I’ve been following Esther Emery and Abby Norman for a while now and for weeks I’ve wanted to join in their Whole Mama conversations. This week, the topic is “ordinary” and for the life of me I cannot identify with that prompt. Maybe by the end of this post, I’ll get there.
I hear a lot of mothers who consider their lives ordinary. I used to think so about my own. It used to bore me.
In the last year, I’ve had a few opportunities to stop and look around at my home and my work like a tourist. I’m a foster mom living with four kids, two dogs, and a cat in a three-story townhouse. I’m involved in racial justice work in my community. I contend with chronic illness on a daily basis. I have friends who are smarter (and weirder) than me. I’m a woman of faith in active pursuit of the living God. I have cultivated skills and talents in mothering that may one day make me fit for circus work.
My life is pretty darn fascinating when it comes down to it. It’s also busier than I want it to be, but isn’t everyone’s? Maybe ordinary is easier to find than I thought.
As I was listening to Esther’s interview with the amazing Mihee Kim-Kort this morning, I was interrupted four times by by four-year-old. He wanted a snack. He sang a song, repeatedly. He wanted to point at Mihee. As the Asian kid in a mostly-white family, he does this “point at an Asian person” every now and then. It’s a bittersweet thing to observe as a mom. It’s a moment of identification and estrangement. These are ordinary things in our extraordinarily complicated family.
As I’m writing, he interrupts me to let me know he had overestimated his appetite and he didn’t want the second hot dog his big brother made him. I have to leave this post to throw a partially-gnawed hot dog away. It’s not glamourous work. It’s as ordinary as ketchup. And these little interruptions and disruptions are the most ordinary occurrence around here.
During the home study process before we became foster parents, a social worker met with my husband and I, together and individually, and went over our life stories. As part of the preparatory work, we were asked to look at a timeline of our lives and mark our milestones, but also our moments of grief and loss. Until then, I think I had spent most of my life moving forward, straining ahead and not looking back. As a young person with chronic illnesses, I had been taught that coping meant grief would only slow me down. If I let those struggles and feelings in, they might hold onto me forever. Looking down at my timeline, I saw that the losses I faced, particularly the health-related ones, gave me the adaptability and resilience of a survivor. Yet those disruptions had never been given full permission to do the work of building patience or empathy.
Sure, I knew long-suffering, but rarely had I cooperated with it in such a way that would allow me the full experience of loss. I had to learn to sit with surrender instead of lacing up my bootstraps to troop up the next hill.
As a mother, I have been determined to give my kids the tools to not only express their feelings, but to feel them. I fail at this often (another ordinary occurrence). I am impatient, frustrated, aggravated by the interruption that comes with sharing your home and your life with, God help me, five other people. Most days it seems as if their entire life goals are to get me up from wherever I’m seated. With kids, there is no rest for the weary. I have things to do and places to go. I have an agenda. These tiny people hold all that up (as do frequent setbacks with my health).
I joke that my headstone will bear but one word to describe my existence on this earth: thwarted. I’m only half-laughing when I say it. In literature when there are quests, obstacles, and gauntlets, there are also reprieves, lulls, denouements to give the reader a break and to better develop characters or nearly conclude a chapter. In a life that seems so relentlessly challenging, there are few, if any, clean breaks.
Because of that messiness, I feel compelled to embrace disruptions, to recognize them for the ordinary break from the ordinary that they are. Sometimes, in a particularly daunting season, I have to orchestrate my own interruptions. These momentary breaks for reflection remind me of two truths: this life is not about me and I don’t have to be a martyr to be loved.
Kathleen Norris writes in her work, The Quotidian Mysteries:
The Bible is full of evidence that God’s attention is indeed fixed on the little things. But this is not because God is a great cosmic cop, eager to catch us in minor transgressions, but simply because God loves us–loves us so much that we the divine presence is revealed even in the meaningless workings of daily life. It is in the ordinary, the here-and-now, that God asks us to recognize that the creation is indeed refreshed like dew-laden grass that is “renewed in the morning” or to put it in more personal and also theological terms, “our inner nature is being renewed everyday”. Seen in this light, what strikes many modern readers as the ludicrous details in Leviticus involving God in the minuitae of daily life might be revisioned as the very love of God.
Norris argues that the ordinariness of doing work historically labelled as “women’s work” makes it ripe for contemplation. Sometimes I find that to be true, other times My rebellious heart wonders if it’s not just romantic nonsense meant to lure us into doing our chores.
