She zips around in a motorized wheelchair, often with sudden starts and stops. The chair is equipped with a tray and a cup holder, usually sporting a super-sized Mountain Dew she drinks through a straw. In my opinion, anyone who goes though what Krissy goes through every day has the right to live on soda if they please, but my opinion doesn’t stop consequences. Krissy was over forty years old and has never been able to exercise, so you can imagine what soda has done to her body. It likely claimed a few of her teeth as well—they kind of splay-out, adding authenticity to her near-constant grimace.
She has nice hair, actually. I hadn’t thought about it until now—it isn’t the feature that stands out. It’s golden brown and curly, like a little girl’s. Maybe she has it permed. That would be her one investment in vanity. Instead of cosmetics, her forty-year-old skin is usually decorated with bits of food she spilled while trying to eat. Babies spill food too, but realizing that Krissy has a similar excuse doesn’t make it any less disgusting. Even babies don’t wear their breakfast all day long. There’s a lot she doesn’t have in common with Sarah Byrnes, but Krissy does know what it feels like to have little kids stare and adults pretend not to notice.
I don’t know when I first saw Krissy. I’m one of those people who pretended not to notice (and immediately forgot, if I ever did). I thought that was the gentlemanly thing to do. The first time I remember noticing Krissy was at the college library. The front door is equipped with one of those handicap-access buttons, but her chair is only a few inches narrower than the door, and Krissy sometimes needs a few tries to get the aim right. The mechanism doesn’t keep the door open long enough, so she needs an actual person to hold it. I probably would have forgotten that encounter, except that Krissy approached me in the library computer lab maybe an hour later.
“Exthcoosth me, can you pleeethh help me with thith compuder?” Her tongue is like all the other muscles she can’t control. Her tray usually catches most of the spit.
Thinking I’m being a gentleman, I promptly move the keyboard onto her tray where she can reach it. When I turn, expecting to see a polite smile of gratitude, I instead meet a cold glare, like I’m an idiot, like I’m insulting her, or embarrassing her.
Suddenly her energy changes. “Um, can you type thumpthing fer me?”she smiles as sweetly as she can.
She wants to dictate an email, and I get the impression that she has reason to expect perfect strangers to provide that service for her. It’s dawning on me that she can’t type. OK, I can spare a few minutes. The things she wants to communicate turn-out to be very personal, delicate things you’d rather sculpt in a letter than try to say in person. It’s dawning on me that being unable to type or write could be a very serious social handicap. I feel privileged to serve as her confidant, someone she can trust to help her repair relationships with the most important people in her life. But she is talking too fast. I can’t understand her…I’m trying to summarize what I can make-out…
“Is this good? Is this what you want to say?” I scroll it into view.
Again she looks annoyed at me. Then she looks away, and huffs. It’s dawning on me that she can’t read either. Pretending I never expected her to read the screen, I read it for her. I don’t know whether I summarized well, but she’s pleased. She leaves the library feeling respected, and I leave feeling better-educated.
Krissy catches me in the computer lab about a week later with another email to dictate, then in the street a few days after that to tell me she’s been banned from the library.
What?! Banned from the library?! I thought libraries were supposed to be the most open-minded places on Earth. Now they’re banning the handicapped?
Turns-out she doesn’t have a student ID. Frankly, I’m amazed anyone had the nerve to card her. I tell her about another library that doesn’t check IDs, and offer to show her where it is. She’s busy right now. She’ll call me. I give her my cell number.
It’s 2:30 AM—the middle of the night—when Krissy calls, and, with all her screaming, I can’t understand a word she’s saying. It takes a full ten minutes to get her to calm-down enough to communicate the six syllables she has attempted to bark into the phone at least a hundred times by now: there is a bat in her room.
She’s freaking out, and, the more she screams, the more wildly the bat flaps its wings. Apparently it’s trapped, but Krissy has no sympathy. As far as she’s concerned, she’s the one who’s trapped. Until someone comes who can operate the medical crane that lifts her from her bed to her wheelchair, she can’t even roll-over. Her situation, as she sees it, reminds me of the scene in Barbarella where Jane Fonda gets strapped-down to be pecked-alive by birds (that’s where my parents stopped the video and decided never to let us see an R-rated movie again).
