Life Change, Regret(maybe), and Self-transformation.

There's something I don't like about the term "Love of my life" because it implies some kind of privilege to the idea that a single person is the only one I've loved, or puts the love in a place of importance or significance above the other loves -- which may reflect some people's truth but I feel wary about it. Even if my most recent love felt the most significant or deep or held the moments of most growth in my life, I don't feel like that places it above the others. I don't wish to devalue any relationship I've had, however helpful, troubled, or life-changing it was or is. While I don't begrudge the use of this term by anyone else, I've struggled with its meaning and have come to the conclusion that it isn't useful to me.

I'm also in my late 30s, and haven't figured it out. As my second marriage edges on the brink, I struggle with self-care and boundaries and how to be healthy in relationships. Parts of this feels shameful, and when I reflect on it they always did feel shameful, even if I intellectually know that many people figure things out later than this, or maybe even never -- or struggle, and figure out at some point that intimate relationship is not a priority for them, and they shift (gracefully or not) into an independent frame of reference. This framing can still allow for intimacy without subverting what feels like a healthy ego boundary. Sometimes this isn't entirely healthy either; it's possible to fall into some trap of fierce (Westernish) individualism that denies the realities of how much we need love, caring and connection. However I've discovered many people who find some way to grow a community around them that means, being single into older age they don't find themselves completely alone in squalor -- I think this is a large fear of people in our culture: the idea that if we don't partner, then we will become isolated and face our later decades as a person without love. That if/when we become sick and more dependent (especially if we haven't pro-created, but not exclusively -- and the correlate, that dependence is Bad, although this needs critique and reframing), the only logical outcome is death because it is our family alone who would take care of us in this state. And without a partner (or if a partner dies, then without children), society discards us. If we're lucky we can find social connection, support, and an occupational therapist who can help us use old-age benefits to work our way into an impoverished non-independent living situation. It's bleak, we think, to end up there. So regardless of our age, if we're not in relationship, many spend vast amounts of energy finding love.

It seems to me that when people have found love, that confusing mess of support, boundaries and legacy of dysfunction confounds a romantic ideal of mutually supportive and healthy coupling. Perhaps people land naturally and easily into this ideal situation -- and much of the time, they credit compatibility, or the other person's devotedness, or some foolish pattern on our own part of previously looking for love in all the wrong ways (but thank goodness this one person finally came around and showed us what we were missing, or what it really means to love/be loved/be treated like we deserve). I'm skeptical of this.

The people who have "arrived" -- who, at whatever age they found "it" -- can safely and confidently say (this moment anyway) that their coupling satisfies their need for wholly supportive companionship balanced with individual growth (no messy boundaries here, folks). Maybe they were young sweethearts who were always "the one" for each other and achieve their 50th wedding anniversary as prime examples of how marriage works (these people almost never say it was effortless). Or maybe they learned through a series of mediocre/difficult relationships before figuring out (maybe in their 30s, after a divorce or something), consciously or not, how to cultivate intimacy without dependency; or they keep soldiering through less than great relationships and credit the wonderfulness of their current partner with helping them work through things in order to relate in healthy ways. Or maybe they had some seriously crappy or even abusive relationships or marriages, and then gave up for a while, to "find themselves", and then in their 40s or 50s or 60s, and figure out, after a decade or two or three alone, that it's entirely possible to self-care, and that a kind of healthy love/companionship is entirely more possible when the people involved really are their own person and that the intimacy they can cultivate together contains the full sense of differentiated egos each working in their own way to support one another to keep growing and learning.

Whatever it is or is not remains a mystery to me. The above is merely intellectual speculation, mixed with an intuition about the truly healthy and supportive relationships I've witnessed in my life: the childless couple who feel truly like individual people, entwined in shared interests and their own creative, professional and emotional pursuits (they've worked for it, but we rarely see the messiness in it, just the happy outcome). Or the couple who seem to be raising absolutely amazing kids because they struggled for a while to understand that they come from different family cultures and get that a) what each person wants and needs and expects is different, and b) how they learned what demonstrating love is supposed to be doesn't necessarily match what their partner learned, and c) that communication isn't done one way, and d) that we have to see the people we love, whether we found them, or birthed them, as people *first* and roles second, in order to support the person they can become (not the person we want or think we need them to be). Or the couple who seem completely not enmeshed and therefore able to travel for business or pleasure each on their own, support full and vibrant social/creative/professional aspirations of their partner with no resentment or obstructionism because their adult self-sufficiency means that their partner's endeavors come alongside (not before or after) their own aspirations.

