continue to be here for you, to witness, to giive you and Linda support.

Dawn Allenbach said...

I don't know what I can say except that, as always, I appreciate your candor.

Your programmers are the ones who should feel shame -- that they took someone so open and trusting (as any child would be) and twisted that trust. I know you would have chosen not to let Linda and Cheryl (and then us) see that you of 1987, but they (and we) will love you all the more because of your strength to break away and become your own woman.

I don't know the body betrayal of having a seizure or stroke, but my body betrays me in more subtle ways. The frustration I experience is not the equal of yours, but it exists nonetheless. I am here, and I am honored to share your story and experience in whatever way I can.

Has your package arrived?

Gaina said...

Really obvious question coming: Has anyone thought to try you on epilepsy medication? There are lots of things about your current state that can't be controlled so I think this makes it even more important you get something to manage these seizures to some degree.

sly civilian said...

i got your postcard today...

and it really made me smile.

that probably doesn't count for much, but i hope it counts for something.

thank you so much for writing.

abi said...

It's so good not to be a teenager any more; I'm so sorry that you got to experience a bit of that again, and possibly feeling more precarious than usual, too.

Even though it feels bad, you do know at an intellectual level, at least, that there's nothing to be ashamed about, don't you? It's such a pity that knowing at an intellectual level doesn't always lead to feeling that way.

I'm sending lots of warm thoughts your way.

Elizabeth McClung said...

Kathz: Life for a teen is quite different than later. And as much as Freaky Friday makes it seem interchangable, there isn't. As a teen there are expectations placed on you, but also a safety net.

I am sure everyone has gone through a period, even the teens who read this, that they wouldn't like to be returned to (a younger sibling fawning for an older siblings attention?). Who would want to return to the pompous surity of having just finished philosophy 101?

The problem is that not just the memory of that remains but the fear WITHIN in remains too. I did not recognize the trees, I wanted to be HOME, where I knew where things were. But of course, home was gone, the apartment I lived in gone, the stores I wanted to spend my money from my part time job at - gone. No arcade with Qubert machines or Ms. Pacman. And surrounded by uncertainty and people I did not know. In a body that COULD not be mine. I saw my arms and asked, (As a teen), What HAPPENED to me?

Yes, I was looked after by others but I cannot help but see within myself the similarities of me and the older people with dementia. I hope it does not go that way. I hope the heat ends soon.

Heather: Yes, I feel not only was my time (those days) stolen but also, kind of traumatized by my "Mr. Toad's wild ride". Yeah, worked hard to run away from that. And NOW she pops up?

I've been having a load of petite mal's today, but I hope the heat wave ends.

SharonMV: I feel alienated, not just from "who am I?" but also from the readers to whom this whole seizure/memory thing is pretty wierd and what does a person say? I mean, heart problems or thyroid is one thing but this?

I know that it is the disease, and I know that this, much like showering, has become something beyond my choice, I NEED help. I just don't understand or didn't before how naked the disease would leave me, how dependant I could become at times, completely emotionally and psychologically dependant in this case. Physically as well with the seizures.

Though the disease has no line of stopping for dignity or feelings of shame, or pride, it goes on, but I feel them anyway. Has this happened to you; exposed or helpless in ways not chosen? How then to go on? I admit they existed, but they are the disease. But they still existed.

Rachelcreative: if someone had told me that I would soon be feeling emphathy and a connection to people with alzhiemers or dementia, I would have laughed. I'm not laughing now. I am saddened that it seems to make it more difficult for people to reach me, to make my voice even more alien to those people who live the "typical life". I wish I would get better, so that I could be a caregiver, and treat clients with the dignity of knowing that each of them, could or is, in some way, like me (or like I am). Probably not a lot of call in employment for people who lose memory and wake up in altered states.

I always thought having the body fail, be fatigued, losing time, losing days, would be the worse. Now this brain!

Yanub: yeah, I think most of us have an awkward aspect we would not like to have exposed like that, more than film, but reliving.

Helplessness and seizures do seem to go together, for the person having them and for those around as well. It seems the greatest cruelty to feel the onset on one and have no one be able to do ANYTHING. I guess for the caregivers, the feeling must be the same.

Lene: Well, here I am. Odd memory and all. Anything you want to know about the 80's, from the jumping jack beans they used to sell to soft drinks, just ask me. At least till the memories fade. I guess what they say about it all being there is true.

Veralidaine: Thanks, it isn't just the seizures, it is the time recovering from them, and the time spent in them, and the time sleeping so that in the end, the ME, the person seems secondary to feeding the seizures, which has eaten my time, my life.

I understand that the sympathetic people who saw me understand me better now - but that still doesn't take away that it wasn't my choice; it was the disease. And had they asked, I might have told them all about what it was like, but I wasn't asked. I was just, immersed, perhaps it was demensia or only able to access one file folder in my mind, I do not know.

Fridawrites: as soon as my GP returns from Vacation in mid July I am sure I will try to request anti seizure medication, which may unfortunately mean a visit to the neurologist (who confirms who has seizures or not) or the ER. So, no, nothing any time in the next month or two at any rate. Since my EEG didn't induce seizures (now if they had turned it up to 28 or 30 degrees like it is here, I bet they would have seen some), no proof, no meds.

Linda likes the idea of having something familiar around. Something I can connect to. One of the problems is that even when I came "back" yesterday, I was not emotionally connected to anything, my most prized object - want it for a $1? I felt nothing. I knew it but I couldn't FEEL it.

Cheryl: I appreciate your being there. Much more than I would have having had memories of being interviewed by 3 nurses, 2 student doctors and a couple specialist as I would be paraded around the ER as some new and interesting (albiet terrified) item.