I’d prefer the more profound conclusion, but in practice, I struggle with the load and feel my heart complain, “Feminists fought so we wouldn’t have to do this drudgery!” But, truly that’s a white woman’s whine rooted in the oppression of people who do hospitality work. Someone will always do this drudgery. May as well be me. I cannot give quarter to nasty attitudes about the value of labor. But I digress…
I think Norris is right that if we submit to the ordinary and milk it for what it’s worth, we will be rewarded. The ordinary interruptions of my life have always blessed and humbled me, particularly the arrivals of my foster children, which in both cases, threw everything in our household into chaos and backburnered most of my projects at the time. Ordinary disruptions remind me I’m not in charge and recalibrate my attitude about my own power, privilege, and position in this world.
All of you, clothe yourselves with humility toward one another, because, “God opposes the proud but shows favor to the humble.”
Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. (1 Peter 5)
The ordinariness of interruptions seem to get me out of my own way while bringing me back to myself. They also bring me back to these people I have made commitments to love. For our family, disruption might be a way of life, familiar and routine, but it’s in these rhythms where our characters are being developed. It’s where all of us will learn humility, flexibility, adaptability, and compassion, if we let interruption teach us.
We might be ordinary human beings, but we are capable of more than we know; and, we are valuable far beyond our capability.
There are things people tell you when you have a painful chronic illness to keep you from falling into a depression over your circumstances. They say, “This too shall pass,” altogether ignoring the “chronic” element of your condition. They tell you, “Well, you look great,” which is only rewarding if you enjoy busting your ass to keep up appearances while you suffer. They say, “Other people have it worse. Think about how those folks have to get up every day and face the world without a leg, or with cancer,” or whatever else it is they fear might happen to them one day. Those fears are always worse than what you have because what you have, they will not face. At least, not when it is happening to not-them.
A few years’ back, at the end of my regular appointment, my rheumatologist asked me, “How do you stay positive and hopeful about all this? You have a good attitude. I have some patients who just can’t seem to cope.” For her, “coping” meant something different than it means to me. “Well, I’ve had RA since I was two years old. I guess maybe when it’s all you know, it’s easier to deal with?” I said, theorizing as I have many times before when I encountered someone who was devastated by a mid-thirties diagnosis. My answer felt inadequate, so as I was paying the bill, I doubled back, with the words of the apostle Peter in my head, “Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have.” I popped in as she was wheeling her computer into another patients’ room and told her, “I have hope because of Jesus. That’s really what it is.” And it’s true, but not because He makes me H-A-P-P-Y like a pastor I know used to say. Jesus helps me cope because in Him, I serve a disabled God.
I know what my doctor wanted from me: a prescription she could give her struggling patients. I’ve been lobbying alongside rheumatologists for several years now and one of the reasons they go into rheumatology is the challenge of the discipline. Rheumatic diseases are a moving target that affect entire systems, not just bones and joints. Every rheum doc I’ve met has an investigative mind. They love the puzzle. Every visit includes at least one reference to “the literature,” journals and conferences they have devoted themselves to, in search of elusive treatment options. The medicines they give us also kill us, in a way. Immune suppressants work precisely because they shut down a system God made to protect the human body from outside attack. How do you shut down an attacker from the inside without harming the patient? Rheumatology is all about trade-offs. There are wins, but they are always risky and usually temporary.
Your doctors know that, as do your caregivers. They sit with you while you weigh the risks of each regimen. “This drug means more lab work. That one could cause ulcers. I have to have that special eye test with that one. What did the other pamphlet say about cancer?” These are conversations no one wants to be having.
Your caregivers see you suffer. They know your battle better than almost anyone. Like the doctors, though, they still see it from the outside. Like the doctors, even the most empathetic caregivers will falter in their support. Their frustration over the disease will manifest as a frustration toward you. They know that you’re prone to fatigue, but that won’t necessarily prevent them from occasionally telling you to “get off your butt and do something.” Outsiders can forget and disability brings an incredible amount of scrutiny in our culture. Frauds are everywhere, they think. It’s too easy to fall back on those ableist ideas. Even I do it to myself most days.
