I have found out with brains that things can be good and bad; that some days are forward and some are back. For example: I am very good with squirrels but not very good with humans, or speaking or remembering what I own or how to do things. I go to places because I remember that I “needed” to go there, but cannot remember what it was. I forget the beginning of the sentence I started.
It was NOT a good day. I went down to see people I have seen many times, thinking that would be “safe” but first they thought I was on drugs because my sentences were mixed up and slow. Then when I told them about the seizures they gave each other a look and one walked off. I wasn’t interesting anymore; or I wasn’t going to say the kind of interesting things that amuse them. The other person spoke to me differently, much like I am a child. And I am not a child. The things I know.....I KNOW. And what I am experiencing is in many ways, amazing. Yes it is also tiring and confusing but amazing. And I feel bad inside sometimes (a lot!) because people expect me to be something or someone and that isn’t what I am right now. But I never felt as bad as when I was there, where it would have been better to be high off my head on drugs than to be the me right then in these people’s eyes. They don’t care that my brain replayed an ENTIRE MOVIE in my head while I sleeping (I am sure that is an act of piracy in North America and I will be soon arrested as an example: “Don’t download from your brain…that’s illegal now!”).
So I went home in my old wheelchair because my new chair is being fixed and this is an old one they found at “the boneyard” which is where wheelchair PT’s throw old chairs and parts. Janet, a PT who is a little crazy like me but coaches me on how to act ‘disabled’ the right way when around authority people instead of telling them all the truth, gave it to me.
So I got home, felt frustrated and sent out some emails asking why I could be the way I was yesterday and the way I am today. Apparently the brain does not improve in a linear curve; so much for the theory that math is the universal language. The brain goes forward and back and the reason that I didn’t stay in the hospital and they didn’t give me a pamphlet saying “Your brain just got partially destroyed: a Q & A booklet” is because no one knows what really happens when it comes to brains. Except for cutting the frontal lobotomy. And they only learned that because of a railroad accident (railroad spike through the brain).
So I will not be going outside anymore without a “buddy” for a week or two because until the med-alert bracelet we ordered after the 10K comes then I could use someone to interpret, maybe both directions.
I do not like feeling stupid. I have always challenged myself for years by doing things that were NEW, because that is when you feel stupid, and then I would work twice as hard to stop that feeling and get up to an acceptable level. Only now, there is no way to work toward, what? Integration of what I know, what I remember and how to interpret what people ask, and use the right words is what I need to do. That is pretty complex.
People use a lot of open ended questions: “Are you feeling better?”, “How are things going?”, “Anything interesting happen?”, “How come you are in the wheelchair?” (Even I don’t know the answer to that right now). Right now, I am trying to understand what is happening and I do not like open ended questions; they imply time and space and previous knowledge and all sorts of things. And when the people “know you” well, they are even less patient in waiting for you to be you.
My home care worker did not understand why I did not want the mail, in fact the closer she brought it the more I curled up. And I would not uncurl until she took it away. Quite honestly, I have MORE than enough new information coming at me right now. It is because I have people calling asking about my seizures but not telling me why they want to know, I have people I don’t know in my house who know it better than I do, and I am trying to reconstruct what I did and scared that everyone “out there” is going to start demanding things before I get it understood. I have an appointment in two days with a person about a job, or a job that I am doing or supposed to be doing, I don’t know. And there is an ergonomic report about my workspace that I can’t remember being done, and recommendations that will be discussed. And an appointment to see my GP tomorrow to try and get a CT scan – an appointment every day and I can’t even remember all of what is WRONG with me and what I all do to counter it. Last night, I took all the pain pills I was allowed and the muscle relaxants but I was still in very bad pain. But I didn’t know what I do in that situation, so I just kept waking up in pain. Maybe that is what I do?
