Tuesday, August 20, 2013

Am I not your donkey?

I have found the character who I identify with most in the Bible: Balaam’s Donkey. I know this must seem confusing, but let me explain. The story of Balaam and the Donkey is an excellent metaphor for the trouble with invisible illness.

Two years ago, when I was just starting to get into audiobooks, I got this idea that I'd listen to the entire Bible. Not for any religious reasons. Actually I think my main motivation was just to get better at Biblical trivia questions on Jeopardy. I'd also read a lot of "100 Books to Read before you Die" type lists and the Bible was usually on top. 

Of course, I didn't finish. I couldn't tell you how far I got. God help you if you lose your place in any audiobook, but especially The Old Testament. I gave up somewhere around First or Second Kings. Not because it wasn't a good listen -- it really was -- I think I just got tired of losing my place.

I didn't have an extensive Biblical education, but I did recognize most of the stories. Many were new though, like Balaam and the Donkey. One night, home alone, I'm sitting on my usual spot on the couch, listening to far away stories about King Balak and the Moabites and the land of Canaan, when I suddenly start crying and experiencing this completely unexpected catharsis. Because there it was so neat and compact and allegorical: the story of my diagnosis with CFS. 

Context: Basically, Balaam is traveling on an important errand, and he is riding a donkey. The trouble arises when God keeps putting an angel in their path, and only the donkey can see it. 

 And the donkey saw the angel of the Lord standing in the road, with a drawn sword in his hand. And the donkey turned aside out of the road and went into the field. And Balaam struck the donkey, to turn her into the road. Then the angel of the Lord stood in a narrow path between the vineyards, with a wall on either side. And when the donkey saw the angel of the Lord, she pushed against the wall and pressed Balaam's foot against the wall. So he struck her again. Then the angel of the Lord went ahead and stood in a narrow place, where there was no way to turn either to the right or to the left. When the donkey saw the angel of the Lord, she lay down under Balaam. And Balaam's anger was kindled, and he struck the donkey with his staff. Then the Lord opened the mouth of the donkey, and she said to Balaam, “What have I done to you, that you have struck me these three times?”And Balaam said to the donkey, “Because you have made a fool of me. I wish I had a sword in my hand, for then I would kill you.” And the donkey said to Balaam, “Am I not your donkey, on which you have ridden all your life long to this day? Is it my habit to treat you this way?” And he said, “No.”
Then the Lord opened the eyes of Balaam, and he saw the angel of the Lord standing in the way, with his drawn sword in his hand. And he bowed down and fell on his face. And the angel of the Lord said to him, “Why have you struck your donkey these three times? Behold, I have come out to oppose you because your way is perverse before me. The donkey saw me and turned aside before me these three times. If she had not turned aside from me, surely just now I would have killed you and let her live.” Then Balaam said to the angel of the Lord, “I have sinned, for I did not know that you stood in the road against me. Now therefore, if it is evil in your sight, I will turn back.” 

The moral is, listen to your donkey. Trust in your donkey when it has aberrant behavior. And if you're a doctor, give your patient the benefit of the doubt.

I don't know if that's the takeaway the writers intended, or what a minister or Biblical scholar would say, but to me it's clear enough. 

Before I got sick, I was a straight A student. I wasn't perfect, but, as my dad always used to say, I was "practically perfect." I was a good kid and a good teenager. Teachers loved me and I took it for granted they always would. I didn't drink or do drugs or get in trouble with the police. My parents didn't have to worry about me getting into college. I had a pleasant attitude and I did what I was supposed to. I had a good relationship with my parents, I didn't even mind being seen with them at the movies.

And then I got sick, but no one knew it. At first I thought I had mono. But after I was tested three times and the results were still negative, everything changed.

When I started missing school, sleeping through class, and getting bad grades, I lost my favored status with my parents and teachers. It was confusing at first, but I was so tired I didn't have time to think about it much. Looking back though, it's a little bit of a shock to think how quickly I lost their support, and seemed to have instantly switched from good kid to bad kid in their eyes. 

None of my teachers ever took me aside and said, "Hey, is anything wrong?" or "I noticed a change in your grades and behavior, is everything OK?" There might have been a "This isn't like you" but if there was, it wasn't a kind and concerned comment, more of a reprimand.

There's no need to retell everything, I'm sure I've written about most of it in this blog by now. Just a few moments keep coming back to me: a morning when I was lying in bed, too tired to move or talk, and my mom, worried I was missing another day of school, yelling at me, "Why are you doing this to us?" 

My dad, blowing me away by offering to take me to a concert in Chicago to see my favorite band, because he thought I was such a good kid that I deserved it. And then two months later when everything fell apart, laughing in my face when I naively asked if we were still going.

"Why is Alison missing school and failing classes? I guess all teenagers go through a rebellious phase. It was bound to happen."

My chemistry teacher, in a bad mood, calling me out in front of the class: "And Alison! Sitting there with a glazed look in her eyes like she doesn't give a damn." I was surprised and hurt, I honestly thought I'd been paying attention.

"Why is my donkey veering off the road? I guess she's finally lost her mind. It was bound to happen."

I wanted them to do what I couldn't, and what Balaam couldn't. I wanted them to think, "Hey, I know the doctor says there's nothing physically wrong with Alison, but maybe there's something there they can't see, because we know Alison, and she is not like this."

"Hey, why does my donkey keep veering off of the road? She's never done this before. Well, she's a good donkey. Maybe she has a good reason." 

Maybe it's asking too much of them. I know they think it is. I used to cry about these memories to them, and ask for an apology, thinking maybe I needed it to move on. But they still refuse to apologize, because they don't think they did anything wrong. "How could we know what the doctors didn't?" They did what they thought was best for me. They always have. 

I know it isn't good to dwell on the past, and I try not to. I do. But this experience, of finding out just how...conditional it all was -- it's hard to put behind you.

I wish that my parents, a teacher, or someone, had had so much faith in me that they would have said, "I don't care if the doctors say there's nothing wrong; there has to be, I'll keep going to doctors until I find the answer, because I know Alison and she is not like this."

And ultimately, I wish I had had that much faith in myself. But maybe that is too much to ask too.