Dispatches from the ICU

An update by Lindsey

Hello readers. I’ve been meaning to get you all an update for some time, and I’m sorry for the delay. I’m writing today while sitting at Sarah’s ICU bedside. It’s been a journey for sure, but we’re seeing an uptick in better news.

This is actually our second stay in the ICU this month. We were here two weeks ago when Sarah had brain surgery in an attempt to find and cut the right vestibular nerve. Vestibular nerve sections are used to treat severe Meniere’s patients. Sarah’s brain has some extremely uncommon neuroanatomy (think 1 out of 10,000), and the surgeons were not able to locate the nerve. We wound up tacking some more days on to our stay when Sarah developed a cerebrospinal fluid leak and needed to have a drain installed. I became a master at waking up in the morning, calling the night shift nurse, driving to work, calling the day shift nurse, teaching my full day at an academic summer camp, driving to the hospital, bringing up dinner from the hospital cafeteria, sitting with Sarah until visiting hours ended, driving home, and collapsing into my bed. We have a number of fantastic friends who have visited Sarah in the hospital, sent cards, checked in on me, and been generally awesome throughout the ordeal. After the drain was removed, the hospital let Sarah go home for a few days to rest before the second attempt at the vestibular nerve section.

Surgery, Take 2, was yesterday. I’m so pleased to be able to report that it went wonderfully. The doctors found the nerve, cut it, and were able to close Sarah’s skull without any additional grafts. Sarah was able to look into my eyes without vestibular drift for the first time in over a year! The doctors think that Sarah has had such a quick positive outcome because Sarah’s vestibular system on the right side was so far gone before the surgery. Even with the great surgical outcomes, Sarah has to clear a number of physical therapy hurdles related to daily living before being cleared to go home. Right now, Sarah’s medical team is actively discerning the best pain management plan, but it’s worth pointing out that Sarah is recovering from three brain surgeries (the unsuccessful vestibular nerve section, repairing the leak and installing the drain, and yesterday’s successful surgery). I could not be happier with Sarah’s current healing trajectory, and I’m continue to pray that we continue to see good outcomes.

As for me, I’m pretty worn out. My summer teaching position takes a lot out of me anyway, and hospitals have their ways of inducing new levels of exhaustion. Thankfully, our dog Gemma is at a board-and-train facility to continue to work on basic public access skills for service dog work. I feel better knowing that Gemma can keep training even as Sarah is out of commission.

The experience over the past sixteen days has changed our lives in so many incredible ways. Sarah and I have been blessed to have a real sense of Christ in our midst. We grew a lot spiritually during our first stay. We’re eager to see what God has for us as we continue walking together. It’s a long road to be sure.

May God bless you, keep you, and guide you. Thanks for walking with us.

Comment Policy: Please remember that we, and all others commenting on this blog, are people. Practice kindness. Practice generosity. Practice asking questions. Practice showing love. Practice being human. If your comment is rude, it will be deleted. If you are constantly negative, argumentative, or bullish, you will not be able to comment anymore. We are the sole moderators of the combox.

Love Has Yet to Win

A reflection by Sarah

I don’t like to write depressing entries for our blog. I’d much rather get back to writing meaningful reflections on living celibacy as a layperson in the world. But that’s not where my mind is right now, and I can’t force it to be there. I suppose one benefit to blogging is knowing that I never have to be isolated. No matter how often Lindsey is away at work, no matter how infrequently I can get out of the apartment to meet up with friends and get my freakishly high extrovert needs met, the blog is here and I’m not alone. Thank you all for reading and bearing with me today.

I’m feeling pretty weary this weekend. Maybe it’s because of my upcoming surgery. Maybe it’s because spending a lot of time at home in bed means more opportunity to see the ugliness of the internet in the aftermath of nationwide marriage equality. But I think mostly, it’s anger at Christianity. Anger is exhausting. Last week, Lindsey and I were sitting in our living room and discussing the processes by which each of us learned that it’s normal to experience anger at God. That got me thinking about how I’ve never come to terms with experiencing anger at the Church.