Okay, so it isn’t as easy today as it was yesterday and it looks like it won’t be easy for some time to come, except for those hours it is. And yes, it seems that there is some expectation that this will just continue to keep happening (TIA's, etc). But I remember that Shackleton expedition had a couple guys and a carpenter’s plane and had to get over this impossible ice mountain and find station or a boat on the other side so the top person cut out steps and that is how they went. I am sure they stood for a while staring up at the big, white mountain and thought, “What the hell?” but since they were freezing and going to die and that wasn’t stopping any time soon, they got at it (for three straight days). And I am sure it wasn’t easy but what choice did they have?
I am not freezing to death; I do not have to cross a mountain, at least literally. So I will feel stupid and say things that confuse people. Right now I seem to spend a lot of time quoting from books which I did when I was in my early 20’s, when I thought people could understand linguistic metaphor and then spent a long time learning to speak…well, like people do. So maybe it isn’t meant to be easy. It just needs to get done. I have faith in my brain; if it can be done, it will do it.
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From my experience with MD, what you are going through mentally is perfectly normal for having had a seizure. I wish for you that the people you met with weren't such jerks.
And, um, weird that your carer was trying to stick mail in your face. Is it really that to figure out that someone who is getting over a brain incident--seizure, stroke, migraine, etc.--isn't going to want to mess with brand new information?
I'm sorry that people are not more understanding. It's hard to deal with the fact that your recovery won't go in a straight line. I remember a lot of the feelings you're talking about.
The major event that I went through happened over 20 years ago. I was in my twenties & had been sick with Lupus and chronic infections for 2 years. (Of course my Lupus & immune deficiency were not diagnosed until 2006). I wasn't getting very good medical care & was still working part time, but people at my job kept trying to get rid of me because I was sick.
Lupus can cause many neurological symptoms. The 3 most serious ways it can affect the brain are stroke, seizure or psychosis. Well I had the third one. A psychotic break is just what it says - a break with reality. What people used to call "loosing your mind". But my mind was still there, just the brain chemical were all mixed up. My perceptions were different, my reality shifted. I was in a different place than other people.
I had symptoms for some time - thought it was stress from my illness & situation. Had insomnia & restlessness. Colors were very intense. I was also very creative in the months prior to my incident. Was a poet back then & wrote some good things even though I was physically very ill. I was isolated & on my own a lot becuase of being sick & my husband & I didn't have the same work schedule.
When things got bad, it was clear to my husband that I was not acting rationally. By that time some very interesting things were going on in my head. Like you said, Elizabeth, some of it was amazing. I used to remember it all clearly, but now so much time has passed the memories have faded. Speaking of communicating in metaphor, it was like I was living in that metaphorical symbolic world. At one point it was like I was living the Odyssey which I had read in Greek & studied at college (one of my favorite works). And certain people I knew were the characters in my "Odyssey'. Like my friend Mary was Tiresius.
And I was communicating but people could no longer understand me. I had some phrases I kept telling Dennis (my husband) that were very important. One was " Love and the longing for love. What does that translate to?" I was also a translator of Greek poetry, so the whole metaphor of translation was very meaningful to me.
Anyway as it was the weekend & I ended up having to be taken to the county hospital. Here they strapped me down & gave me some medications. I was pretty incoherent, but I remember asking what they were giving me - I wanted to know. Then they come in to check on me & when I was calmer & quiet, they unstrapped me & took me to a large room with a lot of people in it. Apparently no bed for the night -
you just had to sit in this room all night with all the other psych patients who'd been brought in that night. They did give you a blanket. There was a payphone & I called a friend & tried to tell her what was going on. Poor Dennis had been sent home - I think i called him too. I remember watching the sun come up through the barred windows.
The next morning, a nurse comes in & I was released & given a bus token. I was in Oakland & really didn't know how to get home to Berkeley. Thankfully, Dennis was outside waiting for me.
We had a few adventures the next few days before we were able to access the proper care through my insurance. Then I spent a couple of weeks in a hospital. Where they failed to diagnose my Lupus(my current rheumatologist says they should have been able to diaganose me), but did treat my psych. illness. And then more time with the up & down days & crooked roads of recovery. And I will tell you more about that another day, if you want to hear it.