I may seem too harsh on the less than ideal arrangements, which can work in their own way. However it's really hard to tell, particularly in the self-representation of blissful baby-making and kitchen re-modeling that seems to represent successful adult pursuit=happiness. I can look at all the things people show me they are doing in marriage, parenting, house-buying, cottaging, hobby-making, business making... and become despondent that these are not things I do (or tweak my self-representation towards that model of responsible-adult-healthy-person, and feel like I'm lying in the process).

People may privately come to some degree of acceptance that they are mutually dependent or even co-dependent, but while it's mildly unhealthy it functions in its own kind of balance for the most part, only flaring up into unhappiness during times of stress. Or people who are truly unhappy but privilege commitment and tenacity to keep struggling through the issues rather than give up and risk being alone (or really, accept that there is struggle, and it's not wrong, but that the benefits of being together still outweigh the drawbacks to leaving). Or people who have kids, and their relationship is not outwardly toxic so they find their ways of living together for economic benefit, energy conservation, pragmatic support, kid raising -- and kind of relent on the probably-idealistic-anyway sense that one can continue to thrive as a person and grow and dream and take risks even as adult responsibilities grow and one necessarily struggles with the sense that there is no time or space for the playfulness or deep exploration necessary to have lifelong continued growth and personal fulfillment. Go to job, come home, do the chores, share a bed, rinse-repeat; self-exploration and play is the privilege of the selfish, childless people (even as what I'm talking about isn't about some Jetski Method of Letting Go™). Maybe we've lost the sense of value that comes with long, thoughtful and intelligent cultivation with others. Of respectful debate around subjective questions, of the many many layers of human growth that contribute to a better world. Trivial things, smartphones and google-facts aren't inherently bad things, but it becomes easier to get used to missing a rich community of ideas if we're all kind of watching little screens instead of observing what's around us. Keen observation is different from consumption. Do many of us have a similar relationship to our partners? Do we become frustrated when another human being isn't so readily packaged and consumed for our pleasure? Is it because we stopped seeing them for who they are because the projection is more comforting and desirable than they are? Has it ceased to be rude or narcissistic to demand the presence of others but then respond to them only as fits our purpose?

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Taking it slowly out of the abstract...

My recent (second) marriage collapsed because it was vulnerable (I dare say fragile), even before events of April 2013 thrust us into an impossible level of turmoil. It wasn't my first long-term relationship in which I struggled. It was hard for me to understand the problems, and easy for most people outside that relationship, who loved and advocated for me, to understand how complex and nuanced the difficulties were. I had supports who seemed to get (as their own experience mirrored) that relationship problems were never a simple single-sided problem residing in the other person at the same time that they could hold my pain and confusion with a degree of empathy. They could support without blaming my partner, or point out my partner's problematic treatment of me with compassion for us both. I credit this in part to their own recognition of how much work healthy relationships take, of how much past trauma can affect the ways we related, and most of all, recognize that if they thought I was a good person, then they must honor that I had/have real love, caring and respect for my partner even if it is a troubled relationship. I have had others who took the tack that relationships shouldn't be so much work and therefore my partner is the Wrong Person. These same people could also point out that I'm too emotional or intense, or over-analyze -- which invalidates the kind of person I am (one who analyzes a LOT, who feels very deeply, and feels quite confused about things.

