Reckoning with Disconnection

It's ok to grieve after reckoning with the care you didn't receive!

Image Description: An illustration of two abstracted characters holding each other. Their faces are looking at each other lovingly with a slight smile. A small little abstracted butterfly character flies in the background of the piece. The two characters are sitting in front of a tree with flowers growing on it and in front of the characters is a stream. The two figures have faces on their stomachs, with closed eyes and a slight smile. The faces on the stomachs are seen crying, as tears fall into the stream below them. Stars are falling from the sky into the stream. On the stream, there is handwritten text that reads “It’s ok to grieve after reckoning with the care you didn’t receive!”

I think this year I’ve been seeing just how much of a disservice it is for me to pretend things are okay all the time, to put on this joyful show while I am actually moving through frustrating things. I continue to find that when I share bits of what I am moving through in real-time, versus just waiting for this picturesque moment to share the “lesson” I learned or “epiphany” I had in my aftermath of troubles, that is when I witness deeper connection and greater support. It is when I see that I am not alone in my experience. I’m still sorting out the boundaries when it comes to my vulnerability, especially with what I share, but I also desire to be more transparent about where I am at now versus how I “was” feeling at a certain point in time.

I have been catching up on work and life since my broken hearing aid situation, trying to adjust to hearing with my new device. The process has taken more time for me than I realized it would and I am still figuring things out weeks later. I have been loving my new hearing aid.

There was so much stimulation overload when my hearing aid broke, not only a heavy stimulation with warped sound but also overwhelming sound with a new hearing aid. That isn’t a complaint, that’s just the process of me adapting to hearing in a new way. A day after I got the new hearing aid, I was in my apartment and I heard this white noise out of the blue. I was a little alarmed thinking it was a side effect of the new aid, but I looked outside to find it was raining. I had never heard the sound of rain outside while inside a building before. I have been noticing sounds that are new to me. The hearing world is wild. I think this is the first time in my 30 years of living where I really just was in my body enough to acknowledge the beauty & exhaustion of sound.

For decades I had felt disconnected in my body, not only due to the constant physical discomfort I’d have but the gender dysphoria I’d feel as well. There are still moments of discomfort and dysphoria, as I continue to exist in my body. There are now moments though where I’ve been really more keenly aware of my experience in this body, the more I try to be present in it after dissociating for so long.

It’s strange, I’m seeing just how much my Deafness was one of the elements that helped played an additional hand with me disassociating heavily when I was younger up until these last few years. That’s a hard thing to acknowledge. I’ve been having to reckon with how this disassociation has impacted my everyday life from my focus to my relationships to everyday care practices, to my overall health. I wasn’t encouraged to check in with my body when I was younger and when I did check in, I was either in physical pain from surgery recoveries, discomfort from being in my Disabled body, or feeling dysphoric when it came to my gender. I couldn’t name it though.

One of the effects of my syndrome that continue to show now is the limited mobility of my jaw. This makes it tougher for me to reach to the back of my mouth when it comes to brushing my teeth, for example. I have had surgeries to help improve my mobility but it’s still not the best. When I was little, I would witness my doctors complaining about how difficult it was for them to access things, making me feel like a burden. I didn’t realize that doctors weren’t really working with me to help me to have an accessible relationship with my body so I can take better care of it. Instead of them showing me strategies to work with my limited mobility, they would just openly complain to me about how difficult it was for them to work with me due to my mouth not opening wide enough. So when I was checking in with my body as a child, it was for the comfort of others versus myself. It was to go ahead and get onto the “next thing” vs truly checking in on my body to see if I was genuinely okay. I was so used to physical discomfort, I didn’t know what feeling “okay” in my body meant. That physical discomfort was what feeling “okay” felt like to me.

I was listening to a Radiolab episode entitled “The Helen Keller Exorcism” where Deafblind writer Elsa Sjunneson is being interviewed. It talks about Sjunneson’s reckoning with Helen Keller. Listening to that episode to me back to a moment when I was a kid seeing the film about Keller, at school along with my classmates, “The Miracle Worker” and quickly seeing how Disabled people were portrayed in media as “tokens of inspiration.” Moments like watching this movie or seeing “inspiration porn” stories involving Disabled people on the local news was jarring to see because it made me feel like I had to be this type of image for non-disabled people to see my needs or for them to “understand” me.

