Monday, August 25, 2008

Neurological conditions: “Now” & what time, people and sequencing mean

As a part of my partial stoke (I am not sure why it is a “partial” except that it did not wipe out or damage more brain), and the continued seizures I have an altered sense of time, people, memory and what is called sequencing. Almost every time I have a seizure, I destroy a bit more of my brain. Considering that it was a big damage to my brain that started the seizures and TIA’s (and vascular degeneration due to my disease) it is not unexpected that I would have further problems in the same area (Sequencing is when you put things in a linear way, how you 'know' that Tuesday comes after Monday, you just 'know' - except I don't)

I will try to cover memory loss another day because apparently seizures can cause your brain to “dump” your short term memory before it becomes long term (meaning you lose an hour or a day before the seizure). But like a recently wounded animal the brain can, to quote the doctor, “not lay down memory tracks” for up to a day AFTER the seizure. From what I understand it means: after a seizure I continue to talk, I access words and info but the events aren't being laid down as memory unless there is some extra (like emotional connection), so I remember a tech at the hospital saying to Linda, “You must be her mother.” But why was that tech there?

Let us just say I am getting VERY tired of people saying to me, people I care and trust, that “Well you told me to not talk about……” and I respond, “I did NOT, when did I say this?” And it turns out to be right before a seizure. Annoying.

When I had the stoke and since I have problems telling time in the larger setting and sequencing, as well as I have lost a lot of my emotional connection to time. The problem is that I can only describe to you what I know, and what people say (because I have picked up what people say so I often “fake” when talking the 'emotional connection' to time so people don’t know that I have no idea what the meaning of what I am saying actually is). People have emotional connection to time, to days, to months, to years, to the passing of time (an example: people say, "Wow, this year has really flown by!" - that is an emotional statement, the earth revolves around the sun at a steady pace, so I don't know what they are saying). They have picked this up over life. I don’t seem to have that anymore.

Most times I don’t know what day it is, and if I do ask, I will often forget within a short time. So even if I know (because there is a schedule next to my computer) that Thursday is shower day, I will wait for the shower person to come and help me. I will call Linda. She will say it is Wednesday, or Friday. When she gets home I will complain the shower person never came and she should call home care. She will remind me that it isn’t Wednesday. This sounds like I have dementia. But I don’t think I do, I just have no idea what day it is, or what day comes next the way other people do. And the part of the brain that makes that important to us as people is damaged in me and doesn’t seem to work.

So, people will say, “Oh, I hate Mondays.” I have learned because this is because they take time off before Monday and bad things happen on Monday. So if there are a lot of phone calls harassing me, organizations to deal with, I will believe it is Monday. When Linda gets home I say, "I hate Monday's." Linda will correct me and tell me what day it is.

Now, we have feelings about months, we have a history of memories associated with months, with years. I don’t. I have NOW. I have “soon” which seems to be at most five days.

If I don’t see you or talk about you within that time period, I may not recognize you or be puzzled when Linda says, “we are going to see….” I don’t know what month it is, I don’t know what month comes next. Yes, I can look it up on my computer, but then, after that is closed, I forget. It is meaningless to me. April, June…um…November and February – there you go, some words. Which mean nothing to me. You can say, “This is the one year anniversary.” And that means nothing. I know NOW and I know “soon” and maybe a day or two past. And I know that a "one year anniversary" is more than "soon" but that's about all. So I just stare. What they have said is meaningless.

I know that people say, “A year ago you did….” – so when I write I use those terms too. I say, “Two years ago I was an athlete….” But if you stopped me from talking and asked, “What does a year feel like, how long a time is it? How many times did you do training? Do you remember the training? When was the last time you went for a run? What month did you like training best in? When did you used to run 10K’s? How long ago was it you did a 10K in a wheelchair?” I don’t know the answers. I don’t know if it was last week or longer. I know it was “past”. I would need to read my blog to try and find the answers.

