Website still broken, but URL fixed!

Thank you with all my heart to everyone who sent me gift cards and items on my wishlist, to help me cover household expenses and necessities like toilet paper and RV repair parts, things that aren’t covered by my food stamps benefits and continue to be expenses. I still have no income and fight and wait year after year for Social Security Disability Income. I’m waiting on district court proceedings with my disability lawyer, and no idea when I will hear anything.

I moved my domain name over to GoDaddy, who are more than happy to set up forwarding to this free WordPress blog, so my URL works again!

Unfortunately as soon as I fix one thing, five more fall apart. I’ve been consumed by trying to learn to repair my laptop, phone, and RV—as well as dealing with hiccups in getting my medication and an issue with my food stamps. With these ongoing costs and in spite of auctioning off everything I can live without, I’m still struggling financially. gift cards in any denomination, or any items on my wishlist, are still enormously helpful and appreciated.

New, broken website

I can’t afford web hosting any longer but my URL is paid up through next year, so I’ve migrated to free hosting.

This means a lot of older posts on this blog that featured embedded videos are broken. Fixing those and trying to make this site more functional cannot be priorities right now. I have a limited amount of time, energy, and resources. I’ve saved a backup of the old site in the unlikely event I’ll ever be able to pay for hosting again. In the meantime this blog and some of my other pages sort of work.

I want to thank from the bottom of my heart all those who gifted me gift cards enabling me to buy necessities like soap and such that aren’t covered by my foodstamps. I also deeply appreciate my friend Amanda’s continued assistance in selling on eBay all the things I can live without. It’s not much but every little bit helps.

Right now with my dire financial situation my priorities are applying for Medicaid and also Supplemental Security Income, which while different from Social Security Disability Income, necessitates some similar processes and doesn’t have a lot of reliable guidance out there for how that will go for me. Many people apply for both at the same time and sometimes SSI can get granted while waiting the interminable process of getting SSDI, which for me has now been four years with no federal district court date in sight. I have a disability lawyer to assist me in the process.

These are not guarantees that I will ever get approved for any of these programs in spite of how severe my disabilities have become, exacerbated by the stress of living homeless and running out of money no matter what I do. I live way out in the country and must have a car to get groceries, treatment through North Carolina’s free mental health care program IPRS, and get medication. That car is far and away my biggest expense: insurance, maintenance, taxes, registration, and gas. The only programs out there to help with transportation are extremely short-term or apply only to those already approved for disability. Most every kind of benefits there are hinge on me being approved for SSDI even though the dire nature of my need for these benefits is because I don’t have that.

There is nothing I can do to speed up the SSDI process. Believe me, I have done a lot of research and asked my lawyer and tried all I can. There are plenty of articles and firsthand accounts of others in my same situation who are going through the same problems. When I run out of money I can’t even file bankruptcy because I have no income nor any guarantee of ever getting any from Social Security.

I’m burned out. It takes more than everything I have just to stay afloat, research options, try things, and sell everything I can. It’s stressful, triggering, heartbreaking, depressing, and the futility exacerbates my conditions. The way this culture, this country, this government, and individuals treat the disabled is passively criminal. No one in a position to do something cares if we die. There’s a lot I can’t do to fight this because I am disabled and my limitations are greater than the abled, something that the abled often find impossible to comprehend when they offer advice based not on my capacities and abilities but on their own.

If you think I’m not fighting as hard as I can, already redlining my capacities to do all I can, you’re sorely mistaken. I don’t need advice. I’m already talking to people who work with the disabled and understand the harsh realities of this situation. I need disability income. Sadly it seems that other than those helpful gift cards there’s nothing anyone else can do.

If there is one basic thing you can do, it’s to refrain from giving advice. Advice puts the burden on me of explaining to you what I know all too well about my reality or else doing more, which as I already stated I can’t. It isn’t that I don’t want to help myself. I am doing that every day.

What I can’t do is deal with people who don’t know what they’re talking about and think that advice rather than offering help is generosity. Unsolicited advice is criticism. I get more than enough of that as it is. It frustrates and irritates me that advice-giving is such a compulsion for many people, particularly those who don’t have any shared reality with me, who have privileges and abilities I don’t. Why are we raised to think advice is just as if not more appropriate ‘support’ than asking what one can do, or actually committing some of those privileges and abilities to doing something about it?

No matter how much I read, write, and talk about this, advice-giving is an unconscious response to others’ trials, especially when the advice-giver has no personal experience or expertise in that area? If I could wish for one superpower, it would be to overwrite that hard-wired instinct to give advice the first time someone in a dire traumatic situation opens up to you.

