Ghosting and Returning to the Internet and Public Life as a Disabled Artist

Ghosting and Returning to the Internet and Public Life as a Disabled Artist, Part One of Two: An Odyssey of Obstacles.

Ghosted. 

I ghosted all of the internet and the people I cared for on it, and I hate that I did.

It wasn’t intentional, and it certainly wasn’t planned. It just… happened.

Gasping. 

At first, it was just going to be a quick break. Just to catch my breath.

I just had to deal with this one major thing real quick and then I’d be back.

Then came another thing.

And another.

And another.

And then it was just exhaustion all the time. And terror. 

It was no one thing that led up to me leaving work and social media for so long; it was a small mountain of them against the very little energy I had at the time.

I felt like I was always gasping for air, flailing at the surface of life and just barely being able to choke air in with the water I inhaled.

Until finally, it felt like more water than air in my lungs.

Sinking. 

2020 – 2022 was of course about the pandemic, and that hasn’t ended in our high risk home.

From day one, my partner was forced to continue to work in person in dangerous conditions. The company he works for had the means to enable all of their workers to work from home– but they decided that only the higher income workers deserved that right. The lower wage earners were required to show up in person, not provided masks or the enforcing of the mandates, and barely provided the mandatory sick leave when they all inevitably caught and transmitted COVID.

We had no choice. My partner was the sole source of real income, and he had just switched to this job little more than weeks before the pandemic began. We needed the money badly. We desperately needed the insurance it came with. We were stuck.

And so he went to work every day, unprotected. And I watched him leave our home every day, traveling into the city and risking his life: a sacrifice to the economic gods.

We did everything else we could to mitigate our risks: we stayed home. We only went out for groceries (including long trips to make distanced and masked drop offs for our friends and family), medicine, blood tests and donations, and laundry, as well as monthly COVID tests and eventually the occasional in-person medical visit. We cleaned our groceries until we knew better. We adopted new protocols for decontaminating upon arriving home. We masked with what we could afford and find at the time: cotton cloth masks that I made us.

Meanwhile, I stayed home and made masks as a volunteer to be picked up and distributed to medical providers and anyone else who needed them. I dusted off my old sewing machine and my barely-past-beginner sewing skills and worked until my fingers were too stiff and my back yelled for a break. I worked to stave off the constant terror of my partner dying, of myself dying, our loved ones, our communities, the world.

We made plans for the worst and hoped for the best.

We of course caught COVID. It was inevitable in our situation.

My partner caught it once. I had it three times: twice pre-vaccine, once after, during the days when Omicron was emerging and joining Delta– after safety mandates had largely been lifted here in New York and people had bought into it.

I’m lucky to be alive. I’m grateful my partner’s alive. 

My pre-existing heart condition worsened, and the occasional anemia I experienced became a permanent and undiagnosed feature for a long time, putting me at an even higher risk for complications from COVID than I already had been. I only found out about it when I tried to do my regular blood donation and instead ended up in urgent care.

Drowning. 

2020 – 2022 was full of other challenges, too.

In summer of 2020, my partner had all of his teeth surgically removed at once due to his severe periodontal disease eating away at his gums and jaw bones. You don’t do a surgery like this in the middle of a global pandemic unless you absolutely have to, and we absolutely had to.

My heart broke for my partner over and over as he dealt with the pain and the frightening blood clots and excessive bleeding that required a couple of emergency trips back to the doctor who didn’t see him as anything more than a paycheck. I helped where I could, relying on my own hard learned experiences with the medical system to advocate for him and to make sure he got what he needed. I think it was traumatizing for him to go through this experience, and I think it was for me a bit, too.

Additionally, our lives had to change entirely for the second time in less than six months. All of our energy went into making sure he healed up, making sure he could eat, making sure he got enough rest because he was still forced to work shortly after the initial surgery. I took on most of his household responsibilities, and while I was already used to cooking, we had to adjust his meals to a completely new diet that involved a lot more prep and processing, energy, and frequency than before. I also had to cook my own separate meals oftentimes because I have sensory issues with the kinds of foods he needed to eat. 

Every little bit of extra energy went into meeting just our basic needs for a long time.

This lasted for well over a year until he was able to get dentures fitted and get accustomed to using them, slowly building his muscles back up over time. He also had to find a replacement surgeon for installing permanent prosthetics and go through multiple follow up surgeries. It was an exhausting and challenging time for both of us.