It feels safer to be angry at God than it does to be angry at the Church. If I pull out my prayer rope and begin praying each knot while feeling absolutely fed up with a particular lesson God seems to be teaching me, the result is not going to be an offended deity making my life more difficult just for spite. If I curl up in a ball on my bed and cry for hours from rage about a difficult life circumstance and yell in anger, “Why, God? Why?!” I’m not going to be shamed for my emotions. But with the Church, it’s a different matter. In the opinions of many people I know, being angry at the Church (whether you mean “Body of Christ” or “official teachings”), is not okay. Expressing anger at the Church often results in assertions that I don’t actually desire faithfulness, that I’m being a whiner and need to toughen up because “following Christ isn’t supposed to be easy,” or that my pain is caused by my own sin and my own lack of willingness to let the tradition teach and transform me. Christ will not dismiss or berate me regardless of where I am spiritually in a given season of life, but plenty of his followers will.

Over the past week, Lindsey and I have written our respective reflections on how we are feeling after Obergefell vs Hodges. We had little energy to comment on much more than our fears about losing access to domestic partner benefits, but there is so much more to be said, and not just about gay marriage. I’m going to state the obvious: the internet is a dark, cruel place where people created in the image of God treat other people created in the image of God as though they haven’t even the dignity of bacteria on the bottom of my shoe. No reasonable person ever expects to find utopia on the internet. Nevertheless, I always hope that the people who make up the Church will surprise me during intense news cycles; yes, I’m more than a little idealistic.

This weekend, I’m angry because the Body of Christ needs to be engaging in repentance and reconciliation after the ways we have treated people who are different from us. I’m angry because we have allowed issues of difference, whether ideological or otherwise, to divide us. Within the same week, I see one friend stating publicly, “Any church that lets queers in needs to have its whole congregation stoned to death,” and another friend proclaiming, “If you think for any reason that gay sex is a sin, you’re a hateful bigot!” Both are members of my Christian tradition. Both claim to love Christ and do their best to follow him in their daily lives. What have we come to when one member of the Church would have another stoned to death? When theological disagreement even after prayerful reflection and discernment means that the person who disagrees is hateful?

I’m angry because white Christian America has been sitting back, content to wave either a rainbow flag or a Confederate flag as black churches have burned to the ground and black Christians have been murdered while worshipping. White LGBTQ Christians previously engaged in meaningful discussions about racial reconciliation abandoned those conversations in favor or gloating over marriage equality. Some will not pick up that discussion topic again until there’s a lull in the LGBTQ news cycle. Folks who do not consider themselves allies to the black community but were still engaged in conversations about Ferguson, Baltimore, and Charleston have ceased participation in order to mourn because “the gays are destroying America.” How quickly we’ve forgotten about the nine human beings who lost their lives while attending church not even three weeks ago, or at least pushed their deaths to the back of our minds in favor of spouting off bad theology about sex. What happened in the United States on June 26, 2015? Why will future generations remember that date? Certainly not because of the Reverend Clementa Pinckney’s funeral. And I’m ashamed of myself as a white person for forgetting his first name and needing to Google it before adding it to this post.

I’m angry because able-bodied Christian America is clueless about how to be loving to people with disabilities. After the Supreme Court ruling, more than one article about disability and marriage was published. People with disabilities in America who receive SSI benefits risk losing resources if they marry. Some people with disabilities were married or living with a partner before becoming disabled and cannot qualify for help because of the spouse/partner’s income. These are real problems that the Church could be addressing, yet most of what I’ve seen from Christians on these issues is, “Just go with other programs that aren’t income-based” (never mind that you have to be out of work and likely broke anyway before qualifying) or, “Stop whining. It’s not the government’s job to take care of you. You could work if you really wanted and had more motivation.” How many members of the Body of Christ actually care about how broken our social programs for people with disabilities are?

