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[Featured image: pictured is a slice of toasted white bread on a white background. Credit to Adobe Stockphotos]

Here’s to never giving up 🥂

Cw: mental and physical health (mentions su*c*de)

I was such a ham as a kid 😂

Pictured above: a tiny Jaesic plays in the Autumn leaves while wearing a bright red coat, they pose in front of carved pumpkins with their brother, they pose in a yellow coat and red hat with a huge grin (and some missing front teeth), and again in the yellow coat with their dog Rocket.

I look at these photos and truly see a happy kid. Well, maybe not in my dedication photo (ain’t that foreshadowing or what 🥲😂). But yes, a happy kid. But as I got older, something changed. You can kind of see it in the solo dancer photo, or me with a toy horse on a stick, at the end of this little gallery. The light started to dim from behind my eyes. Chronic pain, misunderstanding, and conformity really took a toll on me.

I’ve been sick with unexplainable physical symptoms since I was 4 years old, compounded by regular colds and flus. I’ve had mono BADLY twice, the worst of it as a freshman in college. When you are not physically well most days of your life, you are not mentally well either. That shit adds up, and depression/anxiety settles in. And this is only a fraction of what changed.

I was bullied, left out, and abandoned for being different more times than I can remember. Not knowing how I was neurodivergent significantly impacted how I developed self-esteem, efficacy, and relationships. I often invested my time in the wrong people (hell, I’m just learning how to not do that now). And I often failed the good relationships I did have because I didn’t have the tools to properly self-regulate and effectively communicate. I learned to people please and spread myself so thin in order to attempt at measuring up to the rest. The result? Repeat burnout, illness, suicidality, and years of abusive relationships. I’ve been trying to define myself by others’ standards and desires instead of looking inward to my core and shedding anything that isn’t ME.

Pictured above: Jaesic is in a dance troupe wearing a tie-dye blue and gold leotard, below they are in a red dress and tights, and to the right they are in a cowboy get-up with a toy horse on a stick named Oreo (it is black and white with a red bridle).

Well, no more. Finally, I see myself for who I am: a being of overflowing love, joy, and light. I no longer am ashamed of my joy or love and how I express it (or, at least most of the time; I’m getting better). I no longer waste my energy on things and people who do not symbiotically impact my life. I pursue my passions and care so deeply for the world, and I have power to make a difference.

My parents raised a little girl. That little girl grew into a severely repressed, depressed, scared young woman who let life and the people in it take advantage of her. Today I know that little girl is still a part of me, and that young woman helped me find how I am so much more now. I get to love her and carry her through to see just how expansive we can be as a fluid creature who never gave up on learning and loving. I know she is looking at me in awe, and maybe a little fear (lol). But how beautiful it is to be able to coalesce all parts of myself after working hard at healing my trauma, so that I can live a truly purposefully authentic life! I am so lucky. I almost didn’t make it. And now I know my life’s purpose is to support others to find themselves and heal too. We all possess the power to make a difference. Each time we realize that, the world has that much a better chance to become even more compassionate and inclusive for us all.

Thank you for being a part of my journey here 💜✨️🌈

Because my brain won’t let go of paranoia:

If you read things like this that I write and take offense because you considered us good friends growing up, these writings are NOT about you. I speak in generalizations about my life because it is easiest when describing the effect OTHER people had on me. I know I’ve had good relationships amongst the bad. But again, those relationships were few and far between, and it’s taken a lot of inner work to find people who will continuously choose me without taking advantage of me. So, know that you are loved, and I very much value whatever kind of relationship we’ve had over the years 🙌💜

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I really want to be mad at today. I really do. But I’m learning to radically accept what is, and keep moving forward with love.

To recap:

1) I started my day with a less fruitful (than usual) bonus hour of Lyft, which I woke up early for after falling asleep super late (and I only had restless nightmares during sleep).

2) I then shipped over to my mom’s place to take care of her dog so the poor thing wouldn’t have to be in the crate all day. Except my mom didn’t clear a place at the table like she said she would. I was supposed to work at the house while watching the dog, but I couldn’t because I know from experience you DO NOT MOVE my mother’s things without her being present. The whole table was filled to the brim, just like every countertop in the house 🙃

So I pivot and focus on getting Bella a walk. But I can’t find her normal collar and harness anywhere. I call Mom, and she insists the bag with the things is somewhere around. Can’t find it. I get increasingly flustered and frustrated, all while the damn fire alarm’s dead battery keeps making it chirp at odd intervals.

