Disordered, but recovery focused (TW)

I feel like you should probably assume that trigger warning when I post a blog, but I’m also not going to be a person who is offended by something that is a legitimate psychological fact, a trigger. I have them, I’ve learned a lot about them in treatment. But anyway, yes, we’re going to discuss the bumpy road that is recovery for a bit here today.

 

Currently I’m sitting here looking at 22 days without a binge. That’s not 22 days without eating disordered thoughts. Trust me, they come up daily. That includes guilt and shame after eating a perfectly normal thing that I wanted, that is reasonable, that society tells me that as a person in a larger, or to use a word I’m going to own, fat, body, I should be ashamed of eating. I had a single serving of Ben and Jerry’s ice cream last night. That ice cream scared the every loving shit out of me. I was so worried it would set off a binge that it has been sitting in my freezer since I got home. I bought it before I left for treatment. Last night, I decided that at snack, after a week of being back, after my first three days of work without calling out, leaving early, or having an episode, I wanted to give myself that challenge. And you know what. I finished that single serving and was satisfied. It tasted good.

 

Fifteen minutes later, I was freaking out that I’d eaten it. The shame and guilt and worthlessness kicked it. If I’d had an Rx rescue anti-anxiety med, I’d have reached straight for that. Pre-treatment, ED me would have binged something. My ED voice was screaming. I wanted to eat everything in my house. I didn’t want to feel what I was feeling, and having left my phone (and therefore my hotspot) at a rehearsal, my usual numbing agent that didn’t involve food, binge watching, was not allowed. So I sat with it. I took an anti-anxiety supplement that we used in treatment a lot first, and then I sat, using some grounding techniques, and made myself listen to what my body and brain were each telling me. I got about 5 minutes in before I fully dissociated, but it was a start and the reality is, I made a choice. A choice I wouldn’t have had to make if I’d been allowed by insurance to stay in treatment (still bitter, still salty), but I made a choice.

 

I’m sure I won’t always make the right choice. I know this path is going to be rough. The reality is this, I will never again put myself on a diet, because I now know that I can’t restrict without binging later. I’ve learned to listen to my body, at least, I’m starting to. It’s still fuzzy sometimes and getting the hunger cues when I’ve eaten something challenging is like wading through muck because they’re clouded by shame, fear, guilt, and self-loathing. I will continue to do yoga as my exercise for now, and walk the doggo, because while going to the gym in treatment, I fully dissociated, and I was like “whoa, that’s new”. But was it? I spend most of my life walking through in a mostly dissociated state. If I remember things, it’s mostly in a depersonalized, derealized way. Because of how yoga connects to the breath and the body, I can’t dissociate. I stay grounded. I’m forced to stay in my body, even when uncomfortable feelings come up. 

 

In short, I will cheer for everyone of you with everything that you do in pursuit of health. I will be happy for you. If for some reason you see me not participating in things like that, understand that when I do, my ED voice may get loud and demanding, and I may have to step back. If I ask to change the subject when the diet talk or weight loss talk comes up, it’s not because I don’t care about you, it’s because those feelings of needing to control, to manage, to go back to what I’m trying to recover from are strong. They’re bombarding from all sides. Television, the internet, every aisle of the store (this is why I love instacart, oh my god, shopping alone would never be okay right now). I’m asking you to give me a reprieve. Please understand. Maybe, hopefully, a little farther down the road I’ll be able to ask you all about everything you’re doing and join in, but right now? Right now I have to protect my brain and heart from the talk that makes ED his strongest self. He’s kind of a dick and he likes to take over the conversation in my brain.

 

That’s all for today. Much love!

 

Rachel

Disordered (tw, Frank mental health and eating disorder discussion)

This month has felt like a whole year. Sometimes, in the moments in which my temporal lobe seizures feed me deluded sensations of deja vu and I review memories in a skewed and warped sense of reality, making connections that can be both helpful and haunting, I wonder if that’s why my bouts with my mental illness can seem to stretch into an age.

This particular depressive episode started July 11. Two weeks ago tomorrow. I’m not kidding when I say it feels like it has been months. Part of that is because of different things that have occured. A friend died by suicide. I narrowly avoided eviction.  I had to have emergency dental work.