It’s inflammatory and exhausting to have dealt my whole life with people who don’t know what to say and say it anyway, or ask inappropriately personal questions about the history and background and details of things like my disabilities, how I got here, and my widowhood. These are sensitive, vulnerable topics. If I wanted to tell you the whole story I would. After advice-giving I’d love to shut down the compulsion that drives people to interrogate someone in pain about that pain, asking such personal questions they would never ask a random stranger. That I have shown you my wounds demonstrates vulnerability, it doesn’t invite reflexive curious prodding of the hurt places. I may share some details, it doesn’t mean I will tolerate pressure for more.

Listening is justice. Listening is loving. Asking what you can do to help and then following through is true support. Recognizing the limitations of your experience and knowledge is crucial to being there for someone who is suffering in ways you aren’t.

I’m fortunate and grateful for those in my life who are wired differently, who default to listening, to asking what they can do with a genuine unselfish capacity to follow through, even to action, based on their own capacities to be there.

I wish there was more anyone could do. Going this alone is hard, but not as hard as going through this with people wanting me to educate them or do things I don’t have the abilities to do or that aren’t possible or advisable—or even dangerous.

This is a dangerous time for me and has been for a long time with no end in sight. Every year, every month, sometimes every day I have less to give as I fight harder just to survive.

Maybe what I really wish is that those in a position to make my survival possible could feel exactly what this feels like, hour after hour, year after year, in the face of all this. I’m worn out. I have no more to give than I already am.

From what I’ve heard from others in similar situations, they are equally isolated, unheard, and gunshy of showing their struggles and pain to others for exactly the same reasons. It makes us targets for well-meaning behavior but also for people who feel better or more powerful or valid by attacking those who don’t have the ability or capacity to fight back. We’re out there. Our voices aren’t heard because it’s too dangerous for us and too unpleasant for others. Some of us are dying, not because our conditions are fatal, but because people who can and should do something won’t. We’re faceless and devalued invalids.

Never forget that this could be you. Disability doesn’t discriminate based on age, health, class, gender, race, creed, nationality, willpower, skills, or however many friends we think we have to support us in desperate times. I was told after my husband died that grief rewrites your address book. I think this is true of all hardship. Friendship and support are easy in the good times.

Believe me when I say what I can do varies dramatically day to day due to my symptoms. It has been hard enough for me to come to grips with the limitations my disabilities place on me, and still I drive myself past what I can or should do and I pay the price. It’s hard enough dealing with the implicit shame and sense of personal failure and unworthiness our culture drills into us from day one, that our worth is what money we can earn.

Believe me when I say I am doing the best I can to survive. I want a life worth living, and what I need to make that happen is out of my hands.

If you want to help in more tangible ways, gift cards are still always welcome and enormously appreciated. My needs for things like soap, paper towels, toilet paper, and other personal hygiene items will continue indefinitely even while I still have no benefits available to help me get those vital things of living.

People are dying waiting for disability, and I may be one

Since I started posting and making videos (which I’m now too symptomatic to do) about struggling with disability and my long fight for Social Security Disability Income (SSDI), one of the most heartbreaking things has been all the responses of people just like me, out there, isolated, alone, suffering, running out of hope. The worst part of it is, as my situation continues to deteriorate year after year through this struggle, I’m so decompensated I can no longer bring myself to respond or even post at all. My symptoms and poverty overwhelm my life to the point where I can barely take care of myself. I no longer feel I have a shared reality with anyone I know, and without that shared reality there can’t be meaningful connection.

Here’s an article from the Washington Post discussing the 10,000 people who died in 2016 stuck in this same backlog of disability cases.

Here’s another article from the Washington Post written by someone who lost everything waiting for disability.

This second article details what I’m going through right now. It’s been almost four years since I first applied for disability. I haven’t worked. I have sold my house, furniture, appliances, and almost all my personal possessions of any value I can survive without. Soon this website will go away; it’s up for renewal and I obviously can’t afford it any longer.

It’s terrifying and exhausting to be at the end of my savings, the end of everything of value, and still have no idea when I will get my day in district court or what will come of it. I have the best possible SSDI lawyer for my case—lawyers that work for a portion of the back benefits, so if I don’t get paid he doesn’t—and he tells me we have drawn the best possible judge to hear my case, but there is no way to know when the court date will be set. In the meantime I have to scramble to sell anything that I can of any value in order to pay for my car insurance and upkeep and gas. Because I live seven miles from the nearest grocery store, and much further from where I get mental health treatment and medication, the loss of that car would mean slow excruciating death.

One of the worst parts of this is not being able to talk to anyone I know. We don’t have anything like a shared reality and all too often people are in a hurry to give advice about a situation they don’t live with and know nothing about, which has gone from annoying to infuriating and insulting and frustrating. Over all these years, I haven’t been sitting around doing nothing. I have been working with therapists and social workers and institutions to apply for every conceivable benefit to help me get by. I get food stamps, but don’t qualify for Medicaid, SSI, or housing because the money I have—all that exists for me to live on for the rest of my life—exceeds (but only just!) the limit for cash on hand for those services. By the time I am below that limit and apply again, those applications will also take months or several years, during which time I will definitely run out of money. Meanwhile I’ve been waiting for four miserable years trying to spend as little as possible, doing without things when they break, fearing something really expensively disastrous will happen to wipe me out.