Okay, now when it comes to people it seems that for most OTHER people (like not me) have a progression of time, an image of the person over time. I don’t; I have memories, but they have no sequence. If I CAN remember someone, which after my stroke I couldn’t remember a lot of people. If I do remember then ALL the memories I have are like in a folder, and they are all in the same folder. So I will say, “You like oranges.” Because I have an image of this person saying they like oranges. However, that image or memory may be from a long time ago, like years (see, I know after enough mistakes that year means ‘longer than you should be remember what people say’) and they are just puzzled. The problem is that I had a photographic memory, and while much of that is broken up, some of it is in these files, so if I see you, I might talk normally and then you say a word and I start repeating a conversation from the ‘file folder’ which is you, and I, only I am speaking both parts, what I said, what you said, what everyone said. And that could be from last week and that could be from five years ago (I know this from what people say), it could be from 15 years ago (as has happened) and to me it is all the same as it is in the same file as what you said two hours ago before lunch. So when I say, "You PROMISED I could go to the pool." as I did to one person, they were confused, it turned out they said that two years ago and had no idea what I was saying. I was confused because....they had promised I could go to the pool. Problem, eh?

Now, there are some images that have no file, so someone will say something or I will say something and I will start to describe to Linda what I am seeing or smelling and she will say, “That was in Venice” (when was Venice? I don’t know, I know it isn’t “soon” or “Now”). But I will put it in the file for Venice. Now some people exist from across the brain go boom episodes, like Cheryl. Do I know how long I have known Cheryl? No. Do I know when I will see Cheryl again? Yes, “soon” or maybe two “soon’s” But if it is more than one or two “soon” then I don’t know if I will recognize her. Only when she is here, when I can see her face and feel her or smell her will I know her. Until I see her and she matches the file, until I touch her or hear or smell her, I don't know if she is in "what I know." I also know that statement seems to make no sense, but it is what my life is.

Every Sunday I cry because Linda is leaving me. She says that she is going to work and says she will spend all day with me next week. I don’t know what that means because it is longer emotionally than I can understand. So I know that she is leaving. And I cry. Right now we are trying to find something for Monday morning that I can look forward to doing so when I get sad Linda can remind me that tomorrow I get to do X.

But if, for example you say, “I am going away and I will be back in two weeks.” What I emotionally understand is, “I am going away.” (the rest simply doesn’t make sense). Indeed, most of the people I interact with have to answer my question “Is that ‘soon?’” regularly. Linda tried to explain what November was to me today: “It is like eight or so Cheryl visits.”

I asked, “Is that long?” (this is where I wish I could not be me and explain it to you – a Cheryl visit happens when it happens, how do I count eight Cheryl visits? Have I had eight Cheryl visits so far? I have many memories of Cheryl but I do not know how they are placed on a line)

Okay, here is where it gets to be a problem. If you tell me that my ambulance bill will take up the money this week, that goes in the file, if you tell me at a different time that we can’t afford X because of the walker, that goes in the same file, if I remember that we are having money problems because of the costs of going to Vancouver for a test, that is in the same file and it is ALL “Now.” So if Linda says, something like, “We will have to wait two weeks because the bill for the oxygen came.” What I EMOTIONALLY hear is “We are poor, we are going to be poor forever because of you.” And not only that, the file where all the “Beth is expensive” quotes are kept stored opens up and pours out, and I become very, very depressed and want to self harm because all I can see is all the financial problems I cause. Linda can say, “I said that X time/weeks/months ago, that isn’t a problem anymore.” But I am so overwhelmed with all these quotes and the thing she just said is JUST LIKE them that they all emotionally bundle together to make me FEEL so things that are sometimes little go emotionally into huge things, and I curl up and rock. See, because it is ALWAYS “Now” – which means if I have said something to hurt someone and I realize that, the file where I realize I have hurt someone opens, and it opens “NOW” it is part of “NOW.” It is always “Now.” And I can't stand being the horrid person I am.