Luckily, this particular saga is nearing its end as we come upon the first round of implant surgeries this spring that will finally repair some of his jaw bone loss and install the permanent prosthetics in his lower jaw. He’ll have to wait some time before he can do the top jaw, but the bottom one will hopefully bring him some relief once it’s completed.

We also faced even more challenges in these years.

I had to learn how to make my own clothes because the ones I had were literally threadbare. I couldn’t afford a lot of the online options that would fit me, and I couldn’t safely try on the cheaper clothes around us in the few places they carried my size. I also really needed clothes of natural fibers to help better regulate my body temperature. So I spent a lot of 2020 and 2021 making over a dozen skirts with pockets and four string-tie  petticoats. Got pretty good at it, too!

I faced two separate cases of blatant medical abuse and discrimination in 2021 and 2022, which took away crucial medical care each time as I scrambled to replace those doctors and hold onto the little bit of stability I had in my life that my medications brought.

Also during this time, our landlords, who live directly above us, repeatedly threatened to evict us. They refused to fulfill their legal obligations without a fight, and they hated being asked to be more considerate of us as neighbors. The husband of the pair became increasingly violent with me (and his own family), particularly when he knew I was alone, which is most of the time. When no one was around, he would frequently try to physically and mentally intimidate and harass me, something he still does to this day when he’s angry enough. It got to the point where we had to purchase an additional lock to put on our door to stay safe.

Unfortunately, those housing issues are ongoing, even intensifying in some ways, and we’ve been working our way towards leaving as soon as we can afford to and after my partner’s next round of surgeries are complete. 

I also developed PCOS during this time, and some worrying cysts developed on my ovaries (the only things remaining after my hysterectomy in 2017) that turned out to be an endometrioma. Like disabled people everywhere, I’ve put off following up with this issue, as well other necessary care due to the danger COVID still floating around: cardiology for my heart condition, dental care, corrective nasal surgery, and dermatology for two new skin conditions are just a few that spring to mind.

I also injured myself pretty seriously a couple times, losing mobility and function in my right ankle and my drawing hand. I sprained my ankle at the beginning of the pandemic pretty badly,  and since I was worried about COVID, I tried to just deal with it at home. Unfortunately, it was worse than I thought and turned into a permanent problem, worsened by the inaccessibility of our home. Months later, I also learned that I have arthritis. 

I also injured the nerves of my drawing hand around the same time, aggravating my carpal tunnel and losing feeling in my thumb. This also became permanent, and it’s something I have to work around when I make art.

I also struggled during this time– and still do– as I watched people who called themselves progressives, leftists, socialists, communists, anarchists, and more gradually abandon and even attack disabled and made-vulnerable people in order to eagerly embrace the propaganda of Moving On With Our Lives. Once the propaganda dressed in Democratic Blue, the same people who sneered at conservatives swallowing Trump’s own bullshit propaganda were suddenly uncritically guzzling down the propaganda of the Biden administration.

People who claimed to fight oppression, to be on the side of justice, who cast a critical eye on misinformation, who called out every lie of the Trump administration, were– are– now celebrating prematurely ripping off their masks and leaving made-vulnerable people behind. They now mock and villainize us when we collectively raise the alarm about the lies and misinformation the government and other bad faith actors continues to spread.

Gone was critical thinking, gone was solidarity. Gone was the final, lingering trust and faith that I had in others.

There were several additional difficult things during this time, as well as lots of less stressful but still burdensome things, but this post is already over fourteen hundred words, and I also would like to keep some things private, too.

I say all of this to explain a fraction of what was going on behind the scenes of my absence. Any of these things alone would have been difficult to deal with on top of my already established disabilities, let alone during a pandemic. All of the work I had done leading up to 2020 to become stable enough to try to work as an artist was pulled out from under me in every possible way. 

I was constantly drained.

I couldn’t catch my breath. 

I was under water now.

I was drowning.

Floating. 

2022 was the year that I had to find a way to float.

I had been trying hard to find a way to come back to work, to come back to the last version of my life that had been stable, that had made more sense. I’d made a few comics and illustrations here and there, submitted and published a couple, but I was still struggling to fully return.

I think I finally started finding my way back when I started going to a wonderful queer and trans health clinic here in NYC called Callen-Lorde. I’d always been interested in going but just hadn’t for one reason or another (usually health insurance-related lol).

In early 2022, I had to deal with the second round of medical abuse: discrimination from my endocrinologist on the basis of me being trans. 

When I began medication for PCOS, it became clear to me that the additional androgen in my system responsible for my PCOS symptoms had also been increasing my energy levels, decreasing my endometriosis pain, decreasing my fibromyalgia pain, and decreasing my anxiety overall. 