It feels like getting saddled with a heavy rock, and then another, and another, and another, continually for ages. I’m increasingly crushed and breathless under the burden, scrambling to find any kind of way of surviving. Food stamps don’t cover personal hygiene items and the local food bank doesn’t either. I’ve been looking unsuccessfully into other organizations to try to find those things, but even that isn’t going to do much to save me. There are a few places that I’m looking into to apply for gas vouchers. Yet still, it’s car insurance and upkeep, taxes and registration that are the huge expense, and though I’ve done everything I can there, there’s not much that can be done and still keep that car safe and functional.

One thing I hate most about talking about this with other people is their suggestions for jobs. As if I just haven’t thought of the right thing. It’s invalidating to me that I can’t get across that it isn’t that I need a particular special job: I am too disabled to sustain gainful employment. I may from time to time be able to accomplish some things, but that’s hardly the same as doing that consistently 40 hours a week 52 weeks a year. Someone in a wheelchair may me able to get up enough to transfer from the wheelchair to a car or toilet seat with great effort, but that doesn’t mean they’re able to walk everywhere. That’s bullshit.

I’m tired of suggestions of work when the basic problem is that I can’t work and I’m tired of explaining it. If I could work, I would. No one would endure this terrifying, humiliating, drawn-out, draining, psychologically and fiscally bankrupting process of fighting for SSDI for four years if they could work. Even if I succeed in getting these benefits, I will still be living in poverty and have to get subsidized housing and Medicaid—but I will be living.

The real trick is surviving until I get there.

Do you really want to help? I understand that advice-giving usually is triggered by discomfort on the part of the person listening to a predicament, but I can offer much smarter ways to help me.

  1. Listen and validate. I’ve heard ‘listening is loving’ and also ‘listening is justice.’ In this case, it’s kindness and love for you to be just reading these words and validating that this struggle is real.
  2. Please don’t ask invasive questions about my disabilities and how their symptoms impact me and my daily life and my ability to work, nor invasive questions about my living situation or how it got this way. I already have to sacrifice my psychological, bodily, financial, and every other kind of privacy every single time I apply for benefits. Privacy is a privilege one doesn’t realize one has until falling down as far as I have, where I now have to provide excessive personal documentation as proof in order to try to get my basic needs met. I would like at least some people and places in my life to respect my privacy and not make me feel like I must prove who and what I am. It’s humiliating, and in a way I think most people don’t consider when dealing with someone who is poor and disabled, to ask what may feel like harmless questions to the questioner but are loaded and extremely overdone to the questioned. The fact that I share a lot of my struggle isn’t an invitation for you to use me as a teaching tool or to enlighten you about my entire experience. I’m exhausted just trying to survive. There are plenty of websites and articles and videos out there for you to educate yourself, done by brave people who share my plight.
  3. Have patience with my struggle. Understand that almost all of my time now is split between managing overwhelming symptoms that are exacerbated to an unconscionable degree by my living situation and money terror. My first priority is to take care of myself. I now find it almost unbearably draining, not to mention risky, to respond even to most of my friends. I’m engaged in a humiliating, painfully vulnerable fight for my life that has worsened over the years, and I’m keenly aware that I don’t have the resources to maintain friendships or reciprocate when I can’t even meet my own basic needs. I also can’t protect myself, and as an introvert talking to other people is draining energy I need to survive and deal with painful disabilities.
  4. I have a wishlist on Amazon made up of household essentials I’m in dire need of that food stamps don’t cover, mainly personal hygiene and cleaning items, but also Amazon gift cards I can save and use to buy these and other daily necessities.
  5. If you do choose to avail yourself of this and gift me the things I need, thank you. Please, I beg you, take care to have self-awareness! Take a deep look at yourself before you do. I have good reasons for not asking for help or favors; I have had traumatically abusive experiences the majority of the time people have offered me help. The friendship changes. The worst changes come from those who insist that they won’t, and deny that they’re scrutinizing my behavior and spending habits and life more so afterward—people without the self-awareness to admit that their charity was conditional. I’m not talking about an expectation of reciprocation, but after accepting charity I often find myself in a position where the giver becomes intolerant of my setting boundaries with them or telling them ‘no’ and it snowballs downhill until I have to go no contact. I have neither the energy nor the patience for any assistance that comes with strings of any kind. I understand that for the vast majority of these bad experiences I had, it was done unconsciously out of discomfort for my suffering and need, but that only makes it worse. Anything someone is doing or saying or expecting that one is in denial about can’t possibly ever change. No matter how good the intentions, charity can become toxic, a form of abuse and control, even without the knowledge of the charitable. Us recipients sure know what that feels like, though.
  6. Consider buying or making an offer on the last few things I’m selling. Currently I have listed an excellent condition Ensoniq TS-12 synthesizer with stand on and an enormous statue of Figment the dragon from Disney’s Epcot Center on eBay. (Enormous thanks to my dear friend Amanda for helping me deal with eBay as it’s more than I can handle right now.) I’m down to the most difficult and unwieldy things to sell, hence the hugeness of the pieces and large shipping fees; I’ve failed to find local homes for these. If you know anyone who might be interested please do pass along the links! In the coming weeks I’ll be listing a few lots of semiprecious gems and pewter figurines, and I will share links to those as well if I’m having difficulty selling.
  7. Spread the word about the thousands of disabled people in the US suffering, going broke and homeless, unable to afford proper care, and even dying through years of waiting for disability. Start conversations. I’m too long-winded and tired for the age of tweets and hashtags. Find better ways to write and talk about what you’ve learned here and make some noise. Most of us are too tired, frightened, humiliated, and disempowered in every way to fight when it’s a fight every day just to survive and live with inadequately treated disabilities exacerbated by our living conditions and lack of resources to meet our basic needs. (If you’re really ambitious and so inclined you can write to your political representatives, or news outlets, or hell, ask Last Week Tonight with John Oliver to do a deep dive on Social Security Disability corruption like they did with immigration courts recently.) Use the privilege of the energy and time I don’t have anymore to advocate for those of us who can’t. Enlighten one other person about this fucked-up system. To me the most important thing about this is the fact that anyone, regardless of class, race, creed, family, nationality, age, gender, sexuality, physical fitness, and fastidiousness with personal health and safety, can at any time without warning become to disabled to work. We come from all walks of life. What is happening to me could happen to anyone, anywhere, no matter how safe you think you are, or your loved ones. Disability is not our fault. Do we become untermenschen because we cannot work? How fragile, then, is your worth to this society and your fellow humans? Are you only worth what someone will pay for you? Food for thought.