Sharon
I hope that your mysterious brain choose an interesting movie to replay last night.
I'm finding your recent posts remarkable in their honesty and clarity. You're reporting from the fog and making an enormous amount of sense.
Here's one of my favourite bits--it's helping me to rethink how conversation works.
Right now, I am trying to understand what is happening and I do not like open ended questions; they imply time and space and previous knowledge and all sorts of things. And when the people “know you” well, they are even less patient in waiting for you to be you.
Patience is a difficult thing. I think it's a skill we let get rusty because we're rushing around either physically or in our imaginations.
I just wanted to let you know that today is the first of my daily DisAbility blog roundups over at Remembering The Ability in Disability, and this great piece of writing is the first one that I have linked to. You've also been BlogRolled over at RTAID. Keep up the great writing! :)
My father's analogy for this kind of brain upset (he's a neurologist) is of a trashed filing system. Like you had a room full of stuffed filing cabinets and somebody broke in, pulled out all the drawers, dumped them, and then stomped all over them and flung them about the room. You now have the job of not only trying to find all this missing information, but getting it back in the files and back in the drawers where you can access it again. Even once you find something, you may forget where you "filed" it, because you're creating a new filing system as you go. Eventually most things will get refiled, but it's a tremendous job.
Boo to the people who walked off or treated you like a child. Unfortunately people at large tend to deal badly with brain difficulties.
(((Elizabeth)))
I was searching for something really profound and insightful to tell you to help you feel better but realized that I could do no better than what you wrote yourself. You may be feeling that you've lost part of yourself but your writing is still packed with clarity and depth. It may be frightening not to recall the mundane, day to day things like names, dates, phone numbers (I struggle with all that myself) but you are still able to grasp complexities, like people's expectations and fear, even if that is disapointing. And to be able to pull up Shackelton and build an allegory out of that for your own situation, that is remarkable.
Be patient. Take your time. Take care of yourself. Don't tolerate ignorance (in other words be Beth) and keep moving forward. You are still in there. You will find you.
I think you're right and it isn't meant to be easy. I have faith in your brain too.
I have to say the apparent lack of medical training/understanding from your careworker and Beacon's people in general continues to appal me.
Everything will be... illuminated. Eventually.
We're here for you until it does. And afterwards, as well.
The only answer you need to give is 'brain fart'. It's the truth and will either make people laugh and want to hang around with you (in which case they 'get' you and are worthy of a more detailed explanation when you're up to it)or they'll run away screaming ( which is always fun, especially when it's done in close proximity to heavy traffic).
Don't fight with your brain to get the memories back and don't force yourself to be who you think you should be. You are who you are at any given moment and people can accept it or get stuffed. No sense twistin' yer melon further for their sake ;-).
All any of us can do is be who we are - who we are right now. I wish you happiness in this moment.
- Naomi
Even with a messy brain, you are still smarter, more educated, funnier, and a better boxer than anyone you're likely to run into whilst out and about. Everyone could use a little more literature in their life! Except you, maybe, you have enough.
Just remember Beth: you can't fine your internal organizer if things improve too slowly for you.
Don't force yourself too much; it is going to steps forward and leaps back, then creeping forward again. Nonlinear progress for sure!
Your writing shows that you are still you. And while you put your internal self back together, you'll be even more illuminating to read.
We're here with hugs for you and Linda. And thanks for being there for me!
I have some neurological problems with my CFS/ME.
Although not on the same scale as for you (you get the gold here for squashy neurologicals!) I went through a very bad phae early last year (my first taste of such things too).
It was terribly distressing. I felt so utterly stupid. What helped was when I heard that my intellect was in tact - I just couldn't access it right there and then. So my great clever witty logical brain was still there despite me sepaking sentences back to front, getting words wrong, muttering internal thoughts out loud, get very confused very easily and not being capable at times of comprehending what someone was saying to me - especially if it was a question.
