This is a post about my brain and the destruction that is happening to it. A destruction that seems permanent and no matter how horrific or terrifying I find that statement to be it doesn’t make it go away. I am putting in pictures from the double width page Oga Exhibition Catalogue, 268 pages shipped from Japan of an Exhibit, now finished of his complete work, and a Catalogue in Full and breathtaking colour. The first picture is a three double width page large display, a foldout starting his work (and a few pictures of other pretty things).
How do I begin? Because for me there is no beginning, there is no day, or week, or month, there is now and soon, and tomorrow sometimes, and sometimes literally just “now.” And when I am in a better state, I am able to articulate or try to explain to Linda how she needs to talk to me, which is to use simple sentences that do not refer to time or things outside of my memory. I need this because otherwise I will become worried to the point where fear overcomes me and I may be curled up because I do not know what “We have some bills hanging over our head but that should be okay by December” means. I know “Bills” and I know it is my fault and I know “hanging over head” and that is all I know. I don’t know what to do, I know that Bills must be dealt with and if they are “hanging over head” then they are serious indeed. I am frantic and by the time Linda sees me seven hours later I am trying to wheel down to a book store with books to sell or I have already done something. I have sold something and have $12 and I give it to her crying and ask, “Is this enough? Will this stop the Bills?” I do not sleep. So she needs to say, “Everything is okay.” Or “I am glad you bought that gift for XXXXX but we need to not buy much for a little time, okay?” and sound calm. And then say that again tomorrow or the day after because I cannot remember beyond five days, or what used to be five days, only now sometimes it is three days or less. “We are going to not buy anything more for a few days but everything is okay.” She says a few days later.
Do I know that being talked to like this makes me sound like a child? Of course, and people who are intimate with me say things like “while you might be not as smart as you used to be you are still one of the smartest people I know.” Which hurts. A lot. Because I spent my life obeying what I believed what my calling, my vocation, my onus by God, to use the gift given to me, of a unique mind that could remember almost anything. As Linda says, “There wasn’t a word or phrase however obscure I could say that you couldn’t talk for an hour on the history of or how it came to be or was used in history.” Which isn’t as boring as you might imagine as I delighted in the obscure like the rich who used to advertise for hermits to go with their “follies” (fake castle ruins, that they built; which wouldn’t be complete without a mad or poetic hermit to go with them).
And I am not a person who sits in my 60’s or 70’s or 80’s and realizes that a bit of blurring on the edges is inevitable. I am a person in my 30’s who has had a partial stroke in the right temporal lobe (it is believed, and all evidence supports), and now has seizures there, big seizures which PERMANANTLY destroy even more of what is already damaged. If not for Linda, Cheryl, my workers, the computer, my wall charts and other systems, the damage would be affecting my writing and my life more than it does. How do I know I want a punk backpack and now one with wings from Japan? Because I think about it EVERY DAY (it is literally re-imprinted daily). Things that are important I have routines. I also have sheets Linda has written and posted in places telling me what my routines are. What do I do to get to go to bed? It is written on a list, is #2 done, okay now on to #3…
See, I can’t even tell if I have already written this in a post for everyone to understand. But I have good days and bad, and I think this is a good day.
This lack of remembering is in a way why I am putting up pictures of beautiful things, because the things I remember best are those I am most emotionally connected to (I might remember the pictures and thus remember this blog). But yes, I forget Linda, and on a regular, almost a bi-weekly basis. This is painful for her, I know, and for me, because I pretend later, that I cannot imagine what it might be like for your partner of 15 years not to know you. What should I say, “Sorry about that TIA/mini stroke I had that night where I forgot you for two days.” It is only recently that I am now back to the present, or so they tell me, since I believed it was 2003 after another seizure. But with only 1,000 words or so, you don’t see what I have been hiding since…….haha, see, I don’t know. We argue, Linda and I: I say I have know someone for “years” and she says, “Since June”. To me that means almost the same thing except that it wasn’t as recent as June because June was very, very recent, and only now and then can Linda and Cheryl convince me that it is NOT June. I am not sure why I think it is always June or 2003 but I do.
Today and yesterday I asked five people “What IS Thursday?” and only Linda was able to answer me. She showed me on the graphs she puts besides my computer where she was and where I go and who comes and goes. I point to her sheet and point to 10:00 am and said, “I called, you not there, not Thursday. What is Thursday?” She said that she was different but Thursday was here. This is a concept I cannot understand. There are a lot of concepts I can’t understand. In fact, I can only write this because I haven’t HAD a seizure in three days, because time before and after a seizure is forgotten, and the mind retreats and I retreat. In my recent seizure which turned into a TIA (which is a micro stroke), which I can remember afterward, I woke up in an apartment I did not recognize. Linda was there but not Linda, a different Linda. And I came into the middle room with the computer and the computer my hands knew how to turn on, though I did not know how they knew that. It asked if I wanted to play a disc, and I did, and a show started playing.
The phone rang and there was someone on there I did not recognize so I dropped it. Linda was not here. There was a lot of mess. The counter was covered with things, and there were wheelchairs all over. I was very tired. Linda showed up. She said she was at lunch. I asked her why I wasn’t teaching. She said that I was sick. I said does that mean I wasn’t going to get any substitute teaching jobs until I was over the Mononucleosis (a disease which makes you tired for a month or so, easily caught at uni). She tried to explain that I was sick longer than that. I gave up listening and she could see that because my head was hurting. She told me I needed to use the wheelchairs. I said, “Isn’t this a bit much for mono?”