Thank you for reading. I’ll eventually set up something like a free Blogspot (assuming I’m still alive) if I can muster more words to say in the future. This site will still be here a while and I will retain a backup of it in case there will ever be a better life for me in the future.

I won’t hold my breath.

Art & Soul: Alchemy and Validation

“Since time immemorial, stories have been used as a way of transmitting cultural values, ethics, and morality. A bitter pill can be swallowed more easily when it is embedded in a sweet matrix. A straight moral preachment might be dismissed, but guidance and direction become acceptable when embedded in a story that is intriguing, amusing, and interestingly told.” —Sidney Rosen, ‘My Voice Will Go With You’

“It’s easier to tell the truth in stories.”

I was a child when I first said this. Every year it has become more true to me, and I have found more sentiments like Sidney Rosen’s in his book about psychologist Milton J. Erickson that validate that sense. Art of all kinds looks to me like a way of inviting or enticing people, and art with a strong message performs the delicate act of coating a bitter pill with Princess Bride-style chocolate to make it taste better. As someone else (that I did not write down) said, it disturbs the comfortable and comforts the disturbed.

This ‘Art & Soul’ series, originally intended to be YouTube videos, was I think a desire in me to search for those things in myself, to dialogue and puzzle through in writing my feelings about art and soul in general but also to specifically answer for myself the most sleep-destroying question of my life: how do I turn all this pain I carry into satisfying art?

Also in many ways: how do I recover my imagination from the endless repetitive loop of trauma and fear?

What I yearn for is a sort of alchemy. Alchemy appeals to me for a lot of fantastic human reasons. As a science it’s total crap, but as a method for exploring one’s inner worlds it’s heartily endorsed by Carl Jung. The dreamlike imagery of his ‘Red Book’ as well as the traditions and myths of alchemy are deeply appealing to me on an art level, but also as ritualistic ways of drawing out what often resists language and logic like narcissists resist realistic self-knowledge. We respond to rituals and patterns, it’s part of the human condition. (See: Matthew Hutson’s book ‘The 7 Laws of Magical Thinking,’ where he even deconstructs his own delineation of 7 laws as a form of possibly flawed thinking.)

The creation of art can be incredibly ritualistic. It can also be incredibly flippant and shallow. I still haven’t read it yet due to a reading list backed up from here to eternity, but I want to talk about ‘The Screwtape Letters’ despite being ill-informed. Recently I watched Stephen Colbert being interviewed by a Catholic priest on YouTube. Colbert spoke of the four forms of humor described in ‘The Screwtape Letters’ and the fourth was the only one the two demon characters discussing humor focused on as a way to influence ‘clients’ (i.e. the human race) to the dark side of the Force. The first was joy, the second play, the third the joke proper, but all these had the potential to invoke closeness and divinity while the fourth was flippancy, and only created barriers between people and atrophied the intellect.

