Category Archives: Health

“You have my prayers and support…unless you’re a sinner.”

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A reflection by Lindsey

We have received some difficult news about how quickly Sarah’s Meniere’s disease is progressing. In the last 48 hours, both of us have had to deal with countless insensitive remarks that leave us feeling drained, isolated, and alone. I’m fluctuating between emotions of being absolutely irate, feeling overwhelmed, and sad. I find the Psalms of lament ringing deeply true, especially if I stop after the Psalmist has laid out the case for why life presently sucks. It’s hard to push forward to the end of the Psalm where we get the goods of being able to trust in God’s awesome majesty.

In seasons like this one, I find myself listening to a lot of Christian radio. It may be simply that I’m in my car a fair bit, driving from Point A to Point B. But when life is hard, I can’t help but notice the lyrics and periodically hear what the DJs have to say. I hear the announcements of “We’d love to pray for you; just drop us a line!” and “We know that prayer works. Don’t hesitate to give us a call,” and I can’t help but feel sad. I’m sad because I wish I could call up the station and say something to the effect of,

Hey, I’m so glad that you are praying for people. Right now, I am feeling like I’ve been hit by a ton of bricks. My partner Sarah has a condition called Meniere’s disease that’s progressing rapidly. We just found out that Sarah has lost all hearing in the right ear. Over the next several weeks, the doctor is going to start a series of injections to try to stop the vertigo attacks but the injections are risky. We’re trying to hope for the best, but I can’t help but be afraid that Sarah might lose more hearing in the left ear before Christmas. We’re trying to be proactive by learning ASL. Sarah has friends who know more ASL than I do, and it helps that Sarah has a knack for languages. I wish I could do better so I could be able to sign for Sarah during periods of significant hearing loss, especially when we’re at church together. This burden is hard to carry because there are so many unknowns, and I’d feel better if people were praying for Sarah, for the medical team, and for us as a family as we navigate through this together.

And truth be told, I can’t ever see myself sharing this prayer request with the radio station or my church’s congregational listserv. There’s something very wrong with the universe where I feel safer putting this prayer request on the blog before I’ve even shared it with the entirety of my Facebook friends list. I’ve thought about this prayer request for days. Every time it crosses my mind, the same question pops up: “Is there any way to make this request without using the word partner?” I find myself paralyzed because the answer to this question is empathically “No.” My emotional and spiritual realities right now are what they are because I am Sarah’s partner. I am going to be here through thick and thin. I am going to figure out how to drop everything to be by Sarah’s side if and when I am needed. I am going to do my very best to learn ASL because I am sure as hell not going to lose my ability to communicate with Sarah. I do not care if other people think I am making mountains out of molehills. At the end of the day, I’m the only person who can look myself in the mirror to answer if I’m living a life of integrity. And with that conviction, you can bet the farm that I am going to call Sarah my partner because I know Sarah would choose the exact same word if our positions were switched.

The instant I choose to call Sarah my partner, I see a tremendous amount of ugliness in the Body of Christ. I can’t bring myself to call the Christian radio station because I’m scared of hearing, “There’s no way we can pray for you and your partner. If you really cared for each other, you wouldn’t be living together.” Putting the word partner out there on a congregational listserv means that even the people most marginally attached to my Sunday morning community may, and likely will feel compelled to speak judgment into my life. People who come most Sundays know that Sarah and I are partners even if we choose not to use that word at church, and even if they choose not to think about it more often than once a week. There are members of our community who would be willing to pray for me or Sarah during individual difficult circumstances, but seem afraid to pray for both of us together lest it appear that they are condoning sin.

So many Christian communities are carefully balanced apple carts where using a word like partner in a prayer request can ignite years of debate. On the blog, I feel safer because there are 193 other posts to reflect on our experiences as a celibate, LGBT, Christian couple. If someone decides to be a jerk in the comments, we can choose to moderate the comment or to answer his or her comment in part by highlighting other posts we’ve written. I like feeling the security of having a reasonably civil venue where I have some control over how the discussion unfolds. It bothers me that I have been in Christian environments for over 15 years where I know that my fears of judgment, gossip chains, and rumor mills are entirely well-founded.

And when I think about how every other LGBT Christian I know can relate to my fears on one level or another, I get irate. How have we gotten to a point where two syllables in a prayer request have the potential to split congregations? How do we claim to be a “loving community” when we deny principal caregivers space to share their burdens with others? How do we even begin to communicate to others that we would much rather find ourselves closer to the heart of the Body of Christ?