But it all boils down to the same thing. July 11 I spent the last hour of my shift crying for no reason. When I got to the spot where I normally cross the road, I stood for a moment and thought, you know, if I walked into traffic, it’s dark, no one would notice. No one would slow down. Perhaps it wouldn’t be the most peaceful way to go, but I would not have to fully make the choice.

I am here, writing this, so obviously I did not make that choice. Goliath was with me. That was part of what stopped me in that moment. He is the one constant companion I have and I could never physically harm him and no matter if I told him to stay beside the road, he would follow. We go everywhere together. Over the last agonizingly long two weeks,  when things have gotten hard, he’s been the physical barrier between my irrational mind and the time to slow down and rationalize. I am lucky enough to have him with me every moment of the day.

And then when I stop to think, when the rational starts to take back over I remember my brother. My dad. My aunts and uncles and cousins and my grandmothers. I am not any stronger than those who give into the ideation, nor do I have anymore to live for. I simply am lucky enough to have goliath, a constant companion who gives me a long enough pause to force me to stop and think of those I love.

But that first night was enough for me to think back over the last number of weeks prior and look at some things. Before this last round of medication (the 3rd in as many months) stopped working, I had told myself I was getting much better. But the reality is this. I suffer from disordered eating. I have since college. It’s a co-occuring with my depression and anxiety and when it gets really bad, when my mental health declines, my BED gets full control. Time and time again I’ve seen the cycle start and stop and I’ve thought I’ve been the one putting the monster to rest and everytime it comes back. Worse than before.

At this point, I can’t ignore it. When I’m not binging, I’m not eating. I don’t purge it use laxatives but I feel like there’s a possibility of a massive yet after that statement. When my mental health spirals I seek control in some aspect. In something, anything and i self harm in this way. And then the shame, the self loathing. Everything every well meaning doctor and sidewalk doctor and “friend” has ever said to me comes out.

Even when I’m obsessively health, that’s the only other form. Those are the two modes. I’m either over obsessing about every bite of food that goes in my mouth or binging and the subsequently starving between binges. And of course, the ability as a woman who has been overweight my whole life to admit and be taken seriously by my pcp as a person with an eating disorder is more than I have been able to handle.

Until standing at that road crossing and for the first time in my life concretely ending my life felt like an actual choice. And i knew it was the shame and morbidity of my spiral speaking. And i knew that God, the universe, whatever you believe, if you are reading this and need hope from this story, had need of me. Because i wanted help. Because i have plans. So many plans for the future. Because i wanted to walk into that blissful oblivion that was death, yes. I can say that now because in this moment i am not on that cliff. In that moment it felt like all the tiredness I’ve carried,  all the exhaustion I’ve written about for the past three years, the past 17 years of missing my mother, the past few years of missing my cousin, i could just let that go in that moment. And then i paused. And that little light that is everything i want to do clicked on and said “but who will do this? What about your plan to go to Princeton theological? What about wanting to demonstrate that same vulnerability you have worked so hard to achieve, through YAV through your relationships. That you saw at NAPC. That you want for the church. That you want for a community ministry because you feel God is calling you to demonstrate that. Because how do you heal and help those like you without talking about it.”

 

And so I’ve waded through these last two long weeks. I’ve felt like every piece of the puzzle is coming unglued. But tomorrow, I have an appointment to start the clearance to go to inpatient treatment. And I’m writing about it because someone needs to. Because coming out about this was harder than actually coming out. Because I am sick and I am more worried about what future employers or even my current employer might think.

I am worried about what my friends might think. I am worried about stigma. And then I realized, I am not alone. That there are millions of “me’s”. Someone posted the Presbyterian mission today article about the suicide epidemic and it mentioned Scott Weimer and I remembered how much he inspired me to be honest and vulnerable and truthful about who I am and what I am going through.

My name is Rachel, I am 31, I am genderfluid and queer. I suffer from depression, anxiety, epilepsy, migraines, and binge eating disorder. I have and struggle with suicidal ideation. I am a rape survivor. I will survive this. I want to be a presbyterian minister and I also want to get an msw because the church needs to have open and honest conversations about mental health, trauma, and disability. I want to see people like me in the pulpit. I want to see disability represented in the pulpit. I want to see mental health discussed. I want to see all of these things that would have been labeled as demon possession discussed, these uncomfortable conversations had because if I have to wrestle with it daily and in scripture, my church can at least wrestle with it in scripture without erasing me there.