Listening to this I knew finally how I felt about a long stretch of my early teen years where I wrote poetry. I knew I felt nothing and revealed nothing and invited nothing and risked nothing, and here was an excellent framing for what that was and how I sometimes feel when I experience works of others’ art (or especially my own)—there is nothing at the center of the Tootsie Pop. There’s no passion, no drive, no message, the artist acting almost as a random generator regurgitating forms and stories and diagrams and what seems like what would happen if you deconstructed someone else’s art and swapped out pieces with a clinical air to present something as original.

I hate writing that. Because I feel like this is leveled at a lot of burgeoning artists and shuts them down before they build a capacity for public vulnerability and self-knowledge and confidence with their craft to show up and be what they have to say. Hell, in various nicey-knifer ways I’ve had that done to me so relentlessly it shut me down repeatedly for years, and as soon as I’d build back up it would hit me again in that soft fleshy ‘who do you think you are?’ place. What turns me off is when artists never even discuss this—admittedly for valid reasons because artists love passive-aggressively attacking other artists in general. What turns me off is when artists get comfortable faking it, make it, and start to drink their own Kool-Aid and never grow beyond the titillation of form and pretension.

What turns me off, basically, is my own art, when I think about it too much. I recognize I’m faking it and despair and all those nightmare voices play in a loop, reminding me I do not have what it takes. I’m triggered, I’m too fragile for feedback and criticism, and I know this about myself. It’s only in denial of those things I can do anything at all, including go on living. Because without art, my life has no meaning. No soul.

I have a lot to say that is not at all nice. And it’s bound up in trauma and hate and fear and grief and abuse and I long for an artistic and satisfying way to express it, so it’s both not so jarring for me and something I can share with others, without feeling as though I am abusing them with my compulsive desire to connect with others and share the stories of the traumas I have been through. The problem is that art itself is entangled in a web of shame and traumatic experiences of destructive feedback I cannot just scrape off like a healthy well-grounded well-supported or even well-educated person might. My art and my life are compartmentalized so I wouldn’t be vulnerable in an area where everyone is a critic.

Admittedly everyone is a critic regardless of whether it is art or my personal stories of pain I am sharing. It’s a defense mechanism I think destroys human connection, empathy, and a capacity for emotional resilience. Plus the critics are the most voracious, vocal landsharks that ever did walk; they must continually seek out people and things to criticize. I used to be one. I was raised with them. I had them in place of friends because I never learned how to filter them out. Now they are like slivers embedded so deep they will never emerge from my psyche.

I think validation is important because it’s so vital and rare for me. I don’t think it’s appropriate to blindly validate everything because not everything is valid. For instance, with a bully and a target, the bully’s feelings are not as important as the person they have abused. Their choices are not valid and it’s not appropriate to pressure the victim to listen to the bully’s rationalizations, forgive them, or consider them as important as the complaint of a person who has been genuinely harmed by a bully.

I’ve studied why bullies and abusers do what they do, and for most I have encountered and studied, their level of denial is even greater than those of addicts. They do not get interventions because they lash out when people attempt to curb their behaviors and hurt targets they can without repercussions. People who serially hurt other people, whether through narcissism or harassment or child abuse or any other form of cruelty and preying on those weaker, do not respond to a lot of common-sense approaches. Dr. Phil, on an interview on The Late Show With Stephen Colbert, talks about the impossibility of treating narcissists, because they learn the lingo, they learn to game the therapy system to their advantage, and powerfully resist change. Those who learn to turn off empathy are not eager to re-engage it. They are often rewarded far too much for their almost solipsistic selfish behavior.

So validation is not always the right response to everything. That’s all-or-nothing thinking. At the same time, validation is valued far too little, and understood even less. Those who are in the habit of invalidating what they do not like or agree with or ‘get’ are just as defensive and unlikely to change, in my experience, as those who serially bully others. Even though chronic invalidators are usually this way because they were bombarded with invalidation and fear of ‘other.’ When ‘uncomfortable’ equals ‘wrong’ there is a problem. However there is also a problem when people ignore discomfort and just keep enabling bad behavior.

But where is the art in this? Where is the soul? I can talk about what I’ve learned as a result of my experiences, but don’t yet have the capacity to tell the stories of what those experiences were in a way that satisfies me and feels okay to me. It’s too easy to get damaged in this journey. But for me, it’s the only risk worth taking anymore.

Art & Soul: “All things…”

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The things I find funniest are when people can laugh at themselves, and the above video is a brilliant example. It’s hard to cultivate in myself after being raised with shame-based parenting and having my weaknesses used as justification for hurting me, even though I know it would make me stronger—not weaker—to own and enjoy my own frak-ups.

