Help! no, don't. no, do.

getting helpThis morning my being did back flips when I read this account by a woman with MS of what it is like to be fed. She remembered back when she was a young mother how she escaped her husband and child to shop, then tucked herself into her car and tucked into a big bag of chips and a soda. A happy private binge is not a possibility now, and she must endure humiliation or anger or whatever when people forget to feed her, or produce such a big bite she has to let it fall out of her mouth, or maybe just reveal impatience or awkwardness or reluctance. 

"My friend loads up a forkful of chocolate cake and just when she is about to put it in my wide-open mouth, someone makes a joke or a conversation sparks. The buttercream-frosted delight hovers two centimeters from my face, wavering precariously. I keep my mouth open in anticipation, while my friend is drinking a glass of chardonnay and having a great time talking to other people at the table. She completely forgets that she is feeding me, and the night ends as a personal tragedy — I don’t get to enjoy my beloved chocolate cake. So close, and yet so far."

Can you imagine? I can. It makes me weep. Not only doesn't she get cake but she also doesn't get to giggle with her friends while she eats. Fury arises in me as I imagine how she is excluded and disempowered. If it were me, the emotions would make it even more difficult to participate. 

I am afraid of eating if I might need to say something, so I don't eat in company anymore. People say they won't talk, but they do, or they ask if I need something when I'm just starting the chewing process and then watch me while I awkwardly finish. I shouldn't be mad because they are here for me. I should be grateful.

Ok, I've already complained about gratitude, let me leave that and complain about helplessness and lack of power. I can't do stuff. I can't prepare a meal, can't stir, can't stand without my heart palpitating its protest. And I am a diehard DIY. I couldn't tolerate being dependent on hair stylists so I cut my own hair. Made my clothes. Cooked my food. Took the subway, never a cab. 

Now I beg for help from people who have their own busy lives, as I once did. No, I don't beg. I hint. They don't get it. I'm embarrassed and give up, do without. That's what I do. I'm a fucking hero. I adapt. I choose dignity over food. I choose privacy because I still can. 

Obviously, I have a lot to learn. Near the end of the essay, she tells how her young cousin overcame his awkwardness and fed her, and how loved and cared for it made her feel. And she coaches herself: "When I communicate how I want to be fed, I sometimes feel I am a burden, but I also feel that this communication is essential if I am going to be treated as a person who deserves to enjoy her food, her sanity."

I am heading to the beach for two weeks so I won't be writing again til the 27th at least. I will need a lot of help. I will try to be nice about it, but maybe not too nice. 

August 6, 2021