I say I’m ‘fine’ or ‘hanging in there.’ …Only by a thread, I don’t add.
Nights are the worst.
Nights used to be my most creative time. When my husband was alive we’d watch movies or play games together. I'd stay up late writing and reading.
Nights are also when the most traumatic things happened to me. When people would cross those lines and do unspeakable, unforgivable things.
Nights are when I feel most keenly my loss of innocence, of pleasure, of enjoyment of everything, of capacity to fall asleep and feel safe, the loss of a home where I feel safe and okay, the loss of those who loved me as I was, the loss of my capacity to imagine and tell myself stories that made me feel better, the loss of altered states I could put myself in through imagination and stories and music and even drugs—which I don’t miss, but I miss feeling better.
Nights are when I feel, and this hits harder every day, trapped, a failure to get out of this life, and the fear that I will never get away from this black hole of a hell. I look out the window and I see endless trees, the prison of my childhood, where I was dragged away from friends and isolated out in the woods, so far away from anyone or anything. Even before the abuse ramped up I knew moving out into the woods didn’t feel good. No one ever asked me, because by that point my feelings already didn’t matter.
These days, for a while I can hold it together during the day. I can distract myself with writing, blogging, hoopwalking, reading. Then it’s like the stress and terror gets to be too much as the day wears on. Eventually pain is filling the world from edge to edge and there’s no amount of venting or expressing that can get it out. Because it’s being continually fed by my surroundings, my feelings of captivity. Being restrained, blocked in, isolated, trapped, held down, locked away—my childhood nightmares, my adult traumas, the thing I fear and hate most. There’s no one who can get me out of here. I’m doing everything I can, have done everything I can, and it’s not enough to get out. Powerlessness. Helplessness.
Dream of Nomadnes
Part of me wants a little Airstream trailer or a conversion van, some mobile living space, so that I’ll never ever be trapped in a lease with neighbors I don’t feel safe with. But it seems unrealistic. Disabled people who aren’t supported by family members often wind up still being impoverished. It costs a lot to buy even used trailers. I don’t know that my hybrid Camry could tow one. I would still have the financial responsibilities of repairing anything that broke and some camping or utilities fees wherever I was that would be pretty steep.
Living as a nomad feels like it would be a strong way to give expression to the trapped me that wants to run and run and run and run and get away from here and have the opposite experience of being tied down (sometimes actually literally tied down, like with restraints) for a good long while until I’ve finally spent myself of all the horrors of years of being trapped. Or maybe the rest of my life, I don’t know/care. It’s just that even in a best case scenario where I win disability benefits, I don’t know that I could afford to nomad.
Here are some other fears.
I’m so terrified I can’t even begin to search for the answers (for fear of what I might find out), which is what I usually do when I get afraid. If by some miracle I won Social Security Disability Income I don’t know how much it would be. I don’t know if that would reduce or discontinue my food stamps or state-funded mental health care. I’m told that I would automatically qualify for Medicaid, but I really don’t trust these systems. I fear that all my income would be going to food and therapy and I couldn’t even get out of here, I couldn’t even have a home.
I don’t know if I got SSDI if it would be enough to live on or if I would still be losing money every month. I’m told that if SSDI income isn’t enough for me to live in I may also qualify for Supplemental Security Income, but again, I don’t know if I can trust anything I hear. There are so many disabled people living in poverty. As far as I know there’s no reliable, trustworthy way to educate myself about what the reality would be right now since I’m told the amount of SSDI varies. Which makes me nuts. Poverty makes me more nuts than I was to begin with!
It’s not just this RV and this neighborhood, I want to get out of this state and this latitude. I want and need warmer climates for my health. Winters make me almost nonfunctional with the pain of cold. I want to get away from all the traumatic memories and the fears of ever seeing those people again, and get to a place that has better support for my activism and disability. In better times I’ve browsed online for temperature averages and disabled artist communities and other supportive and appealing aspects of an alternative location.
But I don’t know that even in a best-case scenario I would be able to afford to relocate, even to something like section 8 housing in Tampa, Orlando, or Austin. The waiting list for that housing here (that I’ve just been put on) in Raleigh is 3-8 years.
Trapped in other people’s houses
Twice I’ve gone to stay with more economically privileged people in their houses. And twice it has become a special, humiliating, abusive, boundary-dissolving nightmare of its own. I’m loath to ever try that again, particularly when they have total financial power over me and I have no power at all in the relationship to enforce my boundaries except to leave. It recreated a lot of scenes from my childhood I never want to revisit.