I have loved how cross-training in different creative disciplines helps me grow in all of them. I realize new things about myself that are true not just in the form of creative expression I’m working with. For most of my life my only creative outlet was writing. When I took up hoopdancing it brought me into my body, into a more direct experiencing of things, helped me feel things physically and emotionally I often distanced myself from with words and intellect, brought new appreciation for dance and music. It opened a whole new world to me of performance art, of the experience of give and take with kind and generous audiences—although far from all performances featured that. This in turn also made me more appreciative of others’ performances, and realize that expressing my enjoyment during the performance can be valuable for a performer. (Also that performers can—but don’t always—make the absolute best audience members, particularly if it’s ROOTS Week. Oh my yes.)

I’ve been collaborating with my dearest friend on visual art. This is a new area for me. I contribute collage materials and she paints brilliantly, which makes me feel a lot less like a fake and a hack doing the least possible work at visual art to create something that, if I think too much about it, feels like literal trash and emotional insincerity. I realized that a lot of what I do creatively, I do in ways that try to protect myself, to safely deflect any criticism onto whoever took the pictures or created the graphics I’m using. Much like when I write, and quote other people obsessively, and in the past when I have felt a strong need to prove my words and opinions and experiences have validity by linking to things other people have wrote that express what I don’t feel safe to myself. Then if someone criticizes what I wrote, I have used the other person as a human creative shield—“they said it, not me.”

It’s an appealing but unfortunate habit, because internally I’ve also gotten to a point where I don’t even let myself have awareness of how I feel and what I think. I’m trying to dodge shame internally and externally, to dodge vulnerability.

Which isn’t always a bad thing. Brené Brown said something to the effect of ‘share your vulnerability with those who have earned the right to it,’ which is a crucial part of smart vulnerability that can be overlooked easily and was leading me to get awfully hurt when I first tried to cultivate the ‘power’ of vulnerability. Vulnerability is where shame flourishes as well as strength, and often presents a lot of risk if I’m revealing something about myself that people are in the habit of attacking and judging freely, or offering unsolicited and destructive advice, sometimes out of buried envy. Like art.

I learned this lesson painfully on YouTube, and learned how susceptible I am to being hurt. This isn’t a bad thing either. We feel things as a result of how others respond to us. No matter how many people want to insist that we ‘choose’ to feel a certain way, this is not the case. Emotions happen first, in a much older part of the brain than higher reasoning. We know this because of fMRIs and Bessel van der Kolk, who knows what the hell he’s talking about. We can choose what emotions we express, and we can choose to repress awareness of emotions, but I’ve seen where that leads—to sociopathic and narcissistic behaviors and habits of interacting with others, and having no problem hurting other people habitually, and blaming victims.

I didn’t want to be like that. I still don’t. But I also, in my intense desire to not turn into my abusers, went much too far the other way. A certain amount of not caring what other people think, or more accurately caring selectively and finding good supportive allies and doing right by them, is essential in order to be myself and to live, and especially to have the strength and courage to express myself in art and life.

Having defenses is important to being human, and so is knowing when and how to lower those defenses in order to grow and thrive. If my Wall is always up, I am bound for loneliness and bitterness, and likely to become abusive in my own ways.

The way I make visual art and write are valid choices, but I find myself wanting to widen my range and form a willingness to show up, make mistakes and learn from them in art. I may take in information in a variety of ways, through listening and watching and doing, but learning only happens if I allow myself to try new things (and keep failing all the way to success), and get feedback that helps me pinpoint things I can change.

That being said I only want to accept feedback that I’ve sought from people I respect who know what the hell they’re talking about. Throwing myself open for all feedback is akin to jumping into shark-infested waters with a bloody cut. The people most in a rush to give unsolicited feedback are often those who give the absolute worst and most self-serving kinds and often have no idea what the hell they’re talking about. Those who know the least often know it the loudest, and I’m absolutely guilty of doing this when I’m just starting out.

In my younger days I wrote a lot of stupidly pompous stuff about how to write. I was aping my abusers in telling other people what to do. I didn’t share this writing with others and I’m really glad I didn’t. I spent too much time ‘telling’ how to do something rather than doing it, and that was pure aggressive defensiveness on my part. Crucially, I wasn’t aware of this.

I believe most people engaging in abusive defensiveness block conscious awareness of what they’re doing, which makes it impossible to change. I think of this as ‘blindfolded drivers’ and a lot of people go through all their lives plowing their proverbial car into other people and causing a lot of damage and continually claiming ignorance and innocence. And persecution. It doesn’t fly with car insurance companies or the police and it sure doesn’t fly with me anymore. “I didn’t mean to” raises a red flag with me because so often it meant that the person I was dealing with was incapable of not doing destructive things repeatedly and incapable of changing their behaviors. I wasted too much time forgiving people who never earned or deserved it, and only used that forgiveness to go on hurting me. People can and do make mistakes, but after a while it begs the question, “What did you mean to do, and why aren’t you doing that? If you didn’t mean to run me over, why are you repeatedly doing so? Even though I have said repeatedly that I (a) don’t like it and (b) want you to stop?”