My own parents have been together about 42 years, and this included a period of seriously considering divorce or separation, but they ultimately worked through that. So in many respects they have been successful, and yet I remain in a place of confusion about the dynamics in my family that equipped me to be in relationship/family, and other dynamics which didn't particularly support the ways I struggled socially as a kid and which impact my ability to have healthy boundaries. At least in this culture, people can often phase through a series of emotional states wherein they blame their parents, feel wounded and angry about things, differentiate themselves, eventually realize that their parents both had an effect but are not to blame for the set of relational tools we developed, and to whatever extent they affected that set of tools, if those tools need re-organizing or changing, it is not up to our parents to fix it for us - it's a personal project we engage in with trusted friends, lovers and therapists. But it's equally easy to cling to a sense that our own toolbox is wholly natural and complete; or that our parents must acknowledge the bad stuff they imparted in order for us to be released from the bondage-illusion of having to please them by being like them (that often just isn't gonna happen); or that our partner simply can't work with our set of tools -- our partner has the incomplete and broken toolbox. These illusions harm everyone involved.

Our (my) defensiveness around our (my) own fallibility is also a barrier. Some of us maybe grew up developing a healthy ability to try and fail, make mistakes and own them, apologize, repair, and grow. As a perfectionist, highly sensitive person with a faulty sense of myself as fragile and less powerful than I probably am (or at least unequipped to deal with failure, or expect to always be perfect the first time), making mistakes is a source of great despair and emotional turmoil. Handling the emotions that come with Being Wrong is a skill I'm working on. But it's equally easy for me to take on blame and churn on it endlessly, which both minimizes my agency and does nothing to repair actual damage I enact on my attempts to have intimacy (a self-defeating pattern). I can endure intolerable levels of harm to my emotional well-being so that I don't harm my partner, but inevitably I collapse and harm my partner because of this entrenched ignoble strategy for "supporting no matter what" leads to being unable to support, leads to abandoning, and ultimately the collapse of a relationship in spite of really caring.

My previous partner (first marriage) and I ultimately parted ways because, in part, I struggled with overwhelm and collapse (trying to get through grad school with undiagnosed autism and a complete lack of understanding of how I could (ask to) be supported). I had also been unfaithful about 5 years into the relationship, and while we attempted reparations and got married, I don't think we/she had healed from that betrayal. But at the time we made the overt decision to end our relationship, I had descended into depression and less than helpful psychiatric treatment, and I don't blame her for eventually pulling away and giving up because I had drawn into myself, not knowing how to get myself out of it. She couldn't save me. And I couldn't be the partner she or I wanted.

My most recent partner was harmed badly by events external to us (but exacerbated by a distinct set of vulnerabilities in our relationship, including our uneven power dynamics, a very thin social support network, and both of us having a history of complex trauma). I was unequipped to support him through; he collapsed, and I collapsed. We kept trying, but that trying felt to me like continuing to put my bare hands into fire, trying to prove that I could solve the problems, stick with the person I love -- even taking on the problems that weren't mine to solve, and simultaneously churning in confusion around what was mine to own. Also, allowing and contributing to very messed up dynamics around who was to blame for hurt, misunderstanding -- blame is a toxic, no-win enterprise. I left three or four times, including one time when I had promised I would not abandon him, and breaking that promise is both inexcusable and understandable given the circumstances I can't fully outline here.

In any case, my second marriage has been one of hope, over and over, that we two people who have felt alienated in the world, afraid, struggling, vulnerable, hurt -- could help one another heal. That the notion that the ways we fight and struggle could be seen as arguments for breaking up or seen as opportunities (if we let them), and yet the patterns that emerged, the projected trauma, the ways we both increasingly withdrew into our own outrage at unmet needs, unstated desires, focus on our own hurt (and a demand for the other to own up and take blame for their failings as if those could ever be discrete from our own failings -- and what about not focusing on failings in any case, and how much is it reasonable to expect the other person to change because we want them to for our own needs/expectations? Not at all, because we don't change because someone else demands for us to). There are too many complexities, and they can't be reduced no matter how hard anyone tries.

