Oct 10 2007
A Week of Neurodiversity
A friend sent me a link to an Adults with Asperger’s site. “Celebrate Neurodiversity” was the message. I loved it. It’s okay to be different, the Aspies told me. It’s okay to be the kind of person who’s driven to madness by the drip-drip of a leaking faucet no one else can hear, or who wears headphones to avoid the high pitched, hyena-like laughter of a particularly annoying coworker. It’s okay to be a functional agoraphobic who shops for groceries at two a.m., and who has never attended a party she liked, and who would, if she didn’t have to earn a living, probably never leave her apartment. Okay to think in terms of “what if” instead of “what now”. It’s better than okay, really; it’s diversity. Join us, celebrate. Look, you can even buy the t-shirt.
Comedy and tragedy. The two familiar masks of drama are nowhere near as complete as
the colorful chart of emotions I once saw in the office of a therapist. That chart, which looked like a larger and prettier version of this one , was filled with variants of sad, mad, and happy, but still left one emoticon out.
The feeling of blankness. Not to be confused with no feeling, or feeling numb, the blank feeling is one that entertains an emotion on the side, and may even feel it somewhat strongly, yet it doesn’t connect to the center – it doesn’t make the journey from the periphery of the heart to expression or speech. Instead, it stays set apart from a person’s mainstream, a segregated shadow of darkness or light.
The band, meanwhile, plays on. One foot in front of the other, forward march, out the door, and onto whatever duties, people, and obligations lie ahead. A straight face, smiling appropriately at the right times, able to pass socially, able to empathize, argue, and rejoice with others, read the reports, thank the waiter, negotiate traffic, engage in meaningful conversation, be “one of the team” – in all ways being fully human, but there’s a blankness inside. As if one part of yourself is connected to the world, while the other part, a significant part, remains in some sort of austere seclusion. There’s a cement bunker of sorts, locked up, surrounded by high gates and a four-alarm security system, and you miss whatever’s in there. You’re not sure what it is, you can’t find it, but maybe you would if you could just get away from everything for a while. If you could just sit in stillness, in quiet, for as long as it took. There’s never enough time.
I explained this, and a whole lot of other things, to a therapist once. She told me she thought maybe I had Aspergers. No, I said, thinking of my twelve hour long days and side projects, I think it’s just what happens to some people when they’re overwhelmed. She then gave me a list of questions. Yes, Yes, No, Yes, No. She said I had some of the signs, but I’m not convinced. I happen to like looking people in the eye, and find it easy to empathize. So, okay, I have that thing about the number 9, and body language is my first language. . .so?
I mean it happens, right? To you? The blankness? The disconnect? Yeah, I thought so. We all have a bit neurodiversity to celebrate.
Okay, I don’t get the MySpace craze at all. The glittery messages, the great drive to have more than the next guy’s friends. I don’t get it, but almost everyone has one these days and I’m often asked if I’m a member. So I tried it. Got the custom skin – too lazy to wade through the thousands, I picked out the first one that had green in it – filled out my personal info, shared my favorite movies (Radio Flyer, Once Were Warriors), listed all my J-ladies (Joni, Joan, Janis, Janis I.) as musical faves — I even wrote a few posts. And I felt like an idiot every time I saw the page. Jane, with her instant new friend Tom,
and her backup never-met-him friend Tod in case Tom backs out. . .sitting on some godawful cyber-carpet that looks like it was borrowed from a Victorian whorehouse. Sitting. Waiting for the magic of MySpace to dawn on me. A glittery Elvis or sparkling fairy to come gyrate on my page. Even a little promo ad in my comments section – come see my punk- infused Southern rock band play at Cal’s Bar & Grill Tuesday night – Nothing.I felt naked, alone, but like there was someone secretly watching. Maybe it was Tom.Within hours, I logged back in to cancel my account. Tom, my good friend, replied with an automatically generated email, telling me it would take 24-48 hours. No personal touch, no sense of urgency now that I’ve spurned his mega-million dollar, and popular worldwide creation. Forget Boxcar Willie. Everyone from Brazil to the Bronx knows Tom. Sitting at his desk in a white t-shirt, generously extending his cyber-friendship to all who would take part in his good fortune at winning the dot.com lottery.
