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.
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