So yeah, I know that I did 32 postcards this last weekend. Do I know how many postcards I did in the weekend before, or before that, or ANY weekend, or even when I started sending postcards? No. I can read the numbers if I wrote them down, and then I will know. If I didn’t, I won’t.

So the reason I don’t have power of attorney and medical power of attorney is for real reasons. In many ways I have not capability to process information over time. I have memory, I have memories of my childhood and my youth and as an adult (but if you stopped me and then asked, “What year is it NOW?” You could get any answer – in fact, I’m still ‘emotionally’ convinced it is 2003 even though Cheryl and Linda have convinced me to tell people it is 2008 – haha, that sounds so science fiction, yup it is 2016 – those two years sound the same to me emotionally).

So Linda says, “You need to spend not much this week.” And every day, I repeat that, so I know in the next “soon” that it is important. And then she will say, “We are okay, you can spend a little” and then I repeat that. If it is important I repeat it or talk about it a lot, so I have those memories in my “soon” until someone tells me that I don’t need to repeat it anymore.

Well, that is a start of trying to explain my world to you, I hope it makes sense or you can at least imagine it. Yes, I hear phrases and I mimic them, and if I talk, I sound almost normal. But then, my video store knows that when, like today I said “Is Supernatural Season three ‘soon’?” They say, “It is next week.” And I say, “So I come tomorrow?” And they go, “No, longer than that, next week, longer than now, longer than soon.” And I go “okay.” Or if someone talks and says something I will say, “What does that mean?” And then when they explain that I say, “What does THAT mean?” And I attach to the part I can emotionally understand. Which might be, as it is on Sunday, “I am leaving early tomorrow morning” and I start crying.

I am not stupid. It is just that there are these parts, these things which don’t work right anymore. And instead of hiding them, as I usually do and try to do to people, I am showing them to you. I am showing you what only those who work around me, my care givers and people around me a lot know. Because I believe that maybe it will help someone understand a person they know. Or be of some use. Not because I want people to make fun of me.

Sometimes things that people which have said which are hurtful are in the “Now”, and when someone says something hurtful, that emotion connects to the other emotions (and that file) and it is ALL in the NOW. So I can react in what some people would see as an over-reaction except that while I KNOW it is one comment, ALL I can feel are ALL those comments. See the problem. How would you react if everything hurtful anyone said to you over a big time hit you every time you got a hurtful comment? It would hurt, a lot, I think. And it does. So I cry, so I curl up, so I feel like I am being attacked. Even when it is sometimes just one statement.

But the same can be true for the other side. I smell something, or I feel the sun on me and see a squirrel and I can feel good, very good, because all the feelings, even from events I can’t remember are lifting me along. I wish that sort of thing happened more often, but it does happen.

A window to my intimate world, I hope it means something.


Perpetual Beginner said...

Beth, you have extraordinary power as a writer. Neuro problems are insanely difficult for the sufferer to describe exactly because the very meaning of ordinary things is changed. Thank you for putting the effort into bringing us into your world, even if only for NOW.

shiva said...

"Beth, you have extraordinary power as a writer."

Seconded. If my time perception was that affected, i *really* don't think i could write *anywhere near* that coherently, and certainly not ever that powerfully...

"an example: people say, "Wow, this year has really flown by!" - that is an emotional statement, the earth revolves around the sun at a steady pace, so I don't know what they are saying)."

This is VERY reminiscent of autistic literalism... ;)

but... wow. i really didn't realise you had become that impaired in that area. That makes you continuing to blog at length EVERY DAY to be even more impressive.

This piece strongly reminded me of Amanda Baggs (which, from me, is a BIG compliment)...

SharonMV said...