Speaking of ableism, I’m angry about an entirely different issue I’ve been dealing with for several weeks. I’m angry about the nonsense that passes as d/Deaf and hard of hearing ministry or “deaf inclusive ministry” in Christian churches. I’m angry that hearing people at Christian publishing houses profit by selling ministry resources that co-opt American Sign Language and Deaf culture, throwing random ASL signs into spoken songs and calling that inclusion. I’m angry that when I try to educate on how wrong this is and why it is not actually welcoming to the Deaf community, hearing people engaged in ministry become defensive and argue with me about how hearing children in Sunday School need something to do with their hands and doing a few signs seems like a good idea. And I’m angry that on the few occasions when hearing people do listen to me about this, they’re almost always more willing to accept my perspective as a late-deafened adult who grew up hearing than they are to acknowledge arguments from my friends who have grown up in Deaf culture.

Perhaps more than anything else, I’m angry that there are Christians who are more concerned with policing identity than with building relationships. If you’re a straight, white, hearing person, it’s easy to judge a gay person, a black person, or a deaf person, “Your cultural identity isn’t important. It’s not who you are. Who you are is in your relationship with Christ.” We need to stop saying that all people are equal and should be treated with respect if we are going to pretend that some aspects of identity do not exist. If I tell one of my black friends, “Skin color doesn’t matter. Everyone is the same to me,” I have just erased a huge part of that person’s life experience. The same thing happens when Christians tell me, “You’re not really a lesbian. You just struggle with liking women, and we all struggle with sin,” or “Just accept your deafness as a limitation. There’s nothing positive about it. You’re going to be healed in the eschaton anyway.”

When we erase people’s experiences, we drive them away. It doesn’t matter if you think race isn’t important. It is in American society, and white people are the ones who have made it so. It doesn’t matter if you don’t understand why a person would want to identify as gay. For many people, it’s an important term, and straight Christians ought to be willing to engage in conversation and consider why. It doesn’t matter if you believe that deafness and other disabilities will be eliminated in the hereafter. No one person knows more about the eschaton than any other person does, and it would behoove members of the Church to reflect more deeply on how social stigma has created what we consider to be “disability.” And let’s not forget that progressive, social justice-y Christians are also good at erasing the experiences of conservatives and traditionalists.

Cultural identities may or may not matter at all in the next life. As Christians, we are not called to ignore the here and now or excuse ourselves from treating others well and working for justice on the grounds that someday none of our differences will have meaning. When I look at the Church this week, I have seen it seething, oozing, and pulsing  with the emotional illnesses that make it hard for us to do life together. And it’s challenging because part of me wants to shove everything and everyone aside, screaming, “Eeeeeewww! Ick!” But then I’m left looking at the same festering assumptions and judgments within my own heart. There’s relief that comes when we look in the mirror at our human failings and own them. That’s what I’m experiencing now. I’m much less angry. But where do we go now as we journey towards reconciliation?

EDIT: Thanks to a reader for pointing out a typo where I had misgendered Reverend Clementa Pinckney. I assure you that it was an honest typing error and not my thinking that this person was a woman. I blame this one on vertigo. Apologies to all who read the first version!

Comment Policy: Please remember that we, and all others commenting on this blog, are people. Practice kindness. Practice generosity. Practice asking questions. Practice showing love. Practice being human. If your comment is rude, it will be deleted. If you are constantly negative, argumentative, or bullish, you will not be able to comment anymore. We are the sole moderators of the combox.

A week after Obergefell vs Hodges, and I think I am still breathing

A reflection by Lindsey

Hello readers. My apologies for what seems like radio silence. When I am overwhelmed, my instincts are to hide, curl into a ball, and hope things resolve themselves quickly. Sarah and I were already awaiting Sarah’s surgery date with considerable anticipation. We’re accustomed to smiling, staying strong, and doing our best in the face of stressful situations. By God’s grace, we’ve managed to keep our feet and our sense of humor through it all. It hasn’t been easy, and there are times where it has definitely been hard.

