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.
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.
“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.
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.
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
After seeing a meme declaring democrats had shown themselves as Anti-American, not just anti-trump posted by a family member I decided it was enough. And that I needed to get things off my chest. A lot of things. It’s not in hate it is purely because I have decided the best way for me to love them and myself is to be honest.
Trump branded himself as anti american by refusing to follow the almost full congressional vote to sanction russia. Because he is a traitor. I love all of you dearly but if you honestly think my mother would be proud of how you are treating other humans and talking about people, including me, as part of this, if you really think this is christian, you are sadly mistaken. He is not christian. He is far from it. He is full of hatred and rage and he proves it more and everyday. Welcome the stranger. Feed the hungry. Provide for the widow and the orphan. Love one another because I first loved you.
Did you know America First was the motto of both the early KKK and those Americans who supported Nazis during world war II? Did you know that Joe Arpaio, who was pardoned by trump has tortured animals and said concentration camps were a great idea? As well as detaining people out in arizona heat in the middle of summer.
All of the things he’s taking credit for are residual from Obama’s presidency because none of the handful of laws they have managed to pass in his first year didn’t go into effect until jan. 1.
Further more, I need you and others in our family to understand that those you speak of with disdain and as other, as less than, without understanding “illegals”, the homeless, african americans who do kneel and participate in black lives matter are a part of my community. They are my friends, my family who is not of blood but very much of the heart. These are people who want the right to exist on a level playing field because you know what, right now they don’t. Right now, I watch those I work with struggle and beat the pavement daily. Beaten down, hurt, exhausted. They struggle to find work, to find housing, everything. The migrant community is a CRUCIAL part of the fabric here. THEY DIDN’T CROSS THE BORDER. THE BORDER CROSSED THEM. Have you ever been to the wall? Are you aware of how big the wall is? How massive? That it has infared sensors and giant towers and all terrain vehicles and that we literally pay border patrol agents to go hiking? I’ve been multiple times now. Did you know that the tanking of both the farming industry in our country and mexico was caused by our own government? And it was not partisan and trump has not a goddamned bit of interest in fixing it because he benefits because he is one of them. He is a billionaire he gives not one iota of a shit about any of us.
Let’s continue, shall we, because I love you and truth is part of love, right? That’s why God sent Jesus, to testify to the truth.
So here’s my truth. My own family voted for a racist who happens to also be a rapist. As a victim of rape and sexual assault that tells me that your body politic matters more than the actual values. Repealing the affordable care act matters more than taking care of those that have chronic and pre-existing conditions. I would love to continue doing work like I’m doing. I feel called to it, but the reality is now i have to choose between the work god is calling me to do and being able to be on medications for my epilepsy, migraines, depression, and anxiety. At not even 30, if i can’t find a job that provides me health insurance i could be unable to afford my prescriptions. I have to choose. Your generation could afford a house on a job that didn’t require and education. Mine can’t on two jobs with multiple higher degrees without debt. And yet we’re the snowflakes. God tells us to take care of people. But you’re saying the correct way, the American way is to refuse to care for people. This is disgusting and unchristian and I cannot begin to fathom where in scripture or life you learned this. My mother never taught me that. Nor my father. Which leads me to assume neither of my grandmother’s taught that.
Which leads me to the last bit i need to do here. As someone who identifies somewhere on the spectrum between straight, bisexual, pansexual, and demisexual, I find the way this administration treats the LGBTQIA community abhorrent. Religious freedom means you are free to practice in your way and I in mine. But the instant your religion encroaches on my civil rights and safety, that becomes a problem.
The way you and others act and speak about these has prevented me, for a long time from being able to be fully myself and I’m done with that. It’s on blast. It’s going further on blast because either y’all need to accept it and change or it’ll be a bit before you see me again.
Because I’d rather be myself and happy with my chosen family than feel trapped and hated with the family I was born to. Because I know this. My mother would have accepted me and loved me, and all others, as God does and showed it by NOT spreading hatred.