I looked into low dose testosterone as a potential unofficial treatment for these issues, found a bit of supporting evidence for my hypothesis, and decided to bring it up with my doctor. While I approached him about this strictly for non-identity-related reasons, he immediately assumed (correctly lol) that I’m trans and that that was the only possible reason I would request this treatment.

To make a long story short, that doctor doesn’t like trans people, refuses to treat us for even non-gender-identity-related care, and doesn’t think we should be allowed to access gender-affirming care. I don’t want to revisit the particulars, but it was a nasty incident, and I decided the time was right to finally go to Callen-Lorde– and also to consider starting testosterone for both gender and non-gender reasons. (Suck it, Dr. Aaron Chidakel!)

Starting at Callen-Lorde was a breath of fresh fucking air. It felt like the first time there was care in my healthcare as an adult. I have been treated with nothing but respect since I started going there, and that alone is amazing to me. I’ve had to deal with a lot of medical trauma, so being in a place where people actually support and respect me has taken some getting used to.

I got acquainted with my lovely new primary care provider, and I signed up for the waiting list to start behavioral therapy. I needed help with the drowning.

Around the time I started going to CL, I also started exploring joining some online groups. I tried some crafting groups, some support groups centered around disability and queerness, and some miscellaneous workshops.

I felt awkward and unsocialized, which, to be honest, I kind of was lol Even before the pandemic, I had been home for years without seeing a lot of people anymore. It had been ages since I’d been part of a group dynamic outside of medical waiting rooms and the three offline friends I have.

Most of the places I tried didn’t feel like quite the right fit for me for one reason or another, but I kept trying, and eventually I found some writing communities and people that I liked who met regularly and were of the encouraging sort. I started attending regularly. 

Having a regular and consistent presence in community felt good. Showing up felt good. Talking to others started to feel good again, and with practice, I started feeling better about socializing. Things that I worried were maybe annoying were described by others as helpful and an appreciated strength.

That felt amazing.

Shortly after I started going to CL, I started therapy with a fellow nonbinary person. Their name was Nikki, and they were assigned as my therapist temporarily for 6 months until I was assigned a permanent therapist. I was really nervous about starting and kind of reluctant to be in therapy again at all to be honest, but I knew I needed it. I was drowning.

Friends, Nikki helped me work through so much of my shit.

With their help, I started remembering a bit more of who I am and recognizing areas where I can give myself a break. They helped me realize how much I’ve been forced to handle on my own for so long– long before the pandemic started– and how I can try to find ways to share the burden with others instead of feeling that I need to solve everything on my own.

They helped me start to understand that being part of community doesn’t have to be mean doing some monumental task or reinventing the wheel– it can be as simple as just showing up in a space regularly. They helped break down a lot of the black and white thinking I struggle with and to find ways to see the shades of gray where I hadn’t been able to before.

We talked about how a lot of the ways that helped me survive, such as having to know every little bit of news at all times, overly preparing for every little event or appointment, researching everything to death so I wouldn’t be caught unaware on something, and trying to prepare for and mitigate any negative interactions with people in order to keep myself safe from harm were all now things I can let go of.

They helped me to recognize that I’m not so strange after all; I’ve just been through A Lot of Shit™. They helped me feel better about being human and giving myself grace and patience and kindness in ways that I thought I had been but really hadn’t.

It was truly the life raft I needed.

I finally felt like I could hold my head above water and maybe even start making my way toward land.

Swimming. 

With Nikki’s help, I started working on some of my goals, including making my way back here, to public life, and in ways that allow me to be more comfortable with not always having control over what happens.

I was able to recognize that I was taking on too much and that I needed to simplify a lot of things and live more in the moment. I also started learning more about boundary setting and figuring out how to apply them to my life.

I started feeling more in control.

It helped that my partner’s and my external circumstances were improving slightly. We were finally climbing out of crushing debt that had been haunting us for over a decade, and we were able to start planning his surgery and thus our eventual move away from the city. I finally have a modest wardrobe of clothes that fit me, feel good, and help my body self-regulate better. We’re back into the swing of things with regards to food and household responsibilities, and so on.

And while we still take significant COVID precautions, we’ve found ways to help us stay safely connected with others in person on occasion. It’s still a risk, but we mitigate it as much as we can: meeting outdoors as much as possible, limiting time together when gathering indoors, masking up with KN95s and N95s even outdoors, staying up to date on vaccinations, testing twice before getting together, using an air purifier in our home that we were fortunate enough to be able to get in the summer of 2022, and so on.