 

Lift the stigma. Tell your story. That is how we start to do something about this crisis as well. The more we all start to talk about it, the harder it is to deny treatment. The more we talk about it, the less alone we all feel, the more likely we are to reach out to each other in that moment of need. Normalize open, honest, scientific conversations about mental health. Normalize truth telling about your pain.

 

Thank you for reading about this part of my journey.  I will continue to fight. I wish I was able to blog it all, but I’m not sure I’ll be allowed, I’m pretty sure inpatient rules are strictly internet free.

 

Much love.

 

Rachel.

Entitled to Myself

Probably a Trigger Warning. Lots of frank discussion of mental health and sexual violence and stuff. Read with care for yourself please.

It has been a long time since I blogged. Perhaps I needed the break. Or perhaps I was attempting to escape the pervading, ever present anxiety that lives inside my head. Either way, something told me to write today. Call it God, call it the Spirit, conscience, whatever you want, but something said “get this out.” Write it down. Remember. Remember how this felt. Remember why you were in this place. Oddly, I’m not anxious today. I’m clear headed and focused on one thing. The present.

The handful, if I’m generous with myself, of individuals who read this will probably thing “What the hell does that even mean, Rachel. The present? Really? Like some hippy-dippy live in the moment thing.” Or probably not because if you’re reading this chances are you probably know about that kind of philosophy, heck, maybe you follow it yourself. But that’s not at all what I’m talking about.

I’m talking about the present as in how in the ever-loving fuck did we get here. I think about that a lot. At times, in caffeine fueled binges of rumination that I could not stop, usually leading to temporal lobe seizures because of sleep deprivation, in which I experience an extreme form of deja vu that I don’t realize is occurring until I’m all the way in it, I felt like it was just the mobius strip of what the world was. Everything had it’s opposite. And then the seizure would stop and I would be angry. Angry that this problem has really been building to a head for so long that even my fully irrational mind in a state of seizure would try to rationalize it as if that would some how allow me to die. Because that’s really what the deja vu feels like, I’m experiencing every piece of knowledge I have ever been fed all at once in real time, like flipping a book open and closed. For some reason, as of late these feelings if they occur (the last one was last night, after excitedly telling my parents I felt like they had stopped. Foolish me.) seem to be narrated by snippets of favorite guided meditations, Harry Potter audio books, and pieces of music all jumbled into a swirl.

It is in those moments that I wish I could BE Hermione Granger still, as an almost 31 year old woman, and simply vanquish the darkness that has riddled our world and settled into my brain in a way that I can’t explain. “Give yourself a break” some would say. I discuss it with my therapist frequently, why I don’t just unplug and stop. And the reality is both I can’t and I won’t. I can’t because since coming out not only as queer, but as pan/demi I’ve realized that I also fall somewhere on the spectrum of genderqueer. My pronouns are she/her/hers because a good 70-80% of the time I feel fine presenting female and that works for me. But even when presenting female I do not feel comfortable in this ideal place of what is the “feminine” put on a pedestal. I find it hilarious looking back that in third grade I played Thomas Jefferson in a school musical and was SO worried about dressing up as a dude with long haired and now feel more comfortable wearing my hair shaved or short and wild colors, playing with the idea of “feminine” against “masculine” and so forth.

I can’t because as much as this is my reality, short of shaving my head, playing with when I wear ultra-femme clothes and less so, I feel uncomfortable presenting as fully “masculine” even on days where it would feel more comfortable. It has taken me almost 31 years to come into my own and I’m still scared. And I’m entitled to that. And I can’t stop paying attention and fighting because even within my own community, that magical land of the LGBTQ it’s hard to feel like I fit. It’s been made clear to me even in queer spaces online at times that “this discussion isn’t for you”. I’ve had folks tell me if I’m dating a person who presents as male while presenting as female that I shouldn’t call them a “partner” because we could pass as a straight couple. So much more.

But then, I also am pushing out of being the person forced to continue to explain my existence to people I care deeply for. Family specifically, long time friends who won’t accept me and my truth. Because it took me 29 and then 31 years to admit aloud what I figured out a while ago. I look back at that high school and middle school girl and I feel so bad. I feel so bad that I forced her to try to fit inside the little box that is “femininity” because the social whims of the day said I should. I war with her still. Can’t let go.