I’m trying to gather the facts, and figure-out what I can do. Krissy lives alone. The caretaker service that puts her to bed always leaves her phone next to her in case there’s an emergency. This sounds like an emergency to me, but she’s already called the service, and they said they won’t send anyone until morning. She wants me to come to her bedroom to remove the bat. I overestimate my ability as a completely-inexperienced exterminator, but something tells me that a male student breaking into the bedroom of an incapacitated older woman could get in trouble. The authorities have been informed, and they’ve decided not to send-out an emergency team to rescue the bat. Krissy’s problem is really in her head, so I spend the rest of the night trying to convince her over the phone that the bat is more frightened of her than she is of it.
Even the professional exterminator was unable to get the bat out on the first day. The caretakers ended-up putting Krissy to bed in the same room for a second night alone with the bat, even though they knew she would consider it torture. Because of her handicap, Krissy can’t go to a hotel; I never before realized how lucky I am to be able to evacuate my home in an emergency.
I begin to encounter Krissy more frequently. She seems to fill her days checking-up on various people, and now I’m one of them. I learn that she is developmentally handicapped, which means her mind is not as mature as her body. Krissy’s mind, I guess, is about six-years-old. She likes to watch the Charlie Brown Christmas Special, and wants me to sing the Tigger song from Winnie the Pooh, over and over. She delights in rebelling against her mother, who visits about once a week, by listening to rock music instead of folk songs, every once in a while.
On the other hand, Krissy’s mind has aged in ways I hope mine never will. Most rapists and other abusers are cowards who seek-out weak victims. It’s happened often enough that Krissy no longer finds it alarming, but I don’t even want to think about it (nor the possibility that people like Krissy shield people like me by absorbing a disproportionate share). What alarms Krissy is some guy who must have filed a restraining-order against her—she wants to call him, but says the police will come for her if she does. Frankly, I can’t see how she considers the police very threatening, given everything else she’s been through (how could jail be worse than torture-by-bat?), but I figure Krissy is wiser than I about this.
Krissy dominates the late-night radio show hotlines. She has her caretakers leave it on when they tuck her into bed, and calls-in as soon as they leave. Her calls don’t go on the air, but she’s religious about keeping the media up-to-date on every detail of her life. She thinks famous radio personalities want to know. God bless them.
Krissy attends my church, as it turns out, so I start sitting in the back where her wheelchair can fit. She asks me to come to her home to read to her from the Bible (she also has a copy of Clifford the Big Red Dog). The State-assigned social worker invites me to one of their weekly sessions to make sure Krissy isn’t an “evangelism project”, then tells me that, in addition to people who address her physical needs, Krissy needs responsible friends who can help her make good decisions…especially about nutrition. Krissy is still learning to read two-syllable words; it may be years before they introduce the food pyramid.
One day, when Krissy visits me in the other library—I’m boycotting the library that banned her—she tells me that she just got back from a doctor’s appointment. She says she’s had trouble sleeping and that the medicine her doctor prescribed isn’t working. Then she takes another big sip from her super-sized Mountain Dew.
“Hey, maybe all that Mountain Dew you’ve been drinking has been keeping you wake. Did you know that Mountain Dew has a lot of caffeine that can keep you up, and it can be addictive?”
“Yeah… I’m not thupothed to drink it.” Slurp. Big toothy grimace. Then she half-sings/half-squeals, like a six-year-old girl, “But I know where I can get all I want for free!”
During times when Krissy says she wishes she were dead, I feel like I ought to be able to tell her what makes her life worthwhile, and I’m embarrassed to realize that all I can do is echo cliches from church. I don’t really know what makes Krissy’s life worthwhile. I’m afraid to push the Mountain Dew issue, because I’m afraid that whatever makes her life worthwhile might have something to do with having freedom, and the only freedoms she seems to enjoy are over details like what to drink.
The next day, I accompany Krissy on one of her journeys down Boyle Street. We’re going to meet Matt. Being Krissy’s friend seems like a big responsibility, and it will be reassuring to meet someone else who shares the load. Krissy wants me to drive the wheel chair, which is probably easier to do when sitting in the chair than when walking along side it, especially on a crowded sidewalk. There’s a joystick on the armrest, and the slightest change in pressure will cause the chair to speed up or slow down. I have to concentrate or someone will get bumped, like ballroom dancing.