Dear Beth,
I sometimes wonder how much you remember of me (selfish, I know), since we've never met, and have only known each other here through this blog, e-mails, & cards. It's not the same for me - I can understand a calendar, seasons, the progression of time - but often my life seems like one continuous now. Days only differ by what pain or illness is affecting me. I loose time, I'm still aware of it, but days, weeks are still lost to me. I lost a week because my IVIG was delayed - and more beforehand dealing with the problem. Then a really long & stressful day on treatment day. I went to PT on friday after missing 2 appointments from being sick - it had been a week, but it felt like 2 days to me. And now I'm loosing more days because I'm sick again.
You are part of the now I am living. I know you go back & read about me when you send a card or gift to me. I want you to know that I have been more honest here and told things to you that I haven't talked about with others. I hope your brain has a file on me, and that some good things come out when you open that file.

It is amazing the way our minds can adapt. That you have such a deep understanding of the very thing you no longer possess. This emotional connection to linear time. You know what it is and can explain to us so exactly how it affects you not to have it. thank you.


wendryn said...

That's an excellent description. It must be really frustrating. Thank you for taking the time to describe it.

I hope you are having a relatively good day today.

Neil said...

"A window to my intimate world, I hope it means something." Yes, It means EVERYTHING to me. Thank you for being honest about what you're going through. But that's you; honest about everything. That's why you're so wonderful.

I wonder if having a Palm PDA would help? You and Linda could make notes to help your short-term memory. Mondays could say that Linda is coming home from work at a certain time, or will telephone you if she cannot.

You realize you're becoming more like a cat as your memory plays silly buggers? Cats don't seem to have a sense of "in half an hour the chicken will be cooked and ready to eat." Yes, our cat loves chicken and will not touch fish.

Actually most animals don't have the sense of time that most people have. They live for now, the way you describe your life.

Of course being like a cat is good! They sleep lots, so maybe you'll get better sleep too. Just trying to help! :)

Zen hugs, and oh! how I wish I could be there to give youu real hugs,

FridaWrites said...

I do feel like I understand more of what you experience after reading this. I think it's good that you started with a photographic memory because that gives you more material to draw upon, even if it does make figuring out the timing impossible--so that you have more memories from the past that allow you to connect with people in the present. Your blog is also an incredible record and I can see how it can serve as a surrogate memory. Are there certain recurring issues/memories that you need access to that someone could write down? I know in hospital rooms where my grandparents have been the hospital has had the date and day written in large letters on the wall.

All of this must be very distressing for you.

Gaina said...


When I worked at the school for children with learning difficulties, some of them also had trouble grasping the concept of time and used to become distressed when they had to come to school and leave their families until they understood that when the clocked showed a certain time, they'd get to go home. We helped them by making little books with visual clues and photographs of clock faces, days and family members to help them. I hope it doesn't sound too juvenile or patronising but a more sophisticated version of that might help you?

Laura said...


Thank you for trying to explain the sequencing problems. Believe it or not I think I get the picture. What you have written may help more people understand what it is like not to have the innate ability to form timelines. I know that what you have written helps me understand my Grandmother much better. Thank you so very much for your writing eloquence.

By the way, you do a hell of a good job "faking it."


yanub said...

I have some experience myself with misplaced time--whole chunks of it missing, being told that I did this or that or said this or that or was told this or that, but I have no memory of it. After my depression lifted, that problem has gotten better. And some amount of time is just gone. The last decade feels both more elongated and compressed at the same time. I've been trying to reconstruct it, but it is a slow process.

FridaWrites said...

Yanub, I have some missing time here and there too. Glad to hear it improves, as I have been getting worried! I'm not trying to reconstruct right now, just trying to get through.

Devi said...

"I hope it means something." - Yes, it does. I humbly thank you for giving me this understanding of what it's like being you (inasmuch as one can understand without being in that situation).

cheryl g said...

Thank you Sis. I now have a clearer understanding of the changes to your sequencing and memory abilities. I also am glad you told me about how the file opens and everything is NOW. That really helps me understand.