 

I won’t stop because the reality is I can choose how I look as someone who does feel comfortable presenting as the gender I was identified as at birth most of the time. My friends who are trans, agender, or fully genderqueer don’t. Because they are not cisgender. My skin affords me a privilege I can’t ignore and the country of my birth entitles me to rights that others would only dream of. I won’t stop because They are Entitled to themselves and also to not over and over again rip open the wounds that made them for people who don’t care. So I pay attention and try as best I can to show up. I’m not always very good at it, sometimes I think and worry about performative wokeness. I have anxiety. Worrying is a thing I do.

 

And then there’s the every present reality of dis-ease. Illness, chronic, both physical and mental. I can’t stop for that either because I know there are others like me who are just as exhausted, if not more, who can’t handle ripping open those scars. The medications that failed, the treatments that worked for a while but the side effects were crippling, the bills that just never went away.

 

And it’s so odd that all of this came about because I read an article about propaganda and violence because the reality is, people don’t realize that words are a form of violence. My mom used to tell me that the nursery rhyme was wrong “sticks and stones will break your bones, but words will break the heart” was how it should go. That’s what she felt. I agree. And sometimes, those words are the words we choose and use to justify our own existence. Somedays, those hurt more than any stupid name some internet troll on one of my friend’s pages could call me because I’m tired and dragging it back up, raking that sand paper and pouring on that salt, keeping it open to prove it’s there is hard.

I also often wonder if my mom meant that the lack of words could hurt the heart. The refusal to speak, to stand up, for yourself, for your friends, for people who are oppressed.

 

It took me a long time to come to my truth. It took years of walking around in skin that other people felt entitled to put labels on, that people STILL feel entitled to comment about. That people have felt entitled to touch and take for themselves because they bought me a drink, took me on a date, drove me home, whatever. That’s a reality I can’t ignore and that’s the last reason I can’t stop. Because I pray that someday, the only person entitled to me is Myself. and God hears that prayer and I know She weeps with me, because no matter who thinks they deserve more of me, for whatever reason, I know She created me in Her image and that should be the only explanation ever needed.

 

That I am a person.

colonization of land and language

I bring to you a term I learned today on the RuPaul’s drag race subreddit, one I fully intend to use. instead of just LGBT, LGBTQ, or LGBTQIA, someone used LGBTQ2. The 2 stands for two-spirited a term in use in the Americas (from what I understand as far South as Mexico, but generally not further South, but if you know and are aware of that being incorrect, please let me know) specifically by First Nations/Indigenous folks to refer to their bodies housing a masculine and feminine spirit. I believe the term is used in the Philippines as well (precolonial there)

 

So the cool thing there is instead of just assuming the term genderfluid, queer, pangender or whatever western term works for someone who is indigenous, this includes a term that is precolonial. It recognizes that queerness is precolonial, and doesn’t rely on whiteness. White folks didn’t invent this, and certainly didn’t invent the idea of a third gender, or the idea that gender is a spectrum, it has existed for as long as people have existed and the idea that people with a “two-spirited” nature have existed has been accepted and spoken of long before puritans showed up and made it unacceptable.

 

That being said, I’m not saying take someone’s cultural language to describe your gender identity (you’re getting into murky waters there. I just think it’s a kind of a way to decolonize language. Folks who aren’t white constantly have to code switch, so why not include something that isn’t inherently something that I would think to include in my speech as a way to consciously think about how I colonize space. This land does not belong to me. It was not mine. My ancestors showed up and took it by force and yet it is assumed I am allowed to live here. It’s not much, but I’m not often forced to think about my whiteness or what language I use because most folks speak in the English language of the colonizers of the United States of America.

 

So one tiny thing that refers to a term that is indigenous to folks? Thinking about how people being two-spirited wasn’t a new concept before we showed up? Yeah, it’s not much. But it’s a small piece of trying to consciously think about my own race. About occupying space that I assume belongs to me.

 

I am part of the LGBTQ2 community and a colonizer in the land of the Tohono O’odham/papago. I grew up as a colonizer of the Seminole nation and have also lived in many other lands. I acknowledge this, and hope that I can think a bit more about the space I occupy and what language I use in my expression. I encourage you to do the same.

