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

 

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An open letter to my extended family

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.

who tells your story

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.

All Souls: Who Mourns the Homeless?

Today I answered the phone to learn we lost one of our ladies. I have written about her before, in my last blog post. I called her Eugenia. My heart stopped. I had been told she was sick and in the hospital, but to learn she had passed made me hurt. Jean spent part of the evening telling the ladies, and as part of the time where the ladies can gather to pray before the meal, she was remembered. Tomorrow there will be an ecumenical service in her memory, because the ladies have asked for such a thing. This is a special place, sisterhood is present here. The women care for each other. They genuinely mourn their sister.

My heart is aching at the loss of this soul that I knew only for a short time. She was full of fire and spunk. She was ill, yes, but that did not define her. She was caring, loving, and kind. She was always welcoming to those who were new. She would come tell you about the simple accomplishments that made her proud. “I finished my breakfast and lunch, Miss Rachel.” All the volunteers were Miss so and so. A redhead (I know my stepmom and a dear family friend or two who will enjoy that) and it suited her to a t). She would find an outfit she loved and come to show it off. If the dinner looked particularly good, she would say “Oh man, I’m coming back for seconds!” While I can’t tell you her full name, I will tell you that she proudly signed her middle name, Hope. And it suited her. She brought Hope to all. She was hopeful, loving, and kind. I will miss her. I will never forget her words to me, the last thing I remember her saying to me, “I just appreciate that you listen and really make me feel human again.” In her, I feel like I met an angel, one that was sent to give charge and benediction. Meet people where they are and give them the simple things you can, allow them to feel human again. Treat them as people, listen, don’t judge. Just be and feel. Be open. Another woman who need us desperately walked through our door. I can’t tell you her story. I just hope I can live up to that charge.

I know that tomorrow I will be here to mourn a wonderful person that I was lucky to know. So many go unmourned. I hope you will remember them today, tomorrow, and forever, because they deserve people who miss and remember and mourn them, too. No one should go unmourned. No one should die forgotten. Today that’s all I can think. My heart is heavy with this, except that I know heaven gained another angel who is waiting with a kind spirit and a loving word and smile.

operation streamline: people as livestock

This is my second time going to this court proceeding. I don’t think I will ever forget either one.

Operation Streamline occurs five days a week, 52 weeks of the year in Tucson at the federal court house. 70 migrants a day who have been picked up within the last few days are tried for illegal reentry and illegal border crossing. The former is a felony and the latter a misdemeanor. The judges have no leniency, the sentence increases based on the number of times they have been apprehended.

 

That right there should tell you it is not effective. If it was effective the mandatory sentence wouldn’t need to increase. But it does. From one month to six. To, as I understand from one trial today, unless I was mistaken in what I was hearing, the defendant is unable to plead guilty and agree to a plea deal and must proceed to court to be charged with the felony, which carries a sentence of two to twenty years and a fine of up to 250000. These are people who have traveled from their homelands for whatever reasons. If they come from Central or South America, they have walked to take “La Bestia” or “El tren del la muerte”. Many are severely injured or die just doing that. Then the trek through the desert with or without coyotes. If they don’t die, or aren’t killed, in our case to get to this trial they are detained and caught.

 

That brings us to court. They are bused in from detention centers or border patrol holding and  meet with court appointed lawyers for a little bit. Each lawyer has 5-6 clients. They have to assess if they speak and understand enough english or spanish to proceed. Plea bargains are written and signed, and then court begins. At any point, a migrant may make a statement of fear. If they make one to border patrol, they shouldn’t wind up going to court. Today, a few did. The agents know that they should not, this means they are seeking asylum and in fear for their life, afraid to return home.

 

Last year, I remember the sound of chains as seventy people, men and women, young and old were brought in. Their personal affects are taken. When deported they are often never returned. Today, they were not all in the court together, and as each line was brought in, there were no chains and no one in prison garb.

 

The attempt to play at humanizing the inhumane was obvious. But this practice, this costly ineffective practice is still inhumane. It was like watching cattle be stamped and processed for sale. I will never forget it as long as I live. The chains may not have been visible this time, but I could still hear and see them.

The Power of a Story, to be seen as Human, to be seen as Woman

I should tell you now, most of the stories I will have to tell of clients at Sister Jose’s will not be easy to write or read. Many may be triggering. But they deserve to be heard because it is rare that someone sees these women, let alone listens.