I don’t have good answers to those questions. I’m stuck trying to figure out how to find my strength in Christ even when I feel explicitly rejected and judged by those who make following Him their public priority. Right now, I find myself relying on selective hearing, a driving bass line, and a pretty solid drum beat.

I’m in a war, every minute. I know for sure I’ll never win it. I am David up against Goliath… You. Are. Bigger than every battle I’m facing… All by myself, I fall to pieces, but You are strong when I am weakest…You. Are. Bigger than every battle I’m facing…

And there’s a distinct part of me that prays fervently that as I find some places where I can be transparent about what I’m going through, life might be just a little bit better for the next LGBT caregiver to request prayers for his or her partner.

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, Languages, and Logic

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A reflection by Lindsey

As I have been discerning my celibate vocation over the past few years, I’ve heard a lot of objections on various grounds. Many people say that celibacy cannot possibly be life-giving because physical touch is one of five “love languages.” Gary Chapman championed the concept in his 1995 book, which has spawned all sorts of spin-offs. I know people who have spent considerable time discerning how words of affirmation, acts of service, receiving gifts, quality time, and physical touch affect how they experience love. Some believe that if they understand their own love languages and how their loved ones have different native tongues, then they will be able to love much better.

There are merits to Chapman’s ideas. Anyone who has ever received a Lindsey hug knows how much I value my ability to speak the language of physical touch. But recent experiences have me questioning if love’s languages are quite so logically discernible.

Sarah is adjusting to life with Ménière’s disease, and it’s progressing quickly. If you’re like me, this is probably the first time you’ve ever heard of this condition. It’s a degenerative inner ear disorder that impacts hearing and balance. It causes unpredictable attacks of vertigo accompanied by fullness and ringing in the ears and temporary hearing loss. Over time, the hearing loss becomes permanent, ranging from mild to profound in severity depending upon the specific patient. Treatment involves trying to slow the degeneration, and the options are none too appealing. Speaking candidly, some are outright terrifying. Sometimes in frustration and sadness I find myself asking, who wakes up in the morning wondering whether within a few weeks/months/years, he or she will be trying to decide whether to go with steroidal injections that accelerate hearing loss or with a surgery to cut nerves of the balance and motion sensors? This condition is life-altering in many ways.

While some might argue that it’s Sarah’s diagnosis and not my responsibility to manage, it affects my life also. Daily, I get to make all kinds of fun choices. Drastically limiting sodium intake is a first line defense. I oscillate between being shocked by the amount of sodium in everything and feeling triumphant when I’ve managed to prepare surprisingly creative meals where all the ingredients combined have less than 400 mg of sodium. (And, being the engineer that I am, I tend to press a bit harder to see if I can keep that total reliably below 300 mg.) I have tried to transition our kitchen into a low sodium kitchen because it’s easier to avoid eating particular items if you don’t have them in the house at all. Restaurants rarely have meals that are low enough in sodium, so we’re having to rethink what we want to do when we want to be out and about in the city.

Despite our best efforts, Sarah continues to experience periods of temporary profound hearing loss, and over the past few weeks we’ve witnessed the level of permanent hearing loss increasing. I didn’t really gain any empathy for what Sarah has been experiencing until I played around with a hearing loss simulator. And…wow. My mind was completely blown. I didn’t realize that it was possible for people to lose the ability to hear certain letters. If you’re a hearing person, could you imagine living your life in a constant game of Wheel of Fortune? Sarah has been working with a great ear, nose, and throat (ENT) doctor who specializes in inner ear disorders, but Sarah’s audiograms show continuing declines in nerve function. We’re bracing ourselves because we anticipate doing what we can to preserve balance in at least one ear, which likely means we’ll make choices that accelerate Sarah’s hearing loss.

When faced with complete helplessness, I’m generally okay with searching for a way to do something rather than nothing. Sarah has a good number of close friends in the Deaf community. I’ve been doing what I can to develop survival ASL skills. So far, most of my letters are recognizable (by Sarah) even though I’m still trying way too hard and cramping my hands. We’ve been practicing my alphabet with the School Song from Matilda the Musical. I also know the exceptionally important signs for “hamster” and “squirrel” and can sign some of my most frequently used phrases. I sometimes join in as Sarah studies for ASL class. In addition to Sarah’s course, we’re looking forward to attending ASL sessions offered for free at the public library so I can expand my basic vocabulary.

