On Friendships, Aspie Communications, and Being Yourself

Today was an interesting mix of good and bad. Good in having a friend come, bad in some environmental ways. But let's focus on the good for now.

This covers a wide variety of topics and thinking, so bear with me. I think I got more focused towards the end, but I'm not deleting anything; I believe in preserving trains of thought in the way they came out (most of the time); it is more authentic and meaningful that way, to me.

My friend Anna came; I hadn't seen her in two years. She is a great friend, the best friend I could hope for, but I was so disturbed by environmental influences and issues it was hard to enjoy her. And of course there was a HUGE adjustment and learning curve to account for since the last time I saw her, I didn't have MCS.

I didn't have MCS. A simple but profound statement. It took her a while I think to get her head around how much I had changed. She didn't say anything (at first) and was very patient with me, but we got to talking about it later and it seemed there was a lot she didn't understand. So I tried to help her understand. We tried to work through some things and come to some agreements and understandings. And let me say that is what I love about her. I love her openness. I love her patience, her understanding, her open mindness, her ability to just be. I love being able to be comfortable with her, more comfortable with her than I have with anyone in my life.
My God, it's like, wow, I don't have to THINK so hard about everything that leaves my mouth. I don't have to analyze it and try to make sure it passes the test of "will it offend will it be appropriate" which I swear to God I can never figure out anyway and half the time don't try. We got into a great, ind depth conversation about friendship, communication, Asperger's and MCS. And she really did try to understand. How many other people can you say that about? When we had disageements or mini arguments we were able to talk it out. How many people would have stayed around to hear me out? To come to an ending point?

I learned some things about myself and AS and communication. But damned if I can remember what they are. (half joking) Damn I just had it. Argument, disagreement, no.... Something about she didnt realize that my facial expressions don't usually match how I'm feeling or what I'm saying. So somehow she thought I was angry at her all afternoon when of course I wasn't. She said she felt a lot better when she realizd. A balance: yes, a balance, I talked about how I still needed adults' advice about some things and could seem needy but I didnt really want people to do everything for me or provide advice about everything, I wanted to be independent, but it was a hard rope to walk, and I seem to have a history of having older adult women want to "save" me and when they can't they withdraw their friendship. It's like their friendship is solely based on what they can to "change" me and that bothers me a LOT. Even if they are really genuinely giving me help I want and need, they're doing it under a context that I couldn't live without it and it's somehow their duty to do it and if they don't see desired results in desired time frame then I'm a "lost cause" and not "worth their energy". I dont want my friendship with ANYONE to be contingent on what they can do for me. I might need some extra help in some areas at some times, and this can make things tricky and a grey area. But I want friends for the same reason everyone wants friends - to communicate with, to enjoy, to have a sense of social connection, to laugh with, to share things with, to have emotionally and intellecutally stimulating conversations. I think my friend also had the idea she needed to "save me," which I had no idea about, and she felt dissapointed that she couldn't. I told her I wanted a friend, not a savior.

We talked a lot about disability and how it was frustrating to see someone's quality of life and abilities go way downhill, but how you needed to respect the person and respect the disabilities - in other words, love the person, dislike the limitations put on by said disabilities, but always appreciate, respect and honor all that said person is doing to overcome the disabilities.

In other words still: since getting MCS 2 yrs ago I have lost a lot of ability to do things. But as I told my friend I need to think about what I still CAN do, I need to figure out a way to work around my limitations, I absolutely need to appreciate what I still have. If I had allowed myself to be devestated by MCS I would not still be here (I pointed to a patch of ground to make my point) I would be six feet under likely.

It doesnt mean I dont still have a TON of worries and that sometimes I do almost feel debilitated by my worries and anxiety - but these things are based on very real things.

Honest to God I'd love some therapy to work out my many issues but I have no access to it right now.
Too damn bad I finally found a therapist who would meet me outside and I have to leave but what can you do.
My biggest barrier is not being able to go in therapists' offices. After that money and transportation.

I tried everything I could to find a phone therapist or one who would meet me outside. And I even succeeded, but only 2 weeks before I am leaving so no good.
I have gone to the traditional drs my parents want me to. They can't help. I'd like to see drs who know about MCS or AS but have no access to money to. Drives me crazy.