I would encourage you to start with this tool to look at the land you occupy. To whom does it truly belong? Frame it in your mind and think about the women, men, and children who were forced to leave it. Think about those who had culture and language ripped from them, because often it was. In the name of colonization and assimilation of spirit. If you don’t know the history of the breaking of First Nations people, please familiarize yourself. If you don’t know where to start, reach out. I can try to help. I’m a little bit of a history nut, for fun. It helps that my dad likes history a whole lot (that might be the understatement of my lifetime.)

I don’t really know why this came to me tonight other than seeing this word and realizing that this term, two-spirited, has been in use long before we showed up to so many places and it just made me think about how we colonize things and then in some cases “discover” terminology or ideas that have really been in existence for way longer than we’ve been hanging around. Perhaps a simple reframing in some cases is a good reminder.

Existential Crisis in the Midst of Proclaimed “Woke-ness”

I wasn’t really sure if this was the title I would choose. And then I just decided I would go with it. And then I stuck with it. Why? Because lots of folks that fit into the category of “like me”, you know, pierced, tatted, kombucha drinking, reusable silverware carrying, vaguely hipster-y white people are all about being “woke”. For better or for worse, that seems to be the goal. I mean, there are also those god-awful hipster-looking-ass neo-nazi’s known as the proud boys, but they are a whole other level of not cool.

At some point in the last three years, I have kind of turned into this vaguely stereotyped SJW “snowflake” that the Conspiracy Theorist Conservative is scared of (in my head that’s a very special type of conservative, but is it really special?) but that is not really what this blog post is about. It’s just a preface. I have spent a lot of time learning and trying to understand over not just the last two years, but really since I plugged in at North Ave. But the largest and most transformative learning did come with YAV. The shirts don’t say “A year of service for a lifetime of change” for nothing folks.

And so you could say this blog post has been a long time coming, but yesterday, I was sitting in my cube, captioning and, I can’t tell you specifics, because FCC says so (privacy and all) but it was just…callous. Uncaring. The lack of empathy for the human situation that I have to repeat some days overwhelms me. And all I wanted to do was just exit the captioning client. Just end the session, close down my computer and walk out. Say no, I don’t care. I don’t care that we say everyone can say what they want, I will not help you communicate these ideas because it is intolerable to sit here and say this. For the first time in a long time (like first year of teaching long time) I just found myself crying at work.

It was in no way, shape, or form the worst thing I have had to caption, or the hardest day at work I have had. I faced harder things while working at both the food bank, and at sister jose’s. I think the difference was there, I was a witness to struggle and the human experience as opposed to someone being callous about the human experience. And so I almost wrote this yesterday, purely about that. But for some reason I didn’t. Being the good little Presbyterian doo-be that I am, of course, I should have know there was more of a lesson to learn (or maybe it just was something of happenstance, whatever you want to think for you.)

The pastor at the church I attend was preaching on the scripture about blind Bartemieus today. One of his analogies used was of those who received the first cataract surgeries and how it was often so overwhelming to see after having been unable to see from their eyes being so clouded.

I think in this case, in the advent of “wokeness” or the resistance to “wokeness” or even just mere acknowledgement of things like, racism, sexism, homophobia, transphobia, xenophobia, classism, etc etc could be played into this. Even with those who are a little or a lot aware. When you are used to not having to stay aware, not having to see constantly, to be fully aware, it can be overwhelming. You want to stop. The stimulus is too much. In some cases it’s easier to just give up and go back to what you knew before.

And I get that, I really do, and for some folks, that’s what they need. And while thinking about this analogy it hit me what had really been bugging me. That for all I wasn’t a YAV or working in a direct service driven place anymore, I couldn’t turn off what I had learned and felt. I just can’t and really, won’t. Partially by choice.

Because here’s my thing, it is a privilege to get to turn off thinking about it. It is a privilege to not think about politics or the racist thing that xyz talking head said or “Wow that escalated to a really islamophobic place” or “oh right, if we do finally get to impeach the president, the vice president who replaces him supports conversion therapy” (because for all that I have a queer identity, being demi-sexual can be pretty under the radar in the world of crazy conservative politicians) or “oh wow, now we’ve moved past bathrooms to straight up erasing my gender identity as a whole.”

Y’all getting to turn off this stuff is a privilege. Getting to turn off fear of flashing lights behind you or joking about “do I need to inform the police of your whereabouts” when there are 11 police cars just suddenly on your block is a privilege. One which I possess. And I for the life of me couldn’t figure out why I was having an existential crisis over captioning a callous little old woman when the world is so full of them (hey look, we probably all have them in our family, they are literally the bane of our existence).