The past week has been arguably one of the hardest to navigate in the three years that we have known each other. The only other week that even comes close was when I suddenly and unexpectedly lost my job two days after Christmas 2013. However, after I lost my job, I experienced my friends and my family rallying around me and Sarah to help us strategize and regroup. Having a supportive community makes a world of difference when you are trying to remind yourself, “Everything is going to be okay. Breathe. Everything will work out. Breathe. You still have options. Breathe. There is a way forward. Breathe. You can do it. Breathe.”

This past week has brought a flurry of official pronouncements. I have been drawn, seemingly like a moth to a light, to reading every statement that is likely to provide some insight as to how clergy within my Christian tradition see the question of pastoring LGBT people in the aftermath of last week’s decision. It is simply remarkable how many statements fail to consider the question, “What should we say to congregants who are LGBT who desire to live their lives in harmony with this Christian tradition’s teachings?” I have lost count of the number of LGBT Christian friends who have approached me to parse the implications of their churches’ reaction to Friday’s ruling. Many statements contain directives that all people who enter into civil same-sex marriages ought to come under church discipline without any hint of an exception.

Did I mention that in ten days I will be keeping vigil in a hospital’s waiting room as Sarah undergoes surgery?

If you were to ask me to name my top fear, I would tell you that I am most afraid of Sarah losing health care access. Currently, Sarah’s health care access rests entirely on my employer extending coverage to domestic partners. We first opened the conversation about protecting ourselves legally over 20 months ago. We’ve been encouraged to grant one another durable power of attorney and write our wills naming each other as beneficiaries. It’s hard to believe that a document one can create using free internet templates would be the answer to our legal worries. If it were truly that easy for the two of us to protect ourselves legally, please tell me why I have never seen a conservative Christian discussing how granting durable power of attorney and keeping one’s will up to date provides adequate legal redress. Additionally, I cannot escape the observation that accessing health insurance in the United States seems to be contingent on where you work and to whom you are married even after the passage of the Affordable Care Act. We are terrified that Friday’s decision will mark the eventual end of domestic partner benefits, a fear that appears to have merit. One analysis suggests that unmarried partners comprise over 7 million American households. That analysis helps me feel just a bit less alone.

When I’ve shared my fears and anxieties with friends over the past week, I’ve encountered a range of reactions. The vast majority of people ask me why we haven’t already entered into a civil marriage. A handful of people suggest that no one would ever have to know if we contracted a civil marriage for legal purposes and certainly leaders in our tradition couldn’t possibly be thinking about someone in my situation when they authored their public statements. Some people shrug off my concern by reminding me that being a Christian is costly and that I’m not being asked to do anything unreasonable.

I have lost track of the number of times I’ve wanted to throw something in the past week.

Like Sarah, I can rejoice with my friends who have been rejoicing that they no longer need to worry about whether they will have their relationships legally recognized. I know couples who have made legal arrangements in upwards of four states in an attempt to care for each other. I had heard numerous personal stories of people driving around with every legal document imaginable in their glove compartments in an effort to ensure hospital visitation rights. Trying to sort my own affairs relative to my relationship with Sarah gives me deep and profound empathy for every LGBT person who has asked the question, “If and when the time comes, will this legal document carry any weight?” In the past week, at least 3 friends have posted pictures of their freshly procured marriage licenses online complete with extended discussions of why they are so glad they finally can access these pieces of paper in their home states. For them, this is the document that legally permits them to care for one another and alleviates any anxiety. I can only imagine what that feeling must feel like. I know I would be rejoicing if Sarah and I managed to figure out what we needed to do in order to ensure that we could care for each other even if calamity hits.

