Today’s guest post comes to us from a mother called Barbara who prefers not to share her personal information for privacy’s sake. She shares her story here in hopes of encouraging other families who face a very different sort of fasting season.
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It was in the late winter of Sarah’s junior year in college when she told me that she needed to come home. She was very sick, she said. She had lost too much weight. She thought maybe she had anorexia. She wasn’t sure. She was only sure that she wasn’t going to survive if she stayed at school.
When she got home, I was shocked at the way she looked. Gaunt doesn’t even begin to describe it. Sarah had always been thin. She was an athlete. But when she came home, she wasn’t just thin. Her muscles were gone. She had no fat anywhere on her body. Just skin pulled tight over her bones.
And she knew that she looked like someone who was dying. She thought that, perhaps, she was dying. But she didn’t want to die. So we found a therapist and a physician who specialized in working with young women with eating disorders.
The therapist said that, even though Sarah met the clinical criteria for anorexia nervosa, she didn’t think that’s what was causing the disordered eating. Instead, she had obsessive compulsive disorder. Her mind had created ever more elaborate rules about what she could eat, and when, and under what circumstances. And if she couldn’t eat “right,” then she couldn’t eat.
That was good news; the therapist treated someone with an OCD-related eating disorder once or twice a year. The odds of a complete recovery were much better. But there were no hospital-based programs that were appropriate for someone like her. And she was in such dire shape that a hospital might have been the best place for her. There, if her heart or her liver failed, she’d be exactly where she needed to be for emergency intervention. But Sarah would have to fight this thing as an outpatient, living at home.
When treatment began, the OCD controlled everything she put in her mouth. To survive, she had to wrest control back from the disorder. She had to be in charge of what she ate, and when. She had to fight the rules that OCD had created, and she had to win, if she was going to survive.
And her therapist and her physician were both very clear: she might not survive.
She had to eat enough calories every day to keep her brain working and keep her body from shutting down. Even if she survived, she was already at risk of permanent organ damage. Her body had already broken down all of her fat and most of her muscles. Her heartbeat was irregular. Her skin was dry. She was growing a downy fuzz over her body. She was cold all the time. She couldn’t stay warm; staying warm requires calories, and there weren’t enough calories available to keep her warm. She was easily confused, because thinking requires calories, and there weren’t enough calories available for her to think.
She saw her physician every week, and her therapist two or three times a week. And most nights, after she had gone to bed, after I was sure she was asleep, I checked on her to make sure she was still breathing. I had to be sure she was still alive.
Over the first few weeks of therapy, it became clear that my Sarah’s OCD had taken her regular Wednesday and Friday fasts, and the patterns for healthy eating that she tried to follow, and had twisted them all into something ugly and dangerous.
If she was going to survive, her therapist emphasized, she had to control what she ate. She had to starve the rules the OCD had created. She had to weaken them, fight them, destroy them before they destroyed her.
At some point during that conversation, I broke down in tears. I told her that I had to keep my child alive. She responded bluntly: “That’s not your job any more.” It was Sarah’s job. It was Sarah’s fight. Nobody could do it for her.
And if I tried to fight the rules for her, it would make the recovery longer and harder.
“But she might die,” I said.
“Yes. She might.” But if she was going to survive, Sarah had to win.
That didn’t mean that there was nothing that Sarah’s father and I could do. In fact, there was one thing we had to do. We had to avoid giving aid and comfort to the enemy. We had to avoid feeding the rules, too.
That meant that our house had to be free of rules related to food. Until she defeated the rules, there could be no breakfast foods at our house, and no dinner foods. There was just food. We couldn’t suggest that tomato sauce would go well with pasta, or that curry should be served with rice. We could eat it that way, if we wanted to. But not because it was supposed to be that way. There was no supposed to. There was no should.
And there was no fasting.
The physician and the therapist both told us that fasting would endanger her life. Not just her fasting. Our fasting, too. Because our fasting would feed the OCD rules that were binding her.
We had to starve the rules. So we didn’t fast.
On Wednesdays and Fridays, that wasn’t so hard. But Great Lent was approaching quickly.
We talked to our priest, told him what Sarah’s care team had told us. We told him that our fast that year was apparently to eat without rules. To eat without regard for the day or the time. To eat in a way that would save our daughter’s life.
I can’t say for sure that our priest understood. I honestly don’t remember that conversation now. I know we had it. But memory is a funny thing, when your child is mortally ill. There are some memories that are crystallized, frozen in time, and you can go back and replay them over and over, in excruciating detail. You can see the colors, the play of light and shadows in the room, hear the sounds around you. And some memories seem to vanish in the mist.
But the long and the short of that conversation was that, whether he understood or not, we had a blessing to do what we had to do for Sarah.
And that was the most difficult fast I have ever experienced. If you think that giving up meat for Lent is hard, you’ve never been told you have to eat meat to keep your child alive.
Sarah saw her physician at least once a week, and her therapist twice. At first, she wasn’t allowed to drive, because of the risk of fainting or seizures from starvation. My employer granted me a flexible schedule for the duration, and I drove her to appointments three or four days a week.
And I said nothing, not a word, about what she ate or didn’t ate, or when. My husband and I had odd meals at odd times. We snacked when we got home from work. We had a late supper of bacon and eggs. We made grilled cheese sandwiches for breakfast.
And Sarah could eat with us, or not. It was up to her.
Sometimes she would scream at us, ear-shattering, heart-rending screams, because we weren’t following her rules. Sometimes she would tell us that we were trying to kill her, because if we didn’t follow her rules, she wouldn’t be able to eat, and if she didn’t eat, she would die.
The rules knew. The rules understood that, by ignoring them, we were making them weaker. And they fought. Oh, how they fought.
And sometimes, I would lay in my husband’s arms at night, and cry.
But Sarah stopped losing weight. And by Pascha, she had gained a few ounces.
She was learning how to feed herself again.
And I was learning, too. I was learning that sometimes the fast we’re called to doesn’t have anything to do with what we eat or don’t eat. In Isaiah 58, we hear this:
Is not this the fast that I choose:
to loose the bonds of wickedness,
to undo the thongs of the yoke,
to let the oppressed go free,
and to break every yoke?
That year, my husband and I chose a fast that would break the yoke that bound our daughter. We chose a fast that would help free her from oppression. We chose a fast that didn’t look much like fasting.
But it was a fast that looked a lot like love.
Of Such is the Kingdom: A Practical Theology of Disability 