Your caregivers and doctors are also well-aware that chronic pain can trigger depression. Despair is not irrational in this situation. In fact, it makes perfect sense that a life of physical pain would send your emotions and thoughts to darker places. Yet this fact frightens outsiders more than all the drug risks do. An immune system turned against the body is far less daunting than a mind turned perpetually inward. As little as we know about rheumatic disease, we understand even less about mental illness. Sometimes they will want to talk you out of your emotional pain, distract you with other things, like they do with physical pain, when they tell you to turn your head as the needle goes in. They don’t want you to grieve even when grief is inevitable. They have an abled understanding of health, so they want you to be problem-free. Fixed.
My rheumatologist wanted to know what she could say to her patients who cannot cope because to her coping looks a certain way. Calm on the surface. But that kind of coping only renders invisible the feelings about invisible illness. That coping is a cover that makes outsiders feel better, not the patient. Honest coping is not without struggle. It is not without loss. Many times it involves staring straight at the loss and naming it; wrestling it all the way down to the ground like Jacob until we are blessed by it. Like mine, Jacob’s hip was broken in the battle.
This is one of the reasons my answer to her that day was Jesus. He understands death and disappointment. He understands having to explain suffering over and over again, and still have the hearers deny its truth and its value. He knows what it is to entrust your body to people who will likely abuse it in pursuit of a cure for disruption (even when they don’t realize that’s what they are doing). He knows what it is to watch your people leave when it gets most physically painful. He knows what it’s like to have a few of them who stay to watch, bewildered and devastated by what is happening to you. Christ knows what it is to be scrutinized, examined, stripped down and humiliated. And He knows how exceptional it is to be anointed, lovingly attended by those who see you as sacred. He’s been where I’ve gone and where I’m going. He knows the struggle is real, and wailing and wallowing in an otherwise lovely garden are a necessary step in the journey.
When well-meaning people try to pep-talk me out of the struggle, I usually nod my head and smile. Sometimes if I have the energy, I’ll push back…hard. I unload every worst-case scenario I can imagine. In those moments of rage and grief I’ve been told by the frustrated party, “there’s no winning with you.” Believe me, I know what it’s like to contend with a foe that is full of bad news. It would be nice every now and then to have someone from the outside join the long defeat.
Lyrics, Sara Groves, “The Long Defeat”
That falling set in motion
And all my strength and energy
Are raindrops in the oceanSo conditioned for the win
To share in victor’s stories
But in the place of ambition’s din
I have heard of other glories
And I pray for an idea
And a way I cannot see
It’s too heavy to carry
And impossible to leave
I can’t just fight when I think I’ll win
That’s the end of all belief
And nothing has provoked it more
Than a possible defeat
We walk a while we sit and rest
We lay it on the altar
I won’t pretend to know what’s next
But what I have I’ve offered
And I pray for a vision
And a way I cannot see
It’s too heavy to carry
And impossible to leave
And I pray for inspiration
And a way I cannot see
It’s too heavy to carry
And impossible to leave
It’s too heavy to carry
And I will never leave
May is Foster Care Awareness Month and I love a good awareness month, so I popped over here to write about some things that have been on my mind the last few weeks. We recently became foster parents again, having finalized our first adoption from foster care last fall. People are often interested in what we do, why we do it, how it works, and perhaps one day soon I’ll get into all of that here, but for now I wanted to discuss some things that come up a lot in our daily lives as foster parents. People often want to know how they can be supportive of our family, and honestly, more than clothes or food (maybe not more than babysitting, we’d love babysitting), I want people to be more conscious about how they interact with us and other families in our situation. So today, I’m addressing a few of those problem areas.
Why we don’t talk about our foster kids’ stories
A while back a friend posted one of those listicles about what NOT to say to fostering and adoptive families. As helpful as the article was for her, she struggled with hopelessness thinking she would never be allowed to say (or ask) anything. She asked several of us, “Is there a polite way to ask about your family?”
My advice was to first, check your entitlement to the family’s story. The thought that I’m entitled to an explanation of someone else’s family is often a mark of personal privilege, and an indication that I could be treating these folks more like an exhibit than like people.Empathy is key here. Would you, upon meeting a stranger or even an acquaintance, disclose all of your family’s business? The sister in rehab? The mom dealing with mental illness? The dad in and out of jail? Perhaps you are an open person, but chances are you’re not going to tell tales about your family without their permission. Well, neither will I, and my kids are too little to give their permission. In fact, they are too little to know the scope of their backgrounds. Total strangers definitely don’t get to learn that from me before they do.
