I survived the 54 dewpoint which was probably a good intermediate dewpoint to get used to before it gets worse! I just kept reminding myself of Baltimore. I think Baltimore is going to prove to be a very apt analogy for me, for overcoming difficulty and for tolerating short periods of intense discomfort. Well, more for the latter. So when I was in college, of course, there was Baltimore and there was humidity and the two did not get along very well with me. I wasn't even there in the summer, thank God, but the first few weeks and last few weeks of the academic year were just horrendous. Humidity makes it hard for me to breathe. It makes me incredibly irritable and my brain just stops functioning. I lose the ability to think clearly, even if I'm only in it for a minute, even sometimes if I'm inside. There is nothing on earth I hate more and I am working really hard to try to think of a way to be calm about the upcoming summer and the Maine level of humidity. The only way I've managed to make myself at all calm is to remind myself of how I handled Baltimore and I can do it again. Maine, that is.
Today, we had a 54 dewpoint, which is definitely not miserable but definitely not comfortable, either. I coped with it by flashing back to college and Baltimore. One very clear memory of college I have is this. During the humid weather, I would go from the Pearlstone cafe, which was a cafe at the center of our college campus, and walk to the library, which was maybe an eight minute walk, and I would be dying. The discomfort was intense. I'd have my music on, and I'd try to listen to it and focus on it, or sing to it, my usual coping mechanism of drowning out all my uncomfortable overwhelming feelings, and totally not be able to. I didn't have enough to air to sing or to think. I wanted so bad to connect to the music but the humidity was robbing my brain of its ability to think and my lungs of their ability to sing.
So I would just figuratively grit my teeth and tell myself to hang on, that I would be okay when I got inside. I would focus on my walking and just count the steps until I got there. Sometimes I'd play a game where I'd choose some point in the distance and guess how many steps it would take to walk there. When I got to that point, I'd choose another point. Counting my steps took my mind off my thoughts and kept me from having a meltdown that would prevent me from getting there at all (I used this technique for all sorts of situations, not just humidity.)
When I finally got to the library, or wherever I was going, I'd take refuge in the basement or wherever was far away enough from people to relax, and try to calm down. I'd go somewhere and sing my heart out, after I had recovered enough to do so. Connecting to the emotions in music was the only thing that saved me. The one good thing about Baltimore was that it had excellent country stations, and they alone enabled me to survive. I can still remember the call letters of all seven country stations I could get from the Baltimore suburb of Towson.
Of course, though, I couldn't do this right away. I remember being in this little study room in the basement, thinking to myself "Man, I FEEL LIKE SHIT" and trying to find a way to recover. I remember yelling into the phone to someone, probably in my family, about how bad I felt. I remember feeling kind of shocked about how bad I felt and trying to figure out how to deal with it. I did recover, though, after I had been out of the humidity for long enough, and if I found some emotional source to connect with outside of myself. I recovered, and then the radio embraced me, and I sang to songs, and I felt like myself again. Someday, I will have people that help me recover instead of just songs (I am working towards that), but for now it is really just the radio that feels dependable to me.
Using the Radio to Build a Construct of Emotional Stability
As I write this, my memory flashes to the enormous posterboards of colorful Post-It notes I used to have. I always wish I had managed to save these after college, because they meant so much to me. I was, and am, an intensely emotional person with very few if any outlets for my emotion. I was constantly at sea with my emotions with nothing to grab on to and very few if any people who I felt understood my emotions or me. Country music was the one thing that made me feel understood, moored and connected. I could relate to the strong and obvious emotions in country music. As a result, I would become euphoric when a song I liked came on the radio. I built a whole construct out of the radio. The structure of it - waking up to the Morning Note on the oldies station at 610am when I was a kid, or listening to the national anthem at noon even though I wasn't particularly patriotic, looking forward to the new music program on WPOC at 430pm or the Country Clash on WAYZ at 720 pm, leaving the library at exactly midnight but not until I heard the opening notes of the syndicated overnight program After Midnight - boxed me in and provided a structure and boundaries to contain my emotions. I can think of no better way to say it than that.