 

People experiencing homelessness are often highly visible and yet unseen. Think about it, especially if you live in a city. How often do you see someone with a sign and keep your eyes facing front and keep driving. If they approach you, do you give a grimacing smile and keep walking, if any acknowledgement at all, possibly thinking silent judgments in your head? If you, like me, spend most of your time on a bike, or on foot, or public transport you come more and more in contact, do you skirt around, switching sides of the street going out of your way to avoid? Do you know which parks to avoid in town? Really think. Do you see the homeless? Do you actually actively look and see them or do you just look and try to avoid thinking about the reality that you have no idea what brought them to that point.

 

I do the data at Sister Jose Women’s Center, and I will slowly bring more numbers, but the reality is this. We are the only center for unaccompanied women, both cis and trans,  experiencing homelessness in Tucson. There are no children and no men. As in I’m not going to debate with you about your thoughts on trans rights because transwomen are women. Period. The rate of PTSD and mental illness among the population we work with is particularly high because of the rate of domestic and sexual violence both prior to homelessness, leading to homelessness and during homelessness. The lack of services available without men present is staggering. Many women won’t seek help because of this, because the mere presence of men can be triggering to them. We don’t allow them inside the gate unless they’re dropping off donations/deliveries/contractors. You can call it sexist, we’re more concerned for the safety of our guests.

 

I’m not blogging to talk about that though, after figuring out what was best for safety and power dynamics in story telling, I wanted to talk about some of what I have experienced at the center. Some of these stories will be from our night program, some from day guests. I’ll tell more about day to day operations as I go along. Names and identifying details will always be changed to keep the lovely and wonderful ladies safe.

 

First, I would like to start with Eugenia. She is in her late sixties, I would guess, which is not uncommon for our population. Our average age is late 40s to 60s mostly, which surprises most. She’s a petite lady with fiery hair, which I’m not sure is dyed or real, you never know! One of the things I absolutely adore about her is her fashion sense. I hope that I am half as cool as her when I grow up. She puts together the coolest things. Sparkly, colorful, pattern. She wears funky shoes she gets from our “shop” (we get donations and ladies may pick things for free). She often feels sick, but boy, she is a spitfire no less. She really made me want to write more about stories, because the other night during dinner when I overnighted, she looked at me and said “Rachel, I just appreciate that you listen and really make me feel human again.” It kind of shocked me. I don’t know that I’ve every thought about it? Sometimes I feel like I’m too rushed and short with some of the ladies, just like I know I could get with my students, but something about Eugenia pulls at my heartstrings. She doesn’t always eat much, she doesn’t feel up to it, which reminds me of my own Nanny Lovins, but she proudly tells me when she does, and I tell her I’m proud, and ask her what was in the lunches from Caridad that she liked best. Or if she liked dinner the night before and I wasn’t there I ask. It’s little things. My wish for her is that she continues to eat and we get her strong and healthy to find her housing!

 

The other story from this week is from the day program and does come with a strong trigger warning. I was actually getting to leave from my overnight that same night, making sure the desk was clear, when a woman, clearly in pain, came in. We don’t open until 9am, but before I could say anything, she asked to use the restroom. They had just started to be cleaned, floors were wet. I let her know that they were being cleaned and asked if she wanted to wait. She let me know she had just started bleeding, that she was in her first trimester and was miscarrying. This is I think one of those moments where there is no preparation for what to do. I asked if she needed me to call the hospital and she said no. I knew that if I called, as much as I wanted to, they would say that she was an adult and if she refused treatment they’d leave. She went back outside. When I came back for my later shift, she was still there and in pain. I don’t think anything has ever been in my head so much as that. The matter-of-fact way with which she stated it, that it had happened before, that there was nothing the doctors could do. I was distraught. Angry for her because she had no where to go. Angry at the system because the reality is there are people who would blame her for that without knowing the whole story. I never even learned her name. I still don’t think I will ever forget her face.

So, what can you do? First, pray for me, for the women at the center, and for those on the street who have no where to turn. Push for better places for them and better laws to help those experiencing homelessness. Donate to centers for homelessness instead of thrift stores. They need it. Donate to my year. And don’t look through those you see on the street. Look at them. See them. Find a place to do the work. Volunteer. It won’t be easy, I guarantee, but someone has to help. Maybe it should be you.

