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.
My mother got this when she was old and it didn’t get that bad like you say. Relax. Your partner isn’t going to die from it.
Hi Kay, I’d rather stick more closely to the counsel of Sarah’s doctor. People’s experience of this condition vary widely. The condition does have the potential to lead to complete disability, especially if it reaches Stage 3. Please be respectful rather than assuming your mother’s experience is wholly representative. -Lindsey
Can’t you get her some hearing aids?
Folks, being a deaf person isn’t easy. So don’t ever say, “It won’t get bad”, or “You just can get hearing aids?” It’s not the best way to address this. If you ever want to empathize, just say, “Okay, I’m sorry you’re dealing with this now. I know I don’t understand what you’ll go through, but please know you always have my support.” It’s the best thing you can say to a person who is grieving. Losing hearing is difficult, and it needs to be addressed with grace and love. It’s not something you can take it lightly. Everyone is different, but please please do not minimize their pain just because they may not have it bad. But it may be bad for this person who is losing her or his hearing. Thank you.
I was empathizing. I know what it’s like because of my mother. You can’t whine about a sickness. You have to make yourself look at the good things and think about it like you will live and not die. God, people, the world isn’t ending. If Lindsey and Sarah don’t accept it that Sarah is differently abled now they aren’t going to be happy. I say this is like them not wanting to face other things too.
Kay,
in normal circumstances I would wait for Lindsey to respond to this because this is Lindsey’s personal reflection. It seems to me that you misunderstood the point of this post. Lindsey was not whining in this post, and I am not whining about this either. We are not playing the comparative sufferings game. We’re well aware that there are worse situations in life than the one we are currently facing. Sharing, reflecting upon, and struggling with a particular problem in life is not the same as whining. Furthermore, there is no failure on our part to accept my, as you call it, being “differently abled.” There are real ways that this condition is debilitating for me right now. I’m a teacher, and it’s extremely difficult to do my job when I can’t hear my students and have no idea when my next vertigo episode is coming. I’m not having the easiest time coping with that, but I’m certainly not wallowing in self pity either. There is nothing wrong with admitting that life is hard sometimes. Based on your previous comments to us on other posts, I assume the last part of your comment about us not accepting things is a reference to your opinion that we do not accept our sexuality. This is not true, and we have explained why this is not true many times already in replies to you. You can have a different opinion on that from ours, but the problem is that you do not express it respectfully. Any further comments you make that suggest we are failing to accept our sexuality will not be approved.
Sarah
The way you said about the couple is incredibly harmful. We can grieve for our pain. We can whine. We hurt. It’s a part of human existence.
But like Sarah said, they’re not whining. They’re exploring their new journey in their lives. It’s an adjustment. They’re allowed to think and feel. It’s a progress.
And you don’t know what it is like because of your mother. You do not have same experiences as your mom had. You do not have what Lindsay, or Sarah and I have either. The way you have with your mom is YOUR own experience. Not your mom’s or not Sarah’s experience.
The world isn’t ending, but our feelings, our thoughts are also validated. You’re just basically saying, “The world won’t end tomorrow so we just should overcome struggles that come in our ways.” Not true. If we want to be happy in life, we should go through our pain at our own time.
Seems to me the best way to deal with this condition is for Lindsey and Sarah to become more intimate in a non-sexual way:
For Lindsey to become Sarah’s “hearing ear human” and use modern smartphone tech for the rest.
Hmm, that gives me a neat idea for an app. I wonder if I could get the standard speech recognition APIs to distinguish voices?
We’re navigating this situation slowly, and seeing what’s in store for the future when it comes. I continue to keep my notebook of related design ideas. Slowly, I’m learning how to be a “hearing ear human” when necessary. -Lindsey
I don’t sign, but I attended a few classes once, and my friend who attended with me went on to become quite proficient. ASL is a wonderfully expressive, eloquent language. I have seen it open new worlds for people. Often we don’t learn a new language until we are forced to do so, and many people avoid ever having to learn more than one, though most of the world is multilingual. To say it is mind expanding is an understatement. This is more true of a sign language than of sound-based languages. I am confident that learning ASL will change your life, Sarah’s life, and your common life in positive direction by making it possible to communicate in ways you never could have imagined.
Thanks Evan, I’m very hopeful that great things will result from learning ASL. -Lindsey
Lindsey, this is a beautiful piece, and you and Sarah both have my prayers. I will be holding you in my heart.
Thank you, Stephen. We greatly appreciate your prayers. -Lindsey
Agreed with the above! This blog post is beautiful. Doing things like learning asl and changing what you eat and cook is “an act of love” ( says my fiancé) you two really do have a good relationship and commitment to each other. I wish Sarah the best with her health and future decisions. 🙂
Thanks. Glad you liked it. We are grateful for the well wishes. -Lindsey
Loved the incredible tenderness and empathy in this post. While I don’t presently know anyone who is dealing with serious hearing loss–at least, not well–I have been learning what it’s like to care enough about one person’s suffering to care about all people who suffer in that way and to feel outrage at the lack of support in society, so I can definitely sympathize. (If you ever want to write a post about how friends and society can help the hearing-impaired, I’ll read and cheer and store up the wisdom for opportunity to put it into use.)
It was good to hop over and read the piece about Mother Maria and the other celibates who advocated for the marginalized, too.
You both have my prayers. So sorry to have disappeared from the combox for weeks–I’ve been traveling, cramming at work, and starting college. I appreciated the posts and comment feeds on the subject of the traditional sexual ethic and mental health so much, and read every word, sometimes multiple times, even though I couldn’t wrangle my crazy emotions into words in the limited time windows in which I might have been able to comment. Your blog continues to be an encouragement to me, so thanks for being here. 🙂
Jenna, thanks so much. We are no strangers to life being crazy. I probably will write that post at some point! Good luck with the new school year. Stop by when you can. The comment box is always open. (And we *will* reply to your email from a while ago. Our inbox has been incredibly active!) -Lindsey
Thank you, and I will look forward to all of that! But make sure your own rest and sanity are provided for before emailing me. I definitely understand the difficulties of crazy life and active inboxes!