One of the most painful decisions I have made in my life was to leave this person I truly and deeply care about - even as he tells me repeatedly that I demonstrate over and over that I don't truly care about him. It's painful because while I left and came back multiple times during post-marathon upheaval, even during times of my own unemployment, I ultimately left once I was almost 6 months into a job that paid enough to support myself in Boston, and left him in a state of unemployment, active PTSD symptoms, and already having lost friends and other supports. I have to live with the duality that I both made the decision I needed to make for myself, and left a person at the worst time in their life (what happened to in sickness and health?). I have to sort out the contradictions within my heart every time I need to establish boundaries with him, to recognize an emotionally dangerous dynamic brewing, even if it means that exiting that dynamic invites accusation that I'm doing wrong because I flee every time I'm told that I'm doing something wrong. Or that I'm making excuses when I struggle with boundaries, or fail to set them and then screw up (thereby causing hurt). The confusion, between his actions and my actions, the effect they have on the other, and how to deal with this in a context of deep emotional pain and fear, well it's a confusion that tears me apart. It can destroy a morning or an entire day. It can send us both into spirals of depression and shame and hurt. I can feel like I'm choosing between sustaining my job, my emotional wellbeing (which hurts him), or trying to pour energy into empathy, caring, listening, and deep, long conversations that are necessary and potentially healing in the long run (except that I can't predict at any time whether they end up being constructive or harmful).

And it's a lonely place. I have some sympathetic friends who have "been there" in one way or another, and advocate the setting of boundaries even as they understand that the boundary setting is like asking me to stop being being a people pleaser -- undoing a lifetime of being oriented away from my own needs, even if no one is explicitly telling me that my needs don't matter, that's... entrenched stuff. I want to change it but it's a monumental task, particularly within the context of a long-term relationship with so much caring and so much pain, and highly contentious ways of relating.

I haven't told my partner that there is no hope of reconciling. I haven't said that we're over definitively, for good, because I feel that would be dishonest. It is my true desire that we work on our own issues, with a degree of better boundaries, and if possible to remain supports in one another's lives. This would be easier, and more reasonable, if he was able to work right now and financially support his own living situation rather than decimate years of savings. It would be easier, in some ways, to completely cut off contact and insist we both engage in intensive therapy before exploring whether that individual work brings us to a space of relating differently. But these aren't the reality. I can sometimes try to carve out a boundary of no contact for a couple of days, but even that feels harsh and wrong even if I truly need that space.

Most each step I take to establish my own physical and emotional space (for the first time in my almost 40 years) feels full of potential for discovering my own patterns, my own needs and rhythms, a refuge to which I can retreat and heal from the assaults the world places on my introverted nature and overly excitable sensory system. There is something inherently positive and self-reinforcing about doing this - from setting up furniture, to living as minimally as possible, to coming home on a Tuesday night without the energies and needs of another person adding noise to my already noise-filled mind. To hear myself for the first time is both frighteningly exposing and strangely good - like listening to oneself being interviewed on the radio. Is that me? Wait. Really? In the absence of anyone, this is my voice? This is my heartbeat? I can choose silence? For someone who finds mirrors uncomfortable, my own eye contact too intense (let alone looking others in the eyes), being alone is a project in self-awareness that only when faced with that aloneness am I realizing how much I cocooned myself in the energy of others, a multi-channel radio that drowned out my own frequency. It's not that others necessarily drowned me out on purpose. I believe I lost the signal a long time ago. There's still a lot of static.

Each step I take also feels like a betrayal of him. Like a giving up, even if that is less an abandonment than a letting go in order to wander out into the wilderness of myself and find what it is I need so that I can come back more intact and clear and healthy. Even if by doing so, I hurt him in the short term, yet in the long term, at the other side of the pain is a gift of a more whole me (which is primarily a gift to myself, from which my partner benefits).

So I have my own apartment. I'm working full time, setting up my space, newly on a board of directors, try to go to yoga once a week, try to see a friend, and try to navigate the space that is: I care about my partner, I care that he's hurting, that he feels he's collapsing without me, that he feels abandoned by the world, that he's angry and resentful at me, that he is caving to a message from the world that he is not wanted and doesn't matter. Except it's entirely possible to become the focus of those problems: I'm the one to fix it, repair it, address his resentments and continue holding the promise of a future together (at worst, the idea that it is my problems that are the main barrier to our relationship success) -- and that stating and re-stating what many have told me (therapists included) that we can't create a healthy relationship if either one of us refuses to own our shit and work on it. Which isn't going to happen if either one of us dwells on whether the other is owning their own shit and working on it.

This writing has gotten entirely too long. Sorry. But thank you if you're still reading.