 

In love.

 

Rachel

Sistering, in pursuit of Humanity

When I decided to do a second year of the Young Adult Volunteer program, I didn’t really know what it was that God had in store for me. I just knew that I would be in Tucson doing something. I knew I would have an intentional community and spend time discerning more about what my call was. My vocation. I didn’t really know that already, a month in, it would be a vastly more emotional journey than I feel like the first month of my first year even came close to being. Admittedly part of that lay at the feet of Transition Retreat, which, on the whole, was a wonderfully needed experience. There was some closure to be had in that place, in the cold, in the rain, watching the Aspens change with the weather and being reunited with the YAV class of 16-17.

This year is all about Sistering for me. I work at the Sister Jose Women’s Center. I live with three other women. It is truly a year that makes me think of the one women’s retreat I got to attend with NAPC and the idea of Sistering, the note I closed with at the Community Food Bank last year. Incidentally, it was an agency write up about Sister Jose. Sistering is a construction term. It uses sister beams to support a beam that has been under stress where it sits in the structure. Sometimes one, or two. You can sister a sister beam. Whenever you use this technique, the person doing the building has to figure out where to put the support would be, how many it needs, and so on, because each beam is unique and is carrying a unique burden. Not any one has the same situation going on. The builder recognizes that we don’t throw away the beams, we don’t discard them, because each of these beams is essential, it has a purpose. We put others alongside it to take care and hold it up, to help it carry what it can no longer bear alone.

In my first YAV year, I learned that there are many things that we can bear when we have those who come alongside us in covenant community. Without the support of my community, both my YAV-mates and my friends I made in the larger Tucson community, I don’t know if I would have made it through my year. I struggled with it, especially the medical diagnosis, adjusting to meds, to the change in freedom, but I had people alongside me to help bolster me. I was held up to be able to bear my burden.

This year, I live in a community with three other women. I work at an organization that is run by women in support and care of women experiencing homelessness. My year is all about sistering. Some days, I leave Sister Jose’s and I wonder who the sister beam really is. I know the women I work with are there to receive services and I am there as a volunteer to help with showers, laundry, clothes, data entry, and just about anything else you could think of, but often I think I have stepped into a place where I might just receive more from the laughter and interactions I have. Certainly, there are difficult days. Anytime someone asks for something we can’t provide, a deodorant, a bed, a lunch if we’ve run out, I hurt for the inability to give them something. But when I can find them exactly what they need, or when they come in for something they need and it also happens to be something they enjoy. Like last night, there was cake with dinner, and one of the ladies who stayed was so excited. She hadn’t had cake in years and you could tell she was savoring every taste. Something as simple as the skill of learning names quickly, being able to remember faces and using that. It is that small human connection that we all crave. Just today, I was calling ladies back for the night program, called a name of a returning guest and even though I always have her down she was shocked. “I wouldn’t forget you! Don’t worry!” She smiled and laughed when I told her that, but it’s so true. It hurts me to know that, at some point, I think she has learned that she is forgettable.

We’re only a month in. None of these women are forgettable. I know I will think of their stories daily after I finish this year. I hope others do as well, because they deserve that. They do. They deserve people that know their names, that notice who loves color, who loves sparkle and print and handbags and that for some reason people don’t think that women experiencing homelessness are still women. They donate things women don’t use, which is odd to me. So in sistering, I think about this, we are all brought close to disaster at different times in our lives. Very often, it is nothing short of chance that prevents you from being where you are. Think about that. See the people, and think about who they are. You never know, they all have stories. I’m lucky enough to be along side them, while we sister each other.

In wonderment and peace,

 

Rachel

 

PS, as always, I’m fundraising for my year. National YAVs are asked to raise $4000 this year. If 100 of you donate $40 dollars, that’s all I need! I’m going to donate to myself as well.  You can go to tucsonborderlandsyav.org to donate online or send a check to 400 E University Blvd Tucson AZ 85705. Make them payable to Tucson Borderlands YAV.

If you would like to support Sister Jose Women’s Center, we always need items. Contact me directly and I can tell you what we need most and where to send them. I see what’s in our warehouse everyday and interact with the women directly and know what they like. They are women just like the women you know. So if you want to send some stuff, let me know and I’ll let you know what we’re really running low on, or what kinds of things would really brighten their day!