I try taking the alarm down, but it won’t dislodge from the wall. So there’s noise and mess everywhere, I can’t find the dog’s things, and my body is having a hard time coping with being in the house for a multitude of reasons (yay trauma).

3) BAM meltdown. My body is frozen in the front hall, just standing there, wailing. High pitched wails come out of me that I can’t control, my eyes pouring out tears. It’s like I’m there, rattling inside my meatsuit just behind my eyes, witnessing my body do these things, and I have no attachment to them or ability to step into control. Bella is confused and sits with me and starts “crying” too. Which, thankfully, kind of shocks me into a new awareness and I am able to stop myself from wailing like that. Then she starts sitting closer to me so I can keep my hand on her head/back when she moves around. She didn’t understand, but she was such a sweetheart trying to figure out how to help.

We go for a walk which grounds me a little bit. (With the wrong lead and collar, but I needed to make do.)

4) I finally ship off to my friend’s place to work in his office. I’m taking a course by Kieran Rose (the “Inside Autism Series”), so I can be better educated on the identity I hold. And naturally the first “episode” is all about the history of Autism, which is pretty horrific. I make it about halfway through before I need to drive Lyft again. Feeling the pressure, as I only have until January 6th to catch up on the videos.

4.5) I’m gearing up for a trip to MI over NYE and into January for a few things. I feel the pressure of needing to have things done before I leave, so that’s just exacerbating all of this. And I still need to make rent.

5) I’m finally on time for the bonus hour for once, and get a ride. Instead of him adding a new destination into the app, he has me go to a gas station which adds 10 extra min, as I have a ride waiting in queue. (I’ve learned my lesson, as this has happened a few times now. I don’t care if they tip in cash after, it sucks and I’m done doing it. Especially since it’s a safety risk now that I think about it.)

As I’m going to reposition the app to drive this man to his destination finally, I accidentally swipe “drop off” and lose his trip entirely. It immediately shifts to the next ride, which I had to then cancel. And Lyft says we can go offline for up to 15 min during a bonus streak, but it LIED because when I came back on, I had to start over. The ride after that took me a good 25 min out of the city one way. All this to say, I once again was denied a full opportunity at bonus money. (I need that money because I can only drive so much each day, which is why I structure my schedule around those hours.) Then as I leave the gas station, some other driver decides to use the exit-only lane as an entrance and we almost have a collision.

And the last ride of my day? An older woman started asking me about kids, told me that “they say” (and she knows, because she’s written for John’s Hopkins before🙄) that part of the development of being fully female is when we have children and breastfeed. 🤢🤮 Like it’s somehow my duty, and the only way to be a “woman”. I didn’t bother telling her off, or about who I actually am. Something seemed off with her anyway. But like. WTF? AND she insisted that I tell her my deadname after I explained to her my name now is a recycled version of it.

Y’all I’m exhausted. And I started this post saying that I really want to be mad about all of this, but I can’t. All I can be is tired.

I am learning that we only have so much energy to dedicate to what’s important, and I choose today that what’s important is not being mad at the world for being rude to me (lol). Instead I’m looking at how I’ve managed to have a semi-productive day after a small meltdown (that’s a huge win), and I’m looking at how having older people in power (who are super removed from the world and how it works) is something we need to address as a society. If people want to be in power and serve their communities, they need to actually KNOW who they serve. Obviously this isn’t how things work, because most people in power are there for the power, not for the people. But goddammit can we start doing something about that???

Times are changing. The Future is Queer. We can no longer assume who people are just by looking at them, we can no longer assume that humanity neatly falls into binary categories of gender or neurotype. I’m so over how things are currently. All today’s experience can do is fuel my mission of changing the world, one connection at a time.

I sent that woman away with a smile because I knew I wouldn’t be able to change her way of thinking in a 4 minute drive to her house. I choose compassion over anger.

I choose love for others, even in their misguided knowledge. I choose love for myself, even with all my mistakes and anger. I choose love.