We’re meeting Matt at the GAP. Turns out, he’s the manager on duty—that’s how Krissy knew he would be there. He talks to Krissy like one of those guys who’s really-good-with-kids, and she’s delighted. But he’s on duty, so we need to leave. I remember how Krissy talks about certain people being special because they put a “thmile” on her face, and wonder if this is how she spends her days, tracking down those special people, one by one, just to hear their special, “Hello.”
As we pass a fast-food restaurant on the way back, Krissy grabs the control, “I’m gonna get a refill.”
“No, Krissy, come on, Mountain Dew really isn’t good for you. Please don’t do that when you’re with me.”
I take the joystick, but she grabs it back angrily, “I’m getting a refill!”
Krissy looks right, then left, as though to make sure no one’s watching, then speeds into the restaurant. At first, I wait outside, but then I feel like a chauffeur, so I follow. When Krissy maneuvers her chair just right, she can just barely reach the lever on the soda machine. I don’t like this. As she begins to fill the cup, I am overwhelmed by how much I don’t like this. It was one thing to ignore Krissy’s brag about defying her doctor and getting her caffeine free to boot, but now I feel like I’m about to become her accomplice.
“No, Krissy. Put down the cup.”
“You stay a way!”
I snatch the cup, and empty its contents down the drain. Krissy grabs for it, so I lift it beyond her reach. Suddenly, it is painfully obvious that she is handicapped and I am not. The other people in the restaurant are staring at what looks very much like a bully who has snatched a little girl’s favorite doll, and taunts her by dangling it over her head.
“Give it back!” she roars, “Give it back!”
I’m panicked. I don’t know what to do. I’m past the point of no return. Even in retrospect, I don’t think there was anything I could have done in that moment to come away less than a monster.
“What you are doing is stealing!” I whisper loudly, as though it were appropriate for me to teach morality to a woman twice my age. “If you want a soda, you’ll have to buy it.”
Krissy has turned red with anger, and she is twitching. She is giving me the most terrifying look she can, complete with wheezing and drool. It takes every ounce of my concentration to assure myself that I am in no physical danger.
“They don’t care. They give me soda for free.”
“No, soda is not free.”
She spins her wheelchair around abruptly, then heads full-speed towards the cashier. “Tell him that I get soda for free!”
“It true,” the cashier explains as gracefully as he can, “we give her free soda.”
“Well you shouldn’t!” I argue back.
I may not be well-versed in physical abuse, but, under stress, I bully verbally even without thinking. “Do you realize that the majority of this woman’s daily calorie intake comes from Mountain Dew? She’s seeing a doctor because she’s having trouble sleeping at night, and her prescription isn’t working, probably because of all this Mountain Dew you’ve been giving her for free!”
“Hey, look, man… I’m sorry, I didn’t know…”
“If she pays for soda, then I don’t think you can discriminate against her,” I say, calming down, “But please stop making it so difficult for her to overcome this addiction.”
Krissy is still fuming, “Fine! Get my money!” Her coin purse is in the backpack strapped to the back of her chair. I get it, she pays the cashier, and she gets her refill. “You’re not my mother!”
We spend the rest of the walk in silence.
In order to explain what happened next, I need to give you a little background about myself. I need to share something I normally wouldn’t share because it might offend some people in the same way some people were offended by Staying Fat for Sarah Byrnes.
Staying Fat did a good job of helping readers appreciate the perspective of people who live as though there is no active God. It modeled all four major reasons why people adopt that perspective:
- Belief in an active God can look foolish in a debate,
- Attending to perfection often leads to false judgment, guilt and hypocrisy,
- Religion divides humanity into cliques that discriminate against each other, and
- Suffering makes us feel abandoned (by God).
Having lived much of my life as though no active God exists, I am in no position to criticize anyone for holding that perspective, but to understand what happened next in my story, you need to appreciate the opposite perspective. Unless you accept that it might be reasonable for me to believe that an active God exists, you will dismiss my story as naïve, insane or deceptive. Fortunately, you’ve also read Staying Fat, so I can be honest without unbalancing your curriculum.
