In the words of my husband...
Having a child with a chronic medical condition puts an enormous strain on families, and the ketogenic diet (modified or not), for all that it can be a miraculous help for the child, is not always easy for the parents. This story is set at a particularly dark time for me...
Jumping Out of a Well
He is making dinner. He pushes the stack of mail on the kitchen counter to one side to make room for the cutting board. Pulls the scale within reach amongst the half empty water glasses and the morning's coffee mug. Steps to the refrigerator to get some broccoli. The produce drawer emits a faint odor of rot, but the broccoli in question is still good, only a little yellow around the edges. He carefully trims off the stems and moves the florets to the scale, scattering little green bits on to the counter. The weighing accomplished, he pulls out the kid's plates,shoving last night's wine glasses to the back of the counter to create room. The weighed vegetable goes on the girls plate, and he rips off some for the boy too. The melamine plates have four compartments, decorated with snowflakes and Santa and animals in hats and scarves. It is his job to fill those compartments.
He glances at the clock on the windowsill. 5:35. Too late to make rice. It is dark outside, and he feels heavy. A violin is being played badly nearby. His wife is teaching a lesson in the next room. The kids are parked in front of the television. It is overwhelming.
He reaches for the ipad. Just a few minutes to escape the pressure of those empty compartments. Then he will have the energy to continue. He is interrupted by a squabble from the den. The boy is whining loudly about something, the girl replying in kind. Embarrassment and anger rush through him, and he yells in a hushed, ugly tone. He needs to keep them quiet so they don't interrupt the lesson. The boy comes into the kitchen. He is hungry, and does not understand that dinner is not ready. He does not understand the empty compartments.
The thawed chicken comes out of the fridge, along with a waft of whatever that smell is. The cutting board is tossed into the sink, where it nestles into the rest of the dirty dishes. He pulls out the yellow plastic mat used for cutting chicken and rests it on the scattered broccoli fragments. The raw meat is cold. He doesn't bother to cut off the fat; the daughter needs that anyway. While he is cutting, he wonders when he stopped being a person.
Last night, sitting at either end of the couch in front of the television, his wife turned to him. He thought she seemed upset. "Do you even love me anymore?" she asked. This seemed like an odd question to him. The only thing he loved more than her was forgetting that he was broken. He did that whenever he could. He heard his voice saying flatly "Of course I do," with all the feeling he had available. He thought about telling her he was broken, but figured she knew anyway, and to say it was the opposite of forgetting.
A trip to the pantry to get the oil. Another to get the macadamias. Bending down to get the pan from underneath the stove feels difficult, but not impossible. He pours the oil in the pan, noting where the non-stick coating is scratched and frayed. Everything was falling apart. The thought of buying a new pan makes him feel tired. He weighs the macadamias and puts them in a compartment. He picks up the ipad.
With the Daughter's situation, one thing led to another. Four years ago, she would stand in place and spin, arms outstretched. The spinning led to the headaches that made her eyes go funny. This led to the emergency room, where it was learned that in fact, the reverse was true. This led to the diagnosis, which led to the hospital, the first medication, the side effects, more seizures, more medications. He watched all this, helpless. He spent so much time thinking, searching for explanations, spinning in place. He was helpless, waiting for the next blow. He pretended to be a person, but he suspected that there was a faint smell of rot.
His wife was strong. It seemed to him she could find relief by doing things for the daughter and he was envious. He couldn't do that. When he tried, the sense of futility, the fear of inviting another blow, made him tired and slow. When he spoke, his voice was far away from his thoughts, echoing up from the bottom of the well, only meaningless sound reaching the open air.
He put the chicken in the hot pan, put the yellow plastic mat in the sink, and with a burst of energy, swept up the remnants of broccoli to put in the compost. The container under the sink was full. That was his job, emptying the compost, the recycling, the trash. He always delayed dealing with the waste until it was too full, and the bag would drip when he lifted it from the container, leaving a trail of evidence of his brokenness on the floor. At times when he had a bit more energy, he would wonder if he was depressed, but for now he just sprinkled the remnants over the top and promised himself he would deal with it later.
Moving back to the refrigerator, he extracted the heavy cream that was a staple of the Daughter's diet. There was a row of yellow cartons stretching to the back of the refrigerator shelf, and the one in front was almost empty. He thought it might suffice for her meal tonight, which filled him with relief, as he hated pulling off the white plastic tab to open a new container. He got the cream sorted, and returned to the chicken to flip it. The hot oil spattered on to the stove top and he was grateful no one had cleaned it earlier. The cycle of clean and mess, clean and mess was deeply troubling to him, like spinning in circles, going nowhere. That is the way you would move at the bottom of a well.
After grabbing some random items from the pantry for the boy's compartments, he checked the chicken one last time. It was just about done. The absence of tortured violin from the studio meant that the lesson was almost done too, the kid packing up while the adults talked. He prided himself on getting dinner done exactly when his wife was done teaching, accounting for the parents who she liked to talk with afterwards. He measured and cut the chicken, and finally the compartments were filled. The sense of relief was short-lived, as he knew the cycle would repeat again. Making the meal meant making dirty dishes. Cleaning the dishes made empty compartments.
He hoped he had done enough today; he did as much as he could, which was also as little as he could. Sometimes his wife would get so frustrated. "You need to do more," she would tell him, "you need to help more." This caused him to feel a deep despair and he would defend himself against that feeling. "I do more than you think, I do more than I ever have!" He would argue his case and they would fight. He would watch this play out and think, "There is something wrong with me, I am broken, I am so sorry but I am broken at the bottom of a well, and there is no light here, only spinning, and you are asking me to jump out of the well, and no matter how I try, I can't jump even high enough to see the light and then I fall back and it hurts, and it hurts."
As it turns out, there are two ways out of a well. One is to call for help, and the other is to float out on your own tears. He had no voice, and his eyes were dry.
His wife comes into the kitchen, looks at the food on the table, looks at the mess on the counters. "How were the kids?"
"How are you?"
"Fine." He echoed