You have incredible descriptive skills as a writer. I am again amazed as you expand my viewpoint and give me a window into your world. Stupid is something you are definitely not.

rachelcreative said...

Beth thank you for sharing this. Having suffered (am suffering) some cognitive problems I can kind of relate to some of how this must feel. But mine is transient and comes back where you have no respite.

I understand more now. I can look at you, look at others from a place where I understand more.

Lene Andersen said...

Thank you for sharing your experience. It makes me better understand what you're going through.

beyond that, you're also giving me an understanding of what my father went through as he was hit by strokes and seizures. I miss him every day and your writing brings him back to me a little. I'm grateful for that.

Dawn Allenbach said...

It means so much that you have the courage to open yourself in that way. So I'll tell you something now, and I hope it goes in the GOOD file so you can feel all your other GOODs.

You are amazing and wonderful and caring. You have many friends who love you. You are an incomparable brightness in many of our lives.

Elizabeth McClung said...

Perpetual Beginner: thanks, I feel that I am fumbling with words because usually I can get outside myself or try to bridge a gap but in this case, I cannot, so I have no idea if what I say makes sense or not (It is like explaining not seeing colour, how do you do it? I can still see colour, though).

My greatest problem was overcoming the difficulty of sharing something which I had becuase I pride myself on not looking or being stupid, and this will make people think I am. Becuase I am brain damaged and I think people are getting that now. So I wonder if it will be like other times, where when people find out they start talking in front of me as if I am not there, I am not a "real person" because I am brain damaged.

Shiva: Thanks. Actually because I do blog every day and I have a few days memory window it makes it easier while Ouch, I will post thinking I posted last very recently, while the editors will say it was many weeks. But here, I can know I post every day, it is a routine, if that makes any sense. If I stopped for more than two or three days, I would not be able to tell if I started up again at day 4 or day 40.

I had noticed some of the literal similarities from emotional processing differences in autism, however I didn't want to bring them up becuase so often people try to link autism WITH brain damage while I believe it is neurological diversity. However, in my case we have a change in the brain due to damage.

I guess what I am trying to say is that I did not want to give any ammunition to those who dismiss the way people in the autism spectrum process as brain damage so did not make any links or comparisons to the fact that in some cases we both miss cues because of our difference in emotional phrasing than the people we communicate with (Gosh I hope that made sense and did not offend).

Sharon: I still HAVE a near photographic memory, so everything that you write goes into your file, and because you write often, that file is "refreshed" in my mind often. Becuase I work on postcards and thus see you beautiful pressed flowers and stickers, I know you, or know of you. So for me, I believe we have a very good friendship becuase we have shared so much together, not only in communication but in understanding of experience. This is one experience I have you don't, but then there are those you have I don't. It still means we have to change our lives and our caregivers have to learn how to deal with them (does that make sense).

I actually don't know any negative things on you when I think of you (were you horrid to me at some point, if so, it is in the blank space). I got a package of emergency pain relief from you and understood exactly what it meant and that I would do the same for you if I only knew how. I hope you understand that. If there was something that relieves your pain, or helps you sleep, I would send it. Instead I send what I can: postcards, a letter. Which I hope give you a time, a minute, a moment of friendship, of more than the boundry of yourself, your dwelling and your illnesses.

Actually for you and several others I DON'T go back and have to read. Once I emotionally link to a person, I know what I know about them regardless of time. So most of the people who regularly post and some who occasionally post I have memory of when I go down the list of address labels, and I KNOW about them, I remember them (the trick is having a database so I don't think I have sent them something recently and actually not sent them something for a long time - particularly when Linda says, "You send them a card in June" and I say, "It IS june!" and she says, "No, and june is a long time ago." and I say, "So we do them this week?" - see how this is a collaborative effort - I have the memory of people, Linda has the memory of my time.)