Dawn: Thanks. Well, I could have pretended it didn't happen but it did and this is about what happens, right?

I know that you contantly have to face the frustration and betrayal not just of your body but of others (I read the hospital post, 8 ER hours to be told to take IRON?), and how often and humiliating it must be to have people want to take your autonomy away from you, or put you in positions where you don't have the ability to enforce choices.

Package arrive but it has taken two days to read one page of letter, Thanks, what can you tell me about the stone?

Gaina: I wish they would. I agree, with so much out of control, if this can be control, why not. And since most anti-convulsants are ALSO anti-depression pills, even if they think this is "all in my mind" (well, it is, in a way, that's where it happens!) - they should, I hope give me some.

Sly Civilian: It counts as a lot to me. I am happy that the postcard was a success (arrived and person happy: score!). Thanks for letting me know.

Abi: yeah, I thought I knew what being a teen was like, but now that I have a more recent memory (like yesterday), I REALLY don't want to go back to that.

Thank you for your understanding and insight. I know intellectually that it wasn't ME, or it was me, but not anything I could control. But it is that very aspect that brings the shame. It is like when we came out, the time between when I "Knew" being an open lesbian wasn't the hell bound bobsled and when I didn't FEEL it - was about 9 months. I need this to be shorter - but then, hey, a few more seizures and I won't even remember it. (that is actually sad, but funny too).

Neil said...

Please don't be ashamed of yourself, Beth.

You have shared so much of your life with us that we cannot be judgmental or think badly of you.

I simply do not know what to say, my friend, but I thank you for allowing us into your life, and for sharing so much of yourself, your thoughts adn your feelings with us.

Thinking of you, learning from you, loving you, hoping for good things for you...

Many hugs,

And I sent you a little something to the Port Angeles address; it may not have had time to arrive by last weekend though.

em said...

Beth, I disagree that these experiences are distancing you from people or making you seem weird. You once casually referred to yourself as a writer when we were emailing. But it isn't casual, and when you write about your experiences nakedly as you do, you show us your humanity. You make yourself less different, because how would I feel given your circumstances? I know our circumstances are very different in many ways, but underneath it all, we have the similarities of being human in common. And you write that So Well.

I know it would be good if you could be a caregiver with this knowledge, but I believe you are writing a very human and valuable record.

Tammy said...

Beth, I'm glad the you of today is back. I've thought about it, what if the me of 1987 came back (we are the same age. It's so frightening.
The crying in the rain, I always believe the best place to cry is in the shower or the tub. Water helps the tears flow too.

I wish I could make your seizures stop. I wish I could make all your symptoms stop. I'm sorry this is happening to you.

Dawn Allenbach said...

I'm glad the package arrived. Sorry if my handwriting contributed in any way to how long it took you to read the letter.

I don't really know much about the "stone," but my instinct tells me it's not a natural stone but more like mosaic tile converted to jewelry. The red and black reminded me of Japanese temples and torii.

Wheelchair Dancer said...

hug -- gently, however, you wish it. And if no contact, then, virtual hug.

Reading. Thinking.


Raccoon said...

one of my favorite types of stories concerns people waking up in younger bodies. Generally, there aren't any younger memories, just older memories. The person wakes up thinking that they should be in their older bodies; I mean, they remember everything that's happened to them in the past X. number of years and that hasn't happened to their younger bodies yet...

But what is happening to you is more of a horror story.

Uhm... a silver lining? You know the oral histories that students are sometimes supposed to get from their decrepit older- then- old relatives?

I know, kind of looking in a bushel of mud for a pence...

But you always come up with these great sounding anime! Where can I find this one with good English subtitles? Rhetorically speaking -- I don't want you spending time looking for me. Spend time with Linda, instead.

Be well and sleep well, please.

Elizabeth McClung said...

Neil: Thank you for the package, I was so taken with it I added it to the next days' blog - I hope you didn't mind?

I don't know if people will understand or be judgemental; so often in my life, I have been judged from the religious ideal I couldn't life up to, to my career choices, to what constitutes success (equity and money or making a difference?), to my orientation. So I guess I am afraid, that this disease will chase even more away.

Em: thank you. I do try to connect as a human, as a real person facing admittedly exceptional circumstances and trying to record the feelings and experieces and affect on me of that in a way others can understand. Thank you for witnessing it and for reassuring me.

Tammy: Yeah, I cry in the shower too sometimes. Harder when you have to have assistance. Sometimes at night when Linda is asleep. Where can I cry without sound?

I have to say I wish it wasn't happening to me either but it is, and I will try to figure out a way to limit it, and until I do, chronicle it, and hopefully, someone else can understand part of themselves or humans or something from it.

Dawn: No, I just have problems with keeping my eyes focused particularly during seizures or after them. There are some things you wrote about I want to email you about. I will try tomorrow.

Yes, the red and black of the temples, I can see that.

WCD: A hug, now that my senses are not overloaded and sending fire in my mind.

Thanks for both, reading and thinking. I wish I had some answer, some profound sentiment but I just go on, scared, confused, but on.

Raccoon: That is actually what I said when Cheryl tried to tell me I was older, that this was a science fiction story, right? I liked a lot of Sci fi in my teens. It seemed too much like fiction for the teen mind to be real. California was real, frogurt was real, my parents coming to tell me what to do was real. Girls marrying girls - that's science fiction, right? Thankfully they didn't try to tell me about the Soviet union collapsing. Thankfully Cheryl was there to stop me from wandering the streets to try and FIND my way home.

Your wish is my command. I think a package should be arriving in a week or so, if you want?