Kids come into foster care because they have been neglected or abused. They have been traumatized in some way and now a whole team of strangers has taken over their lives, hopefully for the better. Those strangers, lawyers, social workers, parents, doctors, counselors, all know the story. Almost all of us are bound in some way to confidentiality about these children and their families.
There are need-to-know zones I navigate as a foster parent. Only a couple of close confidants know anything about our kids’ background (and those are my “if I die and need someone to pass this historical knowledge on because I know you’re a fixture in my kids’ lives” folks). And even they don’t know everything. For what it’s worth, we don’t either. We know what we’ve been given.
If it’s a close friend or someone we’ll be regularly interacting with, I’m happy to respond to some questions as long as that zooing motivation is checked. Treading lightly here looks like, “I know you have to protect your child’s privacy, but I’m trying to understand better. Can I ask you something? Feel free to shut me down if it’s too much/inappropriate/you don’t want to discuss it.” If you have to ask, and again, check yourself before you do, take the pressure off the family to answer. We like to educate, but let us do it on terms that are best for us and our kids.
Why I might be “rude” to strangers or even friends who get weird about my transracial family
I don’t want to be rude. It’s not fun. I’m a rowdy person behind a computer screen but in real life I want folks to like me as much as the next person does. But, there are realities we’re dealing with as a “conspicuous” family in a segregated culture and we are required, as parents, to protect, advocate for, and teach our children about the world.
We used to be a white family of four. When we starting fostering our son (who is Asian) we got lots of ridiculous comments that I snarked back at: “He speaks good English” FOR A ONE YEAR OLD, YEAH HE DOES. In a store, “where did you get him?” AISLE 5. “I bet he’s well-behaved.” WHY DO YOU THINK SO? We know other folks who have been asked how much a kid cost. There’s no gif for this level of intrusion and stupidity. Oh wait…Now that we’re fostering our black daughter, we have white folks asking us all kinds of questions about skin and hair care. Seriously white people, on this and so much more, Google is your friend. You can ask Google anything you want and it’s just between you and the NSA.
Even more invasive, I now regularly have to fend off white ladies who want to touch her hair. And I mean, petting her and droning on about how surprised they are it’s soft, or waxing nostalgic about that time they touched their black friend’s hair.White folks’ curiosity about black hair is incredibly loaded with historical and cultural significance, and if you don’t know what those significances are, again, GOOGLE. I’ve indulged a few questions I probably shouldn’t have out of shock, but I’m quickly becoming accustomed to these situations and my tolerance for them has run out. I no longer care if you are family, friend, or foe: our daughter isn’t going to be your all-access-pass to blackness. Don’t I want people to know about fostering & transracial adoption? Why won’t I teach you?!
I do. I am. I will. But not at the expense of my kids. Growing up as a kid with rheumatoid arthritis, I know a little about what it’s like to have to deal with this kind of uninvited attention. Race and disability aren’t the same thing at all, and the invisibility of my disability affords me many privileges in addition to the ones I get for whiteness. Still, I’ve been that kid whose mom has to decide whether to educate someone or put them in their place, whether to confide in or confront.
As tricky as it is for the adult, it’s hellish for a kid who has zero power and is at the mercy of grown-ups. Sometimes my mom confided or educated and I was embarrassed by the details and the helplessness of not only having the disability but having it named and described without my permission. Sometimes I was embarrassed by the confrontation. I wanted the invisible to stay that way to the ignoramus in front of us. Most of the time, though, I knew my mom would rip the world apart to get me what I needed. I felt loved and safe watching her do her best to have my back.
I can’t give my kids intact birth families, and I can’t give them the just world they deserve, but I can have their backs. And if that kind of loyalty offends a few people along the way, I think I can live with it.
I’ve been away from writing these last few months because we have a newborn foster baby living with us. She came to us on her third day of life outside the womb, and managing her care and adjusting to life as a mother of four has been all-consuming. Since this is a space where I talk a little about life as a mom, I thought I’d share with you, dear readers, what my half-awake blogging hiatus has been like. I’m not making any promises about my return to more consistent blogging/writing because I’m giving myself space to live and sleep and trying to focus that internal pressure to accomplish on laundry (Sweet Lord, THE LAUNDRY overfloweth).
I’ve been snatching naps throughout the day and watching a lot of Netflix. Social media is pretty boring in the middle of the night, so when I get lonely or sleepy or think too much, I google.