Imagine being in a class in which the teacher says, “Raise your hand if you’ve ever had a spiritual experience.” It could be pretty awkward, yes? Each of us is uniquely qualified to report our own experiences, and spiritual experiences are no different, but admitting that we’ve had a spiritual experience could get us labeled as naïve, insane or deceptive. Specifically, the people of the no-active-God persuasion would label us that way, and that’s why few of us would raise our hands, even though 83% of us believe God answers prayers, according to a recent Gallup poll. Their ability to intimidate is just as impressive as that of “churchy” people.
I don’t think any one form of prayer is best, but one of my favorites involves asking questions and getting answers. When I think to myself, I imagine a voice in my head articulating my thoughts. When I pray with words, I imagine that same voice. If I want to, I can imagine a higher voice, or a low voice, or shouting, or bird chirps, or even echo effects. I can also imagine a dialogue. So, if I heard God’s voice in my head, I’d suspect I was just imagining it; that’s not the kind of answer-getting I’m talking about. The kind of prayer I’m talking about is when answers dawn on me accompanied by good reasons, reasons other people find compelling, regardless of where the reasons came from.
One night, before I met Krissy, I knelt down alone in my room, put my palms and forehead on the floor in front of me, then made clear who I was addressing. I acknowledged that I am weak compared to many forces in this universe, and so are my friends. I admitted that we understand very little of our world and that, even when we do know the best things to do, we frequently lack the will to do them. In short, we cannot take credit for surviving as long or as well as we have, and this prayer is directed where credit for that is due.
God, one of the ways I show respect to my friends is to listen, to not dominate the conversation. I want you to know that I respect you, so tell me what’s on your mind. You can tell me anything you want, or you don’t have to say anything at all. I’m just gonna listen.
Suddenly I realize that, although God probably didn’t mind the gesture, it was incredibly arrogant for me to suppose I could comprehend what’s on God’s mind. Maybe everything is on God’s mind all the time…not that God is too busy to address my problems…obviously God addresses them more than I do. Oh! My heart skips a beat, and I feel a twinge as it dawns on me:
God loves me more than I love myself.
I’m surprised by how deeply this touches me. This feeling, washing over me—I’m not sure what it is…some mixture of gratitude, shame, awe, inspiration… love… I don’t know what to do with it… what an amazing relief, not to be alone, as the one person who cares most about myself… to be able to love myself for the sake of someone else, rather than just selfishly. This is big. This is profound. I have to do something about it…
God, what can I do to reciprocate? How can I make you feel loved the way I feel loved by you?
Again, I realize my arrogance after-the-fact. God doesn’t have needs for me to address. I can’t manipulate God’s feelings. And my love is limited. I merely reciprocate; I give love only when I feel loved. I’m selfish, so God can help me become more loving only if I let myself feel more loved by God. Instead of trying to earn good things in my life, I’ll have to take them as gifts.
Is that it? By passing up the best life has to offer, the things that come for free, I’ve been rejecting love, becoming less and less capable of loving—is that what’s on your mind? You can’t help but think about how I’m messing-up my life, because it breaks your heart, and you want me to just, please, stop struggling so blindly…stop isolating myself…
Tears stream down my cheeks.
Steve Ellerby from Staying Fat for Sarah Byrnes might question whether I really have a personal relationship with God. He probably wouldn’t claim that there is no force greater than humans, but instead doubt that any such greater force could qualify as a “person”. He might offer the alternate explanation that pretending to talk with God just helps me feel better.
To be honest, the extent to which God and I really communicate is not something I dwell on. I come with questions; I leave with answers; that’s what matters to me. In theory, I might not really communicate with you either, but we don’t dwell on that. I know a woman who talks to her plants the way people talk to babies. You could question whether she really has a personal relationship with her plants, and hypothesize that pretending to talk with them just makes her life better, but how could the person with the bettered life ever worry they lost the argument?
Speaking of baby-talk, when are we old enough that our relationships, even those not with God, can finally count as “real” and “personal”? When is our talk no longer pretend? When do we finally master language? When do we read between the lines, notice the body-language, pick-up on the context, the inside jokes? When can we finally understand everything anyone might say, imply, or mean? When are we finally able to appreciate everyone else’s feelings?