I've taken any supplements that I've thought could help.
Currently I am taking:

Omega 3s twice a day (helps a tiny bit)
probiotic granola bars (tried probiotics themselves, didnt seem to help, these taste a lot better) and probiotic juice drinks (both make me feel a little better immediately after but not past that it seems)
evening primrose oil ,helps regulate my cycle
EMP power plus true hope vitamins - long story - company from canada- studies have shown helps with anxiety, bipolar , mental illness. went from one a day to four, they recommend around ten, we'll see. Not sure if working but can't hurt to try.

Anyway I do these things not so much because I'm convinced they'll cure me but because they seem to help a *little* and they also give me hope. So. I'm doing what I can. What more can I do?


Anyway. The day with A started out not so well. My stepmom was going on a cleaning frenzy. It made me SUPER NERVOUS AND AGITATED. Bad, bad. Outside was bothering me. Her car bothered me. There was literally nowhere to go. We sat on the floor in the front entrance. I was so overcome by environmental factors I basically couldnt talk. I thought, wow, this day is going to suck. I am sure she thought the same. I didnt want the day to go by without even being able to talk to her, I hadn't seen her in 2 yrs.

Eventually I went outside again and determined it was tolerable outside and better than inside. Nice and sunny. Air a bit thick though. We sat on the bench on the front porch. Eventually I relaxed and we had some really good, intense and enjoyable conversation. I brought the radio out, we listened to it a bit. We had a snack break. Came back out. Went for a walk about 6. Beautiful, beautiful evening, first time I had gone for a walk without a sweatshirt, THAT was nice, just a t-shirt. Very intense conversation, but it ended up being meaningful so that was good.

People misinterpret me because of my tone of voice and facial expressions and body language. Allllll the time. We talked about that among other things.

A beautiful walk though and convo, just wish I could remember more of it. :)

We went inside for dinner, which we had to wait a while for but well worth waiting for. My parents had company over too so they went all out. We had salmon, potatoes, ribs, and the best ceaser salad I think I've ever had - very lemony and mild with pockets of garlic taste, not too spicy - for dinner. Yum! And looked at some old pictures.

We spent eight hours together somehow, and we didn't even go anywhere. I do believe it's the first time I have spent that long with someone without even going anywhere. I would have never believed it possible. I think I spent the first two hours being miserable and sitting on the floor. Then the next 2 outside talking with her. Then a walk, then an hour or so waiting for dinner. Maybe 90 min by the time we actually had it...and eating, and she went. So....nice to have deep conversations with someone for once, nice to be able to "scratch that emotional itch" I have for deep, intense, meaningful conversations about things that really matter to me. Most people are not into deep and intense conversations and are very, very turned off by them. I was raised, or so I thought, to think very deeply and to examine things and converse about them. I say or so I thought because of late it seems my conversations have really not been appreciated by any members of my family, and that hurts a bit of course. I miss when people used to actually TALK. No one talks anymore. Well, to me, and sometimes they don't seem to talk to each other, but they probably do more than I know.

Anyway. People are scared by someone who is intense, someone who thinks deeply, someone who wants to get into a deep conversation about something.

It is a frustration for Aspies anywhere. The best way to turn off a new friend or casual acquaintance it seems is to say anything meaningful or profound. you gotta care about the latest crap. i dont know - i cant pretend to know what NT 20 somethings talk about. But I know one thing for sure. They do NOT talk about it in the same way I do.

In college my rule for when I wanted to try to "Play the NT game" and try to (painful to remember) fake my way through a conversation with someone I didnt know well, at least when I was lonely and desperate enough to actually want to try to do so and put myself into such a compromising position, (compromosing because even if they talked to me to for 10-20 min it would never turn into anything more, and that hurt always) was "Think of something general that might be of interest to a college population or this particular person. Strip it of all enthusiasm, passion and details. Try to say something without really saying something. Try to say it as if you don't care whether you say it or not."