In the meanwhile, I feel like I’m a spinster hanging around a high school dance. I really just want to come back home to my own blog, curl up in my chair, with a lazy and loyal dog and a carafe of Baileys & Coffee.
Somehow I won’t feel settled until the page is gone from view. It’s like having a huge hairy butt cyst, ala Rush Limbaugh, left dangling out there in cyberspace. Please, Tom, my buddy, my pal, save me from the glitter wars, from the desire to click “Add a Friend”, or “pimp my page”.
29 responses so far
Hi Jane,
How refreshing to know I am not the only one who doesn’t get my space!
My daughter wanted me to get one, I never go on it. I just don’t get it.
But then I dislike text messaging as well. All this communicating, but no one is talking to each other any longer. I get a headache on my space, too much information all crammed together, scrolling forever, and ever…
Eh - not to mention the time it takes to download one of those super pimped-out, obscenely glittery pages, Allison!
And I’m totally with you on the text messaging! My fingers don’t fly that fast, and that beep-beep-beep hurts. . .you guessed it. My ears.
I am a fairly new reader to your site and found you through Rosie’s site. I had to change my name in order not to be linked with others bloggers. I am the one that loves to write and needs a kick to get started.
After reading some of the blogs over the last couple of days I see a few people blogging here just ripping others apart and breaking down your own words. I thought my goodness, Jane is not a celebrity and she too is having “faceless” people with bad manners attacking others.
I totally enjoy what you write and how you express yourself regarding the truth and life in general. Actually I was concerned you might shut the site down so as not to deal with those that are so inappropriate.
Since you mentioned Howard K. Stern in your article, I do hope you continue, with writings concerning Howard K. Stern especially since he was on Larry King Live Wednesday evening and answered a lot of those “allegations” layed upon him through the public.
Patty, no more HKS writings here. The man went through hell for so long, and I’ve said all about the situation that was in my heart to say. No, he’s not perfect, and some criticism of him is valid (as it is for any person), but what the media did to him went far beyond that. I hope that soon all the loose ends will be tied up for him, the court cases settled, and he can actually have the time and space to rebuild his life.
Jane, loved this article and can relate to it all, especially the part about getting so busy and overwhelmed that the soul gets locked away in some unaccessible place. Balancing career, partner, my mom’s medical care, friendships, other interests, sometimes months fly by and there really has been no time to sit quietly somewhere and just feel what I feel. So yes, I get that feeling of being on auto-pilot. Of blanking myself out so I can carry on and function. All the while there’s a small voice inside of me begging me for some alone time. And I’m like the parent saying not right now, wait a while, I’m too busy.
You’re not alone. Nice to know I’m not either.
Yep, you get it. Thanks, LJB. - JD
Ahhhh, Janie. Here you thought you lost your sense of humor and see? All it took to get it back was an evening with Aspies, a glittery Elvis, and a brush with the neuro-neurotic. What Bush taketh away, humanity restores.
Shayla is still enchanted with the box you sent her. You should write kid’s stories more often. You know, inbetween the day job, the projects, and everything else.
Laurie, do you want to throw me totally off track? LOL. - JD
Jane, I am so sorry you are going through so much and I do hope filtering these emails will put an end to these “faceless” people.
I came to this site back in March because of what the media was doing to HKS. I have remained because I enjoy Jane’s writing and because I have gotten to know her as a compassionate, genuine, honest and dignified human being.
I have never disclosed this information about me but I have a masters degree in speech pathology with a minor in psychology. (I have not worked for a few years to raise our two children). Asperger Syndrome is an area I have done extensive reading and study in. Jane, I have never met you in person but because of the emotional depth of your writing and the interpersonal connections ,among other things, you have maintained with your readers I would find it very difficult to believe you have Asperger!! I agree with the statement “we all have a bit of neurodiversity to celebrate”.
To the poster who bashed your site and who did not want to read other’s opinions, I would say “Some minds are like concrete: thoroughly mixed up and permanently set.”
AP, I never heard that “minds like concrete” saying before. I like it! Thank you. - JD
Damn. I was hoping to be comment #9.
Can’t think of a less ignorant site. And you did more on Terry’s murder than any writer or reporter before you, and you did it with true empathy. You made a whole bunch of people care about someone they never knew and she wasn’t a celebrity, but a woman living on the edge of life and outside the mainstream. God bless you for that, Jane. I know how much you cared. I can only imagine the rest of what you went through.
