I think this may be the first ‘post about me’ that I’ve made here on LBnuke, or anywhere else for that matter. I post about things I do, places I go, things I find, things that are interesting to me, but never anything that is ‘about me’.
Part 1 — The background
So, why now? I’ll get to that soon, but first, the part I hate. The background information. Unfortunately, it is part of the story, so I can’t really avoid it.
Okay, here goes… Hi, my name is Lori, and I’m crazy. I guess that wasn’t so bad. Crazy how? That is part of the problem, and part of the reason I am writing this in the first place. No one knows exactly what is wrong with me. I’ve been diagnosed with about a million things since I was around 5 years old. The ones that seem to come the closest are schizophrenic and autistic.
It is lonely and frustrating to have a thing without a name. You can’t google it! It is very hard to find other people like me, and when I do, I get very excited. That is another reason why I am writing this. Maybe someday, someone like me will find this, and it will make them feel less alone; less like a freak.
There is a lifetime of background. I’ll give you the short version. The other version is 38 years long.
I hear screaming in my head. Sometimes it is so loud that I can’t think, or speak, or hear the other sounds outside. There have been times in my life where I would rather be dead than have to listen to it for one more second. At those times, in my mind, death equals silence. Silence equals peace. Other times, it is more quiet, like background noise. Sometimes, I can almost ignore it.
This has been going on as long as I can remember. I was a weird, socially awkward kid. A geek, like I am now, only before being geeky was socially acceptable. I was the strange shy fat kid. I was treated very badly, by very many people. That is all I will say about that. Oh… no it’s not. Then you will think the worst, and in some cases you would be right.
I want to note that my parents did the best that they could. I had everything I wanted and needed. It wasn’t easy to have a kid like me, and possibly even harder to have the teenager that I became. I believe that if they knew then what they know now, things would have been different. I guess it is like that for all of us.
I would also like to note that my grandparents, Edythe and Lenny, kept me sane more than anything else. They had a magical way of making me calm, no matter what was going on. My brother Brian and my Aunt Wilma helped too, and our dog Pepper was always a friend to me, sometimes the only one. These people (and Pepper) accepted me for who I was, at least most of the time, and I will always be grateful for that.
I think my parents accept me now too. We’ve come a long way in the past 20 years or so. They are now part of my life, part of my support system, people I am very happy to see, and who I miss when we don’t see each other. You might even say we’re like family! But of course, they are my family, and they have always been there for me, and I will always be grateful for all that they have done and continue to do.
Another person who has helped is Lucy, my old therapist. I think that in general, I am not really the therapy type. I’m not a talker, especially in a one way relationship like that. But she helped me through some very hard times in my life, and taught me that what happens in my brain is not always random and unpredictable. There are things that make it worse, including stress and hormones. She taught me that there are things I can do to help myself feel better. She helped me see that there is medicine that can make things a whole lot better, and allow me to have a much closer to normal life than I otherwise could have.
Many people have helped me. I will mention some of them here, but I’ll keep it short. My other grandparents, Lenny and Anita. Aunt Sally. Bobby and Howie. Cindy and Helene. Kim, who saved my life and didn’t even know it. Terrence, my first girl. Cyd, Ellen, Aimee, Andy, Gilbert, and other Buffalonians that I can’t think of at the moment. Stephen King. My doctor, Joan, who was the first doctor to listen to what I had to say. Julie, Mary, Gobi, and Lori H. Nancy, who helped me in more ways than I can count, and who is still my friend, even after having to deal with me at the worst of times. Jodi, my best rat friend. Jo from Brixton. Diana, my buddy and my family. TC, my partner in bad brains, web geekiness, and martial arts. Susan, my neighbor across town. My Senseis, Allyson, Amy, and John. They have all taught me much more than just how to kick someone in the head. My very patient classmates, Anastasia, Lavina, and TC. Shiki, my cat that I like to call ‘pony’. And Karen, my partner in life. I can never say enough about how much she has helped and helps every day to make my life happy, peaceful, calm, fun, exciting, interesting, and meaningful.
So there it is. The background. The people are important. They are the reason why I am here to tell this story at all. If I had to go through this life alone, I either would have killed myself by now, or more likely, I would be homeless and sitting in an alley banging my head against a wall. Really. I am writing this story for other people like me, and for the people who care about them. Both can be lonely worlds. Sometimes it helps just to know you’re not alone. I have a dream that someday, I can help someone like me who hasn’t been as lucky as I have.