And then I realized at some point in these past two years I chose not to turn it off. Because others can’t. This is not here as a humble brag. This is here because maybe if more of us thought about not turning off those feelings of despair, anger, frustration, desperation, all those feelings that make us get some shit done…maybe we can work together and find a way to do something. Because the people who need to dismantle systems are those who benefit.

Just my two cents. Take it or leave it.

 

Rachel

 

Post YAV life Lesson number whatever

All roommates face conflicts about dishes. I’m willing to recognize my culpability. Not all people are. When outside of an intentional community, not having a dishwasher is the single most contentious thing to happen to a household. Nothing you say can change my mind.

Living Simply: A return to refresh

It has been a while since I posted. I’ve been caught up in the swell and spiral of business, my habit, my tendency when I get stressed or when my depression gets a little out of sorts. I’m struggling with an unhappy living space, feeling a lack of independence as my schedule depends fully on the bus schedule, and trying to piecemeal together what I want my life post YAV to look like. I’ve been beyond exhausted.

I miss the simplicity of having some things decided for me, of having community days. Of community meals and doing chores together (heck of having other people, however inconsistently, doing chores. All tea all shade to the current situation.)

But there are good things about right now. I sing. A lot. I have some great folks at work I see even if it’s just across the call floor to make faces at or spontaneously break into “my call is on hold so I’m going to dance to the weird elevator music” grooves. I use my bullet journal pretty frequently and try to draw or paint something in it everyday. I spend time with doggo and since we jerry-rigged the fence up he gets to run around like a doofus, which makes me laugh a whole lot. We snuggle up on the couch when I watch netflix (currently I’m watching Charmed, which I had never seen. 90s relived. it’s grand)

So I have been thinking about what I am missing, what could help make some of this less…stressful and make me feel less like I’m spiraling into a constant haze of working simply to exist and not enjoying this thing called life.

And then I wondered to myself if perhaps part of what I was missing was the simple living thing. Really, the intentional living. I don’t stop to think about things a lot of the time. I just do. I don’t take the time to think about how I feel a lot. And I looked around the house and I realized that part of my stress is just that I’m constantly picking up trash. Not just mine. It’s been that way since I moved in. I mean, yes, I’m aware that trash is a part of life, at least it seemingly is. But then I pondered, well…does it have to be?

So I’ve been doing research. What can I do to reduce my waste. I mean, the big thing here is sometimes my energy level is low, it’s just going to be. I accept that. So I’m looking to balance this with a few other things I thought about but step one for me was less single use stuff. I can’t control my roommate. I can ask her to do things and if she doesn’t, I have to choose how it is I want to live. Do I leave things until I either am so frustrated that it is affecting how I feel or she deals with them, or do I just do it and say something, or what. More to ponder, yes, but it was a big realization. I’m sure she probably feels much the same.

The second was I miss cooking, but often given how grocery shopping on the bus works (and that my roommate has a tendency to make HUGE batches of things and then not clean the dishes for about a week. So I have nothing to cook in.) I have energy either to cook or to shop. So it’s figuring out how to mitigate eating so much processed food because it makes me feel like crap. I’m aware of it. But before I was wasting food because I would come home to literally every pan dirty and just be overwhelmed. So I’m at the stage of pick 2 of three I can do. I’d rather cook and clean up. So, I guess I have to find a solution there (even though I love shopping.) Eliminate the bus and it’s not so much of an issue, but the trip to the store is a 2 hour (there and back) ordeal on the days I have time to do it.

These are just the two biggest things. There’s more. But those two things alone I realize are the majority of what makes me feel so stressed. I want to live simply, to live intentionally, to keep it together and not over consume, not waste things. To be good to the planet and myself mentally, emotionally, and physically. Sometimes it just takes a lot of soul searching and it always takes a lot of effort. Simple living is anything but simple to do.

Have a lovely day y’all.

 

Rachel

For the Almighty has dealt very bitterly with me.