How to get through it? Well I suppose like lots of things you just kind of have to. Anyway you can. Things got better with time and patience and not being TOO demanding.
I know it sucks :o(
Apparently the brain is rather good at adapting and if it's struggling to get information through it's normal channels it will figure out a workaround. You just have to keep (gently) practising until it gets some new routes worked out or old ones re-opened.
ANYWAY - don't want to blast your mind anymore :o)
but one last thing - I sent you a card (or two) before your seizure so a bit of that mail might be a thank you from me (which can wait to be read!)
The coming and going of words, thoughts and memories is so much like what M goes through.
I am so sorry you have to put up with so many people who just don't seem to think things through before doing them. Hugs.
Hi Elizabeth,
I only commented here once before, asking about luggage pictures after your return from Japan. I'm afraid I'm not very good at writing blog comments (I apologise in advance for any stupidity in this one.) I'd been lurking for a long while, but managed to miss about a week... in which both the 10K and the seizure happened.
I'm so sorry about the seizure. Though I don't have the medical/experiential knowledge that lots of commenters here seem to have, I think I can see the amazingness you describe - but it still sounds pretty scary and difficult. And I'm stunned at the jerkitude of the people who just walked away from you.
I wanted to echo the people from the previous comments who emphasised that you were clearly still you. And also to try to tell you how much the image of your wheeling about, covered in pregnant squirrel, made me smile.
Lots of good wishes and vibes coming your way.
Yanub: It is good to know I am "normal" in some way! As for the "friends" I had I guess every level of disability has its own filter process. Yeah, the carer, not so sensative.
Sharon: Thank you for sharing your story, I really appreciate it. I find it frustrating that you had that and they didn't find the lupus - I like that you were in the Odyssey since that is the book my father read to me when I was wee (under 4) to put me to sleep.
And "Love and the longing for love. What does that translate to?" - seems very good choice - mine still seems to be, "Everything is Illumninated!" Thought I asked my doctor today if he could speak spanish and he could and told me what "burning sacred heart" in spanish was (got to be prepared!).
Heather: thank you for reading and commenting. My GP is going to talk to the neurologists becuase the hospital reports did not get there - blah blah - anyway, he seemed to be okay with the way I talked, but then he does work in a drug and homeless clinic so me calling him "Mr. L.L. Bean" probably wasn't that unusual. And saying, "What I know, I KNOW" and then when we talked about Nellie and I rattled off all the people she had helped in setting up Euthenasia boards in Alberta and the exact numbers and then in BC when she moved to Gorden Head and how that was still going on in 1976, but I said it like it was coming out of a book - Linda said I sounded autistic becuase I can't finish a sentence and then just pour out all this info on Nellie- He asked, "Why haven't I heard of this?" And I looked confused and shrugged and said, "Feminists never make mistakes?" I hope today's post isn't a little too far into lala land.
Same Difference: Thanks, I appreciate that, I went to look and read the other posts, which were very interesting.
Perpetual Beginner: thank you for the metaphor, it is very useful for me visually and can I use it please? As it is something that I understand and I appreciate you laying it all out for me - so, I am like a temp back in that horrid legal office doing the filing and copying THEN filing. Super!
Victor: Thank you, I appreciate the encouragement and compliments, particularly from a man who puts himself under the microscope as well. I wish I knew more, but I can read people and faces and what I read when I was younger I know, or when I get a prompt I know, so old hobbies are popping up as knowledge base - very odd, would you want all your obsessive knowledge from 10 years ago to show up now? With no filter of meaning from experience? Kind of makes me a bit heavy on metaphor and repeating exact conversations.
Cheryl: Thanks, I have the worker again tomorrow, I hope she has learned by then not to keep giving me new info EVERY minute she is here.
Lene: Yes, it is illuminated, the past and present will soon be seen together. Sorry if that made no sense, it is the only way I can explain open questions like, "How are things going?"