Five more days to ROOTS Week
At least I do have the respite of the subsidy I got to attend ROOTS Week and spend four liberating days in Kassi-heaven, among artists and activists, filled with life and passion and inspiration, enflamed with courage and belief that there are people who can help create change.
But when it’s over I will come back here, so far away from any kind of atmosphere like that, in which I’d love to live forever.
And then it will be ticking down the days to the imminent hearing on which my survival hangs.
Get me out of here
I’m afraid that I won’t get out of here. No one can reassure me that I will; there’s no guarantee even with the best possible outcome. I worry that even if I somehow get the means to get out of here that I’ve been so crushed and crippled by this lengthy stuckness and a history of captivity that I will be unable to logistically and physically get out of here. It’s an extremely unlikely future, requiring much money and arranging a place to go, which is not guaranteed by any means.
This personal hell has been getting more and more intolerable to live in by the day. There is no medication or coping skill that can overcome or keep me distracted from the AAAAAAAAAAAAAAAAAAAAA that is all around me. This is Trigger Hell. Every day I live in fear of losing foodstamps or something happening to my car or computer or the RV, or some other financial disaster that is greater than the money I have left to live on that dwindles away.
No little band-aid of an activity, DBT coping skill, pill, expression of my feelings, or even the blessed four days at ROOTS week will solve this problematic situation. Not even a companion animal would be enough on its own anymore. Nor will any income that is insufficient to get me out of here for good.
Even staying shut up in my nest I made isn’t enough anymore. I can’t shut out the overwhelming reality that steamrolls over me every single day. It hurts to be stuck here. It hurts so bad I can’t take it anymore. I’ve taken way too many words to get to the core truth which is that: it hurts so bad I can’t take it anymore.
And I have no better choices. I have nowhere better to go. It would take a miracle, and my life has been long on nightmares and short on miracles.
What do I need?
I need a guaranteed place to live, alone, somewhere warmer, safe, with services I need all reasonable drives from home. I need enough income to cover this and my basic needs (and a buffer for emergencies would be nice). I need all this to not depend on another person or on something I’m not able to do or sustain (like a job).
Well, if wishes were fishes, beggars would ride.
Through the Orange County Rape Crisis Center I’ve gotten involved in two programs to use visual art to express, specifically related to rape and other forms of sexual violence, and survivorship. And one’s self, which can be violated and damaged by trauma.
The first was a one-day map-making workshop, partnered with the excellent organization Hidden Voices. I only wish this one could have gone on longer and that I could have had days to look at the map art books they had there.
To paraphrase Steve Jobs from his 2005 Standford commencement address, relevance appears only in retrospect. Wherever I am at any given time, the shape of my story changes based on where I am and what I'm learning. What is true may only be true for right now, and whatever I learn and experience tomorrow can make a profound switch in the story. In Terry Pratchett’s book ‘The Truth,’ the editor of the Discworld’s first newspaper is dismayed to learn that his painstaking investigative journalism and word work is pulped each day to make the next day’s toilet paper. And that the press, the hungry press, must always be fed, for news is only news when it’s new.
In an ongoing arts-based support group we’re doing new pieces continually. I’ve learned two vital things already. The first I already knew, but was driven home for me once more: the best, most galvanizing and inspiring way for me to learn (and also create) is to be among others who are doing the same thing, without instruction, just doing it.
The second thing was that my favorite things I create are revelatory, transformative, or both. And I wonder if it can be one without the other; I as an artist am changed by the act of looking back at what I created.
We did masks, the outside showing what we looked like to the world and the inside expressing our own inner worlds. A very powerful concept, one Hidden Voices also did a version of with a show using cigar boxes instead of masks. I realized the brilliance of the boxes because it tapped humans innate curiosity drive, and to physically participate in a piece of art, in the revealing of the secret, would make it more personal to the observer, would make it touch much deeper.
Depicting my inside didn’t hold much surprises. I spend most of my time in my rich inner world, it’s free, it’s an excessively tended and fed garden, and it’s where I’ve escaped to all my life.
Depicting my outside I did first, wanting to get the hard part out of the way. I’ve had a lot of things said to me
about my appearance and my outside. And the only good things later turned out to be a worm on a hook to lure me, but that’s another post for another time. Since both pride and self-effacing humor (with a strong presence of self-esteem) are goals of mine I also wanted to really start to acknowledge and own those insecurities. Yet when I looked at it again later a different part of it leaped out of me and I nearly burst into tears right there. Because I hadn’t realized it until I saw it.
Over my mouth I’d stuck the words ‘Thank You.’
I, like many survivors of chronic abuse, suffered from apologitis—apologizing for everything, including things that aren’t my fault, apologizing merely for existing and taking up space.