We also don’t do this very often– maybe a few times a year at most; it’s still very much a risk, especially with no new vaccines being made to address the new variants and with the alarming decline in testing and the essential disappearance of effective monoclonal antibodies as a treatment (one which I relied upon the last time I was sick with COVID).

Starting testosterone in July of 2022 was another amazing help, too. It’s not only been really affirming for my identity as an agender nonbinary person, but it’s done exactly as I suspected it would and more with regards to improving my symptoms with other issues:

It decreased the amount of pain from my fibromyalgia and endometriosis. It boosted my energy levels. It decreased my anxiety. And it even helped treat my anemia! I make the same corny statement every time I tell someone about this, but I genuinely believe it: I feel like my body has been crying out for more testosterone for ages. So much of what I’ve dealt with and suffered from has improved simply by taking testosterone, and I’m so grateful for that.

It’s taken some getting used to because those things didn’t disappear with the testosterone; they just became a bit more manageable. I’ve also had to readjust to a new level of Don’t Overdo It Just Because You Have A Good Day™ that my fellow disabled people know all too well lol

So while things still suck in a lot ways and have even worsened or grown more complex in a lot of ways, I’m not feeling like I’m drowning as much anymore or even just floating to get by. 

I’ve started swimming.

And that leads me to now. It’s the end of February as I write this, and I’m still deciding when to post it. I may also do some light editing– I’ve written and rewritten this thing several times now, so I’d like to be done, but I also want to make sure I do this story justice because I don’t want to have to tell it again lol It’s so long!!

I’m still working on developing that muscle for being public again; I also had a setback this month with a 14 day migraine. Yup, you read that right– a 14 day migraine. It was brought upon in part by not having access to my thyroid medication for over a month, which is a whole ‘nother setback of its own that I’m still recovering from and will likely not be back to normal from until the end of March. But that’s a story for another day, and I’m readjusting to get back on course for my goals.

This will be my first big post since getting back into the swing of things; I’m both anxious about and excited for it. I’m looking forward to all the things I have planned for this return, and I’m looking forward to being in public life in a new way that feels a bit better this time around. Less pressure on myself to be perfect and inhuman. More flexibility, more grace. Good stuff.

Land Ho! 

My next post will be all about what’s next and what you can expect from me moving forward! But first, I’d just like to say a few final things:

First, thank you for reading this. I really appreciate you being here and making it this far. I think anytime we genuinely try to understand one another and make that effort to connect is a beautiful thing.

I hope you’ll come with me as I try out new things moving forward. I think you might like the direction I’m planning to take things with my work.

Second, if you’re one of the people I unintentionally ghosted, I just want to apologize. I hope you can see that it was never intentional, but I also know that sudden absence without communication is painful to receive. And for that, I’m truly sorry. By the time I realized what had happened, I didn’t know how to come back, and to be honest, I’m still figuring that out. It’s a painfully slow process, but I’m working on rebuilding that connecting muscle I was talking about and reaching out to people little by little while working on all these new habits and goals, too.

I hope we can reconnect if that’s something you’re interested in, but I understand if it’s not. We’re all different people now, and maybe we’re not a good fit anymore for one reason or another– and that’s okay! I want to thank you– and everyone who’s supported me and my work– for being here and sharing yourself with me at all. I’m a better person for it, and I’m grateful for the ways in which we connected when we did. I wish you the absolute best 💕

If you are interested in hanging around, I want to thank you, too! I appreciate you giving me another chance to hopefully show up regularly again and in new, more human and sustainable ways.

And to everyone who’s supported me in the past, I want to thank you from the bottom of my heart. Your support has been what’s kept me motivated to come back: the touching comments about how my work has impacted you, the enthusiastic sharing of my art with others, the camaraderie of building joy in the fat and disabled community, the cheering for my small victories, each and every purchase of my work, leaving me reviews and filling out surveys– all of these things have been incredibly encouraging and overwhelmingly positive.

Thank you for all of it. It’s truly meant so much to me. 💕

I think that’s all for today. If you’d like to know what I’ve got in mind for the future, please keep an eye out for Part II of Ghosting and Returning to the Internet and Public Life as a Disabled Artist. I’ll be posting it here on my website and sharing it on social media. You can find me on Instagram, Twitter, and Hive.

You can also subscribe to my revamped newsletter Into the Bramble or follow me for free or as a Patron (both are welcome!) on Patreon to receive updates in your inbox! I plan to be much more regular with these kinds of updates.

Thanks for being here 💕

With love,

Jessi