Giana: Well "Brain Fart" is fastere to say but do I need to Lean over a bit before saying it, "Sorry, brain fart!"
Haha. Sorry, I guess scat humor stays with us forever.
Lilwatchergirl: thanks, I am not happy yet, but I am determined. Is that close?
People walking away, talking like you're a child... I'd like to say that that goes away; unfortunately it doesn't always.
Once they get to know you again, it gets better.
Honest.
Either they realize that you are still in there, or you give up on them.
Raccoon
Veralidiane: Your comment made me laugh, yes, I probably have too much literature in my head, as Chery finally translated my Arthurian Quotes into "She wants to go to sleep" during my Siezure/TIA/Brain fart. I am still, much like the borg, seeking to reabsorb as much of me as possible back into maximum effeciency. Actually now that I think of it, any body parts trying to LEAVE, might be the smart ones.
Neil: thanks for your support - I really appreciate that you are so positive. because it is sometimes hard to feel positive about being less than I was, like, a week ago. And yeah, to be smart in afternoon and no in the morning, not so great. And when I have to keep saying, "What did I say" to people when they get the odd look which says, "You probably didn't say, "That movie really showed north American insecurities" but "That lettuce really showed Northern cucumbers in financial security" - sometimes what I say isn't even WORDS just sounds like sound LIKE a word. A real boost for the system, thank goodness my speech and language (typed language) centers are almost entirely divided, mostly.
RachelCreative: thanks for sharing your story. How did they know you were all intact - was it a CT, becuase someone saying I was all intellectually intact would be nice!
Yeah, it sucks and good thing I am NOT a type A personality but rather the patient and "go with the flow" kind of person I am. That's who I am right? (joke)
Thank you and everyone who reassured me that the could still see ME, even in my crappy 5th grade writing (self perfectionist much?). And for saying you see the amazing; it is just, there is much that I feel which I cannot say, and yet when will I ever experience this again, like a child with a growing brain or remapped brain, a memory flowering in my mind, - it is a unique experience!
Marla: Thanks, actually Linda said that when I talk, particular in repeating whole conversations she says I sound autistic (we have an autistic nephew). So, I am glad that I share a bit with M, if even for a short time and have someone to care for me as much as M does with you.
Schauspiele: No worries about lurking, that is great (and look, you gave me the incentive to take the pic which so many people liked), but I am so glad that you read here becuase I feel privilaged for anyone to choose to spend time reading here.
It is scary and difficult and embaressing and humiliating but then when I don't know a person and then I do know them, how do I describe that, how can I ever replicate that in life again? I can't so I realize that this too, though unwanted is part of the journey I am taking and will try to figure a way to express it in language (which my written is better than my verbal thankfully due to a rare form of dyslexia).
I will pass the compliment on to Peggy. It was pretty special.
Raccoon: Well, I am glad it gets better socially - it was just disappointing to go through that AGAIN!
Thanks for the encouragement.
"How did they know you were all intact - was it a CT, becuase someone saying I was all intellectually intact would be nice!"
Well they didn't say it specifically about me - it's just generally like if you have xyz neurological symptoms (like with words and difficulty accessing memories and making new ones and stufff like that) that is a different bit of your brain to the intellect bit.
I see from your latest post Elizabeth that you still have your intellect. I can't give you a CT scan but I can hear your voice. I think the filing cabinet anology someone said earlier is a good one.
Hang in there brainbox. You'll be dazzling us (and scaring us) with your all of your amazing brain as soon as it's ready :o)
That's the problem with so many people today. Don't understand or it's hard to understand? Just walk away. No one has any patience. I know I was "forced" to endure taking orders for Spiegel catalog for two years to remind me how to be patient.
Speaking of which . . . BE PATIENT with yourself. Rather than losing patience and walking away, you're losing patience and pushing too hard. Your brain can reroute itself, and it will do it whether you push hard or you relax. So give yourself a break!
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