Google searches at approximately 3:40 AM when I am feeding a newborn
This week, our 8-year-old will be attending his first lock-in at church. I am in disbelief that he is old enough for such an affair, but he will be there with his dad and he is incredibly excited. We got an email detailing the schedule of events at this shindig and the word “pizza” appears repeatedly in the list. Sounds like a party to me!
Perhaps the most looked-forward-to element of the night is a church-wide Nerf gun chase. Tonight we drove out to Target (of course) to purchase the boy’s first Nerf gun. I’m not a fan of guns and we live in a town house that’s full to the brim, so it never made sense to us to load up on Nerf weapons like many of our friends have. I didn’t want him to miss out at the lock-in, so we caved and got one.
When we got to the artillery aisle, the choices were overwhelming. Multi-chamber. Crossbows. Holsters. There were giant guns that could be taken apart to make smaller guns. Everything cost roughly fifty dollars. Pretty quickly, a theme emerged among the packaging…
I pointed this out to my husband and children. “The packages have only guys. That’s dumb. They’re all white, too. Geez. AMERICA.” They listened for a second and then went back to shopping.
I thought about the men who brought loaded guns into the toy section at a Target last year. I remembered being horrified to the point that I boycotted the store until they made a public stand against that kind of display.
Then my mind flashed to John Crawford who held a toy weapon in a Wal-Mart and was killed by police for it.
I was ready to get the heck out of there, but we still had a task ahead. “Which kind do you want? How about this one?” I asked my son, pointing at a reasonably-priced model. “I want a big one,” he responded. Of course you do. I found myself getting sucked into that self-defense armament argument for a moment. I thought about the kids who would be coming for him at this thing. Kids who were well-rehearsed in fast reloading and chasing their cowering siblings around furniture. I know some of these kids. They are perfectly nice children who own holsters and many of them got multi-chambered Nerf guns for Christmas. The kids have to label their bullets, so they’re being more responsible than Congress, right? “They’re just kids playing,” I tell myself to lighten up.
I feel my heart rush to back to Tamir Rice, throwing a snowball, holding his toy gun, not knowing the cops are on the way. Not knowing that as a child, he will be seen as a threat.
It felt like the air has been sucked out of the store. I looked back at my family and came back to the moment. I didn’t really want my boy to be a part of this. None of it felt right. Rehearsing violence in a country where inflicting violence is practically a birthright for some and a perpetual nightmare for others? How does it honor God to play at this? It doesn’t.
I decide, once again, I’m over-thinking it. After all, they are playing other games, too. Like dodgeball. This whole thing was shaping up to be a festival of social Darwinism. I didn’t mind dodgeball too much as a kid because it was widely known I was an arthritic. I could survive until the final rounds based on pity alone. My son doesn’t have any of those physical issues, he can keep up. But he is sensitive to situations where he feels ganged-up-on and situations where other people are being ganged-up-on (the latter is one of my favorite things about my kid). I recalled how horrible he was at laser tag this summer: how quickly he ran right into enemy fire and how oblivious he was to those out to get him. He had a ball playing, but he was crestfallen when the score sheets came out.
While we live in the age of everyone-gets-a-trophy sports, sometimes it feels like childhood has become this decade-long competition of who has a phone and who doesn’t, who is better on Xbox, who comes out on top. It’s rare to see children encouraged to play cooperative games, though they are widely available if you know where to look. It seemed counter intuitive to be staging a play war at church. When did everything get so militant? Couldn’t we re-enact Jesus telling Peter to put his sword away? Takers?
At least this elementary-age group wasn’t revisiting the middle-schoolers’ Hunger Games theme from New Years’ Eve.
My son stood in the aisle unsure of which weapon to choose. I was willing to buy him something for this lock-in, but I wasn’t excited to be succumbing to this kind of play. My offer to make him a conscientious objector vest was rejected as soon as I explained to him what it was.
I couldn’t blame him. I’m not the most peace-loving person myself. I slayed at laser tag. If I was planning things, we’d probably follow that Peter scene with Jael stabbing Sisera in the head with a stake.
