19 December 2012

More on illness

Today, I was standing in line with a friend of mine, buying coffee before we chatted for the last time after more than four years of chatting about our respective PhDs. There was gluten-free cake for sale and I immediately thought of Mei, who has been avoiding gluten because of her skin. Perfect, I thought, I'll get this for Mei: tomorrow she has a school party and Yoko was looking and looking in the store for something to get her. She got her gluten-free muffins: close enough at the time. But this: this was Victorian sponge cake. Perfect, I thought, and joked with the woman at the till about how I would be a hero bringing this home, both with my daughter and wife, I smugly announced. 

Mei avoiding sweets has been much harder on me I think than it has been on her. She doesn't seem to care when she's told she can't have something. She accepts it as being the way the world is. I, however, think constantly of how deprived she must feel, how unfair it is that she is suffering this disease alone in the family. How terrible she must feel, I think, hoisting my own fear of illness on her. I want to give her something — anything — to make it better. 

When I came inside the house, I announced to Yoko what I had brought: gluten-free Victorian sponge cake. Perfect, right? Yoko looked apprehensive: is it also milk free? Milk, dammit, I thought. In all my excitement about the cake, I had forgotten the most important thing she was avoiding, the thing that really sets her on edge: milk. How stupid to have forgotten that: it's like buying someone an accessory for an iPad and forgetting they don't have an iPad. I got angry and argued with Yoko about it--a stupid thing as Yoko has been up all night, week-after-week, trying so hard to make this better, carefully watching everything Mei eats, while making sure Mei feels nothing but love and acceptance and normalcy through it all. I said, But I want to give her cake.

I want to give it to her. しかし、あげたいんだよ。 I want to give it to her. I want her to feel better. I sulked off, both of us angry and frustrated.

Naomi and I ended up eating the cake quietly when Mei had gone to take a shower. When Mei came back down, Yoko said to her, 'Look, your daddy bought you muffins at Sainsbury's without milk or wheat: just for Mei' playing up my role in purchasing the muffins as a proxy for the cake Naomi and I had eaten. Mei smiled and went off to play.
How silly it is to feel pain for someone who doesn't feel the pain themselves.