“Do not call me Naomi, call me Mara (מרה), for the Almighty has dealt very bitterly with me” Ruth 1:20

I find fleeting moments of happiness as I walk in this desert. A remembered song, a laugh, a scripture I understand far too well. “For if she but touched the hem of his clothes she would be healed.” I sit, and think, and cling to memories of laughter around a large communion table. On a porch in the mountains with rocking chairs and beers. At a mellow mushroom trivia table. Along a bike path. In a car too small for five people with one bag of starbursts and a long wait in a line to cross the border.

And I long for community. Communal living, gathering at a table daily, feeling whole.

There are moments where I find myself in tears for the hole in my heart that I cannot fill on my own because this piece of me is just as empty as it can be, next to other empty pieces that have stayed empty for years, voids that will never be filled because that person has been gone, will be gone, until I meet them again. I push forward, knowing, praying hoping. But sometimes the tears come, like they did at that empty communion table in past months. But at least in that station of trains in and out often not stopping at the same time, we occasionally made connections at the same time.

As silly as it seems to quote from a book that was so over quoted at the time, “and in that moment we were infinite.” Because I felt we were. Because together, when we were willing to let go, to let ourselves be open to community we were more than ourselves, we were truly Church. Not church. And really, it doesn’t have to be the Church of my God even. Something Holy where two or three are gathered, there a spirit of more than we ourselves will be because we can prop each other up through the best of times and the worst of times. Through anything that might come into the path of ourselves and each other.

My heart is heavy with the grief I have for what I miss most of all and that is my little intentional community. I miss sharing meals. I miss not being alone in a physical space. I miss being Church.

Perhaps there is much good, and I see it in many ways. I do not struggle with the good. I rejoice in it. I am thankful for it, because it is sugar to swallow the bitterness I find in many places right now.

Rachel

lost at sea- reaching out

It has been too long since I wrote something here. Perhaps I felt too raw, too resentful. perhaps I wasn’t sure what to say. Perhaps I didn’t have words.

We all know that last wasn’t true. I always have words. Too many words.

I am missing the space to reflect and process. I am missing intentional community, however dysfunctional it might have been. I am missing being forced to look inwards. So I am forcing myself.

I can’t speak in specifics about what I caption, but the loneliness sometimes echos my own. I feel for those who rarely see those they care about. I feel for those who are aware that death is not far off. I fill my time when not on calls coming up with ideas that I’m not fully sure I have energy for. I take on more work hours to try and outfit a room with furniture so I can stop taking on more hours.

Right now I am missing feeling called to anything. I feel like my job serves a purpose, yes. But I miss that sense of fulfillment from before. Like a waxing strip that was too hot and tore off a layer of skin right over my heart and with it took a piece of my soul.

My roommate is nice enough, but I have grown so used to community meals and had been longing for that all year when it wouldn’t happen and I still feel it. I spend most of my days in silence unless I’m repeating what other people say right now. I have a few friends at work, but there isn’t much time. The bus ride is long.

I find myself questioning so many things, asking God why. I pray a lot. I struggle, I cry, I get up, I try again. I search for things to do that fit my schedule and the bus schedule and my budget. I seem to find nothing. I feel more alone.

And so I’ve avoided writing it down. Because it feels like writing it down makes it infinitely more true than just struggling with it. Putting on a good face and toughing it out. I have to realize that this is not true. Either way it is true but perhaps this makes it more bearable.

I have realized in these last two months out of the program that my problem was not program commitments, it was that for all I tried, community still wasn’t there. And I think now that my struggle and feeling still remarkably unhealthy is that I am so divorced from my community because my life is so busy with work so I can live.

I feel like a tiny boat out at sea in rough waves, not a lighthouse in sight. For an extrovert, the only sporadic human contact is a real struggle. For someone who really pushed into opening up and forcing themself to reflect, the lack of it makes me feel overwhelmed. Self-reflection is one thing, but actual work with others in that manner.

I have had many transitions in my life where I have had to struggle, but I don’t know that I have ever felt so alone and cut off from everything that was making me actually happy even in what was difficult. I’m trying to figure it out. I could use some help.

Seized and Desist

All puns aside, I’ve started four different blog posts about my health in the past two months and been unable to post them. But here we are. And the time has really come to talk about it.