The thing about parenting is it tends to hold a lens up to what we do as people and it makes us keenly aware of what we are passing on to our children. Everything we do teaches. It’s a terrifying responsibility. Sometimes we cave to culture. Other times we resist. In this situation, I am making allowances. Some may think it’s capitulation, many may think I’m being too analytical about this. I never want to stop questioning choices that seem to be the default, especially at church. I realize as an evangelical, this gun culture is my bedfellow. If I were in a Quaker church, things might be different for us. This is our community and we have to navigate this context and try to interrupt the status quo where we can.
Still, every day we do this and make these kinds of compromises, I ask myself if I am doing right by my kids. If I tell them the truth about the world we live in and how God would have us move through it, can I give them what they need to live a courageous contrast? Am I actively modeling these convictions or am I self-satisfied by my righteous rant in the Nerf aisle at Target? I’d like to be tougher as a mother and not be so unsettled by these questions, but as a person, I never want to be hardened about violence.
After all, none of us are bulletproof.
The one word challenge. Choose a word to live by for the year and, well, live by it.
Do you have any idea how many words there are in the English language? Me, neither, but I can think of at least twenty-three that I love and would like to be true of me in 2015 (or ever). I’ve been mulling it and praying about it for a few days, and I’ve finally landed on one that I think will be sufficient for encouraging me and kicking my tail. But I’m scared to put it in writing.
Oh, GAH, I might have to live up to it if I do. It’s the monster at the end of this post, and I’m warning myself even in this very paragraph not to say it or write it out.
I really am going to tell you the word, but it seems fitting to give you a short bit of background. You see, for years people have told me that I’m bold. Some say too bold, and that criticism has, on many occasions, sent me into a hole where I hush up and try not to bother anyone to keep the peace. Then I get all angsty about how easily persuaded I am to hide my light under a bushel, so I emerge from my hole, inevitably say or do something “too bold” again, and back into the loop I go.
Other people in my life say I’m bold, but they mean it in a complimentary way. “I could never do what you do,” they say. “You’re just so confident.” I take such things as they are intended, but in my head the emphasis is on “con.” I know any measure of confidence I have is a good bluff. Like how no matter what a British person says, to me, it sounds brilliant. It could be the biggest lie in the world, but because it comes with the accent, I’m sure it’s sage wisdom.
I am a reasonably intelligent person with an abundance of conviction, mind you, and people often mistake being convinced as being confident. But confident, I am not. I long to be seen and heard, but I cower in the wings inventing excuses why I should remain the over-rehearsed understudy.
In light of this, I considered making my one word “confident,” but it seemed too close to a motivational poster for me. Many of these one-word-words do. I feel like a cheeseball for even taking this challenge on for 2015. I feel like a cheeseball for blogging about it. This is one of those things that “highly effective” people do: goal-setting. I am not highly effective. Don’t get me wrong, I am amazing at setting goals. I am a professional beginner. I have the stash highly effective people need to start anything: notebooks, new pens, calendars, maybe some post-it flags. Office supplies are my jam. I am also a really good outliner, if you ever need an outline.
The other issue I had with “confidence” was that every time I let it take a lap around my brain, it went something like this:
That pretty much did it in for “confidence.” What I really wanted though, was a word that expressed courage. But not “courage,” because, again, the posters.
I’ve been thinking about words and writing and how I could possibly let one word set the tone for a whole year of living. The endeavor overwhelmed, and I was pretty sure this one-word thing was supposed to be clarifying and not befuddling. So last night I gave up on this whole one-word business and went to the theater. I put all of it out of my mind entirely.
I saw a staged production of C.S. Lewis’ The Great Divorce. Like many wonderful projects, it is a book I’ve whole-heartedly started dozens of times, but never finished. The company could not possibly cover the entire book, so they selected vignettes from the work and strung them together within the frame of the longer story. I was nailed to the wall by this dramatized encounter between an artist (Ghost) on the verge of entering heaven and her spiritual guide (Spirit):
Every poet and musician and artist, but for Grace, is drawn away from love of the thing he tells, to love of the telling till, down in Deep Hell, they cannot be interested in God at all but only in what they say about Him. For it doesn’t stop at being interested in paint, you know. They sink lower–become interested in their own personalities and then in nothing but their own reputations.’
‘I don’t think I’m much troubled in that way,’ said the Ghost stiffly.
‘That’s excellent,’ said the Spirit. ‘Not many of us had quite got over it when we first arrived. But if there is any of that inflammation left it will be cured when you come to the fountain.’
‘What fountain’s that?’
