I haven’t been eating well according to my MS. I’m supposed to avoid yeast, wheat, dairy, gluten, and sugar. And coffee. Yeah. That is a lot. Oh wait, and dairy. I guess the upside is what is the point of dairy if you don’t have some coffee to pour it into?
I stopped eating accordingly about 8 months ago because I was too skinny. I figured I would eat some burgers and lasagna for a little while and go back, but I haven’t. These types of diets or lifestyles take time. It is a series of mucking up before you get it. You develop a rhythm. And you go on.
That’s why on every weekend when I was allowed to eat shit, I sometimes wouldn’t. As much as I wanted to stick my face in the baked mac and cheese, I knew that the practice of it would muck me up. It is hard to get back up from the suction of these foods. The practice of eating the way I used to.
I was reading a People magazine article on Roger Ebert last night. It was about the beloved film critic being silenced by his cancer. Staring at his picture his is visibly maimed. His face a scarier rendition of the pop icon he was. Looking at him scares me-he is a living, breathing reminder of what can happen to all of us. Cancer. But the one thing me, and I’m sure others, haven’t considered is how scary it is that he can’t talk. Or eat. Or taste.
You would think he would mind being vocally silenced, but Ebert describes the sadness of not being able to eat or drink. He is never hungry or thirsty, but he dreams of tastes. He once begged a doctor to put coke in his G tube. He couldn’t taste it. But he still wanted the recollection and comfort of his old drink. This old ritual; a distant memory of taste. The doctor agreed and poured into his tube.
What he misses the most isn’t food, but the experience of dining; the experience of eating at a family reunion,a greasy spoon at midnight. He grieves for these experiences, not so much by the loss of his voice. Fucking fascinating. As hungry humans, how much of us would choose food over voice? Think about it-if you had to lose one, which would you choose? To never speak again or never eat lasagna or drink a coke, or anything, again?
I didn’t have my lower jaw removed due to a slow growing salivary tumor, but holy fuck I can relate to this. When I am on the MS Diet, I lose this entire side of my social life. My friends meet up for dinner and drinks and I can show up, but I miss out on the joy of dining with them, even if I can eat a salad, there is gluten in the dressing. They don’t have brown rice. Butter in the sauce.
The temptation of just sitting there and watching them eat, smelling their food, my stomach turning over, sucks. It is hard, nothing enjoyable about it. Furthermore, who wants to dine with me? If you had a 106 lb. skinny-ass, boring girl next to you while you ate a soufflé it would probably not be very enjoyable for you either.
Ebert’s book, Life Itself, is coming out in a few days. I’m going to buy it. I have a newfound respect for this man, who I truly never disrespected-I never considered him at all until I stumbled on this article. He says in it “To begin with, I must make this clear: Many people have problems much worse than mine, and at a much younger age, and sometimes joined with other disabilities. I may seem tragic to you, but I seem fortunate to myself.”
How can I not buy his book after that? Or follow him on twitter? I want to be his friend. Amen.