Part 2 — The good, the bad, and the ugly
I think the best, and possibly only way, for me to write this, is to just ramble. I hope it turns out somewhat readable to others. Maybe I’ll edit it later. Maybe not. So here I go…
I don’t think like other people do. I never have. My brain is different. I think in grids, rather than straight lines. Today, while reading the article that inspired me to write this, the author described it as thinking in pictures rather than words. I believe that this is also an accurate description. She has Asperger Syndrome (AS), a kind of autism. That is the first time I’ve ever heard of it, and after a google by Karen, I wonder if those are the words I have been trying to find for so many years.
But I digress. Back to the pictures…
Sometimes, I can make sense of the whole picture, but ‘the words’ mean nothing to me. Maybe an example is best. How about a computer, something very near and dear to me. I can build a computer. I can fix a computer. I can program a computer; but I can’t learn how to do any of that from books or in school.
I can do it because I can understand a computer. It is a finished product. I can see how it works. I can take it apart. Seeing the whole picture, makes it possible to understand all the parts, and how they fit together. Or maybe it’s seeing all the parts and how they work together that makes me able to understand the whole picture. I don’t know, but it’s the same with developing web sites. I can’t learn ‘how to do it’, at least not the way regular people learn things. But I can do it because I have seen websites. I can take them apart to see how all the pieces fit together. It’s like learning things backwards. It seems to be the only way I can learn things, other than constant repetition over long periods of time, like in martial arts.
I can’t work a ‘normal’ job. But I can work many hours in a day, and I often do. I make web sites. I learn about making better web sites. It was an article about making websites that led me to the article by the woman with AS. Developing websites is a perfect way to think in grids. Pictures. Sometimes even spirals. I know enough now, that I can read books about it. They make sense to me now because I already understand the big picture. Now the books can help to fill in the details.
I can do a lot of things. Also, I can’t do a lot of things. There are things that seem like they come naturally to other people, that I just can’t do. Simple basic life skills (like paying attention), most organizational skills, and many social skills are things I don’t have, or have only in limited quantity, for limited periods of time, or about limited subject matter.
I hear things delayed. Sometimes the delay is long enough that I have to wait until the whole message comes in before I can process it, understand it, and respond to it. Sometimes this takes a while. Less than a minute, I think, but that can seem long to someone who is waiting for you to respond. It is also enough time for a conversation to move on to the next topic before I can even process the last one.
I forget things, and I forget them fast. In the time it takes me to go into the next room to get something, I often forget what I was going to get. Sometimes, I never even make it to the next room. This happens more times a day than I can count. It is annoying. Other things, I can remember like they’re happening right now, even if they happened more than 30 years ago.
One of the hardest things is that I can’t filter out external stimuli like other people can. I get completely overwhelmed when there are too many things going on. An example is the mall. Lights, people, sounds, shiny things, colors, coming from all angles and directions. If I spend a long enough time there, my brain shuts down. Everything becomes a haze. All the sounds blend together. The colors and lights and shiny things are like a movie playing in the background. I go far away. People sound like they’re far away when they talk to me.
So that was the good and the bad. Here’s the ugly…
Sometimes things get bad. Very bad. Sometimes the screaming in my head gets so loud, I want to die. It’s like being tortured from the inside. It makes my head hurt. It makes me shake. Sometimes it makes me cry. Hard to hear. Can’t talk. Can’t sleep. Can’t do anything. It sucks. Like an ice pick in my head while it is being crushed by a vice, and someone is pulling my hair while another person beats the crap out of me. A horror movie scream is stuck on auto-repeat, in surround sound with the volume cranked to max on the thousand watt stereo inside my head. It is unbearably loud. It hurts everywhere. Sounds pretty dramatic when I put it like that, but that is the closest I can come in words to describing it.
Enough ugly for now. It makes me tired. More tired than I can say. It can take a few days to recover from one bad night. The meds make me tired too.
Part 3 — Reasons to live
There are things I do that sometimes help me when things are bad. I will list them here in the hope that some of them may help someone else some day.
- Reasons to live – I keep a running list in my head of reasons to live. When I am happy, and feeling good, I add things to the list. When I am feeling bad, I ‘look’ at the list to remind me of those things.
- Rest – I can’t say enough about this one. Sometimes it’s like magic.
- Talk to someone – As much as I don’t like this option, and often can’t do it when I need to, it can be very helpful in feeling less scared and alone.
- Give yourself a break – it’s hard trying to fit into the world, a constant effort. Spend some time in ‘your world’. It is home.
- Let people help you – This one is very hard for me, but it’s amazing how even little things that are simple for other people to do, like reminding you about things, can help so much.