When I heard a song that particularly spoke to me - if not with its choice of words than with the intense emotion used to convey the words - I felt like it was talking directly to me. The feeling of being connected and understood, which I was not getting anywhere else in my life, made me euphoric, and I wanted to remember these moments. So, every time I heard a particularly meaningful song on the radio, I would take a yellow sticky note and some colorful markers, and write down the station at the top, the song and artist and the time, and make it decorative. I soon had a whole posterboard full of recorded moments of happiness and connection that I could look at and use to build in my mind a mental map of connection. Since my emotions tended to be so extreme that I would forget that the concept of feeling okay or good even existed when I was upset, having something tangible to remind me of this was very important.
Using Baltimore as a Way to Build a Construct of Competence with Difficult Emotions
So, the lesson here is this. I have an enormous difficulty with overwhelming emotions that swallow me up, and I lose all sight of anything else existing other than strong emotions that are usually in response to physical pain or discomfort. Tonight after attempting to take a bus to an Improv acting class in a building I had never been to, something very difficult for me after my seven years of chemical sensitivities and mostly total avoidance of the outside world, I was struggling very much. Although I loved the lessons of the class, the activities of the class, the people in the class and the ideas behind the class, it was a very difficult physical environment for me. I get very scared now in difficult physical environments. It wasn't so bad that I would have decided not to go, but it left me feeling exhausted and having difficulty regulating my feelings of panic about the physical symptoms it caused in me.
I am trying to push myself to do things I never would have before, but I am also trying to be aware of where the line is for myself. I don't want to push myself so far that I become traumatized and lose all the progress I've made going into buildings again. It's so difficult to know where that line is. So I walked around the Eastern Prom for a while, or really just paced back and forth on one small stretch of it, when I got home. I sat and thought, for nearly 90 minutes. I tried to come up with a way to hold in my head and my heart the enormous physical discomfort of my life and the intensely difficult, overwhelming emotions that for me go hand in hand with this discomfort, along with the feeling that this Improv class is full of people who are being taught and learning how to express emotional energy with each other and how that is the culmination of everything I have been desperate to do for as long as I can remember and how much I wanted to be there . I just went round and round in circles in my head, the radio soothing me enough to allow it to be possible. (I've heard Luke Bryant's Play it Again about 5 times today , as I do nearly every day. I guess they're playing it again...lol. Cop Car by Keith Urban is frequent, unfortunately "Invisible" is still pretty infrequent, although I heard the last verse in Monument Square today).
So in the end the only conclusion I could draw was this. I related it to my experience of Baltimore during the humid times. I reminded myself of how I would go through intensely difficult but time-limited moments and how I would just have to be patient and wait for them to pass, and they would, and I would be returned to myself. I had to have faith, in other words. This analogy has not only literal meaning for the upcoming summer season in Maine but figurative meaning for all the emotional storms I weather when experiencing physical discomfort of other kinds. If I can just remember this analogy from Baltimore, maybe I will have a frame of reference for which to deal with it.
Finding a Way to Experience Comfort from Others
It also occurred to me that I really need to expand the number of people that I can call when I need encouragement. We live in an awful culture with ass-backwards social norms, in my opinion. Everyone is expected to be so strong. The norm is not to give other people help and encouragement when they are going through something difficult. No, the norm is to expect everyone to fight their own battle and do everything on their own. "Oh, I didn't want to intrude!" people will say if you ask why they didn't speak up when they witnessed your struggle. "I didn't want to sound presumptious!" or "I knew there was something going on, but I didn't know what to say." or even all the way down to the downright cruel "You're just playing the victim" invalidating your entire experience, trying to take away your right even to be upset, much less receive encouragement.
The Yankee work ethic that we have, or the Puritan ideals, or whatever they are seem to say that people are not allowed to acknowledge how hard their lives are! That simply does not make sense. People are hard wired for human connection, and part of that human connection is perspective taking about someone else's struggle and helping them through it. Part of the problem with this, though, when you have autism or a sensory processing disorder, is that your experience is so different from other people's that they are not able to have empathy towards you or take your perspective, because it is so different from their own. This might make them upset or frustrated that they are not able to do so, so they do the only thing available to them - they shut you down. Because if they can somehow make it YOUR fault you are having these emotions or problems, then it doesn't have to be theirs. They don't see that there is a third option - recognizing your struggle.