Sounds pitiful and pointless to me too. But it almost always worked. The few times I could actually modulate my voice and body posture and so on to seem "casual" and seem like I literally did not care about what I was talking about, the person would usually talk to me for a good while. Or at least several minutes, I don't know. As long as I could keep the demeanor up. The SECOND I STARTED CARING, and couldn't keep it up and got to be more of myself, and got to sound the least bit excited about something, the conversation would end. Come to an abrupt halt. See ya later hasta la vista baby. And I would be standing thee thinking 'What the hell did I do wrong? Why again? Why always?'

I was as I said able to deduct a pattern as I laid out above. But what I couldnt figure out and still cant, although luckily now I get to stay away from most college students, is Why the hell are people scared of people who show emotion? Who are knowledegable or passionate about what they talk about?

Why do you have to pretend to be a know nothing to get anyone to listen to you?
I just hate it.

I was raised to believe knowledge and intelligence were good things. Passion and excitement were good things. Enthusiasm was good. Well, I don't know if the last one was true, but wouldn't you rather talk to someone enthusiastic than someone who talks in a can't be bothered monotone? I would. Most of the people I (now) know would.

I seek out people like that now. I seek out over the top people who have enthusiasm and passion in their voice. Who talk with excitement and overt enjoyment about every mundane subject in the universe. I almost never find them, but when I do I enjoy it more than you could possibly imagine. I savor it.

A disporportionate number of these people seem to have ADD or some other mental illness or difference - I wonder why?

Not all of them. Just a lot.

I seek out people who disregard social norms, who say it like it is, who are not put off by my enthusiasm and manner of expressing myself.

I talk in a dramatic manner a lot of the time, my friend said today. I agree. It just seems to be who I am. I don't do it purposely; but it is how I see and feel the world; in a somewhat dramatic fashion. If things are good, I express that fully; if things are bad I also express that fully as well. I see nothing wrong with it, except, well, most people don't expect it or understand it and are frankly often put off by it.

Why don't you change, then, you ask? Well, it's not like changing a pair of socks. You can change a lot of things about yourself, learn to follow social rules you might not have been aware of, learn to be more polite, more considerate of others' feelings, and so on, but changing the basic way your nervous system and emotional cognition center reacts to the world: not so easy. Even, it seems, with drugs. (Prescribed, not illegal!)

Suppress it? Very difficult. Very difficult if not impossible to supress the need to be very verbal about things, to express my feelings, to seek out people to reinforce and identify with my feelings, to seek an emotional connection with people in the only way I know how. And would I want to do it? No. I lose a part of myself, a BIG part of myself, if I do that. If I am going to interact with other people at all, I want it to be genuine. I want it to be meaningful. I want it to count. I want to enter the interaction coming as MYSELF - because otherwise, they're not liking me; they're liking a fabricated version of myself that I can't even reliably replicate. Why bother? My self is all I have; I'm not going to sell out a part of it to make others happy. THAT, I know for sure. Bending to meet others' needs? Fine. Meeting them half way? Fine. But changing the basic way I communicate? Not fine.

Communication is a topic too complex for words. At first my friend was pointing out some problems I had in communication. One is I get very defensive about certain topics and will snap at people without even realizing (to me I'm just having a conversation but apparently my voice will take on a tone percieved to be threatening to others). Sometimes I am aware of this, a lot of times I am I think and if I realize I have snapped at someone I will apologize immediately, but I am beginning to think perhaps it happens a lot more than I realize, and that is scary - as I could be turning people off without even realizing it.

When I feel threatened in any way, either to my routine or my way of doing things or things I need to feel safe and stable, or on some issues at which I am touchy, especially issues where I have failed at something in the past - I do become very defensive and I am extremely sensitive to criticism. So I would like to work at that. But like I said, I am trying to monitor my responses, my tone of voice, and if someone makes a comment that riles me up , check myself and say "Do they really mean offense by this?" and try to consciously make a lighthearted remark in response and change the subject before I get more riled up. Doesn't always work, but I try.

Anyway. I have completely lost my train of thought here. This was not what I intended to write about when I started writing. But I am glad I did. Heaven knows I need more Asperger's related writing on my blog anyway.