Periodically over the last several weeks, these realities have hit me hard. I reflect frequently on what it means to me to tell Sarah that I’m opting in, 100%. I’m still in, and I have no intention of going anywhere. The mindboggling “logic” of love continues to surprise me. I’m learning something about how Christ neither leaves nor forsakes us. I see a great deal of wisdom in doing what I can to adapt to changing situations rather than focusing all of my efforts into praying that Christ would magically restore Sarah’s hearing. To be sure, I pray about the situation constantly. Yet my mind constantly wanders towards how hearing people have a number of misconceptions about deaf and hard of hearing people. When I get into engineering mode, I think about designing something that has broad import and meets Sarah’s needs. I think about how having even basic conversation skills in ASL will enable me to connect to a whole new group of people.

As I’ve learned to live into my celibate vocation, the word “choice” has taken on new meaning for me. The easiest thing for me to control in this situation is my attitude. I have made different choices regarding my personal level of investment. It’s easier for me to zoom in my energies on mastering low sodium cooking than it is for me to learn ASL. Vocations tend to work best when people can build upon their natural strengths. Nonetheless, the cost of living one’s vocation is high. I really dislike the idea that Sarah and I need to figure out other ways to have fun. Restaurants offered such a perfect solution for my introversion and Sarah’s extroversion. A desire to empathize with Sarah has changed my understanding of what it means when a person is deaf or hard of hearing. I’ve been praying about how Christ wants this new understanding to impact my life, and I sense that I will have more and more opportunities to interact with people who are deaf or hard of hearing.

We’ve written a number of posts where commenters have asked us, “How is what you’re talking about different from a marriage?” I’d like to pre-empt that question a bit. Over the last several weeks, I’ve noticed some interesting trends in my thoughts:

  • I keep thinking about the people I haven’t met yet. I have at least four (five, if you count Sarah) friends who are deaf, hard of hearing, or in the process of losing hearing. But I find myself prayerfully musing on the people I will meet as Sarah develops greater confidence in conversing in ASL.
  • The engineer in me is pretty frustrated with the state of our technological solutions for people who lose their hearing after growing up in the hearing world. I’m keeping a notebook of ideas to see if I can work with people to develop the ideas further.
  • I reflect on people I’ve met while supporting Sarah with other health concerns.

We talk often about how the celibate vocation enables people to love and serve the world differently. While I certainly do not want to lose the ability to communicate effectively with Sarah, my thoughts turn quickly towards other people in similar situations. The fact that Sarah is hurting is a comparatively minimal part of my outrage at the state of things. I should note that my outrage is reasonably massive, but it’s clear that the situation developing within our community of two will spur action that extends far beyond our little family. Mother Maria of Paris frequently wrote on the need to serve people on the margins of society. I find myself asking for her intercession as I work to discern my next steps.

I am not the only person who has had to navigate receiving tough health news within his or her family. Many people give their all to caring for and advocating on behalf of their loved ones. I have been amazed to watch parents and children rallying together during health crises, and in no way do I want to belittle the selfless gifts of those who are not living celibate vocations. They give themselves to each other as a family. Monastics will frequently devote themselves to caring for one another, explaining their actions in terms of attending to their brothers or sisters. I’ve noticed that through this most recent health ordeal, God is challenging me to open my heart that much more towards people as he keeps reminding me over and over again that Sarah is human. I’m not quite sure what to make of that rather consistent nudge in my prayer life, but I’m seeing how it directs me towards loving and serving the world in a way that is unlike any I’ve ever known.

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.

To the sanctimonious thin person who handed me a note at the gym…

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A reflection by Sarah

This post has little relevance for the general subject of our blog, but we decided that I should publish it here anyway. Yesterday, I (Sarah) was at the gym doing my usual workout when the woman running on the elliptical next to me finished her own workout, began looking at her phone, scribbled something down on a sheet of notebook paper, folded it, and handed it to me. I waited a bit before reading it, but when I did, I saw that the note was laden with sanctimonious presumptions about people of size. A quick Google search showed me that the woman’s note had very little originality: over half of it was a word-for-word repeat of a Facebook post that had gone viral last month, apparently. Today, I’m using our blog as a medium for responding to the person who gave me the note. Thanks to all our readers who have patiently allowed me the space to process some things related to my eating disorder recovery. The past few weeks have been challenging for me, and I’ve been uplifted by the encouragement I’ve received from readers. After this post, I’ll try to give that topic a rest for a bit, and we’ll get back to our regularly scheduled posts on celibacy, vocation, and LGBT Christian issues.