I’m too old and cranky for myspace. Kids love it though, and it seems to be the craze.
Hi, MontanaMan,
Nice to see you posting, stick around and you can be comment #18.
Jane, how I wish I could sit in quietness. I will never again, know what quiet sounds like. I’ve had tinnitus for nearly 15 years in both ears. One worse than the other. It’s a high pitched screeching constant noise, that never goes away, not even for a second. I also have a hollow sounding roar in my head 24/7. My ear doctor could not find the cause and had sent me to have an MRI once, to rule out a brain tumor. I was scared out of my wits. No tumor thank God, but you have no idea how I would love to hear what complete quiet sounds like. I certainly wouldn’t want to become deaf though, but at times this is so hard to deal with. I know some people commit suicide because of it, and I can certainly see why.
The noise is louder than any volume on TV or anyone talking. The only time I don’t hear it is when I’m asleep and when I am so distracted with other things. I am thankful that so far I’ve been able to cope with it among many other things, but I fear a time will always be around the corner, that I won’t be able to cope. I thank God that he has given me the strength to cope with everything…at least so far.
I love to read, and sometimes the tinnitus interferes with my concentration and reading becomes difficult. I would just love to have a few minutes of complete quiet, but I know that will never come. Sorry to be putting all this here, but that sentence just jumped out at me, lol. Those of you who can indeed have a few minutes of quiet. Treasure it! It’s been so long, I can’t remember what quiet sounds like.
Oh Joni, that’s so horrible, and I’m so sorry. I only know a tiny bit of the madness you must feel. I went to a gun range when I was a kid, and my ears didn’t stop ringing and buzzing for about a week. I can’t imagine living with that non-stop.
Do headphones/music help at all? At work, I concentrate by playing instrumental music just loud enough to drown out everything else. Maybe you could read a book that way?
Dear Jane,
Just read this and loved it…as my young heart wants to believe in good things.
Montana Man, gve you a wonderful tribute, and I was here then, yet we didn’t do enough, or did we…do as much as could be done?
Seems so many are forgotten, little girls like Terry.
I only wish I were a better person, and wish I could have done more for Terry Armstrong.
Seems, there are many of her, and not enough of ‘us.’
Yet, I know I don’t do enough.
I could do more.
We all, could do more, though, so…
Montana Man, ‘gave’ you….
please change my ‘i’ to an ‘a’….
Whatever happened to that Armstrong case?
Whatever happened to LOGICAL?
Now, when I think of her, that Logical Deb, I’m really pissed off…sorry, I know she’s sufferiing, too.
My heart still aches and knows a lot of pain, but not nearly what Terry Armstrong knew.
Or what her family and sister, Deb knew.
All I have are words, here, yet I would have my arms stretched around you if I could.
Love Always,
Freida
You have no idea how proud I feel to be here, among you!
Dear Jane,
Joni needs to come spend a couple of weeks with me, with dead silence, and yet there are a lot of birds, and you know I think we would make some of our ‘own’ noise just talking.
I am so glad you closed the chapter about Howard K. Stern and will no longer being writing about him. I like you believed what the media did to him was wrong and yes the man certainly is not perfect. What I found really bizarre was how many of your readers seemed to get so emotionally obsessed with him. It was as if some of the readers of the blog were forming their own mini cult. With Howard as their leader. I just knew soon some one was going to come up with “A LOVE Song for Howard”. Or next somebody would organize a protest outside the courthouse holding up signs proclaiming how unjust the system is and let the man mourn for the “love of his life”. So glad I never took any of it seriously. Just a summer hobby on the study of human personality, and how one writer can effect and influence the perceptions of others.
Jane, you were blessed with a gift, you’re an awesome writer. Don’t let anybody take that from you. I enjoy reading your blog. Please keep posting your stories. Your honesty, truthfulness and your outlook on life is what keeps us all coming back for more.
Jane:
Thank you and when I’m at the computer I listen to musice I’ve downloaded with headphones on, but that’s the only time. I have a hard time concentrating on reading when I listen to music, unless I have it turned down really low.
Frieda, I have alot of birds and feed them also, lol, but unfortunately this is louder than anything else.