Looking back I realized that though I’d made a concerted effort to apologize less, I’d been thanking people in really over-the-top compulsive and excessive ways. Even for doing nothing. Essentially, for not hurting me, which I unconsciously equated with being a herculean feat few could manage. I would thank people for stopping hurting me, too, and for doing basic decent human things. I would thank people, bowing and scraping, for the least crumbs, far less than I wanted and even needed. And the more impoverished and disabled (and subsequently deprived of basic needs and dignity) I became, the more intense this idiot gratitude became.
And it hurt, oh it hurt. Because there’s so much pressure to be grateful, to cultivate an attitude of gratitude, especially on marginalized people, and especially when powerful people make the least concessions. And when I over-the-top thank people, inside I feel small, helpless, less-than, and undeserving. That’s a lot to process.
In the first stages, learning any new language is going to be clumsy and piecemeal. Especially when the subject matter is deep and intense, as it is when discussing these subjects I’ve long been silenced and self-silenced on. I’m okay with messy. I’m okay with not being satisfied yet with my efforts, and sharing them anyway. Dissatisfaction keeps me hungry to keep doing it. Dissatisfaction inspires my activism and my art. And the only person I ever want to compete with, to compare myself with, is who I was before.
Living with my disabilities makes even this hard, because I have my good days and bad days, and as I’m struggling to get my basic needs met my situation often worsens in many ways I can’t do anything about. Sometimes I feel like I’m barely breathing, lest I break something that’s vital but I can’t afford to replace.
And some days I exhale fully and breathe into the process of expression. Those are the best days. No matter what comes out.
I give you permission to breathe out—if you need it. If you want it. If it feels good. It’s yours. Always.
The article I wrote for Alternate ROOTS on disability, poverty, and the arts for their monthly Field News is now up. Lots of personal experience and analysis, and some pretty pictures as well. Share and enjoy!
Following yesterday’s video about the benefits of making these videos for me, a shortened look at the back end: my editing process. And my cursing. A little. Battlestar Galactica.
‘The Shallows: What the Internet is Doing to Our Brains’ by Nicholas Carr
Time for a more lighthearted (sort of) video on my idiosyncratic coping, and how much doing these things is helping me get through this difficult time.
Kat Blaque's excellent video 'DON'T READ THE COMMENTS'
Franchesca Ramsey & the MTV Decoded Team did this 'Social Justice Warrior Training' skit that reminded me of my idea for the "No"jo (and I would so go to this if it were real!)
Nonviolent Communication (NVC) can hurt people
Nonviolent Communication can be emotionally violent
Some others share their experiences, which I have also had, where this form of assertiveness communication so common across so many disciplines fails utterly and the person trying so hard can get hurt even worse
I have a lot more to say on the subject of communication and abuse in future posts and videos…
When my fibromyalgia flares and hurts most, it covers my entire back and my limbs, especially the tops of my arms and the entirety of my legs. For some reason the front of my torso is less affected. Why?
Who the hell knows.
All I know is that it hurts and only South Korea is beginning in research to biopsy the skin of fibromyalgia sufferers to prove that our Schwann cells and spinal fluid communications re: pain are wonky.
Yeah, science. You’re lagging.
Food Privilege Deniers Challenge (REALLY eye-opening about the realities of eating while poor)
This video covers what Complex PTSD is, how it differs from PTSD, particular focus on cases resulting from child abuse, my own experiences, & what I’ve learned.
I put a lot of my heart into this lengthy video, and in thinking of what I would say I knew what I wished someone had told me twelve years ago when I was diagnosed with PTSD, or perhaps even longer ago—to spare me the resulting confusion of so many years of ineffective treatment, shame, confusion, and suffering.
I can’t change the past and enlighten the girl or woman I once was, but I can share what I know. I know that unfortunately there are so many more suffering out there who need more understanding than is widely known about what they’re going through. This needs to be so much more widely known, not just for them but for all of us who live in a world with survivors of long-term trauma.
Judith Hermann’s seminal book ‘Trauma and Recovery’
Pete Walker’s EXCELLENT book ‘Complex PTSD’
Bessel Van Der Kolk’s ‘The Body Keeps the Score’
bell hooks’s book ‘Rock My Soul: Black People and Self-Esteem’
CNN Money's ‘Life on $7.50 an hour’ video
…There have been a lot of downer ‘Reality Checks’ lately! It’s nearly time for some more videos on my idiosyncratic coping methods.
Some of my experiences of living invisibly homeless, why where I live is the best of bad options, and how bad experiences with relying on others have left me determined to never do so again.