Functional versus semantic communication: that is what it all boils down to. I am great, GREAT at functional language. But I suck at semantic language: using nonverbal body language to communicate and understand nuances in communication. And my literalness can get me in trouble more often than I would like. People see my intelligence and assume I couldn't have any communication problems; that I am just being a smart aleck, or acting superior, or much, much worse. My parents included. Anyone else with an AS person in their lives or who is AS have this problem? Reply if so.

Anyway. It's so good to have a friend who is willing to teach me about friendships. Being that she is the first friend I ever had in my life, and the only really close friend I have ever had, it means all the more. Thank you, Anna, for being in my life.

I am also thankful to my friends Nate and Rob, Nate for being such a good listener as I freaked out about several things tonight, and both of them for being so willing to help me out with certain things and pick me up out of their way so that the three of us can do things together. Tomorrow we will go hiking somewhere again and have dinner out - my last time with them before I leave Maine for Oregon!

I'll miss them but I say GOOD RIDDANCE to Maine or at least my living situation in Maine with my parents which is just bad beyond belief.

Which brings to the topic I WAS going to write about. Going to Bend. I was and still am to some degree freaking out about things. Not about going to Oregon. About surviving for seven more days here.

Stepmom went on cleaning frenzy like I said; smells in my room were intolerable afer she came in, although what she did I don't know other than vacuum. Opening windows made it worse - they had a fire going. I was practically inconsolable earlier because the smells were bothering me so much. Rest of house too although better than earlier. I have seven days left. I am scared way beyond what I should be that the next seven days will not be tolerable. PLEASE GOD let me get trhough them with some amount of grace and bravery and grit, meddle, , calmness, whatever the adjective, please just let me survive with my sanity and pride intact.

I need to not worry about smell. I was functional enough to write this. I should be functional enough to survive another week. Smell will I hope be better tomorrow.

Maybe will be able to relax w/ Nate and Rob and be calm enough to be able to deal with house when I get home.

I just pray I am able to be calm and survive. I pray the physical things in this house won't get worse. I pray for no more fights. No more tension. No more feeling like I want to die (figuratively) because of the tension, the worry, the reactions to smells.

Tomorrow is a new day.

Good news: Rob said he might trade Discmans with me. It would solve a major problem for me because I need an outgassed Discman to take on the plane. My new one is too smelly. He has an old one.

So if that problem is solved than most of my travel related problems will be solved. I will have music, newspapers (more or less), food. I will start to pack or think about packing Tuesday. First need to unpack suitcase from 3 months ago lol. Then make list of things I really need and want to take. Figure out how it will all fit.
Shouldnt be hard. Thought it would be simple in Missoula though and it took ages so will start early. Am a tiny bit more relaxed than in Missoula because I've done this cross country move on an airplane thing once already thank God for that.

Clothes still a problem but am trusting my friends in Oregon can help me with that.
I am still worried, you know, that things could fall apart. Not with my OR plans, but with me in the next week.

So I need to be strong. I need to be calm. I need to reject all negativity. I had a friend Lisa who I should call sometime as I miss her, who once told me "Your ears are not trash receptacles."

I should remember that. Everytime someone tries to put me down for needing to do something differently, I will remember that. I have value the way I am. I deserve to be treated with respect. That is non-negotiable.

I would just love to find a community of friends in the disability community who would be accepting of my differences , who I could find acceptance and friendship and camaradie with. I love reading people's blogs for that reason. It gives me an "in" to other people's lives. A feeling of emotional connection without even being there.

But I hope someday, that will be translated to real life, too.

I hope maybe this move to Oregon could solve some of those problems, could be answer. I know it will be work to make it work. I just hope both myself and K and M who I am moving in with are up to it. We have all made committments to put effort into trying. So all we can do is wait and see. Hope for me, please.

And now I have to go to bed. Almost 3am. I will try to get up with my head held high tomorrow and promoise to fight - fight through the anxiety, the worry, and the negativity. Have fun with my friends. Take it one minute at atime.

I am learning how to bend, you might say. Hahahaha. :) Got to get that title in here somewhere.

Goodnight
Kate