Wendryn: Today is so much banging and construction on the roof I have been woken from it and chased around by it. It drives me to distraction! However, I believe a day without banging will come....soon (haha, see I can joke about it!).

Most of the time no one knows, but some times when it is about important things, then it is frustrating, that is why my life line phone has verbal reminders that I have to push the button to hear linda say "Have you taken your morning pills?" and schedules on the walls everywhere and emails from Linda when I wake up going, "Hi, today is......"

Neil: What IS a PDA palm? We print up schedules every Sunday if at all possible.

Horaay, I am becoming a cat! The things I don't understand is why I have a sense of time within a single day - that I can understand and plan around. However, I can feel totally exhausted and not know why and Linda will go, "Because you wheeled for 7K two days ago and then yesterday did badminton" and if I had a seizure the night before I am going, "Really? Well I guess that might explain it. Really?"

Fridawrites: One of my great problems now is that even though some/many caregivers come every week, I have NO memory of thier face, when they arrive I might remember them or I might not. Which makes me a wee bit anxious, as it is like a new person every week. Only it isn't. Hard on both of us. The greatest problem is that if I don't know what month it is or Linda's schedule or mine, and know what day it is, I can't know I need to go to sleep early for a 7:00 am blood sample. So Linda has like a BIG job, but she does it very well.

I still do have a very good memory, it is just that some of it disappears, but if I am emotionally connected to it, I remember it - but not in sequence. So for example, I see comment I like of a person on the blog, I then quote a comment I liked before by the same person to Linda, she tells me that comment was made 7 weeks ago. I have no knowledge of this.

It does cause distress in writing beyond the blog becuase it is almost impossible to meet or understand deadlines so I am just anxious continuously.

Gaina: I am reading a manga on a school with learning disorders and they use pictures a lot. I am thinking that getting some pictures of my workers and putting it next to thier names on the schedule would probably help now that I think of it.

What I don't know how to deal with is the "leaving" becuase I have talked this over with people, and they say if they go to somewhere to visit friends, yes, you don't want to leave, but you have to and that is an emotional tug. So that is normal. My problem is that I do not have enough continious memory to emotional understand when "next weekend" is or really anything except that Linda or others are leaving for as long I can emotionally understand ("soon"). I know this is 'rationally' odd but what if you 'emotionally' believed that every time your best friend left, they wouldn't come back. I don't know how to fix that.

Some things are tragic but funny too I think, like yesterday I asked Linda, "Do I get a birthday soon?" because some show talked about a birthday. (the answer by the way was NO).

Laura: Thanks, I appreciate that. I think if I didn't have the seizures, in a few months I could have learned to 'fake' it so closely that no one would ever know, except that I seem to be overly emotional sometimes (so people would be, wow, she is so "emotionally intense!"). I had a friend in school who 'faked' being unable to see the blackboard for a year and a half becuase they didn't want glasses - and I'm smarter than them.

Yanub: interesting, has there been any studies on memory and depression or sense of time and depression? I think there should be.

Devi: Well mostly I was just hoping people didn't think I was suddenly stupid in everything. I still have a lot of language and can use words like definistrate (to throw someone through a window)in daily life. And I still work 12 hours a day or more. But I just have this "thing". So thanks for listening. Also in case anyone else has it or knows someone who has it, I hoped it would help them.

Cheryl: Yes, the most important thing for those I am with is that I have "Now" and I think many people may have a sense of that, I mean isn't PTSD a form of "now"? or am I getting that wrong? So when I said: "I can't believe that was me yesterday." I can't. Because while I remember that, it is already illogical for the sequence, which at the time was blackberries and sunshine.

Thanks for saying I'm not stupid - I also think fatigue, pain and other stressors make this condition worse.

Rachelcreative: even if it goes away, you hang on believing it will come back but then have to "fake it" until it does, right? It must be very yo-yo ish. One of the phrases I say after mental trauma is "I know what I know, I don't know what I don't know." which means, if I don't remember, that's it, I don't. To have that come and go, or the sense of time come and go would nullify the surity I have, however odd it might be. So thanks for telling me but I am thinking I actually prefer what I have (see, everyone thinks what the other person has is worse!).