I just keep praying that I will be able to keep coping as well as I have so far. There are some days that it bothers me more than others, but it’s just always there and it’s so loud.
Sorry to go into this here Jane, but every time I hear the word quiet, it makes me want so much to “hear” the quiet, just once. It’s sort of like living with the fibro. I don’t remember what it feels like to be pain free. I would give anything to just have one day free of pain. But again, I have been able to cope pretty well with all of this and am thankful I can and continue to pray that I can keep coping. That’s the thing I fear most, someday not being able to cope.
Joni, I live with pain, too. I know what you mean about coping. Thank you so much for sharing your story, and what you go through. I think you probably connected with a lot of people today, me included. - JD
Catt, I’m glad that chapter’s closed, too, but probably for different reasons. When I started the series, it was because I was totally shocked by what the media was doing in regards to Anna Nicole’s death and Howard K. Stern. I had never seen anything in my lifetime that approached that level of carelessness, even negligence, on programs in the news category. And the predominate talk on the web was so cruel — thousands of people infused with hatred stoked by shows like Greta Van Susteren’s or Nancy Grace’s. That was my focus, and the public and the media gave me plenty of material.
When Lin Wood came on-board, and the media’s assault died down, it was time for me to end the story. So many people just did not understand that. The die-hard “fans” of Howard’s felt betrayed. They felt I had betrayed or “turned my back” on Stern, and they let me know it in droves. It was a cage like the one I talk about in this story. A box seemed to be made, and there were people who wanted me to stay in it. (To be fair, there were also a handful that wanted me to disappear or go to hell, but I stayed, figuring that each story — not the writer — has its audience).
I was relieved to break out of that box, and those expectations that were created by other people. It wasn’t much later, though, that I came across the story of a particularly heart-wrenching murder. And because I tend to follow a story where it leads me, Terry’s murder also became a series, with some loyal readers from the time of HKS, and some new ones. When it ended, I found there was another box built. . .and some people who felt betrayed by the conclusion. “Abrupt,” they said, even with a one week notice and three-part ending. (And yes, there were another few who wanted me to disappear or go to hell. Nobody is, can, or should try to be, all things to all people).
I don’t know that I’ll do another series on the internet again. It’s time-consuming, with limited appeal, and gives rise to too many inter-personal conflicts.
I don’t know that my writing changed any minds or perceptions. I only know that I wrote about subjects I cared about and went where the stories naturally took me. Some liked it; some didn’t, but in the end I feel I did my best to speak what was in my heart and mind. And that’s all any writer really can do. Words cannot always be a reflection of whatever is in someone else’s head — they can, though, be a springboard for discussion, and that’s always been the best part for me.
To be 3-D, human, and allow that in others is, I believe, the greatest gift we can share.
Joni, I never knew that some people were so tormented with the loud, unnerving sounds you described– I always assumed tinnitus was more of a mildly annoying condition. I can certainly understand how day in, day out your situation could drive someone up a wall. I sure hope they come up with a remedy for what you are going through.
Jane, I prefer the more user friendly term “homebody” to describe my functionally agoraphobic lifestyle. I loathe parties and crowds, prefer to be home whenever possible, rely on my somewhat detached “public persona” to handle the perfunctory day-to-day co-mingling. Always glad to get back home to husband and pets and the relative tranquility that I only feel when I’m home. I’m quite sure I qualify as some sort of neurotic in an era where we’re all diagnosable as a textbook something. I would counter that it’s not me–these days, it’s the rest of the world.
I loved your spinster at a high school dance line re MySpace. Very funny analogy to describe your brief colliding worlds experience.
I so agree, Alison, it IS the rest of the world. - JD
Hate to break the news Jane, but your myspace is still up.
LOL.
Jane
Thanks for the wonderful article. My son has Asperger’s and it’s been a long difficult road. I can guarantee you don’t have it, just in case you had the slightest doubt. He was very classic–unable to look people in the eyes and a noticeable lack of empathy, but never a lack of love if that makes sense.
Also, I’m a Minneapolis writer and your picture looked familiar. Wondered if you were ever featured in the Skyway News at an advertising party wearing a hat? If you were, then I think our paths crossed professionally…
As I was reading the comments, my heart went out to Joni and I wanted to let you know that some people experience tinnitus as the result of being on “benzo” drugs such as xanax, klonopin, ativan, valium, librium. There are a few other drugs that can cause tinnitus, too. You probably aren’t taking any of them, but felt I should share the information on the outside chance you did.