Doing what I mean to do requires that I take off the blindfold, although this also meant finding out I didn’t know how to drive, and it can be really tempting to put the denial back so I don’t see all the wrecks I’m causing. It’s very painful when awareness comes before change, and I know I’m doing something I don’t want to do or want to do better, but I haven’t yet learned how. Without awareness, though, change hasn’t been even remotely possible.

So I can appreciate why people go through their entire lives blindfolded with denial, especially if what they’re spending all their time and defenses denying is painful for them to see. These are not people I want in my life, for sure, but understanding the why of denial helps me understand others and identify when it’s happening and steer my car away from them. If someone is a raging ball of defensiveness, I understand that these people will be giant time and energy drains on me if I choose to engage more than I absolutely have to. Especially because I am often a raging ball of defensiveness when criticized or otherwise triggered.

It’s still frustrating. A lot of people are asleep at their own wheels in a lot of ways. It’s how bad attitudes, behaviors, and beliefs thrive in secret and drive a lot of what people aren’t aware of doing, including me. What I don’t own owns me, drives my choices and keeps me unaware that I’m even making choices, making those wrecks feel unavoidable and out of my control. But to be alive is to make choices, is to be behind the wheel. Pretending I’m not is not a smart way to live. Not everything is a choice and a lot of things are out of my control, which makes it even more important to me to figure out what I can choose.

This brings me back to art. Art, to me, is how I thrive, how I engage with my own feelings and thoughts and ideas and opinions and explore them. This rich inner landscape of mine I navigate and explore with art, and without art life isn’t worth living to me or in any way meaningful. It’s the lifeblood of my soul, both enjoying others’ art and making my own, no matter how unskilled or ‘fake’ I feel. I have so many disciplines but I am master of none, a ‘multi-disciplinary dilettante’ who’s a little crap at a lot of things. It’s easy for me to get overwhelmed and discouraged if I think too much about those shortcomings, but if I don’t make art at all I can’t possibly grow in any way that matters to me. (N’est pas de l’art. French: another thing I’m completely crap at.)

It’s essential for me to figure out what ways do matter to me, to be able to identify where I want to go, so someone else doesn’t metaphorically give me directions and tell me how to drive and wind up putting me in a wreck or somewhere I never wanted to go. I don’t want to base my decisions on the advice of those who don’t have to live with the result. Ideally I’d like a way to tune out their extremely loud knowing of the least and focus on driving my own car. That advice-giving is the least helpful and most draining to deal with. When I tell people to stop, I run into all those defenses and all that denial, and my patience evaporates instantly. Poof. Like water in the Nefud Desert.

Figuring out how I personally can cope with this has been one of the biggest challenges of my life. I really attract people in a rush to tell me what to do, especially by talking about what I’m doing. (Ceci n’est pas une invitation.) I haven’t yet hit on a strategy that I can successfully use to get them to shut up and go away. Sometimes I wish I could summon my inner bitch, but I’m not that great at consciously being a bitch (stellar at being one unconsciously; I always drive my Bitch Car blindfolded and leave no survivors), so it’s not a set of choices I’ve cultivated. I’m much better at avoidance, withdrawal, and ghosting. Which aren’t always bad things but also aren’t always effective, especially when someone is determined. Again, I really attract these unfortunate characters, and I’ve tried learning and changing things that help cut down on that, like taking self-defense classes and learning what in my body language signals submissiveness or that vulnerability to those who are determined to target it—and replacing it with more confident body language. Awareness plus change.

There are unavoidable things about me that make me a target—being female, being poor, being disabled, being asexual, being mentally ill. Being an artist, being open about hardships I’ve been through, writing this post itself, working through things in writing and then sharing that writing with others. It could be argued that those last things aren’t unavoidable and are choices I make, but they’re not ones I’m willing to live without. Living in silence and secret and without art are things that kill me slowly and make me miserable quickly.

But living aloud, and creating things, and being myself, is hard. Really frakking hard. (Although not as hard as people who struggle with oppressions where I have privilege, and it’s important for me to remind myself of that.) It’s hard even without my desire to grow and change and develop new skills, try new things and know I’m going to fail a lot more than succeed even by the most compassionate standards. Failure is probably the most important part of art for me, and certainly one of the largest for me, but so is defining what that means for myself and resisting the extremely aggressive insistence of others to define it for me. It’s hard enough living with my own standards without having to deal with those of others. Particularly those who don’t meet mine. And won’t keep their blindfolded driving away from my car. That takes at least 90% of my energy and effort and often inspires me to withdraw entirely from everyone, in order that I can keep going and keep making art.