Lene: This was hard to write. But I am glad I did it and if it help you connect to someone or a memory of someone, then I am very glad I did it.

SharonMV said...

No Beth, I don't think I was ever horrid to you! That made me laugh - I guess I lost my chance to be horrid with impunity. No, it's just that what we talk about & the experiences we share with one another are often difficult and painful ones.

I don't like being thought of as stupid either. I always had a very good memory -not just in school, but remembering conversations & experiences. And skill with language. Now sometimes, I can't express myself at all - congnitive problems, fatigue & level of sickness, fevers all play a role. sometimes my mind is busy dealing with the pain, fatique & rebelliousness of my body - just being there takes all my concentration. Other times my Lupus has messed with some of the neuro-transporter chemicals in my brain which makes it hard to think. And because of this, I am also sometimes overwhelmed with strong emotions as well. Sometimes i'll be talking or thinking and all my thought will start whirling around, spinning in a circle and I'll be physically dizzy too & soon the room is spinning too. No, I'm not loosing my mind, I'm just getting sick & this is the way the combination of Lupus flare & oncoming infection is affecting me. If I have any "smarts" left, I know i need to go lie down & take appropriate meds.

I know I'm still smart. You and your words show that you are still very smart, your intellect is strong and your heart is true.

I'm so glad you got that package. I hope the contents helped. Your words and friendship have been powerful relievers of pain for me.


Olivia said...

No one who reads here could ever think of you as stupid, Beth! you are an extraordinary writer as others have said. I think a combination of many of your posts would make a brilliant book, and I hope some insightful publisher or agent is paying attention.

Like Neil I also wondered if a Palm pilot or some kind of electronic diary/organiser would help. I think even many mobile phones would have a calendar/alarm function. For example you could set an alarm to go off on the day that Supernatural season 3 will be available. You don't have to remember to look at the paper schedule, items would just pop up at the appropriate times.

Raccoon said...

In the old days -- the really, really, really old days -- people used to count differently than we do now: "1, 2, 3, few, many, lots!"

Sounds kind of familiar. "Yesterday, today, tomorrow, soon, past."

Thank you for the descriptions. So, when we write to you we should be extremely literal?

And, obviously, be aware of logic jumps...

Neil said...

Oops; pda's were formerly known as Palm Pilots, then as Personal Digital Assistants. They're palm-sized, handheld computers, and can act as external memory for people with memory problems (my Beloved refers to mine as my brain). They were originally designed for things-to-do lists and calendar-based tasks, and there were and are games, dictionaries, translators, databases and much more available for them. You use a plastic-tipped stylus to draw or write on the screen.

They're now becoming much less popular because cell phones can do many of the same tasks, plus, well, they're cell phones. But my Palm was expensive and does things my cell phone can't - I can draw on the Palm's screen and save the drawings for later reference, and I can use it in hospitals and other places where you can't use a cell phone. And mine has a screen that's twice the size of my cell phone's screen.

I've heard of people with acquired brain injuries using handheld Palm computers as their short-term memory; thought it MIGHT help you, mostly because they can synchronize with a computer, and they're smaller than a laptop.

zen hugs,

Anna said...


I sort of get it, your description. I've got relatives who got similar problems and I've experienced similar things when in deep depression. BUT honestly I didn't think your difficulties were so gave because your blog seems so, well as if your brain is very well.

Thanks for sharing and making the rest of us understand

Elizabeth McClung said...

Anna: I think everyone has aspects of themselves they hide or don't expose, I have been deeply depressed and done my job, gone back and lay down, but I don't tell the employers that. Here on the blog I can control things, I can ask Linda, "When did this happen?" or verify if it has been a few weeks. Regarding today's post, Linda and I had a conversation and I said, "this is the issue that made us approach the facility before, when was that?" And Linda said, "A long time ago?" And I said, "When is a long time ago?" And she said, before or just after Japan." So I do have people and coping mechanisms.