Dear Sanctimonious thin person who handed me a note at the gym,

It took me about thirty seconds to find the source of your unoriginal note. It’s all over the Internet. I found it here and in several other places. I also found a response it received from another blogger who felt a sense of solidarity with the original note’s target. I have no idea what motivated you to write out parts of it on a sheet of notebook paper and hand it to me yesterday after you had finished your workout on the elliptical next to mine. Presumably, you found something inspiring when you saw the original circulating through social media. Maybe you thought it would inspire me as well. Maybe you were once my size and were trying to give me an “it gets better” sort of message. Maybe you’ve always been the size you are now. I don’t know anything about you, but I’m going to show you a courtesy that you did not show me: I’m going to give you the chance to tell your own story instead of making one up to explain your actions. I waited a couple of minutes to read your note after you handed it to me, but when I did read it I stopped mid-workout and made a run for the locker room in attempt to find you. You were already gone, so I’m using the blog I write with my partner as an opportunity to voice what I didn’t get the chance to in person.

I was not, as your note suggests, at the gym on a noble mission to reduce my body size. At one time I was as thin as you, if not thinner. But I certainly wasn’t healthy. I came to the gym regularly, wearing cute cotton lycra outfits like yours, bearing a large water bottle and an apple or protein bar. I’d alternate between the elliptical and weightlifting, sometimes hitting up the pool for laps instead. Then, I’d go home and consume an extra large pizza, which would ultimately end up down the garbage disposal in my apartment. In those days, I spent more time purging food than eating it in the first place. Eventually, this became the fate of the apple and protein bar as well. After years of this daily routine, I reached a point at which I found myself in the emergency room every other week. My eyes were sunken, my neck was sore from swollen glands, and I spent more than a few days on a potassium drip that month. But to my knowledge, no one at the gym had ever wondered what I was doing or speculated as to why I was there amongst all those thin people—I was one of them.

That was almost seven years ago. Since then, I’ve undergone a significant amount of treatment and devoted certain seasons of life solely to recovering from my eating disorder. I made it a goal to eat normal meals and snacks every day no matter what, and generally I’ve kept to that for the past seven years. I don’t always do perfectly, and I’m not 100% behavior-free, but life is infinitely better than it has been in years past. I’ve also gained a lot of weight since then, and I’m sad to say that I didn’t realize the magnitude of social stigma against fat persons until I became one myself. I like my broccoli, avocados, and flaxseed, and I can’t stand the taste of fast food. Rarely have I exceeded normal portion sizes since my time in eating disorder treatment, yet because of my wonky metabolism I’m the largest I’ve ever been in my life. But you know what? I’ll take my current size—complete with t-shirt and sweatpants instead of cotton lycra gym outfits—over my former, unhealthy, “thin” body any day.

Sure, there are people who think I’ve gone from one extreme to the other where thinness is concerned. Yes, there are medical professionals who don’t care to hear my story and would rather assume incorrectly that I visit McDonald’s on a regular basis. Some people gawk at me for eating ice cream or a cupcake when my partner takes me out for a special treat. Women in my family make ignorant comments about my body size and will probably do so from now to kingdom come. And indeed, there are and will continue to be thin people like you who feel the need to “inspire” the rest of us by presuming to know our stories and playing on size-shaming stereotypes. No matter. I’m happier and healthier as a fat person than I ever was as a thin person. And if my body were to change and suddenly drop a bunch of weight while I’m still eating normal portions, that would be totally cool too. Whatever my body does naturally is fine by me, and I’m not interested in wearing my size—large, small, or anywhere in between—as a badge of honor.

I’m going to give you the benefit of the doubt and say this as though you had the best of intentions when passing me that note: you may be unaware, but a person’s body size is not the sole indicator of health. Weight and shape aren’t everything. Weight loss is not the only reason a larger person might be at the gym. It might not be a reason at all—it certainly isn’t for me. Being healthy is not about being in a thin body, and size doesn’t tell you what or how much a person is or is not eating. Commending a larger person for going to the gym as “a step toward a healthier lifestyle” may sound admirable, but in reality that phrase is loaded with assumptions. The fat person you want to praise for “paying off the debt of another midnight snack, another dessert, another beer” could already be living a healthy lifestyle, and may have been doing so for years. For all you know, she might be eating more healthily and getting more balanced physical activity than you are. Please consider the content of my response before offering another unsuspecting gym patron a bit of your poorly contrived inspiration. And next time you have something to say to a total stranger, try speaking from your heart instead of plagiarizing from a Facebook post gone viral.

Sincerely,

Sarah

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.