Alison, who if you didn’t already know, is the site coordinator of the Tucson Borderlands YAV site, pointed out to me in our one on one meeting that at some point in the last couple months, my language had shifted to referring to myself as chronically ill. I don’t think I realized it or thought of it consciously, but that admission to myself and stating of it has power. Not in the sense of giving the disease I have power over me, but in the sense that it is okay. It is okay to say that in two months I will turn thirty and I have an illness that has no cure. That I am neuro-atypical and therefore this is a way I am part of a borderlands people and have realized in many ways that society is ableist in a way I can’t properly describe. That as someone who appears fully young an able-bodied when I sit at the front of the bus I have to ride people glare at me and demand I get up sometimes. That I get hate for “no please don’t touch him, his vest signals that he is a service dog and that distracts him from focusing”. “well but it’s not like he’s guiding you what is he even doing” And because Epilepsy spends so much time in the shadows and I’m that weirdo who will talk I tell them. And watch their face change from anger to mortification and get some sick satisfaction out of their self loathing rising up in their eyes as they realize what they’ve done. “Maybe next time just don’t pet a strange dog or make assumptions.”

But that’s not why I’m writing this. That’s part of what lead me here. For the last three months my medication wasn’t working. I realized that not only was I having around three to four seizures a night, the clonic-tonic (formerly grand mal) that people think of when they hear seizures, but that for the past ten years I’ve been having what are called focal aware seizures. They used to be called complex partial seizures. That the deja vu, disconnected with reality feeling that lead up to my panic attacks, which don’t happen any more thanks to a great doctor (the panic attacks that is) are seizures. Have always been seizures, not just dissociation. That the weird eye movements are in fact, seizures. So for three months I’ve been having between 10 and 20 seizures a week. While on medication for seizures.

And so Alison and I tried to figure out what was best. And I think really in my heart of hearts I knew that I needed to do what was finally decided, but the relationships and care I had for the people and the reality that I needed to be here for the doctors and have health insurance and housing and income, it just…it overwhelmed and stressed me out more. Which I knew would make it worse. Because stress does make my seizures worse. And it just got worse until I had my first tonic clonic during the day for a year. Goliath woke me up and I had lost time. I was in a different room than I remembered being in. It was a mess.

So we’re here and after discernment with the board of the site, the national office and Alison, I will be leaving the program as of April 30. I’m not leaving immediately, because really, if my health hadn’t gotten worse, I would stay. I couldn’t decide. There is so much here that is good. Time to discern. Stability. Community. Chances to build these deep lasting relationships. This program has changed my life in ways I can never fully repay. I am forever grateful. I will tell people about this forever. But I also have to recognize that right now I have to take care of an exhaustible, finite resource, my health.

The end date of April 30th is so all ducks can be put in a row. Housing, job, health insurance, etc. Because in this great capitalist country (#sarcasm) health insurance is a privilege, not a right. Because if I can’t afford to pay for it, the idea is I should simply be more at risk for SUDEP.

Because the one piece I didn’t talk about last year, that I couldn’t talk about last year when I was diagnosed with epilepsy is that. If you are epileptic you are always at risk for this. Sudden Unexpected Death in Epilepsy. It has no known cause, it’s not drowning or traumatically related, so it’s not because you had a seizure. It accounts for 7.5-17% of all epilepsy related deaths in those with managed epilepsy (in otherwords, you’re not having seizures) and 50% of deaths for those with refractory epilepsy (seizures are not controlled by any medication). 1 in 1,000 adults suffer from this every year. While that may not seem lot statistically it is still something you have to come to grips with and for me, when the seizure activity increased, it certainly played a big part in my concern.

I want people to know not because I want them to feel scared for me or anything. But because Epilepsy is not discussed. Because I walk into a building with Goliath and hear “I wish i could have a service dog”. Because it takes me days to recover after a tonic clonic. Because I don’t know why this happened. Because Jesus cast demons out of a boy with this disease and that makes me angry, even though tomorrow I will celebrate that he died for me and rose again. And it makes me angry because I am not possessed and yet there are people who believe that it’s a thing that is true. And in other cultures people with seizures are considered to have great powers and be capable of healing disease. And all I want is to be able to ride a bike or drive a car and not be afraid that I won’t hurt myself or others. To not worry that if I use the stove or a knife in a house by myself that I’ll cause serious bodily harm.

So I’m discerning the path forward. Mourning that I will be leaving something that has been so wonderful for me, but rejoicing in the peace I feel that this is what is best. I will still use this blog. I will probably use this blog to write my thoughts as I go along in the discernment process of finding the next steps.

 

Peace and Love

Rachel