Like when I was a teacher though I had dsylexia, I would give a mini chocolate bar to the first student to spot a spelling mistake in a handout or on the board. It turned what might have been a point of mockery into a positive. Much like this. I am showing the plainest examples so people understand what is going on in MY HEAD - but that isn't what most other people see. Like if I described all the things I had to do to hide my dyslexia, people might say, "I never knew it was so bad, how could you teach?" But I did, quite successfully.

Neil: I think something like that would be useful, becuase it would make me look like a very busy executive. If I am reminded of things then that takes care of the problem. So I will look into that because the ones at home which have reminder messages work quite well.

Raccoon: It took a while for me to figure out if you were joking or serious, so maybe that answers the question. I don't think literal is necessary, unless it is short. I still have a collective memory and a high IQ so the more context the easier it is for me to respond in an appropriate manner (unless I am tired). I COULD fool everyone given a bit more space between seizures but then this blog is about what it is like to have a disability, or this disablity. So why lie. I guess what I mean is telling me "I've sent you a package, it is coming" - that I understand. Telling me, "In three weeks I will be getting something and sending it to you." That I don't understand. I get you are sending something but since the first part is just sort of garblygoop then I ignore the sentence entirely.

Okay, I'll try again, my file on Raccoon goes: Raccoon is a good person, Raccoon knows a lot about corsets because he was in Ren faire, Raccoon went to Korean and had a portable lift, Raccoon sometimes doesn't comment or email for a while and I don't know if he is okay. I wonder if Racoon gets depressed. What I can I do to cheer up Racoon.

That is a summation of your file, I have no idea when I have known you, but it seems a long time. So every comment you make is matched against that. If it seems negative I reexamine it becuase "Raccoon is good" so I must of misunderstood it. And if I REALLY don't understand, I usually send you an email. I hope that answered the question.

Olivia: That is great, I am glad that showing my parts which don't function doesn't make you think less of me. And the idea of putting interests into a palm pilot is great, becuase currently I use lots of things online (like all the shows I like are in my "cart" in amazon, I check every once in a while and if they have gone from "Preorder" to "in stock" I know they are available, but your way, I would combine daily life, AND long term planning for even things like what I want to watch or when I want to see movies or take a weekend. Brill.

Sharon: I am glad we understand each other and I hope you get something else very soon to help your pain. I think I understand the concept of what you say about a lupus flare, it reminds me of when I have a high fever like 106 or so and then trying to work out math problems or something but you are right, it comes back and I am glad it comes back with you.

I think you are very smart, it is just if as for both of us, fatigue, pain and disease take thier chunk, then some days it is hard to use the phone (no joke), or remember what I just thought. I am getting lists put up for when I am most fatigued (at night) so I know what sequence to do: take out contacts, go to bathroom, brush teeth, etc. Doesn't mean I won't be smart in the morning but the noggin is sagging by then.

To all: I had hoped this post would not be used against me to try and indicate I was a lesser person or human being but I knew by exposing myself, the risk of being hurt was there too. In less than a day, someone used this post to anonymously suggest that since I am so damaged how could I hold down a job (even of one or two hours a week) and doing any employeer a disservice. I am sure that this, much as my own disability will continue to be used as a weapon to slash me; there is no defence. What I wrote was important. That most of if not all of these comments were about helping me cope instead of the people attacking which is about making me feel less, emphasising my limitations, while these comments are about accomodation and helping me fuction within society I think shows the calibre of people who read and comment here - or those who have commented this day. I appreciate every comment and every suggestion and encouragement from every commentor, having already felt the pain of the 'other' world, where it is just survival of the fittests and any weakness is thrown back into your face.