But, that rejoicing does not negate the fact that both Sarah and I have spent the better part of two years discerning what a celibate partnership looks like for us. We have done our best to live our lives as transparently as possible with our priests while also devoting considerable energy towards writing about celibacy and being LGBT in the Church. I’ve personally spent over ten years asking Christ to illumine my own vocation, striving to cultivate compassion and grace for every person I’ve met along the way. I earnestly believed that others were trying to do the same. Unfortunately, in the past week, it seems like any compassion or grace that others might have previously shown me as evaporated. Where is the compassion when conservative straight Christian friends tell me that it’s entirely reasonable for bishops to tell me that I must choose between sacramental care in my Christian tradition and doing what I can do to ensure that Sarah has continuing health care coverage? Where is the grace when my newly legally married friends accuse me of willfully neglecting Sarah to appease the homophobic whims of a man wearing a funny hat? Even more importantly, where do I find the way of Christ as I try to live faithfully within a vocation that has proved to be abundantly life-giving?

There are no easy answers here. In my ideal world, we would figure out a way to divorce health care access from one’s employment and marital status. Everyone would be able to see doctors and get the care they need. Given that historically Christians built an incredible number of hospitals, I’m surprised that churches haven’t been more active in creating systems for health insurance. If employers can offer health insurance policies covering their employees, why haven’t churches explored options to create health insurance for their congregants? Additionally in my ideal world, we would be able to recognize diverse structures of adult relationships. Your ability to give and receive care from another adult would not depend on your familial or marital status. I do not think it’s necessary to use civil marriage as a catchall category for all caregiving relationships between two adults if the two people are not related through family of origin.

I know we don’t live in my ideal world. In my ideal world, Sarah would not be needing to have surgery in ten days either. I’m an engineer, and brainstorming crazy out-of-the-box ideas is one way I cope with uncertainty. A week after the decision in Obergefell vs Hodges, I feel more uncertain than ever. I think I’m still breathing, hoping, and praying that Sarah and I will find our way through the legal quagmire…. I think.

Comment Policy: Please remember that we, and all others commenting on this blog, are people. Practice kindness. Practice generosity. Practice asking questions. Practice showing love. Practice being human. If your comment is rude, it will be deleted. If you are constantly negative, argumentative, or bullish, you will not be able to comment anymore. We are the sole moderators of the combox.

Making Sense of Life as a Celibate, Partnered Lesbian After Marriage Equality

A reflection by Sarah

It’s June 29, 2015. I just got back from the vet with our dog, Gemma. She has a bacterial infection on her two front elbows, which should clear up with antibiotics in a week or so. I’ll spend the afternoon lying down to regain some energy before going out this evening for some ASL practice. I’ll spend the next two weeks counting down the days to a surgical procedure that could either give me some quality of life back or make my balance problem worse. It’s a pretty typical Monday for me…except for the fact that now, I could marry Lindsey legally in any state in the U.S. if that was what we wanted.

I woke up this Monday morning from a dream that a member of our former parish had broken into our apartment, taken photos of our living quarters, and sent them to our bishop. Of course this didn’t really happen. All that happened is last night, Lindsey received a personal email from an anonymous troll in our Christian tradition, threatening to report us to our bishop simply for being gay. I can’t decide which is worse — this, or the mixed bag of messages we’ve gotten over the past four days from other members of the LGBTQ community and allies.

I don’t know what to feel today. I am truly happy for my friends who no longer have to worry about whether marriage to their partners will afford them equal legal rights across the country. I understand the stresses associated with wanting to care for someone you love and living with worry that you will not be permitted to do so when it matters most. I’m worried about the behavior I’ve seen from members of my Christian tradition on the internet and how their vitriol will impact LGBTQ people of faith. I’m grateful that Lindsey and I are now part of a parish where we can blend in without worry, and even make friends and be an active part of the community with no one gossiping about what sins they imagine we are committing. I’m also grateful that so many people in our lives truly support us and respect our commitment to celibacy whether they understand and agree with it or not. I spent the weekend exhausted, but today I’m mostly weepy.

