Living With Agoraphobia

LOL-- actually, I write articles online for a living, and I am writing an e-book on being a freelance writer. Someday I might share my own story, but most people think it's all totally weird-- which it is, of course. I do hold out hope, even though the type of brain damage I have makes it pretty much zero I'll get back most of the memories I lost-- but I don't know if I would WANT them all back, since according to my kids and the other half, I had a horrible life :-). I have heard of selective mutism as a matter of fact-- it is strange. One of my cousins was like that, and they thought she was autistic-- even now, according to the family, she has a real hard time with new people and situations. My grandmother told the doctors and her mother they were all over reacting-- in her day, it was called "over shy" and there wasn't anything wrong with it. She always told my aunt to just let my cousin be, and she'd grow out of it-- and to some extent, she has. I've certainly gotten a lot better in 5 years-- a few years ago I couldn't even type to people, I just lurked around and read, because I didn't really know what to say LOL. Thanks for the encouragement, and enjoy your granddaughter :-) Heck, enjoy EVERYTHING-- you never know when it's going to disappear!

Soooo, you ARE a writer! I guess I know how to spot them don't I! I wouldn't care if everyone thought your story was weird because I know there are people like me who think it's very interesting. It probably would be terribly scary to remember things that weren't so great in your life, but doesn't it make you wonder? Wow, I'm impressed that you've heard of selective mutism..so many people have not. In some cases it is autistic but my granddaughter's (Lucy) is not that severe. Right now she is taking ballet class and hip hop, haha. We're hoping this will bring out her free spirit a bit more and let her feel more confident. She loves to dance which is another story in itself. As much as she will not speak to people, she's not too afraid to entertain them, lol! When my daughter took her to the county fair, the funky music was playing and there is Lucy, this little 5 year old peanut, dancing down the causeway, with all these people grinning from ear to ear, stopping to watch her and getting a complete kick out of it. She didn't care who was watching her, she just kept on dancing her little heart out all the way until she couldn't hear the music anymore. But would she talk or smile to anyone of these people..no. She is a treasure to us all and I really enjoy her. We have a ton of fun together and do nothing but laugh most of the time. I can get just as silly as she can and that's what makes it the best.

I know from my cousin that a lot of people with selective mutism, like people with autism or Apserger's, find creative expression like music, art and dancing to be very therapeutic. My cousin draws-- all the time. She has always been an amazing artist, and when she was younger she communicated by drawing cartoon strips of herself talking to the person she wanted to communicate with. The other kids we knew actually thought it was cool and she was doing it to be different-- it wasn't until she got older that kids started thinking she was weird. She writes to me a lot now, and she writes even more than I do. As a matter of fact, she is the creative writer-- she is working on a children's book these days. She has written over a dozen, but she hasn't had the nerve to try to publish them yet-- but one of these days the family will talk her into it, I'm sure.Creative writing, other than poetry and an occasional short story, doesn't just come to me very well-- I see what I want to write so clearly, like a silent movie-- but I can't get the words to flow. One of these days I'm sure I'll manage to do it-- but it's weird. Before I fell asleep, so to speak, I could write fantastic short stories and poems with no problem-- now, I see them and feel them, but the words just don't want to come out. Sometimes it's depressing.

I think it is too, to some extent-- what always interests me is how much of it is choice, and how much isn't. I have noticed that a lot of young people today don't seem to understand communicating with real people very well-- it's all about facebook, and texting, and XBox games online. They don't seem to understand people in person. I can't deal with people in person now, even though I would like to-- it's just impossible. The world is too full of strange things and strange people for me. People today seem to choose to be away from other people a lot more-- I don't know how good that is, really, considering what society is like now. Stuff happens every day that would have been unbelievable when I was a kid, and no one seems to wonder why! Technology is a great thing, but I am beginning to think too much technology can be a really bad thing too--it's like people are become less "real" or something-- which makes hurting people less of a bad thing. In my case, I can't be with people-- but the more I hear about what happens in the real world, the more I wonder whether I'm not better off sometimes. Is it just me, or is the world really a lot weirder than it used to be?

Getting away from the real world I think is becoming a way with the world and is not an isolated case with either you or me! And by the way, are you able to connect to iwriter? I am having a problem today. It keeps saying: Warning: mysql_connect() [function.mysql-connect]: Too many connections in /usr/www/users/linkmetr/iwriter.com/admin/config.php on line 10 Critical database error: Connection was refused by server Please try again later

It's not easy being me . All the things other people take for granted--knowing their other half and kids, recognizing their face in a mirror--not a large part of my world. I got much better after I fired all the shrinks, actually--it boggles my mind that they couldn't see that under my unique circumstances, my terror is entirely normal. Go Figure.

One of these days I will write my story-- but at the moment I am still trying to deal with the new life I have-- and it isn't easy. I know what you mean about prisoners and what they call culture shock-- I wish my culture shock was that simple. While prisoners don't directly experience the world, they know through friends, TV and other media something about what's going on-- unless the prison is really remote. In my case, I have nothing to base this world on, which is very difficult to deal with. It's funny you mentioned cell phones-- since mine had been ringing for 4 hours the day I got home, and even after I found it, I didn't know how to answer it LOL. The worst thing, believe it or not, was self service checkout lines in the supermarket. I had my first major panic attack when I saw one of those, and had no idea what to do with it. Everyone else was just zipping their food through, and it was beeping, but mine wouldn't beep. I didn't know about the bar code part. Talk about embarrassing!