‘It is up there in the mountains,’ said the Spirit. ‘Very cold and clear, between two green hills. A little like Lethe. When you have drunk of it you forget forever all proprietorship in your own works. You enjoy them just as if they were someone else’s: without pride and without modesty.’”
As a writer and as a woman, I’ve struggled between such poles: believing my voice and my opinions to be indispensable, and believing them to be rubbish. This vacillation is embarrassing to me because it’s vanity. It is double-mindedness. It is neurosis and preoccupation with self and reputation. I yearn for the kind of self-forgetfulness that will allow me to do what God would have me do without fear or pride. I want to be authentically fallible; confident I can approach the throne of grace and head back out into world undaunted. I don’t want to worry that I’ll be found wanting or found out. I want to be fearless.
So this year, I’m making 2015 “fearless.”
It’s the scariest, most intimidating thing I could think of to do, and I think that means it’s the right fit, even if I don’t have a British person to sign off on it. Oh, wait…
Last week, I asked my Bible study group for prayer in diagnosing some problems I’ve been having with my neck and shoulder. In the last seven days, I’ve seen two orthopedists on the issues. One ordered an MRI. The other gave me an enormous injection of cortisone. The results of both are still pending.
Today as I was leaving the group, one of the women in my group asked me how I was doing and when I replied, she offered to “pray for healing.” My friend was sincere and I took her remark as the compassionate act of a friend. Perhaps it is my own cynicism that taking such an offer requires effort and grace on my part, but it does. You see, I have had a number of experiences in communities of faith that have been less compassionate, less sincere. And this is one of the reasons why when it comes to my rheumatoid arthritis (while seemingly a no-brainer prayer request) I am reluctant to add it to the conversation. I do pray about my RA quite often. I have come to embrace it as a perpetual prayer that involves me complaining, hoping, expecting, but rarely ever do I ask for healing.
I have prayed many prayers for successful IV sticks, uncomplicated surgical recoveries, for humor and grace, and a little less nausea. But I cannot recall a time when I have asked God to eliminate my RA. When I read stories of healings in Scripture or hear of contemporary disabled people healed through miraculous means, my heart is glad. Yet I’m keenly aware that there were many in Jesus and the apostles’ days and there are many now who are left unhealed. I count myself in their number.
My attitude on this has been taken by some in my faith community to mean I lack the faith to ask God for a miracle. This is entirely possible, but it is not why I refrain from asking. These folks often devote themselves to renewed prayer on my behalf. I welcome all the prayer I can get! Still, I will not join their fervor. It’s not an easy thing to say: I won’t pray to be healed. It feels rude. I’m used to accommodating the abled. I’ve been giving myself manicures since I was ten to keep people from feeling awkward about staring at my hands.
If I were to agree with “the faithful” praying for my total healing in those moments, it would feel like a waste of what I know to be true about God and about myself. For me, my illness and struggles are not an affront to my faith. Unlike the strength of my bones, my belief in the kindness and wisdom of God does not wear out easily.
Catholic writer Nancy Mairs once wrote of her own struggles with multiple sclerosis:
…if a cure were found, would I take it? In a minute. I may be a cripple, but I’m only occasionally a loony and never a saint. Anyway, in my brand of theology God doesn’t give out bonus points for a limp. I’d take a cure; I just don’t need one. A friend who also has MS startled me once by asking, ‘Do you ever say to yourself, Why me, Lord?’ ‘No, Michael, I don’t,’ I told him, ‘because whenever I try, the only response I can think of is, ‘Why not?’ If I could make a cosmic deal, who would I put in my place? What in my life would I give up in exchange for sound limbs and a thrilling rush of energy? No one. Nothing. I might as well do the job myself. Now that I am getting used to it.
As a younger person, I had my share of “why me?” moments. Most of them were more “woe is me!” moments, but reasonable bouts of self-pity are a part of grieving the loss of one’s health (even when your health has been compromised your entire life). Like Mairs wrote, this is something I’m constantly learning to live with, and it has shaped who I am in many ways.
Recently, I had a conversation with an atheist friend of my husband who, in an effort to demonstrate the absence of God, began to use disability in children as evidence of the arbitrary cruelty of nature. While I could offer this man few reasons why such suffering would exist, I told him that these pains, like mine, would be a heavy charge to levy against a supposedly-good God, indeed. My faith, however, tells the story of an omnipotent God who subjected His boundless deity to human form in the person of Jesus Christ, who is the image of the God-head bodily. The God-man got hungry, grew tired, lost sleep, felt pain, just as any human would. Not only that, He endured incredible, utterly unjust pain and finally, death on a cross. My God knows what disability is because in His love, He took on limitations and suffering so He might through incarnation, intimately know us and meet us in our bodies.