Life and everything in it represents–past the metaphorical–infinite possibilities. As humans, we get to BE those possibilities. If we are infinite possibilities, and we are, through what we focus our attention on, then I choose to shift my attention and seek the paths guided by curiosity, courage, and compassion.

That was a lot. Thanks for reading 💜🤘🌈

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cw: hysterectomy/menstruation, gender dysphoria

“Just click this and we’ll have him on his way,” one of the polling station clerks says to the other. My heart flutters with a small burst of euphoria. Then she looks at me, “Oh, sorry, her way.”

“That’s okay, I prefer ‘his’ anyway,” I reply with a hopeful timbre.

Guess what didn’t happen for the rest of that conversation? That’s right, she used ‘she’ the whole time after. 

It’s some kind of poetically cruel irony to have half the country voting for or against Roe v Wade principles on the same day I was supposed to have my hysterectomy, on top of getting misgendered at the polls, while menstruating.

I don’t expect strangers to know right off the bat, but I literally told her that I prefer ‘he’ to ‘she’ and it just didn’t matter (simplified, I actually prefer ‘they’ and no longer like ‘he’ anymore, but it’s better than ‘she’). And the procedure was denied by insurance due to lack of “medically necessary” evidence. I couldn’t get a letter of gender dysphoria into the system fast enough so my surgeon’s office could appeal, and now I’m doomed to endure another however many months of pain and discomfort in my body until I can get it done.

I’ve lived my entire post-puberty life in debilitating pain, and I’ve ALWAYS not felt right in the body I have. I just didn’t have language for it until I came out as nonbinary at the age of 25. I’ve been through birth control after birth control, ultrasound after ultrasound. I’m always picture perfect on paper, but my lived experience has been hell. Can anyone say endometriosis?! I don’t see how the medical director of my Medicaid insurance company could look at my medical history (of constantly being in and out of office for issues) and determine I’m not a fit candidate for surgery. I don’t understand how the “peer-to-peer” meeting my surgeon had with the medical director didn’t produce positive results; did my surgeon not fight for me?

And now I have the very scary possible reality where I could live in a world where my body is not my own. In fact, much of the U.S. government is already claiming AFAB bodies as its property. I don’t want to keep trying new birth control (side effects are scary) when societal collapse is bound to happen in my lifetime (I won’t have access to it past a certain point). I want a simplistic, permanent way to take away all the pain, risk of pregnancy, and added dysphoria so that I can continue to make something of my life before shit really hits the fan.

I am constantly forced to reckon with how we live in a dystopia. It’s fucking exhausting, and I’m one of the luckier ones.

I wish I could say my mental health is staying strong but it’s not. The last several months have been so stressful living in this “limbo” space of “will it happen or not”. I’ve been officially cracking under pressure for a whole week (when I was told the surgery needed to be postponed), and now that today is finally here, I’ve got nothing left in me to give. I’m hurting badly. And I honestly don’t see it stopping anytime soon.

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Image description: a bald human is cringing in pain and effort with their hands at their temples, presumably rubbing them. A forcefield radiates out in rings from their forehead. The caption reads: Me trying to remember what I heard or said just moments ago.

Cw: ADHD management and healthcare story/rant

So today was the 4th time within 3 weeks that I’ve fucked up in bigger ways because of ADHD brain. Here’s the storyline, and then I’ll get into specific issues with healthcare:

It all started 3 weeks ago when, after basically fighting with my PCP, I had the opportunity to drug test for controlled substances so that I could start my ADHD treatment early (I’m seeing an actual psychiatrist at the end of this month). Because I had the immediate opportunity to jumpstart treatment, I accidentally bypassed the appointment I had that day for my TMD treatment. I realized 5 minutes too late to make it, had to call in all embarrassed, and reschedule. All was fine, but it’s just really frustrating and ironic that I was getting screened for ADHD medication while missing an appointment because of my ADHD (in two ways). 

That rescheduled appointment was then scheduled for a time I forgot I was going to be out of town during, and had to again reschedule that last minute as well.  