One of the struggles I've always had is managing the network of relationships that is community. What do those people I know think about this other person I know, and vice versa, and what effect do I have on others' perceptions of people in my life, especially my partners?

Did I destroy others' positive regard of my partner? Is my challenged ability to hold all the meta-data of networked community what failed my marriages because we could never have the community support any marriage needs to succeed? Because I couldn't do it? Because I couldn't be "we"? Or because I was too unhealthy "we" and not enough "me"? Or too much "we" to everyone else but him, who felt I was selfish?

If I'm unhappy in a relationship, am I primarily influencing whether they judge that unhappiness to be a mutual state, the fault of my partner, or my own? Or does each individual's ideas of what a healthy/successful relationship is (whatever their version is of my own ramblings above), ultimately decide their approach to how they support a loved one going through difficulties?

Like if people think it's right to stick it out no matter what (don't divorce if you can help it), then I'm wrong for leaving. If people think relationships should just work and that if it's work, then I'm with the wrong person. If people think that relationship communication is key and that this is a skill not an inborn trait (that it's something they can learn), they may be neutral about whether I should stay or go, or trend one way but feel supportive either way, as long as the effort within the relationship is balanced with both people constructively working on communication.

As it is - many people feel that my separation and getting my own place is absolutely the best thing I can do. I think many would feel disappointed or even betrayed if, 6 months from now, J and I got to a place where we wanted to enter couples therapy and explore getting back together. As for how I feel? I'm scared, confused, and trying to discover that small voice telling me what the next moment wants.

At least for now, that small voice is whispering that being alone is the necessary thing. So don't congratulate me too much, because this hurts a LOT. Don't reassure me that with time I'll separate more and it will be better, because that feels too simple, and ignores that the man I left is a real person with feelings who you don't care about. You may be able to justify not caring about him because you care about *me* (which, just to say, hurts me), but this doesn't help ease the pain. You may not understand how deep it runs, this feeling of being unable to discern my own needs, like pulling off the Red Shoes because they keep me in this noisy dance and it needs to stop except the Red Shoes don't just pull off. I'm not the same as your friend who had to get away. I'm not the same as you, who got lucky (or had the tools) to be in a relationship already that fully supports and enables you to be your own person. My partners never intentionally kept me from this project, so it's not their fault, however if they unintentionally interfered with it, then I need to develop my OWN awareness and call to action from which I can move forward.

This is entirely too long. To quote that John Mayer song, I'm "like a maze where all of the walls continually change".

Thanks for rambling with me.

Ways I Love

Love, not Fear.

I first thought of other people's fear, but then thought that what I really wanted to blog about was self-fear. Fear of the world, fear of the politics, fear of all the hate, fear of other people, fear of being judged.

Image description: Text on red background with heart design. Text reads: Flashblog Love Not Fear, presented by Boycott Autism Speaks. Submit your: poetry, essay art, photography, etc. by February 13 @ 12PM EST email to:info at boycottautismspeaks.com inside the heart design is the hashtag #posAutive

So I'm a day late, whatever. I have never participated before in a Flashblog. I can always post on twitter.

I don't know what to write that would affect other people's fear. But understanding fosters love, so I guess starting there is something.

Someone wrote (paraphrasing) that the big loss that autism brought [them] was never being able to hear "I love you" from their child. What's interesting about that is how much that didn't really say anything about autism itself. Maybe it says something about how much fear there is about the myriad of other ways, aside from words, in which one can say I love you. I don't judge this comment, although it feels attached to so much sadness. #LovenotFear means that harsh commentary on them is a move away from love. I'd rather try for understanding. Are words the only way to say I love you?

There is sign language.
Stimming on your beard may be one way to say I love you.
Showing my favorite toy for a moment is another way to say I love you.
Talking to you a lot about what I care about is sharing myself, and a way to say I love you.
Putting my head in your hand is a way to say I love you.
There are many more.
There IS love. Do you see it? Do you feel it?

Except I fear myself. I fear myself going out into the world and being judged as less than or wrong, because I think, behave or look different from an expectation I didn't create. If the clothing I need to wear in order to focus on being a part of the world is "odd", I want to be able to love that and for that to be okay.

"People" share that tired wisdom that one must love oneself before anyone else will.

