Three years

I don’t know why it happened, perhaps the endless sadness that lives in my bones, perhaps connections that never truly were made,

Thinking back to friendships I thought I was making,

Being confused at the way they spoke to me but the silence that swiftly followed.

The world shattered, like some sugar glass, knocked off the counter,

And most just swept me up in that mess and tossed me in the garbage, and wiped their hands clean of my existence.

I don’t know why it happened.

But I’m left here, searching the dark, for the way out.

A million little deaths

I wrote this on Instagram nearly a year ago and as the third anniversary of Natasha‘s death rapidly approaches, this still rings very true.

-Tomorrow marks two years since Natasha left this realm. And there’s been this drawing going around about how grief doesn’t get smaller, you just grow around it. I hold onto that image in my head for hope because over the last two years it has only felt as if the grief has stayed the same large lump in my chest and I have shrunk around it. I keep saying I don’t know how to connect with people to form or maintain friendships anymore but the more I sit with that sentiment the more I realize that it’s not that I don’t know how, it’s that the ways in which I do so now have shifted dramatically. And that shift has left me at odds with how society views the forming of friendships and the types of bonds that “should” look like.

I know it’s hard to sit with me with my pain, I know it well because I sit with it every day. And it’s a strange place to be, navigating this during a time when most people are tapped out entirely and being able to hold space for people in the ways they cannot show up for others but simultaneously be so hurt and angry at the silence and expectation to hold it all nearly alone.

All the major deaths in my life have come after a culmination of a million little deaths since we made the decision to move to Vermont. It’s been a long and tiring 5 years. I sobbed in the car while driving this morning, like I did the night I found out that Natasha was gone. And the tears keep coming, endlessly.

I am so weary.

And I only crave to have a friend come and hold my hand and let me know I am still worthy of friendship and to sit with me in my grief.

Tomorrow is a reminder of the friendship that finally felt so full and safe and connected and the failure I feel as a friend as she slipped quietly from my life.-

Nov. 22, 2021

Deep breaths

I’ve spent so much of my life in a state of constant pain, of assessing the limitations of it, the needs of it, caring for it as it’s own entire entity, living within the confines of my skin. Feeling it screaming, pushing at the tissues, trying to take over my entire being.

I’ve spent so much energy, and money, trying to appease it, handing up offerings as if to make a deal with a demon for just a moments peace.

And two decades later, I have found that peace by leaning into the unknown and trying something I was terrified to try.

For the first time ever, I finally can enjoy being touched for the sake of being touched. Not out of necessity or as a way of pleading for some relief. And as a person who’s spirit craves physical touch, I cannot even adequately put into words how deeply nourishing it is to let go fully into physical touch, as it reaches into the depths of my core, finally getting to release the muck my spirit has held onto for a lifetime, for many lifetimes.

I’ve spent so much time getting massages for pain management, getting acupuncture and physical work for a fleeting moment of mitigation that I have never known what it truly is like to wholly enjoy the thing I desperately need.

Getting something for sustenance instead of for necessity has been liberating.

Getting confirmation that the issues you have dealt with as long as you can remember is in fact a genetic disorder is simultaneously validating and heartbreaking. There’s no cure, just bandaids. At least I know how to help my body and don’t feel “lazy” for the things my body physically cannot do now but I also am so exhausted by a society that does view that as laziness and something I need to overcome.

I started a medication last week to help my chronic pain, after years of supplements, exercise regimens, specific types of diets, eastern medicine, and natural remedies. None have brought me any sort of lasting relief. So far, this medication has started to lessen the daily pain I feel. It unfortunately has come with some side effects that I’m desperately hoping will subside. Each day I wake up more and more fatigued, after years of an already constant fatigue from my EDS. I’m not sure which is worse. But honestly, if this new level of increasing fatigue doesn’t subside at least in a couple weeks, I think I’d rather have the daily pain. At least with that I learned to be able to work through it to find moments of joy during the day instead of just fighting bro stay awake.

I’m just, I’m tired of being tired. I wish I had a tub I could take a proper bath with and a massage to melt into.