On Being Well

Virginia Woolf wrote an extended essay entitled "On Being Ill;" this is partly inspired by that creative work, partly a collection of musings, and partly an answer to a question from my friend Juliann. Here's more than you probably wanted, Jules:

More and more I'm convinced that health is not the default setting for humanity. At least not since the fall. Someone once asked me what I thought the cause of food allergies was; I answered without a blink, "the fall." I don't know what caused the scientific glitch that endangers my life every time I walk into an Asian restaurant. I also don't know the scientific causes for my anxiety and depression, for my asthma, for my scotopic sensitivity syndrome (that's fun to say). My body doesn't function the standard way science says it should. If health is the standard, I'm defective.

I don't really like the idea of thinking of myself as a defective human being.

There's a story in John (chapter nine) where Jesus' disciples ask whose sin caused a particular man to be born blind. Jesus said that the man wasn't born blind because of anyone's sin, but that God might be glorified. Then he healed the blind man. I don't have food allergies because of anyone's sin, but Jesus hasn't healed me. I can't sit on the street corner and wait for Jesus to walk by because he's inside of me. Jesus is here, and he hasn't healed me. Why? That God might be glorified. The question is how can God be glorified through this medical defect stuck in my body.

I babysit a beautiful little 11-year-old girl named Lauren; she has epilepsy. Every time I go to her house I set the appropriate alarms on my phone: 3:30 1/2 teaspoon of liquid medication; 5:30 another teaspoon, 6:30 a handful of pills.

The first time I babysat Lauren, I prayed to God that he would heal her. Five years later she still has epilepsy. I have matured a lot in those last five years and my prayers have changed quite a bit. Amazingly, the answer to my prayers is no longer a cold "no," but a soothing "yes." Care to know what I've changed my prayers to? Ready or not, here it is: "God, please glorify yourself through Lauren's illness." Lauren is not a defective child. Far from it, she is one of the most amazing young girls I know. Lauren is incredibly thoughtful and patient, respectful and kind.

As I watch Lauren sleep on the baby monitor downstairs and pray that she will have a restful night free of seizures, I'm struck by the grace of God made evident on earth through this sweet child. This little girl is so strong, and has never complained once to me about taking her medication. Even when she was six and had to eat her pills crushed up in applesauce, she would obediently eat every bite of the bowl, including the last scoop I was instructed to scrape from the bottom in case any chunks of medicine had been accidentally avoided. Lauren is tenacious; a seizure won't keep her from being the best she can be. Her joy is contagious whether we're playing monsters in her parents closet, or she's giving me a big hug on Sunday morning because she hasn't seen me for a week.

Human life is so frail; at any moment Lauren's brain could begin a fight with her body that could endanger her life. What prevents my brain from beginning the same fight? The same thing that gives Lauren sweet sleep some nights: the grace of God. The same God gives me seizure free sleep every night that gives Lauren seizure free sleep only some nights. I don't pretend to understand why I have food allergies instead of seizures, but the same God made you able to eat peanuts that made my body attack peanut protein when it enters my system.

Now, seizures are one thing, but my medical uniqueness seems to glorify God differently. My food allergies are the most difficult to understand. It's something I was born with, and has nothing to do with my development, could not have been prevented by any nurturing on my parent's part or personal attention of my own. Like Lauren with her life of epilepsy, I know nothing of a world without peanut allergies.

It's not unusual to be afraid when someone holds a gun to your face because a bullet to the brain could kill anyone, but most people know nothing of the fear put in my heart when someone holds out a bag of trail mix to me. The last time I had an anaphylactic reaction was the last time I ever drank Jamba Juice. It's a terrifying feeling to have your throat slowly constrict; panic sets in as you know this could be the end of your life if you don't get the swelling to reverse. It's also incredibly embarrassing.

This last reaction I had took place at my best friend's senior dinner. It was a family only event, and she had invited me as her "sister." Her classmate's parents were sharing baby photos and embarrassing stories of their graduating students, and I was dying - literally. I took Benadryl and drank 92 ounces of water in less than two hours. I knew exactly where my mom's best friend (who happens to be a nurse and the emergency contact on my medical release forms since I was in kindergarten) was seated with her family (she had a daughter graduating that year); I had a plan all laid out if I couldn't swallow after the third refill of my 32 ounce water bottle. I was going to slowly go over to Darcie, tell her I was having an allergic reaction, and have her escort me to the hallway to give me my epi pen and call 911. The thought of an ambulance showing up to this event that I wasn't technically supposed to be at was mortifying. I almost would rather die quietly in the bathroom - but that would be even more embarrassing to have someone find my dead body after the event. Fortunately, the Benadryl, loads of water, and consistent silent prayer worked, and the swelling went away.

So how does this event glorify God? I have no clue, but I have another good story. When I was in the first grade my best friend Jessica had a homemade rice crispy treat in her lunch. She told me her mom had put peanut butter in it. I told her rice crispy treats didn't have peanut butter.

"No, really, my mom put it in. Try it," Jessica insisted. She knew I had food allergies, but at seven years old didn’t really think through her challenge. She wanted me to know she was telling the truth.

"Fine." I was a stubborn little kid.

I definitely took a bite, and knew instantly she was telling the truth. I conceded and apologized for not believing her. I told her I was going to die soon. We both started to cry.