Christine, I believe I have heard of them trying to use viruses to carry various treatments. Way science fiction like, but it makes sense. You are right, this is a great discussion to read from all contributors. This is part of what I love about MyLot.

West Nile this year is actually quite dangerous-- normally, only about 15% of people get the encephalitis, but this year it's over 25%, and it's the worse variety that I had. Memory is stored in different ways, and in different parts of the brain. You've got 2 types of short term memory, and 3 types of long term memory-- the two short types are basically stuff that happened within a day or two and stuff that happened within the past week. How much you remember day to day is based on how man different associations your brain makes: for instance, if you have a short conversation with someone in line at a supermarket, you probably won't remember anything special about it-- no associations. But if they're wearing your favorite sports team's hat, and it turns out you grew up in the same city, and went to the same school-- you'll remember. Long term memory comes in 3 types-- motor memory-- things like riding a bike or ice skating that are muscle related-- you almost never lose those unless your brain damage doesn't allow you to use those body parts or motions-- even then, neurocognitive therapy can help you regain the skill a different way. Once you learn to ride a bike, you really never do forget! Then there's knowledge based learning-- school. The more associations, the more you retain-- if you use algebra in your job alot, you remember it. But I bet you can't remember the quadratic formula without thinking about it-- when was the last time you had to solve a polynomial equation LOL. Knowledge based memories are stored in multiple brain areas-- so damage in one area doesn't mean you can't relearn a knowledge based thing. I completely lost my chemistry-- I was a genius, actually (and still am, which is really funny) but I didn't lose my history or math. I also didn't lose my English, but I lost the Spanish, Greek and Latin I apparently learned in middle and high school. I am getting them back, but at the same rate I learned them the first time-- re-learning them hasn't led to finding the old stuff. Associative memory is the sum total of all your everyday life experiences, built up over time-- one memory associated with another, and another-- when I first saw my oldest son in the hospital, he LOOKED totally familiar-- but I had no idea who he was or WHY he looked familiar. A whole section of my brain got fried, and it had all those years in it. Some memories, liked knowledge and motor memories survived because they were backed up and kept elsewhere as well-- but the other stuff is long gone. Each person's brain stores memories in certain basic areas-- but each person's association process is different, so the same brain damage in two different people can have two different results. My senses of taste and smell have totally changed as well, and I now hear music, 24/7, inside my head. I call my personal radio station KHAL-- all hallucinations, all the time LOL. A lot of the music is stuff I remember actively from 1976 back and 2007 forward-- other music is purely instrumental, and according to the neurologist, may not even be "real"-- meaning my brain is probably making it up. According to the doctor, the hallucinations-- phantom smells, tastes and the music-- come from nerves misfiring trying to connect where they can't anymore, and they probably won't go away either. It's a pain, because a lot of my food tastes like metal now, or pepper, or something else weird-- and sometimes the smells are really bad. When it comes to amnesia, there are two basic kinds-- dissociative and retrograde. Dissociative happens when you suffer a serious traumatic shock, like an assault, or in a war-- battle fatigue. Your mind just can't take the memory, so it blocks it out. With therapy, people can get those memories back. You can usually recover a memory if it shows up in dreams and nightmares, because it's usually dissociative. What I have is called retrograde amnesia-- meaning I lost my past. That's what you got too-- from your head injury. Mine is severe, but there's one poor guy who fell at work, got a simple concussion, was sent home after 3 days and told his memory would come back-- and it didn't---after months of migraines and other problems, he was diagnosed with severe frontal lobe damage and retrograde amnesia--he lost 46 years of his life. He had been a pro football player for the Patriots -- he even lost his childhood, his business skills and everything-- he had to start from square one. I at least had a lot of my early years still-- he doesn't. Of course, my early years stunk, but still, I feel bad for him. When retrograde amnesia is caused by a serious trauma or in my case an infection that causes actual physical brain damage, it's permanent. Even now, every time I get migraine, I lose a day or two-- or when I have a breakdown. I keep a journal daily, so when things do happen, I can go back and see if I missed anything important :-). Having lost a few days, you have a small idea what life is like for me at least :-). Most people just can't get it at all. When you think of all the things that happened during those years in your life-- not just to you personally, but in terms of technology, medicine, society-- you can see why the world is a very scary place for me. Heck-- I didn't recognize any of the equipment in my hospital room. I didn't know what a cell phone was, a computer, a calculator (pocket kind)-- there were no familiar cars, buses, phone booths, traffic lights-- I wasn't even in the same state I had grown up in. I was in Tucson AZ-- and as far as I knew, I had gone to sleep in Boston, Mass. Microwave ovens, videos, CDs, DVDs, self checkout at grocery stores-- the list is endless, and grows every day. I spent two years trying to explain to shrinks that I didn't care if I NEVER got my past personal memories back-- I need coping strategies to deal with life NOW. I have been much better off since I stopped talking to shrinks. An entire squad of Neurologists have decided my problem is physiological, and they can't fix it anyway-- and the shrinks couldn't give me a cure for the agoraphobia either, since it's reasonable under the circumstances. These days, I just take all my meds on schedule, see the doctor once a month, and deal with it :-).

It is probably one of those newly, untested procedures that have to go through clinical trials. Unfortunately for my father it is too late, but I'm glad for those who may benefit from it. This has been an educational discussion and I agree with you that it is the valuable thing about myLot.