Hi friends! I hope to get back to writing regular articles soon, but in the meantime I have some events coming up that you might be interested in!
TONIGHT we have our Polyamory Panel Series session on Disability and Polyamory. This will be a fishbowl discussion to explore the dynamics of living a polyamorous life as a disabled person. From Covid, to boundaries and needs outside of the pandemic, to marriage equality, this topic is sure to have a lot of meat to chew on! Tonight, Monday April 18th at 7-8:30pm EST. Zoom link here! *this will be recorded and livestreamed*
Sunday April 24th at 2-5pm EST we have Queer^ Grief: Honoring the Beauty of Letting Go, Jam & Open Mic!
Queer^ grief is the grief we hold for having to live in a world that does not always accept, respect, or celebrate us for who we are as members of the LGBTQIA+ community. The caret (^) is for those who are additionally queer because of any other marginalized identity that is at odds with normative culture (race/ethnicity, neurodivergence, ability status, etc.).
This is a two-part event. The first 45 min will be a brave space for us to name the pain we have been carrying and find solace in one another as we share in breakout rooms. After a 15 minute break, we will be welcomed back to the space with a grounding exercise. An open format for sharing art and creative expression will follow. People will be able to share whatever form of expression their grief has produced, or that has helped them process their grief (painting/drawing, music, poetry, short story, even comedy, etc.). In this way, not only will we be able to connect over grief and set resilience down, but also be able to connect over the beauty that is free expression, that comes from that pain. More details and registration here!
*this event is free with a suggested donation of $5-35 for either segment, or $10-50 for both; registration required*
Image description: two images are divided by a white border. On the left is an image of Jae at their high school graduation. They are wearing a floral, knee length dress with tank-top sleeps. A medal of honor hangs from their neck. They have shoulder length blonde hair, and they are smiling with a blue graduation cap atop their head. The image on the right is of Jae from this past year. They are wearing an opened black vest with no shirt underneath, black dress pants, and a black and silver medallion. Their hair is bleach blonde and cut so it’s shorter on top and shaved on the sides. They hold a smirk on their face and a mug in their right hand that reads: World’s Greatest Me.
cw: mentions su*c*de and abusive relationships
There’s a trend going around where people are posting a picture of themselves from 2012 next to a picture of themselves from this year, 2022. So, I thought it’d be a fun reflection if I did this challenge today, on my birthday.
On the left I see a child in a graduation cap. I see someone who doesn’t know who she is and is tired of faking happy all the time. Sure, I had moments when I was truly happy. But nothing seemed to fit right. Not my clothes, not my body, not my friends, not my education, not my family, nothing. In fact the only things that made sense were music, nature, and animals because I truly didn’t know myself. Things would make sense one moment, and then come crashing down the next. I often wanted to unalive myself, even though I was so excited to start a new adventure off in Michigan for college. But college brought more strife, and I couldn’t make sense of why nothing was easy. Not one thing. Everything took so much effort; I was sick all the time, people abandoned me or stabbed me in the back, work was hell, classes were hell. Again, not saying that there weren’t good moments. But overall I was a lost child in a big, scary world, without much healthy guidance, self-awareness, or boundaries. That girl there had convictions, yes, but was constantly fawning to appease those around her and making foolish decisions. She got stuck in abusive relationship after abusive relationship. She got wrapped up in who people were telling her to be, instead of unapologetically existing in her full authenticity and finding the people who empower her to do just that.
That girl on the left had a lot of self-discovery to do, and a lot of self-compassion to develop. And then 10 years passed us by.
When I look to the right, I see a human who confidently embraces all that they are. I see someone who sees the possibilities life has to offer and isn’t afraid to reach out and receive what the universe is bringing to them. I see someone who knows they are inherently the world’s greatest “them” because they are the only one who can be them. I see someone who values their unique voice, quirks and all, and values when others share theirs. I see someone who knows life is a journey of growth and constant evolution, where it’s okay to make mistakes so long as you stay accountable and choose to do better.