Then later in the week, I almost missed my re-rescheduled appointment, EVEN THOUGH I KNEW IT WAS IN MY CALENDAR, because I was out from other obligations and thought in the moment that it would be convenient to go grocery shopping since I was near the store. Half way through filling my cart I realized I had to be at the other appointment, rushed to put everything back, and made it out to where I needed to be with no time to spare. FINALLY I made it to my appointment that I’ve been waiting for, for almost a month. 

Cool, some fumbling around and embarrassment, but nothing major (which, I’ve definitely missed major things in the past) because all turned out fine. 

Then today, after weeks of planning with my mom for me to watch her dog while she’s away, I realized that I have a very important psych appointment Tuesday this week (for ADHD treatment). I’m supposed to watch Bella (the dog) down near the Finger Lakes, which is an hour and half away from where I live. Mom and I arranged for me to stay there all week, which would have meant that I’d need to leave Bella in her crate for several hours Tuesday. Thankfully Mom isn’t leaving until Tuesday morning anyway, so she can stay with Bella back home (not at the lake). Now I can stay home until my appointment and then take Bella after. But Mom went out of her way to make sure she borrowed a car to take the dog to the lake today, and she was counting on me to also water the flowers. Once again I leave people at a disadvantage because my brain can’t even keep its shit together for a day.

“You need a system, Jae.”

Yes Mom, that’s why we’re even having this conversation right now, because I have a system and it caught my mistake TODAY instead of DAY OF. But I can’t be hypervigilant and take in my schedule for the whole month every day. I can barely make it happen for a week at a time. That’s so much anxiety. That’s so much juggling of too many things, even though it’s all written down, when my processing and capacity are already at a low. I often can’t get shit done if I’m stuck in a mode other than “one day at a time”. 

“I need you to be here at 10AM”, demands Mom. “You know I have an appointment to be at! Let me make sure I can do that,” I answer. “You already told me what time it’s at!” she barks back. “Yes! And I don’t remember!” This is seriously how my brain is nearly 100% of the time. I can’t remember things that I just uttered 2 seconds ago much of the time. It’s a stressful existence, to say the least.

Who the fuck cares, right? I’m privileged that this hasn’t had a huge impact on my life, as a lot of this is “first world problems” kind of stuff. But shit adds up. My healthcare was almost jeopardized several times, and I’ve caused people I love a lot of stress and undue inconvenience. This is why I need ADHD treatment, not just to aid me in getting my shit together for my own life (career and self-care wise), but to make sure I inconvenience others less with my mistakes. 

Mental health wise, I don’t think people realize how much ADHD can wreak havoc. There is more than memory dysfunction. Not only does it make my relationships difficult to maintain through fuck ups like this, but there’s no relationship degradation either. So when I don’t see or talk to people for months, much of the time I feel like we should just pick up where we left off because to me, nothing’s changed. But to them, that time period of not interacting with each other means they’re no longer important to me. Thankfully most of my people now are also neurodivergent (ND) and know what this is like, so we don’t hold each other to neurotypical (NT) standards, but it still sucks. Even then, the fear of that degradation happening is there. 

Rejection Sensitive Dysphoria (RSD) is also a thing for many ADHD folk. RSD makes it so perceived AND actual rejection takes a genuine attack on the psyche, where often it catastrophizes into “everyone hates me” and “I’m only a fuck up” kind of thinking. Can you imagine having that on loop in your head almost every day? It’s really hard to rise above that and feel like a competent human being who is worthy of love and other good things. It’s intrusive, a compulsion: you have to constantly redirect your focus, which takes a lot of energy–energy that you are not infinitely made up of, especially in the face of many daily adversities.

And then you have the very real impact of big fuck ups, like missing an important appointment. Not only can you be penalized by the entity that you were supposed to meet with, but the shame that comes with that kind of fuck up HURTS. It is actually physically painful a lot of the time (because of how I’m wired). And it only reminds you of all the other times you’ve repeated the same behavior that you also physically can’t prevent. I can, and do, set multiple alarms, have multiple lists, have multiple calendar events (often set at least 15 min before the actual start of the event)—all to keep me on track, and these mistakes JUST KEEP HAPPENING. 