- Have fun – sounds obvious, but sometimes it’s easy to forget to do it when so much else is going on. Computers, martial arts, guitar. Those things are fun for me, and all usually work well with my brain. If they don’t, I can alter them to suit the moment. Usually that means just doing it, no thinking. Don’t try to play a song. Just play guitar.
- Find peace – even if you can’t find it on the inside, look for it on the outside. I go to the water to find peace. At the very least, I find birds.
If you are still reading this, then I will guess that it is not completely jumbled and random. Writing is easier than talking. Easier to keep track of the straight lines because they are there to see, and cannot be lost in the split second that it takes to get to the next word.
I hope this can help someone. In all my years of searching, I’ve only found a handful of people (on the internet; never met any of them) who are even somewhat like me. After reading the article and googling yesterday, it seems like I may have hit the mother lode. Reading about some of the people with Asperger Syndrome is like reading about myself. It’s like finding the holy grail or something. It seems like the standard treatment is the meds that I am already taking, and that no one really knows how to fix it. Even still, it is a huge thing to know that there are other people like me. That maybe I’m not such a freak, or at least not the only freak. If you are like me, you are not such a freak, and you are not alone.
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10 thoughts on “A post about me…”
hi, your story is so familiar… while i don’t get screaming in my head, i get “deafening silence”, every once and a while the mind just gets so silent i get dizzy and it’s like i can’t hold on to anything because everything disappears. this happens rarely these days.
All that about the computers and not being taught it, totally makes sense. The delay in hearing, that is a major part of my life. I’ve finally noticed that this delay is in everything. I also figured out that while it may appear as a delay, it’s actually this huge river of processing the mind does in parallel. It’s like my mind processes a single word one hundred ways, it looks for hundreds of interpretations of interpretations. And this happens in real time, and on the outside i might look a bit dull, but on the inside is a whole world that occurs in a flash. Then i have to turn that world into a single response, and that is the toughest part, to communicate an answer.
This is a beautiful post, thanks!
Thanks manji 🙂 Thanks for your story, too. I hear you about the huge amount of internal processing required to even understand what all the words mean and how they fit together, and then make even a simple response. It is exhausting!
Lori, As I mentioned on the Autastics bulletin board I enjoyed your post. In fact I like it a *lot*. I’m in a bit of a rush at the moment but I look forward to writing you in the future. Is there a provision here for a private post or email? I am on the autism spectrum. I don’t experience the screaming you describe (at least not in many years), but I do experience a persistent sense of terror and isolation. I have attempted to address this with years of non-dogmatic prayer and meditation. *Inside* the torment I find I am very happy and almost burst with a desire to share it. Have you any similar experience? Greg ):)
Hi Greg. Thanks 🙂 I have a very similar experience as you do w/being happy. When my mind is clear and I can think, I am generally very happy, even bursting with it if I’ve been feeling bad for a while. It is a huge relief. I’m sorry you have such a hard time too. It’s nice to know that there are folks like me in the bay area. Someday, I will come to a meeting, but I may not talk much 😉
I look forward to hearing from you. There is private messaging on this site for registered users. Anyone is welcome to register. You can email me through the contact form (main menu–>contact) as well.
I loved your story, and I was really appreciative of Part 3. I’ve printed off the list of things that help you stay alive. You are an amazing woman, and always remember that your friends appreciate you.
Awww shucks…. Thanks Kari 🙂 I appreciate your kind words and support. It means a lot to me, even if i’m too shy to ever say it 😉
I liked your post and I understand
I don't know how to start this, it's so frustrating. I am AS and I'm glad you had the courage to post it helped me a great deal. I saw so many thing that made me say That's me! That's me! I am 42 and have never been diagnosed I would like to be but am too scared to do it on my own because I just can't communicate whats going on. My family was never very supportive and still isn't. By my family I mean my mom, my dad, my sisters. My husband says he'll help but does nothing or has no idea what to do. Family also thinks that I need to "get out there and do things" on my own so I get over this. I try to tell them it doesn't work that way but they don't listen. Posts like your's helps because I can take this to my husband and say "see this is AS this isn't just me and it won't go away. Thank you, thank you for your courage I hope some day to have the same! My love to you.
Sorry you are having such a hard time. I hope you can find some support somewhere. There are lots of great online resources and maybe some local ones in your area, depending on where you live. It is pretty hard to find resources for autistic adults in most places.
Have you checked out the Autism Women's Network website? The forums there are a great place to ask questions and get information. Glad I could help a little. Good luck with everything 🙂