I am grateful for the challenges and hardships I’ve had to endure these past 10 years to get to where I am now. Without them, I wouldn’t be this compassionate for myself and others. I wouldn’t pursue my passions with the fervor that I have now. I wouldn’t be the fierce advocate that I am now. I wouldn’t have the most amazing queer, dance, disabled, kink, polyamorous, and neurodivergent communities that I have now. I wouldn’t be in the healthy, stable, life-giving relationships that I’m in now.
Finally, I know myself. I know that I am transmasc nonbinary, pansexual, polyamorous, autistic, an ADHDer, disabled, and spiritual without religion. Finally I know, accept, and love these things about myself. No, I treasure these things. And finally I know that it is no one’s right or in anyone’s power to take the knowledge of who I am from me, or cover it up with their own toxicity. These past 10 years have taught me that knowing and loving myself is just as important, if not more important, than gracefully receiving and reciprocating love from others.
So here’s to growth, love, and the inclusive, equitable, compassion-first future ahead of us. If the last decade was setting the stage, I am so ready to take to that stage now and play my part in creating this future dream. Thanks for being here for the show and playing your own part too. 💜🌈💜
To everyone who has believed in me and seen me through these last 10 years, thank you, from the bottom of my heart. I truly would not be here in the form that I am now without your patience, compassion, and support. It really does take a village…
I am shamelessly posting my gofundme here for continued growth through community support. Thank you 💜
Featured image says: Disability isn’t a bad word. Credit to neurowonderful.
This barely scratches the surface of what I experience because of this disease, but here’s a taste:
This is my life with Hypermobile Ehlers-Danlos Syndrome, with chronic illness. Bad things happen out of the blue, and I just have to carry on with the pain. But sometimes it’s physically impossible to do so, like it was last night.
I’m up today, committed to doing work so that I may one day be self-sufficient and financially independent, but being confronted with things like last night make it hard to believe that independent life is even possible. I’m on day three of limited mobility and excruciating pain that won’t be touched by western medicine.
I take my pills dutifully, and they do help day to day. But not for days like these. I’ve taught myself to cope without crying, because crying always makes it worse. Sometimes I can’t hold it in though, and while that release is important, it always has bad physically ramifications. I’ve tried everything I can think of: heat, ice, rest, stretching, over the counter meds, prescribed meds. Nothing touches this pain, this restriction. It literally feels like my lungs are being held prisoner in my own body. I can’t move certain ways or a sharp pain will stab me like a knife. I just want it to stop.
You’re not even seeing the full extent of pain I’m in because even in this video I am masking it. The pain I’m in day to day, and then in these kinds of moments, is genuinely unbelievable if you haven’t experienced it yourself. But I’m asking you to suspend your reality a moment and believe that what myself and many other disabled folk go through, is real. I have 20+ years of conditioning to maintain basic functioning, which you see in this video. It took 20+ years to learn to not cry, to not shout in rage, to honor my body through living with the pain.
Somedays I am capable of exercising, working all day, and engaging in social activities. Some days I can do those things but with limited engagement. And then others I literally cannot do anything. I’ll need help getting from bed to the bathroom. I can’t wash a dirty dish. I can’t even use my phone or laptop because my upper body is too fatigued and in pain. And then some days it feels like I literally can’t breathe.
I am always *me* in any of these circumstances. If you can believe that I am happy and doing well when you see me as such, why does that belief end as soon as I show you what’s underneath?
– my thoughts on being gaslit by friends, family, and medical professionals
Living like this is exhausting. I’ve made so much progress since getting diagnosed correctly last year. In fact, I’ve made so much progress that sometimes I feel like a normal human who can do normal things. And then days like these last three slap me in the face and remind me that I am in fact not normal. The back and forth gives me horrible mental whiplash.
My disease isn’t who I am, no. But it does limit the “who” when it comes to what I physically can and cannot do a lot of the time. It’s a lot of mental gymnastics to get me feeling like I can accomplish anything, but I rebound each time because I know I have a lot to offer this world.