There were many instances I’d have doctor’s appointments where medical students just came into a room to “study” me as a child. I’d be touched without my proper consent. Experiences like this made me feel so obligated to just overshare. At the time, I didn’t understand how sacred vulnerability was. I had to be vulnerable for survival. Vulnerability can help us connect in so many loving ways, but there still can be boundaries around our vulnerability if we wish to create them. As a kid, it felt like my body wasn’t mine. It felt like it was my Doctors’, it felt like it belonged to strangers frequently demanding to know why I look the way I looked. I mistook vulnerability in exchange for being way too much of an open book in hopes that, when I presented as being an “open book”, I’d be “understood” by others. I wasn’t. I felt like I was an object versus a human.

I have been finding ways these last couple of years that have helped me personally to be more present in my body and ways to have boundaries when it comes to what I share about my body. It’s a slippery slope for me because I want to share things to bring awareness to these experiences and to show others that they may not be alone in this but I still feel I need to proceed with caution. I no longer entertain the query of strangers trying to pry into why I may look “aesthetically” different than others. I don’t always have the energy or desire to be the “teacher” when I encounter moments like that anymore.

Image Description: An illustration of a large abstract character sitting down on the ground with an open door on their stomach which reveals a galaxy. A butterfly type character that looks similar to the character who is sitting down, is flying down from the top left of the illustration surrounded by three abstract floating heads. Stars twinkle in the sky. The text in the illustration reads: “It is okay if it’s taking you time to learn how to be present in your body!”

I love what Lama Rod Owens said in this Instagram video, discussing building a mindfulness practice, “… this isn’t a quick fix, it isn’t about instant gratification. This is about a long-term multi-year process of developing spaciousness, openness & liberation from the things that create suffering for us.”

It’s an ongoing process for me, but I find micro improvements day to day. Ways I have been trying to practice presence have been through meditating a little bit as soon as I wake up in the morning, being outside just listening to the sounds of nature, or sometimes even turning my hearing aid off to just check in with myself. These are just some ways that have personally helped me but they continue to change the more I learn about my body. With learning to be in my body, I have been able to advocate for my needs more, I have been able to have the ability to tell how much I have changed, how much my senses have changed, and how I wish to present myself, as a Non-binary person. I have been able to start having better conversations with my doctors so I could know how I can move through the world and take better care of myself. I have been able to find practitioners who are willing to work with my limited mobility instead of treating it as a burden for themselves. This practice of being more present in my body not only has helped me improve my self-advocacy but it’s been helping me simply show up more for my loved ones. The process of learning how to be present in my body has helped me so much.

As I have discovered things with my new hearing aid, I am just noticing more. I notice how loud things can sound, new details in songs that I have loved, I’m able to now have my phone conversations streamed directly to my hearing aid instead of me needing to use the speaker phone mode to hear my conversations and I am just hearing more details from my everyday life that I wasn’t picking up on before. It’s surreal. My Deafness played a hand in my disassociation and yet it’s now been playing a hand in me learning how to be present. I’ve been taking ASL classes via Queer ASL with my partner this year for the first time ever, which is a whole new extension of the relationship between my body and my Deafness. It asks me to be even more present and it’s been one of the toughest things to do. Not only tough in the sense of stretching my presence but also having to adapt to signing with my limited hand mobility and four fingers.

Thrown into the process is acknowledging the grief I carry as well. Grief as to why it had taken so long to receive the care I needed to affirm my experiences, grief in what had withered away due to my own lack of intention & awareness. It’s beautiful when our needs can be met and yet it can be heartbreaking to know that our needs never were met before an instance where they finally are. Being a witness to when our needs are met in the ways we can feel truly loved, sets a caliber. It can create a stepping stone to show others how we want to be cared for. It can show us how to care for others too. There may become a moment in the reckoning where we look back and get out of a fog that looks unrecognizable to us. How being in our fog impacted ourselves and others in ways we wouldn’t have wanted to. Being in our bodies and being aware of how our bodies may feel looks different for everyone.

In taking more steps with being in my body, I am for the first time allowing myself to feel exhausted and frustrated by how certain things have unfolded. I am in mourning and that’s not a bad thing. I share this mourning through the work I create in hopes that others know they aren’t alone in the experience of this. Art continues to be a channel for my emotions and experience. Art continues to be the connector between my experiences and others. I would rather share and relate, than curate a perfect image just to ultimately dissociate.