She laughed in an odd/funny way and then got me lunch and I fumbled with my hands, I must have been more tired than I thought. As she left she asked me what year it was and I told her (2003), and she shook her head and said she would see me in several hours. I watched the disc until it was done and then I went on the internet which was much faster than I remembered. But then, sometimes when someone would ask a question, like on the blog, I would know the answer but afterward my head hurt and I couldn’t remember how I knew that. I couldn’t remember what I had just written (which is on my left side of my brain) and when I read it back it sounded like someone far more sure than I would say.
Sometimes there are days that I cannot go outside or someone has to be with me to stop me from trying to go “home” wherever that is that particularly time (in this picture you can see Kiki if you look closely, from Kiki’s Delivery Service, running up the path home – Do you remember Lene, I still do?).
I also have emotional liability, which means I have extreme emotional responses, sometimes from nothing at all. I am not sure if I have talked about this. But for example, I have cried through almost two complete toilet rolls for no perceivable reason. This isn’t depression because that I can remember. And sometimes I am very content for no reason, but that is less often, because there are always so many people who want answers that I don’t know the answers to.
I spend my time getting postcards ready for people I cannot remember. I have to look up each persons' name on the computer and cards and read all the text and get a sense and pick the card for them and then do the next person, all 30+ cards. And when I do the wood blocks and the rubber stamping, I have to do it all over again. And when it is done and I put on the stickers and write the note, I send it out. One of the reasons I take pictures is that I have no idea how many postcards I have sent out. Cheryl I think estimates it is about 400-550. I don’t know. I don’t know how many “surprise” presents I have sent out or to who, I think it is 50-70. Maybe more. Now that I have no money I just use what is lying around. Which is the other reasons of these pictures is because I will keep things and then I will send them off but because I don’t know that I will remember a week or a month later and want to see it but I gave it away. So like a butterfly, I must appreciate what is around me, which is why I try to surround my desk with things that will appeal to me and stop me from looking elsewhere. I sometimes buy things like this A4 holder about the Anime show Air TV, which I can relate to far more than I would ever want to (“Gao!”). This I traded for, so it cost me nothing at all, actually I got some postcards in the deal which I sent out.
I think what I was saying is by the time I get the thank you from people for the postcards, I have NO IDEA what you are talking about. Please don’t stop from emailing me, because it is the way I know I am making a difference. I try to fake it in a reply but if they are happy then I am happy because the part of me that had a brain that day did good, even if the me of today can’t remember. I have a list, or lists for the weeks of the post and gifts that are sent and this week and maybe last week, I can’t remember, but there are ticks by some names so I have been trying to send out thank you emails to people. I am sorry if it is weeks late or only a week later, I don’t know. Sometimes the lists Linda or Cheryl make don’t have dates. One week Cheryl brought boxes and then we were busy all weekend and I simply didn’t open them until she returned because I could not trust myself to open things by myself, not to get them mixed up. I need someone there, someone with a REAL brain, to remember what came from which package.
I appreciate every piece of post and every gift, and I try to write back how they are emotionally remembered by me. And I hope that if you sent a gift you got or will get a email about that. But you can see why for me, I cannot carry the obligation of financial issues. I simply am not mentally capable anymore. I can work at making people happy, people who I may often forget until I repeat their name every day or every few days. Or people who make a strong impression. Or I will have a seizure after I open the gift and then forget and receive the gift all over again. Which makes it sound very romantic, like Totoro here from the movie of the same name, making the sound of the wind, creatures of the wild, of myth, always existing in the now.
Except in THIS WORLD I have to be watched all the time. I have a lifeline phone with reminders and the phone will NOT stop telling me there is a reminder until I push the big button and then Linda’s voice comes out and tells me exactly what to do. And I do it. Because the person who is MOST likely to overdose me is ME. I can’t remember 10 minutes later if I took a pill.
Is it great that the people and places I go know that I am brain damaged, that I “Used to be someone”? No. It is not fun to have a 20 year old snidely remind you that you took out that DVD last week, and “You ranted about how bad it was for 10 minutes.” And I have to smile and say thank you and find something else. Because I will remember the story: stories I remember.
I guess this is the end of part 1 of trying to explain what it is like to be brain damaged, and I REALLY hope I have not done this part already. Next time I will try to explain the idea of language schema and how exactly my language center is damaged and how sometimes I can fool people and how and why it becomes obvious. The fastest way is just start asking me questions, and I think I am speaking normally only I am speaking slowly with mixed word or “word salad”: words that start with the same letter but mean something else altogether, or I just get stuck and start stuttering, or I look around in confusion. And people turn and start talking to Linda because what is the point of talking to me, even if I CAN understand them. Except sometimes I can’t and I say, “I don’t know what you mean.” And sometimes they say it over and over and I keep saying “I don’t know what you mean.” And they get angry, this happens with Time a lot. My care worker stopped getting angry at me and now says, “Today is Thursday and soon you see Cheryl and then I come back.” Which I can understand. I still have a high IQ, reason and deduction, I just can’t understand sequencing, and I don’t know why, but knowing that you can’t understand something doesn’t make you understand it. I wish it would.
Oh, if any of the pictures here end up in a package to you, that means I have emotionally enjoyed them and am giving them on to you. It is okay to get them, and if you don’t enjoy them, please send them to someone who does. Because I am trying to send you the feeling I get, not just an object. It is a form of communication.
5 hours ago