I think we learn very young how to love ourselves, from others. So really, we don't do this by ourselves. We can't love ourselves, despite the whole world telling us that is an illegitimate love. We have to love each other, it's the only way through.

So love the quirks, love the struggle, love the odd, love the difficult, love the strange, love the frenetic, love all the ways the souls around you manifest in the world, however it is they manifest.

Someone said to me recently, that they loved how honest I was because I didn't say something pat or glossy about where our lives are at right now. That's love. That is recognizing the humanity in another. It may seem tiny, but that's what love is built on. Those tiny acts of acceptance, recognition, of being with, that allow the full range of what it means to be human into our world.

Love, not fear. Open your heart wide, because there's a lot more ways to say I love you.

Nothing is a Waste

I originally unloaded this as a post on Facebook, after reading one too many comments on there and twitter about Phillip Seymour Hoffman's death including the phrase "what a waste". This phrase is a big huge trigger for me. So I wrote about it.

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Back in the 90s, I remember having more than one conversation (or argument) with women who would see a really attractive gay man and say, "what a waste". And I would ask, "Why, exactly??" What is wasted about a gay person? Is it your assumption that they are "opting out of the gene pool"? Are you just lusting and it's a way to offload your aggression/frustration about it? Because what a waste they can't have babies (which we now know isn't even an accurate assumption)? I think the people who would say this truly thought their comments were innocuous. Like that there was nothing wrong with saying it (even that it was said in jest). To my knowledge people don't say this anymore, but I wouldn't be surprised if this context still existed.

When someone comments on the death of a famous person, or any individual who died "too soon", for reasons of their own cause or by another's hand and says "what a waste of a life", I am filled with a kind of rage I don't know what to do with. What makes for a waste of a life? Are people dying of bad drugs in mental hospitals a waste of a life? Is someone dying at 25 of a terminal disability a waste of a life? Regardless of what a person did in the time they had here, nothing they already did is wasted. They haven't done what they haven't done, so it's impossible to say what could have been. Is the death of a famous person worse than the death of a different drug addict, or an unknown talented person? Is it a waste because of how they died? What about people who die too soon because they eat food that kills them? Do we say that about them? Is the waste about the content, or what hasn't happened yet? Are people projecting their own regrets and sense of fragility of life? 

I know that calling gay people "a waste" isn't the same as calling the death of someone who overdosed "a waste", but something in the sentiment triggers for me the same kind of anger, even rage, about the assumptions and judgments we make about people and actions, and class, and race, and disability, and human life.. all kinds of things that are bound up in those few words. 

Marilyn Monroe, Amy Winehouse, Kurt Kobain, Janis Joplin, Vincent Van Gogh, countless others known and unknown, just now, P.S.H. -- You may think saying "what a waste of a life" is a way of saying that they were so valuable and you are so disappointed that they are not going to have impact beyond their death (but even that is untrue, just look at the list above). None of them were a waste for having been on this earth, contributed what they have, experienced and loved and been loved. 

No one is a waste, and everyone is valuable. Underlying the phrase "what a waste" is a very unexamined connotation to the value/lack of value in any given human life. Yes, precisely -- the opposite of what you might think you're trying to express. Thanks for listening and considering.

Concrete

All my steps will be encased in concrete. 

The tender steps on earthen moss,

Carrying nothing but my heart,

Carrying only what I need to survive:

These too will perish.

My heart will be encased in concrete.

Hardened by the frosts that consumed it,

And all the times it was measured, assessed and condemned--

Reduced to questions, like:

How many successful babies did she produce?

How many units of revenue did her time generate for someone rich? 

How many minutes of happiness compared to how many minutes of pain?

How many lovers hated her, in the end?

How many opportunities did she seize, compared to how many were squandered?

How many times did she let her brilliance die, to live in another's room and falter at being open-hearted?

How many poems were written about heavy, concrete hearts

Or political truisms, 

And were never shared?

How much did silence make her life small?

How many broken dreams were scattered to the wind, marring freshly laid concrete?