Maybe personhood is less a qualification we are born with and more a skill we develop by degrees. Instead of trying to establish who qualifies as a “person”, maybe our efforts would be better invested in learning to relate more personally. If we learn to treat Krissy more as a person, for example, if we overcome our instinct to discriminate, then treating God as a person might seem less of a leap. And the reverse might be true as well—getting personal about God might be good practice for overcoming differences that limit the extent to which we treat certain humans as persons.
Our definition of “personhood” could probably improve, and not just in the dictionary—the dictionary definition isn’t the one that limits Krissy’s personhood. It can be fun to debate topics for which our language is not yet well-equipped—personhood looming large in the abortion debate, for example—but it would be foolish to try to establish truth through debate, when we are restricted by premature language.
I understand that “personal relationship with God” is incomprehensible, and that selecting comprehensible beliefs over incomprehensible ones seems like a good tactic for avoiding delusion, but our difficulty making good sense of “personal” and “God” is joined by difficulty with making good sense of “good”, “belief”, “select” and “delusion” too. Where our language cannot even begin to capture the richness of actual experience, please forgive me for responding in a debate with nothing more eloquent than, “Don’t knock it until you’ve tried it.”
To prove that you qualify to have a real debate, that you will not be trapped into making excuses for the immaturity of your personal relationship skills, first develop meaningful personal relationships with
- A baby
- Someone expecting death
- A known (former) criminal
- Someone in poverty
- Someone who speaks a different language
- Someone who can fire you
- An adult who loves you
If that’s too difficult, to develop just seven personal relationships, then it seems reasonable to dismiss the possibility of meaningful debate. However, if you can develop those seven relationships, I have to admit, you are more of a person than I am.
After the soda incident, I pray on my knees again.
God, what should I have done? What would you have done?
Duh. Exactly what God did do, what God had done every other time Krissy got a soda. Did I think God wasn’t there? That God hadn’t been as much an accomplice as I was? Did I think atoms hold the shape of a cup by magic?! Then it dawns on me that God experiences this kind of thing a lot. We all make God our accomplice. Whenever we do what we shouldn’t, God disagrees, but enables us anyway. Disagreement is inevitable in relationship; if God wants our relationships with each other to last, God has to teach us to enable one another even when we disagree.
Even though I think Krissy is wrong to drink Mountain Dew, that it’s not in her own best interest, I’ll respect her choice. But I also need to empower those who give it to her. I need to empower them to make their choice in an informed way, so I write them a letter, thanking them for their compassion, but letting them know that Krissy drinks a lot more Mountain Dew than they probably realize, letting them know that she does so against the advice of her doctor, that she has trouble sleeping, and that her medicine isn’t working. The letter says that I believe Krissy has a right to live her life as she pleases, but that vendors also have a right to give gifts as they please, and, if I were a vendor, I’d feel more comfortable giving her free lemonade.
I apologize to Krissy, then read her the letter, and she gets angry all over again. “Fine! Let’s just get this over with!”
She accompanies me to deliver copies of the letter to the two vendors I know about, and then tells me about a third, insisting we deliver one there as well. I get the creepy feeling that she has decided to trust me to fill-in for her mother, to lay down the rules and help her become a “good” person. What is Krissy thinking? She sits with me in church, and asks me to read to her from the Bible. Does she think of me as some kind of “church guy”? Is that why her social worker was so concerned about evangelism?
On Sunday, the pastor mentions that there will be an opportunity coming up, in a few weeks, for lots of people to get baptized. One by one, they will be submerged briefly in a pool of water. He says that our church considers baptism to be an “outward sign of an inward reality”, that it doesn’t actually change God’s attitude toward us, but that many people want to be baptized anyway, just to show their obedience to God. He mentions that, for medical reasons, some people do not fully submerge, and that’s OK, because the point is just to show obedience. Anyone who wants to participate in the baptism will have to take a class to make sure they understand its significance.
This message puts Krissy in a bad mood for weeks before she tells me why. She wants to get baptized. I can’t pretend to understand her reasons. She prays. She prays a lot. She has a lot of time to pray. Her prayer life is probably very different from mine. I probably don’t know God the way she does. Maybe she prayed about baptism. Or maybe someone told her that Christians have to get baptized. Or maybe she just wants assurance that she is accepted—baptism can make people feel that way. Whatever her reasons, Krissy wants very badly to be baptized, but thinks it can’t happen for her.