If you’re a fan of Hamilton, sorry not sorry for the ear worm.
I wish this blog post was a little more cheerful than any I’ve really posted lately. Spoiler alert, it’s really not. This year is a journey of discovery and living into the reality that things I take for granted are not guaranteed. Things I enjoy and look forward to may mean harsh times for others. Fall/Winter weather has finally arrived in Tucson. Temperatures that make my friends up North scoff mean we shiver and put on jackets. And while our heat was broken and our maintenance man, Mike, was super concerned, I realized I was whining about how my blankets barely kept me warm enough in my house, where I have a bed, a roof, and food. A chance to take a shower everyday, and wash and dry my clothes whenever I please.
And I go to work everyday to serve women who don’t have those things. Tomorrow I’ll go in and sleep on a cot with a mat with the women we are able to shelter. And there will be many more who sleep on the street, in the cold. Unsafe and unsheltered. We give them what we can, sleeping bags, blankets, warm clothes, and a breakfast and sack lunch. We hope to have enough time for everyone to shower and do laundry, but there is never enough time. Everyday I ask myself, how can anyone who has the ability to make this stop, the ability to make sustainable, long term change sleep at night if they choose not to? I can barely sleep sometimes for knowing I have tried to make all the change I can, for knowing that in the past two years I have realized more about my privilege, my ability to sit in discomfort and allow it to gnaw at me, and that it still isn’t good enough. That until every woman that walked through those doors today and the day before and will walk through them tomorrow and the next and the next and so one is housed, it will never be good enough. I am one small voice. But I will keep speaking. Because at some point those who sleep soundly in their beds writing policies that allow fortunes to pass hand to hand comfortably from generation to generation on the backs of the poor will have to answer to the poor who work for them. I believe it.
Enough listening to my soapboxing, I started writing to tell you a story, not to preach to the choir, because you’re reading this for a reason. Everyday, a mass of human experiences teems through our double doors. Right now, we’re decked for a myriad of holidays, Kwanza, Hannukah, Christmas, you get the idea. It’s light and bright in an attempt to bring joy. And it does help. So two more stories. We’ve had a new guest lately, I do not know her name, because she’s not in everyday and she’s very soft spoken. She wears full Hijab and I was curious how others would respond. She carries her prayer mat with her things. Somehow, amidst being on the street and experiencing homelessness, this remarkable woman still manages to do her prayers five times daily as she is called to do in the Q’uran. Today, I overheard her speaking with another of our ladies who was asking about her practice and how she does it. her first prayer time is at 4am. All of the ladies know her now and make space, allowing her to use the library for her prayers. They have learned not to walk in front of her when praying, that it breaks the direct contact with Allah (God in Arabic, for those who have missed that memo). It was one of those moments where you realize when people share being so very marginalized already, learning about another piece of someone’s marginalized culture is not scary to them. It made my heart feel light.
The other was watching a new woman come to the center who clearly needed much help and interact with our executive director. Hearing someone explain the pain that drove them to alcoholism, to drinking, to staying on the street away from family. This woman’s story of having been incarcerated, of learning of the death of her children while she was in prison, and being unable to do anything but attempt to numb herself. It was gut wrenching. I wanted to rip my heart out for her. To give her something that might be broken, but maybe a little less so. Jean found out what she needed. Not only got her those needs, but knew who would be a good person to help comfort her. And then did something that amazed me. “Promise me you won’t leave without telling me first.” She wanted to make sure to say goodbye. That has stuck with me throughout this day. She wanted to make sure, I think, that this individual was welcomed, and that she would know she was welcomed back. “I’m so tired.” That’s all I remember her saying, over and over.
Tonight, I want to pray, for those who are tired, weary, out in the cold whether it is their first night or their five hundredth night. They all have a story, whether someone has listened, another person experiencing homelessness or an angel on earth like Jean. We have no right to decide if they deserve help. They are human. They are us, with a different set of life circumstances.