Our teacher happened to be on recess duty, and a parent volunteer who was unaware of my food allergies saw our passionate embrace as we both cried bitterly.

"Oh, did you two just make up from a fight?" She thought it was a tender moment of reconciliation between two seven year old girls and reacted accordingly.

"No," I said calmly, "I'm dying."

The mom was uncertain how to respond to my matter of fact statement.

"I'm allergic to peanuts, and I just ate some peanut butter from her lunch," I explained.

Confusion turned to terror. This mother didn't know the procedure for treating anaphylactic shock. I'm pretty sure she didn't even know what anaphylactic shock was.

Fortunately, another classmate caught wind of the situation, bolted out the door, and screamed at the top of her lungs to alert the teacher on duty that I had just eaten peanuts. The whole staff flew into a frenzy to get my epi pen and call my mom. I spent the rest of the day sitting in an office chair shaking from the large dose of epinephrine in my small body and actually spinning the chair around because of it. Okay, that wasn't the whole day, but I really did spin the chair for about an hour because of that; my feet couldn’t reach the floor to stop me. I don't know what happened to that poor mother; sometimes I wonder.

I don't know how that story can glorify God either. Any ideas?

One thing I do know: I'm not defective. Maybe my attention to detail in what I'm served at a restaurant can demonstrate to you how magnificent the microscopic details in God's creation are. Only 1/5000th of a teaspoon of a peanut - a speck of peanut dust - can kill me. Maybe wiping off my seat and tray on an airplane can show you how God hasn't limited me, but expanded my horizons because I can still fly. Maybe when I have to step out of the room because your peanut butter and jelly sandwich is causing me to have trouble breathing you can see how free God has made me.

I don't know the best way to answer how I can glorify God with my food allergies, but I can say that my food allergies are part of who I am - I don't know life without them - and I can glorify God with my life. It's part of who I am, and perhaps different people will learn different things about God from it, but I will never let myself think that I am deficient as a human being. I was made this way not because of sin, but that God might be glorified. I choose to let him be glorified.

On the Spot

I still don't broadcast the fact that I write, and last night was the first time I was asked point blank in front of my family if I write. I didn't want to lie, but I felt uncomfortable saying yes. I dodged the question with all eyes on me.
"Well, yes, sort of… I really enjoy writing papers."

Not a lie, right? Just a half truth. Is that fair? My aunt, the only family member who knows my secret, asked me if I ever planned to tell my parents.

"I'm not sure. Now just doesn't feel like the right time."

I don’t know if there ever will be a right time. If I get published, maybe. I really did have to examine my motives for hiding it from my family, though. I'm sure they would support me. Kind of. They would try to support me in their own way.

I realize that's why I'm keeping my writing from them. Imaginative fiction doesn't make sense to my family. They don't value the creative power that stimulates me. When I get excited and rave about the literary beauty of Rushdie's second moon my mom's eyes glaze over. Even my dad, who taught me to read with Lewis's Chronicles of Narnia, can't get past his gender roles to realize the empowerment Virginia Woolf gave me in A Room of One's Own. My sister's disconnection hurts the most; she has no place in her world for levels of meaning found in rereading. All she cares to do is devour a book and mark it off on Goodreads.

So is it fair to keep this from my family, in order to protect what I love? They would "support" me, but not understand what I was doing. Does it hurt them any to keep it from them?

I work with students, and I had an interesting experience with one of my girls who has a secret boyfriend. She doesn't want her parents to know (in fact, she didn't want me to know and tried to hide it from me too), and as a responsible adult, I feel obliged to encourage her to tell her parents. On some level that feels hypocritical. Writing certainly isn't an emotionally dangerous secret to keep from my parents, but it's the same idea of hiding part of my identity from people who love me a great deal.

Battle Log: Day 1,417

Battle Log: Day 1,417
Apathy is fighting against me. It's attacking strong, oozing over everything I touch. I watched two younger soldiers suffer from a strong infection of it today. One of them showed up for duty today soaked through with the fungus. The other gave a little resistance before falling under the pressure of her friend's overdose of apathy. I haven't given up hope on either of them yet. The first girl leaves a trail of apathy behind her every step, but I think she's still alive beneath the slime. The other one certainly shows more resistance on a regular basis. I've seen her get excited and even engage with the outside world on her own accord. She'll be a lot safer in the battle tonight, but none of us are out of danger.
Our enemy is strong and persistent. Apathy can come out of nowhere, and usually comes when we're most exhausted. Distraction has been wearing us down over the last several weeks, leaving a perfect opening for Apathy to move in and keep us out of action.
No one promised me that this would be easy - in fact when I had the opportunity to meet the Commanding General, He told me to pick up my cross if I wanted to follow Him - I still don't think I was prepared for this. The young ones I'm responsible for are so vulnerable, and I can't protect them. I'm fighting against Distraction so much myself that Apathy sneaks around and creates a stronghold on these babes. Distraction and I are old enemies, but only now do I see how dangerous this foe is. Previously Distraction only hurt me - now when Distraction gets me down, it prevents me from teaching others how to defend themselves against Apathy. Now these two have teamed up to disarm me and attack those in my charge.
So what's my plan? Well, when I was in the midst of the battle this morning I thought my primary enemy was Apathy. It seems clear to me now that I need a counterattack against Distraction in order to protect my troops against Apathy. To the war room...