All this being said, disability is not a bad word. I am disabled, and that brings new perspective and compassion for others. So please, when you’re out there in the world judging people by what they can and cannot do, consider that those people are going through things you can’t even imagine and have some compassion (this isn’t just for the disabled either). Consider circumstances before you judge, and even in your judgment, hold some compassion. If you’re an employer, see how you can make your working environment more accommodating. Same for educators, public officers, medical professionals–anyone with power to make a difference. How can we make our society beneficial for all? TALK with the people affected! See their needs and meet them where they are. BELIEVE their lived experience. No more gaslighting!
And if you struggle with “invisible” or “silent” illness, I see you. I love you. You are not alone.
Caption for the image above: The many faces of Dissociation by @what.is.mental.illness; Derealization, feeling disconnected from the world around you; Identity Confusion, inner struggle about one’s sense of self/identity; Amnesia, memory loss often described as “losing time”; Depersonalization, feeling disconnected from your own body, mind or self; Identity alteration, sense of acting like a different person some of the time.
What do you do when your soul detaches from your body, and you lose touch with reality? The following is my interpretation of what I call “nihilism attacks,” and how I combat them.
To start, this is (for me) a form of dissociation. It is visceral at the base level, as in it’s impossible to stop once onset takes place, just like my autistic meltdowns. But because I continue to grasp meta awareness throughout, I can’t say it isn’t partly intellectual still.
It goes like this:
Wave after wave of information floods my consciousness to the point of overwhelm. In the case of my nihilism attacks, and not regular dissociation, this overwhelm is always brought on by compounding thoughts about world suffering on all levels—suffering in my own personal life, to suffering external to the identities I hold (this includes friends and strangers alike), to suffering the Earth is facing everyday as global warming increases. There is no order to it, but each thought compounds the others.
Then I will feel a shift in my chest and gut—that feeling when you just barely avoid a crash on the road—and my mind will take on a lucid dreaming effect. That’s really the only way I can describe it. It’s like lucid dreaming but while awake: The shift increases until at last my mind perceives my soul to be 6 inches out of my body. Or in these particular episodes, it’s 6 inches within, too condensed, watching my life play out as if I were at the movie theater taking in a feature film.
I can make decisions and witness my body doing them, but it doesn’t feel like I’m the one calling the shots or experiencing the consequences. I can look at my hands and put pressure on different parts of my body, but they don’t look or feel like mine. I detach from my humanity and reality.
The attack that inspired this post consisted of me rocking back and forth, hugging my knees, and wailing without consent—all very common in this next step of an attack. Literally my body will need to shriek and wail and cry to relieve some of the stress it’s under, and it won’t let me say no. I’m learning that even though this kind of wailing does stress my body out physically, and I’ve gotten sick from it in the past, it is necessary to allow this energy to come up and out. This is where meta awareness comes in.
Before meta awareness is helpful, it harms me. This stage is the ugliest of all, even though I’m not a pretty crier. It’s within this stage of attack that my mind has a conversation with itself about the meaning of life, how everything leads to suffering because the world is suffering, and how I should just give up. It is in this stage where not only am I detached from my humanity because I’m detached from my body, but I genuinely feel like I’m in the wrong place/plane in time. I feel like I’m not human at all, only a consciousness held captive within a human avatar. In this awareness, I am very attached to the idea that the world is a simulation strictly designed to torture us until we die, just so we can come back in a different body and be tortured again.
Even though this is a scary thought, and it does compel me to consider unaliving myself for a moment, it’s also my saving grace. Because if this nihilistic attack is going to make me consider that all of everything is pointless, that this is all just a simulation that repeats itself, then I might as well continue forward with that knowledge and make this reality one I can be proud of. If there is so much suffering, then why not become a conduit to less suffering while I’m here, to the best of my abilities?