Protecting my art, especially early on in making something or practicing things I’m not good at (everything), is essential to me, much like protecting babies from the myriad dangers the world presents them with. Having a judgment-free sandbox to play and develop in is one of the most important things I need for both making art and learning anything new. So is knowing when and how to find the feedback I need and want to grow where I want to grow, and figuring out where that is.

It’s like in therapy where therapists who are a good match for me can strike exactly the right balance between validation and change. I need absolute fraktons of the former and a very gentle and responsive touch with the latter—in pretty much all areas of life—and that can be infuriatingly hard to find. Asking for it doesn’t work if the other person isn’t conscious of the choices they’re making and rejects all attempts I make to wake them up. It’s made worse when I’m too triggered to articulate what’s happening and overcome my defensive reactions that lock us into a cycle of provocation and reaction, which happens the vast majority of the time. Then we’re both blindfolded and repeatedly ramming each other like we’re jousting instead of driving, and I’m a psychological wreck for weeks or months after these incidents. I have to be cut out of the twisted remains of my car by doing something like watching ‘Kingsman: The Secret Service.’ (Thank you, Amanda!)

Art at its best for me is a dialogue with myself and my world. Something that’s browbeaten into us writers from all quarters is how we have to think about our audience. But I really hate reading something where the writer is clearly writing for an audience as their primary goal. The writing I like best is when the writer is writing to fulfill their own burning needs, and doesn’t presume to try to control me, how I feel or what I think or do. When writers write at me, it comes off as manipulative, condescending, aggressive, demanding, and turns me right off. I want to read something that someone wrote for themselves, to tickle their own fancy, to give themselves the best thrills, and then shared without caring what I personally think or feel about it. I don’t want people to make art for me. Even if at its core the art is there to educate, especially about certain issues that the artist really cares about, and does require a lot of thought about making the information accessible to those without the knowledge and expertise of the artist, I still want the artist to be responding to a deep soul-level desire to make that art. The art that is there because the artist clearly could not live without it is my favorite kind of art. The art that says what an artist wants so say, not what they think I want to hear. In art people can tell a lot of otherwise unbearable truths wrapped in an appealing chocolatey shell. Yum, art!

To me, that kind of art has built-in success. When I write something for me, when I make something for me, when I do something for myself, then doing it will be guaranteed to please one person, even if it doesn’t come out great (and it usually doesn’t). If I were to write for others that would be giving others the power to determine whether what I wrote was a success. And what other people like is a matter of taste. I started writing when I was four for one simple reason: I was frustrated that there were stories I wanted to read that I couldn’t find. The only way I was going to get to read them was if I wrote them myself. This is why when people try to tell me how to write what I write, I want to tell them, “Then you do it your way and let me do it mine. Ce n’est pas ta voiture. …Yes, I know, my French is awful and I should absolutely stop.”

It really sucks that so many people have aggressively judged and criticized what I wrote that I have withdrawn behind others’ words, and no longer share my stories and almost never write them anymore. It took away what was really important to me about writing and made it about other people—and not just any people, but the whiniest, most impossible to please people on the planet. People who mistake their opinions for facts (which I also do, but not all of my facts are opinions when others don’t like them) and behave as though everything is made specifically for them, as though it’s all right to send back with demands to remake it better the food their hosts serve them. People who don’t understand why they are shown the door and never invited back. They will never be satisfied and won’t do it themselves, and it isn’t my job to satisfy them.

I wish I could tell them that. It’s aggravating to get my own defensiveness triggered by critics and feel trapped by it, blindfolded by it, hearing the sounds of the slow-motion wreck I’m in and not know how to stop it and get out of it.

The moral of the story is: shame-based parenting sucks, y’all.

Also, I’m not wanting advice. I wanted to engage with these things and work through them in writing, and while I may not have the answers, I’ve made a place for them to arise from myself. I’ve opened a door inside myself to see what was shut up in there. This writing, however objectively bad or long-winded or useless to anyone else, has done what I wanted it to do, and in that sense it’s a success. I’m letting you overhear my conversation with myself, because I have loved when other writers have done that for me. So much of others’ processing of their own stuff, shared so generously, inspired me to do those things myself. And with that courageous generosity what makes sense to me is to pass it on, allow others the choice to read or ignore if they want without demanding a response.

It’s the give-and-take of my lifelong dance with art, which is a dance with myself. I am the partner who is always ready when I am, who doesn’t care how we dance or how well we dance, only that we dance exactly the way we want to. I danced damn hard to get here, I have a right to dance here—in my car—and I’m damn well gonna dance.

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