Even the woods weren't safe, 

Like when we were caught in a landslide and I was hoping and scared about dying,

Even then, as we

Measured steps, degrees on a map, turns not taken, feelings unshared, 

Degrees not finished,

Love found and lost or never pursued; or discovered, long ago, to have withered. 

In the end all is cocooned or

Mummified in an anonymous bank of time,

That is everywhen and nothing all at once.

This earthen heart, tread upon with so many breaths,

Cannot contain the question.

If You Turned the Volume Up on my Brain

There's a deep reason why I think that functioning labels, severity scales, and dominant definitions of autism, are faulty. The reason extends to why I can embrace the term autistic as a way to describe my experience without hiding it or couching it in ways that separate me from other autistics. The reason is that when I observe a fellow autistic at the museum [crouched on the floor, yelling, covering their ears but wanting to cover their eyes too) and their caregiver is hauling them off from the lobby because all of this is drawing too much attention from passersby, I think to myself, "me too". Because that's the way the museum feels.

No, I'm not crouched on the ground trying to cover my eyes and ears at the same time or trying to vocalize to match the auditory assault, but my experience of the museum allows me to know that if I took my experience and intensified it more, I would probably have the same reaction. I actually see it as a profound lack of empathy, understanding, and imagination, that an allistic (non-autistic) person doesn't get it. Maybe it's just ignorance, but that's every reason then to keep reading, searching, and trying to really understand what autistic sensory experience really is.

I've been following Intense World Theory for quite a while now. When my friend Michael Forbes Wilcox posted his own thoughts to a recent follow-on article by Maia Szalavitz, I got to thinking more about how a lot of things hang together through a refocus on sensory matters in autism.

The primary way I have come to understand being autistic is the very embodied experience of my world. I can recall this mattering from a very early age.

Some basic points in my story, which may or may not be worthy of mentioning in this context (and apologies for any repeated mention):

• Pre-natally, my mother worked at a bank and it was robbed while she was 7 months pregnant with me. I have no memory of this, but the details of the incident and imagining the stress that incident must have caused, I don't doubt the experience impacted me, even if it was just a 7-month cortisol spike.
• I was colicky and difficult to soothe as baby. I'm told that if they put me an elevator or the car I would fall asleep. Motion helped. 
• I read early, and taught myself. My mother had no idea I could read until she had me in the seat of a shopping cart and I told her that she couldn't take it out of the parking lot; she asked how I knew that and I replied, "It says it right here [on the handle], 'Do Not Remove From Parking Lot'." This is the stuff of legends
• I recall a lot of physical discomfort even from an early age - itchy clothing, pilled bedsheets, the confines of shoes, the tenderness of bare feet, dissonance of 80s radio music, horrible perfume smells of old people, distasteful food textures, loud noises, the wonderful smell of leaded gasoline, the startling strobe effects of light through trees, lining up pennies according to year, organizing crayons according to hue, noticing defects in the oriental rug and tracing the patterns with my eyes over and over, always needing to pee urgently because I couldn't tell before it was urgent, gastrointestinal distress (including mid-meal pain and loose stools I never told anyone about), being overwhelmed at attention paid to me, being so shy, being so afraid that I couldn't bear to make noise for fear of being noticed...
• They called me little professor. For a long time I was touted in my family for being so 'mature' (though I think this was a typical point of praise for not just me), in part because my vocabulary and way of speaking was so serious, so intense. I rarely spoke but when I did it was with purpose, thoughtfulness, and with a tone and language that gave my words a kind of adult quality. I think it masked how much I struggled.
• I recall in grade 3 how confused I was by the ways girls played, and the politics of friendship. I know it was before then that I felt I was different, and before then that my high levels of anxiety and distress informed the way I experienced the world; but grade 3 remains a retroactive marker of some point at which my memory of deviating from my peers stands out. Before that, I can't say my play or behavior differed so much, but it was some part of the social developmental landscape that changed then -- and I never really quite caught up. School years got more and more insufferable.

I mastered the ability to make a locked bathroom door open and close silently. I learned how to get dishes out of the cupboard without making a noise. I learned which places on the steps made noises and learned to avoid them. I think I did this to not be heard, but also because all of those sounds distressed me.

I coped with auditory processing disorder, an inability to process speech in noise (every sound is the same volume), often missing what someone said but would pretend that I heard.