Over time, with practice, my meta awareness has allowed me to:
hold space for the wailing, but also give soothing reminders to my system that I need to stop or it will hurt me more
understand that even if it’s all “fake,” I have autonomy and get to decide how I show up as who I am to any circumstance (i.e. I no longer solely exist in a reactionary state)
understand that who I am is love, compassion, gentleness, gratitude, joy, truth, and a whole list of qualities such as these (I believe everyone has the potential to see themselves and others in this way)
embolden my compassion and empathy, to use as a foundational tool to continue forward
All is not lost, because WE decide it so.
Now this isn’t to say that depression isn’t real, or that people who do unalive themselves are selfish, weak, cowards, failures, etc. No. In my life coach training, we use this particular definition of vulnerability: “To be vulnerable is to allow the winds of life to blow freely over your soul.” And sometimes people get swept up in those winds, and lose themselves. How can we fault them for wanting an out? We can’t. Period. The whole point is that they decided for themselves what the next best step was for them, in the time/circumstances they found themselves in. It is not selfish to be so consumed by circumstances and brain chemistry that you find a way to quiet the winds permanently. Maybe if we had better healthcare and a more compassionate, understanding, and accommodating society, less people would unalive themselves. But right now these are the circumstances we have, and I refuse to blame anyone for doing what they thought best for themselves. (And I am speaking out of my own grief of losing friends this way, as well as from my own dark places where I’ve considered unaliving myself more than a few times.) Blame the failing infrastructure? Yes. Blame the individual? No.
However, it’s important to note the end of the quote I just used: “To be vulnerable is to allow the winds of life to blow freely over your soul. To let life in, on life’s own terms. To be vulnerable means you realize there is nothing to protect.” This is what encourages me to push forward. If there’s nothing to protect, why not give life your all and say yes to the future while you’re already here? I choose to flip that nihilism on its head. I don’t always get it right, but practicing the notion of reverse nihilism truly does inspire me to continue living. I choose to continue the work I’ve set out to do while I’m a physical part of this timeline, even if the physical form I have can be a living hell day to day.
Quick aside: I say reverse nihilism instead of optimism because I don’t approach this concept from an optimistic perspective; optimism is merely a side effect of flipping nihilism on its head. I am not optimistic because my attitude reflects “a belief or hope that the outcome of some specific endeavor, or outcomes in general, will be positive, favorable, and desirable” (Wiki). Rather my attitude simply reflects a commitment to seeing things through, whether perceived to be good or bad, in spite of my nihilism.
So how do I come back to Earth? My attacks can last anywhere from 3 minutes, to 3 hours or longer. There’s really no way to tell how long they’ll be, which is why practicing grounding techniques outside of crisis moments is so vital. You have to be prepared.
The attack that elicited this article from me lasted only 20-ish minutes, which is pretty damn good for me. Normally they’re much longer (I think I’ve only had 3-5 min attacks twice out of many). For this one, my defense strategy was this:
let my body wail a bit, but hold onto meta awareness
push out thoughts of suffering by redirecting my attention to what’s around me; things I can hear, see, smell, and touch (I save tasting for the end)
GET OUTSIDE and BREATHE; focusing on breath is HUGE (highly recommend reading You Are Here: Discovering the Magic of the Present Moment by Zen monk, author, and meditation master, Thich Nhat Hanh)
squish grass between my toes and move my body to dance with the wind
pet the dog, play fetch with her
stay hydrated and eat something comforting (avocado toast for me that day)
gentle aftercare (cartoons and stuffy cuddles with a weighted blanket)
By the time I was consuming avocado toast (yes I am a millennial, and no, $2.50 for a comforting meal is not why I’m in poverty), I had reconnected to my body enough to actually enjoy what I was tasting. The taste is what cements me back into my body completely—the final push.
So, if you find yourself having a similar attack, or dissociating in general, know that 1) you are not alone and 2) there are ways you can help yourself find your way back. Here’s a great list of more grounding and soothing techniques, as well as some tips to get the most out of them. And here is a quick article about dissociation if you’re looking for more information.
If you (or someone you know) are in crisis and need help, please call a hotline to talk with someone.