Great site, enjoy your writing and have always wondered about Tom myself. He sure has lots of friends, huh? Wish I’d thought of myspace!
Jane, thank you for clearing up your thoughts on HK Stern! So many rumors, all the time, and rarely are they true. TMZ was saying you went to the other side. I read when you said unless you hear it from you it’s not true. Still people said it. I know you were unhappy with some other bloggers who dragged your name through the mud, but I never thought you switched teams and I think your writing was pretty clear on that. Some people don’t read or don’t want to! Maybe they just like the drama instead of the truth.
Dear Jane,
Please tell A.P., or submit this, my comment, here.
I love psychology and wanted to be a psychiatrist…I was just too, darn afraid (freida).
You see, I used to think my name meant afraid…and then I learned a whole lot more.
My teachers would ask me funny questions, like…”What do you really want to be when you grow up?”
Some said I lived in my own world…some said I could be anything I wanted to be.
Mostly they ’said’ stuff and couldn’t figure me out…because, they could not and were not very good teachers, and not many were leaders, and not many encouraged me or any of their other students.
Most teachers just earn a paycheck…but their are a few really good ones, and parents, too!!!
Laurie, I know. Tom is tormenting me. Some friend.
Anne, I left advertising when I moved to MN several years ago so that couldn’t have been it. I do go to the occasional book reading though, and used to be a Loft member and attend their events, so maybe it was one of those. I think we all wish we’d thought of myspace! Hope Tom is enjoying his good fortune. Note though: he has not “pimped” his own page.
CattGrrl, you’re welcome. It seems almost no one bothers to ask the source anymore. They assume or guess or just make stuff up. It’s probably what I’ve disliked most about the internet. All the backdoor gossip, almost none of it even a reasonable guess, much less true. The shit I’ve heard about me, and there’s been a lot, is incredible. One of the last ones was when I was moving. There was a rumor that I had “gotten kicked out” of my old house. I mentioned that I liked Bailey’s. All of the sudden, I’m an alcoholic. There were so many instances like this and yes, too funny, yes, but also sickening. In the end, what people believe, dark or light, is based on the own color of their heart. Lots of dark-hearts on the internet.
Freida, my own experience with teachers in the 60’s and 70’s wasn’t good, either. One of the reasons I moved to MN was for the education, and my daughter fared much better than I did in the 80’s and 90’s, but I was also super-involved.
Alison,
Yes, for me anyway tinnitus is almost deafening. There is no cure. It has something to do with a tiny portion of the brain where there seems to be alot of extra activity. Maybe someday there will be brain surgery for it, I don’t know, but it won’t be in my lifetime. The volume of it may vary from person to person. I just don’t know. It didn’t come all at once. It took about 3 or 4 years for it to get to the volume it is. It’s about half way there in my other ear.
Anne,
Thank you for you comment. I’m not on any of those meds. I was on xanax for a short time about a year ago to help me sleep, so that’s not it. I’m on darvocett for my fibro, and have been for over 30 years, so I don’t know if that could have caused it or not. I told my ear doctor what all meds I had been on at any given time and he didn’t say anything about them. He put me through alot of tests and nothing panned out as to the cause.
Jane: You say there are alot of dark hearts on the internet. You are so right. I’ve seen and heard more in the 5 years since I got a computer than I’d ever heard in my whole life and I’m 61, lol.
I’ve heard words that I still don’t know the meaning of and I don’t think I want to, lol. Hang in there.
Always, Joni.
Hi Freida,
We share an interest in the field of psychology. I am very interested in forensic psychiatry. I don’t perceive your name to mean ‘Afraid’ instead I view it to mean ‘FREEDOM’. The freedom to pursue any dream, career, passion or interest. You still have the freedom to do it even now. There is no deadline on the age to study courses or to receive a degree. My sister-in-law received her doctorate in her forties.
You are so right, A.P. An Ann Landers column I read years ago had a letter from a reader that was undecided about returning to college. He said something along the lines of “but I’ll be 40 when I graduate.” Ann replied with “And how old will you be if you don’t graduate?” I thought it was a brilliant, simple answer. - JD (who didn’t start college until she was 28).