Krissy thinks getting baptized would be mortifying, because everyone would discover that she wears diapers. There would be a big mess. It would stink up the pool, and everyone would hate her. And, because she believes that, she thinks her church is an exclusive club that excludes her, and God is cruel. She’s been carrying this feeling of hopelessness around in secret because she didn’t want to offend me, and didn’t want me to know that she wears diapers.
This sounds easy to solve, I’ll just remind Krissy what the pastor said, that you don’t have to be submerged to be baptized, and a huge weight will suddenly lift from her shoulders, right? It’s like trying to convince her not to be afraid of a bat…just too theoretical. You can say that people don’t have to be submerged, but anyone who attends a baptism at my church will see that everyone does it.
Should we ask people to volunteer not to submerge, so as to be more welcoming to those in wheelchairs? Should we also ditch the Bible, so as to be more welcoming to those who can’t read? Should we accommodate people who worship in tongues? What about accommodating people who like to bring guests who would be freaked-out by people who worship in tongues?
The more I think about it, the more grateful I am that America has a diversity of churches, that no church has to accommodate everyone. There are churches where people can sing rock, churches where they can sing gospel, and churches where they can sing from a hymnal. Some churches can be relied upon to help you build a barn, some to provide marriage counseling, and some to organize political action. Baptism is handled differently by different churches, and I’m grateful for that. Based on my experience with Krissy, I suspect that anyone who thinks a particular church, or religion, or even group of religions, can accommodate everyone simply hasn’t met enough people.
I’m not saying that people can choose for themselves what is true or what is good—it would be impossible for me to make mistakes if truth and goodness were my own invention, and I’m certain that I’ve made mistakes—I’m saying that God can meet people where they are. I’m saying that the best truth for me to grapple with right now, might not be the best truth for Krissy to grapple with at the same time. In fact, those truths could be as different as theories and emotions.
Given what I’ve just admitted, you might expect me to collect a personalized set of religious beliefs and habits, but the other thing I’ve learned about religion from Krissy is that I’m not qualified. I thought I was doing good when I held the door for her, when I introduced her to a new library, and when I took her side against caretakers who left her trapped with a bat, but gradually I noticed that all the friends Krissy chooses, the ones who are not paid to serve her or are related by blood, all of them are single men. Krissy is of different ages in various ways, and apparently she is romantically at an age where she develops interest in boys. When she started kissing my hand, it became clear that my attempt to do good was misguided…all this time, I was really just leading her on.
Or maybe it was wrong of me to break-off my relationship with Krissy–either way, it seems I’m not the “good guy”. I think sometimes people do fix wrongs they encounter in our world, and we’d be in trouble if no one ever tried, but reality doesn’t always conform to the standards of fiction. Krissy’s parents did more than their duty to care for Krissy, but they probably won’t outlive her. And don’t expect taxes to cover it either. The government enforces restraining-orders, and pays someone to change her diapers before and after their regular full-time job, but the government will never be able to give Krissy a family. Is it so wrong of her to seek that? Several churches tried to fill the gap that I did not, but they inevitably had to insist that she behave, and then Krissy simply switched churches.
I take that as a lesson for my life—when people try to teach me to behave, I don’t reject the gift. I don’t “shop” for church. I would make an exception, of course, if everyone in my church were threatening to kill me or committing suicide, but I’m more concerned that I might never learn to support those with whom I disagree. I appreciate what I have, only because I’ve known people with less. It’s human for victims of great suffering to lose faith in God or in their church, as Mark and the Ellerbys did in Staying Fat for Sarah Byrnes, but equally human for us to need that faith renewed when we open our eyes to all the suffering we ourselves fail to prevent.
Staying Fat ends before its characters reach that stage, before they appreciate parents for doing more than put food on the table and protect their children from criminals and vice-principals. But, when we develop a sense of responsibility, and the risk of failing to fulfill our responsibility—a stage destined to develop character in most of us—surely it will be better to believe that we need to be taught to behave than to believe that we’re merely unwilling to behave, or that we should never even have tried. Then we may be more inclined to appreciate parents for teaching us to seek correction, for demonstrating respect for something like a church.