I was teased for the way I looked, the way I dressed, the way I excelled in school, the way I didn't understand social cues (and specific tricks were played on me because of this). I cowered when the substitute teacher would loudly reprimand all of the unruly misbehaving kids but wish they would shut up because I couldn't hear; I would excel in school only through my ability to read copiously and accurately.

For a long time now, I have liked to wear something on my head. I wear winter hats indoors, bandanas for days and days, loved the years I kept my head shaved because the sensory experience of my head is really important to how grounded and coherent I feel (and covering my head keeps me from scratching my scalp compulsively -- so does keeping my nails short, and I can't have any whites in my nails if I want to tolerate typing).

My memory for textual information is solid -- where I lack auditory memory, I make up for it in my ability to read through a manual for that new piece of electronics or whatever, and recall the information later. Or to bring up odd and obscure facts about something, or a memory of childhood, because of associated information read, smelled, felt, processed in that visceral way I have come to understand as an autistic, heightened version of the way memory works.

I don't look at faces very well. I can feel like faces are too much information. If I'm trying to listen for information, looking at a face will drown out my ability to process the voice. I have learned to mitigate this by looking at cheekbones or hairlines or lips. However I believe I miss a lot of cues, because it's too much information, it always has been. 

In her book When the Brain Can't Hear, Teri James Bellis talks about a feature of Auditory Processing Disorder that opened up yet another realm -- a right-brain aspect of processing tone of voice that she discovered was affected in her after a car accident. She began to perceive people speaking nastily to her. I know I have always felt highly sensitive to the way people spoke to me. While I can't say for sure whether I am misperceiving tone of voice in people, I do know that with some people, mostly personal relationships, I can really hear an exaggerated melody and meaning that I can interpret as hostile. Even non-personal relationships can be this way. Other people express surprise that I can really bristle at the way Tom Ashbrook seems to talk in a sardonic way to some guests or callers -- most people think he's far too agreeable!

Looking back (and into now), it's impossible to tell whether my not reading body language and mishearing tone of voice came out of my sensory experiences, but I suspect this. Even now, I find my ability to connect with others fluctuates with the degree of sensory cohesion I experience. 

What I mean is, that I can be more socially present when I am less overwhelmed: when I'm in a quiet environment, when I'm in comfortable clothing, when my body functions aren't nagging on my attention (or out of conscious awareness but still painful or problematic); when I've eaten well, exercised recently or had sex, which can be highly integrating if it's good, when I've felt not taxed.

But here's the thing -- I learned really early on, I think, that all of these experiences and needs are unusual. Even though no one explicitly gave me the message that it was wrong to feel those things, I instinctively began to hide (and suffer), rather than be a burden or focus of attention. 

It was either a blessing, a curse, or both, that I could basically straightjacket my behavior into Compliant Well-Behaved Girl and still perform well at school enough to not really ever touch special education (I was not sent to gifted program though because of some social/emotional reason, however).

I spoke recently with a staff member at the Aspergers Association of New England about the profile of girls coming to their services, and for the most part, the Compliant Well-Behaved girls are still flying under the radar and being missed, until probably adolescence when they may have an eating disorder, or self-injure, or have other difficulties that lead them to be identified (or not even then; I was self-injuring, but I remained under the labels of anxiety and depression until 2009). 

Just because I was Compliant Well-Behaved Girl, I experienced an intense world. I relate highly and strongly to autistic writers on all parts of the spectrum who talk about their sensory experiences. Some people unacquainted with autistic adults might comment that I'm nothing like the autistics/their autistic child who can't speak, or control their bowel movements, or rock and cover their ears in public spaces... The internet goddesses know how many autistic adults have had to endure battle after battle over how "We Are Like Your Child" and this post may very well draw that kind of battle (and my intense world will cower at it all, which is why I've rarely posted here as the fire got hotter).

But I do relate to autistic writing, especially of a sensory nature, and my strong instinct is that it's all a matter of degree. While on the outside my straightjacketed compliant self seems worlds away from dominant "autism as pity/tragedy" ideas, I firmly believe that if you took my brain and turned the volume even further up, my ways of coping would look very different.