In her book, Disabled God: Toward a Liberatory Theology of Disability, Nancy L. Eisland writes:
The coming of Emmanuel was understood by the early church in terms of death and resurrection. At the resurrection, the disciples understood the person Jesus for who he really was. Only through the lens of resurrection could they understand the meaning and significance of the life of Jesus on earth. In the resurrected Jesus Christ, they saw not the suffering servant for whom the last and most important word was tragedy and sin, but the disabled God who embodied both impaired hands and feet and pierced side and Imago Dei…Here is the resurrected Christ making good on the incarnational proclamation that God would be with us, embodied as we are, incorporating the fullness of human contingency and ordinary life into God…The disabled God is not only the One from heaven but the revelation of true personhood, underscoring the reality that full personhood is fully compatible with the experience of disability.
In a culture, even a church, where disability is viewed as a lacking, a deformity, a state of incompleteness to be endured, Eisland’s words are life-giving to me. I think this liberatory theology resonates with me because I do not want to see my body as broken (though the powers of this world do its damnedest to convince me otherwise). I do not want to wait for wholeness. Psalm 139 is about me, too. I am fearfully and wonderfully made. The Imago Dei is all over this.
Just last week, I heard a sermon in which the presenter spoke of his disabled child who would be healed in heaven. I understand his desire to see his child remade in his image. I have long held out the same hopes. In the scarred body of the resurrected Christ, I see no particular promise for my own physical transformation beyond a ‘glorified body’, the likes of which is minimally described in Scripture. But in that image of Jesus, raised from death to life, I see the hope of triumphant embodiment. Eisland pinpoints more imagery that addresses those of us with “invisible” illnesses:
The resurrected Jesus Christ in presenting impaired hands and feet and side to be touched by frightened friends alters the taboo of physical avoidance of disability and calls for followers to recognize their connection and equality at the point of Christ’s physical impairment. Christ’s disfigured side bears witness to the existence of ‘hidden’ disabilities, as well. Historically, interpretations of the pierced side of Jesus have emphasized the tragedy of innocent suffering. But understanding the internal damage wrought by hacking swords as part of God’s eternal existence necessitates a deromanticization of of interpretations of Christ’s impaired body and a recognition of the population of people who identify with Christ’s experience of disabilities, hidden and displayed, as part of our hidden history…Hence, disability not only does not contradict the human-divine integrity, it becomes a new model of wholeness and a symbol of solidarity.
Eisland goes on to assert that in the ritual of the Eucharist, the breaking of Christ’s body and the shedding of His blood, we can be reminded of the suffering of Christ, but also His physical embodiment and solidarity with the disabled. She calls for a reexamining of how communion is served and the physical requirements of the practice (“architectural barriers, ritual practices, demeaning body aesthetics, unreflective speech, and bodily reactions), so that disabled people have the freedom to take of the bread and cup without exclusion. I myself have struggled, even in informal churches where plates and cups are passed, to hold onto the heavy plates, or grasp a tiny cup. Churches would do well to consider how the home-bound, those with difficulty kneeling or approaching an altar, and others with disabilities could be better served during the practice.
I struggled to write this at first because I was concerned it would seem too skeptical or jarring. I couldn’t escape the gumption that Mia McKenzie’s tweets gave me this week:
You see, I don’t consider people offering to pray for me oppressive. I truly take that as a kindness. What is oppressive, however, is the constant pressure to recover, to get over it, to be healed. And, honestly, a lot of that burden comes from people who should be well-acquainted with suffering and quick to identify with the oppressed. Instead, the church asserts demands for us to be made completely able (read: less inconvenient, less time-consuming, more independent). The disabled remind me and everyone else I know that community, love, and mutuality is the calling on our lives. Yet everywhere I go, I am inundated with messages that God wants me to get it together. His Word has a magical spell for whatever ails me.
When I tell able-bodied people this, they often struggle to see it. If you find this hard to believe, feel free to hang out with me or any other disabled person for a while. Take a break from staring at us, and sit beside us staring back. Maybe together we will all have our prayers transformed by the disabled God we serve.