I genuinely don’t think NT people or maybe OCD/high anxiety ND types can grasp this kind of lived experience, and it’s super frustrating to feel added judgment because of that. This is not a “woe is me” post. This is a call for awareness that a lot of us try so freaking hard and still fall short. This is to ask people to stop judging others because they’re consistently inconsistent. As hard as I try to fit into the systems that be, I simply DO NOT FIT. So many of us ND folk live in this kind of existence, day in, day out. It’s exhausting. It can be incredibly debilitating. 

“Jae is a wonderful student, they just need to work on consistency.”

– A college professor of mine.

I’ve been working on being consistent my whole fucking life. Gods how I WISH I could just gain and keep those skills, after all this time “working” on it. 

And to end, a rant on medical care:

I had to argue and prove my medical history to my PCP for him to take me seriously about ADHD treatment. First off, he doesn’t even believe adults can have ADHD. Like, what happens to children with ADHD who grow up? Their neurology just changes at the age of 18, like a flip of a switch? You can’t be “cured” out of it, it’s a friggin neurotype! Which, it doesn’t even need curing, it needs specific accommodations, just like any other neurotype. So not only did I have to feel invalidated and judged for needing medical treatment for something my doctor doesn’t even believe in, but he kept pushing medication (that I hadn’t remembered at the time that I’d already tried which put me in the hospital). He kept pushing Strattera because it’s not a “controlled substance”, when Adderall literally was the only thing that worked for me before, even though I was on too high/frequent a dose (and it also almost put me in the hospital). I am a firm believer that I can make my life better, more consistent, if I have control of my ADHD treatment. If I get to decide how much and when I need to take a stimulant, then I may be better suited to managing the days of capitalist, ableist society.   

I finally got to take a drug test, after confirming that having THC (weed, or better, cannibis) in my system would not fail me (though I only got verbal confirmation, and I wish I had gotten it in writing). And after all the to-do about not wanting to fail for having THC in my system, the test comes back negative for everything including THC. It was surprising and we ordered another test which I took the following week. Finally THC shows positive, but then my doctor goes out of town without sending my script in for Adderall. The “fill-in” doctor tells me that he can’t do anything because he needs to defer to my PCP’s judgment about the THC, making me wait yet another week for treatment. So now, instead of going into my psych appointment with a few weeks of treatment under my belt, I won’t even have a few days which defeats the whole purpose of going through this entire process with my PCP to begin with. This whole time I’ve felt like I’m being trapped into something that reflects poorly on me. I have a lot of medical trauma and misjudgments in my chart, and I feel like this whole experience is just adding to that. Either way, receiving proper treatment for ADHD as an adult apparently isn’t as easy as folk make it out to be, and it’s incredibly frustrating. It’s probable that if I had been able to start treatment when I was supposed to have started, I wouldn’t even be writing this post right now about all the fuck ups of the last few weeks.  

Update: literally as I’m writing this, I got a text from my pharmacy that my script is now filled. For the wrong mg. Well, at least I get a day to try it out I guess? Ugh.

Anyway, something-something our healthcare sucks, stigma sucks, ADHD sucks (often, but not always). And I’m Tired™. End rant.

What are the solutions though? How do we find ourselves better healthcare professionals who believe patients when they talk about their lived experience? How do we break down stigma and treat each other with dignity and respect? The best I’ve come up with so far is to speak out, and loudly, about our experiences. If you’d like to join in on the conversation, I’d love to hear about your experience too! And I encourage you to post and share in your own social groups of the same. We only have so much reach when we solely speak to each other, to people who already understand our similar plights. Much love to you! 💜🌈

Need to rant about this stuff too? I’m your guy! You can schedule with me here (read package information and scroll to the bottom to fill out a Calendly appointment time slot). Looking forward to supporting you!

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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!

made with inShot and FlyerMaker apps

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*

Looking forward to being in community with you!

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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 💜

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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.

by on

CW: mentions su*c*de

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.

a gif of a white individual with long hair in a ponytail and circular glasses looks anxiously at the TV and drops the popcorn in their hand

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.

To be vulnerable is to allow the winds of life to blow freely over your soul.

Maria nemeth

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.

Welcome Back!

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.

Trans Lifeline

National Su*c*de Prevention Hotline – LGBTQ+

Support Hotlines List (including more LGBTQIA+ specific ones)

Stay well, stay safe 💜🌈💜

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