The incredible power of a simple statement like "Are you okay? Can I help in any way?" is so insanely powerful and insanely helpful and insanely healing, but I could count literally on one hand the number of people I have come across in my life who are able to utter this to someone in distress. I will give you that I am learning that sometimes people do it with nonverbal language - offers of help, or touch, or some way in which those of us with an autism spectrum disorder often do not recognize as help or as acknowledgement of emotions. But "Are you okay? Can I help?" is a sentence everyone should become comfortable with and add to their immediate vocabulary. I need to make it a goal to surround myself with people who are comfortable with giving encouragement to those who need it. I need to get comfortable with receiving it and not feeling ashamed to need it. Because really, if a few lines of encouragement can make the difference between me going out in the world and actually trying to do stuff and have a life, and becoming so overwhelmed with my emotions, life and body that I sit at home and do nothing but cry in despair, wouldn't you go for the few lines of encouragement, too?
There have actually been people close to me who try to shame me for looking for encouragement online. They think somehow receiving encouragement from people I know online is "enabling" me to "wallow" in feelings of self-pity, or some such thing. I can think of no way to express to them how much this statement hurts me, how deeply it stings me. I can think of no way to understand their opposition to having someone who can relate to your experience of being human.
I realize that sometimes we have to accept the fact that we will never truly understand those closest to us. Or at least, I am being told that. I suppose I still feel that if I could only find a different way to express myself, that my loved ones would understand. It hasn't happened yet. The attitude in my family was always not to provide encouragement but instead to have an attitude of expecting people to do difficult things. As if other people expecting it was all you needed to have the courage to do the difficult things. I lost count of the number of times I would talk about how difficult something was for me to do and verbally ask for encouragement, and a certain family member would say to me "Of course you did it. I would have expected nothing less." Oh, the strain I feel just writing this! Why couldn't he see that plants can't grow without sunlight or water?
Just expecting someone to do difficult things without building them up by sharing with them what traits they had that enabled them to do said thing, or praising them when they did it, or acknowledging the difficulty of it.... doesn't work. If they manage to do it, they weathered an awful lot of pain and suffering to do so and they are just looking for a refuge in the storm before they go out in it again. By saying "of course you did," you are implying to them that their suffering is not valid, and even worse, you are implying to them that other people don't have this kind of suffering when they do those things. By not talking to them about it any further, you are allowing them to grow and firmly attach a layer of shame to their already difficult emotions about how difficult the thing (ANY thing, any experience, it could apply to so many things) was.
Now the thought process becomes "No one else has these problems, no one else feels difficulty, I am the only one struggling, there is something wrong with me for struggling with this task. I clearly can't do it. Others can clearly do it better than I can, because they're not struggling. I hate myself. Why do I struggle so much?" All it would have taken was a "I am so impressed with your ability to do xxxx! I know how hard that was for you! You really tried! You put a lot of effort into that and you did a great job" or some variation and the thought process would instead have become "Man, that was hard but it was worth it. I feel good about myself for having achieved this. I feel good about myself for having tried. My family loves me for having tried, and so I have reason to love myself (because self-love has to start *somewhere*). My struggling must be a valid response to this difficulty, but I feel safe in my relationship with xxxxx and so I think I will try again." Is it really that hard to build somebody up instead of tear them down?
So my two take aways from my 90 minutes of pondering on the Eastern Prom were 1) Use Baltimore as a metaphor to try to weather intense but relatively short lived difficulty, and 2) Try to find a better support network that more closely matches my needs. I am building this online, of course, every day I am building this online, and I am thankful for it. My experience of it off the computer still lags greatly behind my online experience, however, and so I continue to try to think of ways to change that.
As for the actual improv class? That was amazing. Full of so many insights, but that will have to be another blog entry!
The Profound Autism Alliance Summit, April 5 2024
8 months ago
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