Being a celibate, partnered lesbian after marriage equality means being pressured to marry my partner legally even though we do not consider our relationship a marriage and are committed to obeying what our faith tradition has asked of us. It means that I have to explain over and over again, “Yes, I believe that civil and sacramental marriage are two different institutions. But my bishop sees it differently, and we are not going to disobey him.” It means being prepared upon saying that to be dismissed by the other person because he or she sees me as suffering from Stockholm syndrome, being brainwashed, contributing to the oppression of the LGBTQ community, caring more about “man-made religion” than I do about Lindsey, and being closed-minded or just plain obstinate. About 90% of the time, it means watching the other person laugh in my face or roll eyes when I say that obedience is a gift freely given — it can never be forced.

Being a celibate, partnered lesbian after marriage equality means knowing that the majority of the LGBTQ community would not lose a moment of sleep if Lindsey’s workplace were to decide to stop offering domestic partner benefits. It means working harder than ever to make sure that the two of us are protected, having awkward conversations with the powers that be at Lindsey’s places of employment, and running to the Department of Health as swiftly as possible to get an official certificate of domestic partnership before such things inevitably go the way of the dodo. It means living every day with even more uncertainty than we faced before, since no one seems to have any idea at this point what marriage equality will mean for those of us to will not be marrying for whatever reason. It means going into a major surgery in two weeks wondering whether I’ll have access to health insurance at this time next year. It means coming to terms with the fact that if I lose access to Lindsey’s health insurance, we’ll end up in dire straits financially because even the best of plans on the exchange will not cover enough of my medical expenses for us to make it financially.

Being a celibate, partnered lesbian after marriage equality means avoiding people in my faith tradition unless they are close friends or part of my wonderful parish family. It means living in fear of someone accusing Lindsey and me of scandal and doing everything possible to force our priest into not communing us. It means being Church with people whose hearts are filled with hatred for people like me, and with people who want to love me but have no idea how to do that. It means doing my best to accept what comes my way as a cross that can unite me to the suffering of Christ. It means I have been given a backhanded gift in the form of an opportunity to learn more about living the two great commandments. It also means being hypervigilant: you may think I am speaking from a place of paranoia, but I have already lost count of how many times within the past four days I have seen on Facebook that people like me are abominations, lustful perverts, and child molesters who are unworthy to darken the doorstep of any church.

Being a celibate, partnered lesbian after marriage equality means accepting my current reality as a test of faith. It means focusing on my relationship with God and trusting that no matter what happens, he will provide for Lindsey and me. It means staying strong in my knowledge that we are doing what he is calling us to do, and that by living our vocation we are responding to his invitation to unite ourselves more fully to him. It means being just as vulnerable as ever with my spiritual father and encouraging Lindsey to do the same. But most of all, it means that when I am weary I will take off my hearing aids and sit in silence with the one who gave his life for me — the one with whom I am passionately in love, the one whose presence in my life has begun a radical transformation.

Comment Policy: Please remember that we, and all others commenting on this blog, are people. Practice kindness. Practice generosity. Practice asking questions. Practice showing love. Practice being human. If your comment is rude, it will be deleted. If you are constantly negative, argumentative, or bullish, you will not be able to comment anymore. We are the sole moderators of the combox.

A Queer Calling Featured in a Podcast

Hello readers! We’re looking forward to getting another post out at some point this week. Thank you for your patience as we continue to blog when Sarah’s health permits.

Last week, we were interviewed by Kevin O’Brien for a podcast. Kevin is a Christian ally working on a film to advocate for homeless LGBT youth. You can listen to the podcast by following this link. Many thanks to Kevin for interviewing us, and to Sarah’s sign language interpreter Christa for hanging in there the whole hour.

There is no written transcript for this podcast as of yet. If anyone has time to transcribe it so that Sarah and other deaf and hard of hearing people can have access, we will post it here and extend lots of virtual hugs in gratitude.

Kevin’s film is still looking for financial support as well. If you enjoyed our podcast, please consider making a donation to At the End of the Day.

Comment Policy: Please remember that we, and all others commenting on this blog, are people. Practice kindness. Practice generosity. Practice asking questions. Practice showing love. Practice being human. If your comment is rude, it will be deleted. If you are constantly negative, argumentative, or bullish, you will not be able to comment anymore. We are the sole moderators of the combox.