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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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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.