dear mom:

I didn’t ask for this. I didn’t want to be hungry once, maybe twice a day for the rest of my life. I didn’t want that hunger to be so easily satisfied by a few gulps of soda or a couple of slices of toast. I know that changing what you put in front of me won’t change my appetite. I have tried it. I have tried damn near everything. I put my sanity on the line for a cure.

It doesn’t happen like you want it to happen. You can’t wrestle control of my diet out of my hands when I hardly feel in control of it in the first place. Unlike you, my doctor (you know, the one with years of training) understands that I need to be the one moving forward in ways that are comfortable for me. This is why she sat with me and asked me what I’d like to eat. This is why we brainstormed easy-prep suggestions.

But you, on the way home, decided that if you could only keep waving new and nauseating bits of food under my nose, whatever this problem is will reverse itself. You don’t ask me what the barriers are to eating. You assume it’s all my choices. When I tell you this is effectively blaming me for my own illness, you say I’m wrong, but it’s not yours to say, what I perceive from you. It’s not your place to tell me how I feel. It’s your place to ask me what you can do, not decide what I need. It’s your place to ask me what I need.

It’s not your place to extrapolate “wheelchair forever” from “two hours grocery shopping each week in a cart”. It’s not your place to make a value judgment, for that matter, on wheelchairs or carts. Assistive tech exists for me. That’s right, Mom. I’m 27 and I haven’t got the strength to buy groceries for myself. You can’t accept that, on some level that is inching its way to the surface. You can’t accept your daughter in a cart long enough to regain a little independence because you’re sure that those two hours a week will lead to Stephen Hawking.

When you say that, about people letting themselves waste away until they’re stuck in wheelchairs, I hear “You will be lesser if you need this help.” You fail utterly to see that it’s not a matter of letting yourself waste. People who gradually need wheelchairs more and more often may have progressive illnesses, or they may be noticing that yes, in trading one type of mobility for another, they can live the way they want, not normal but equal.

My whole life, including my life with you, is a fight for equality. Would I take a cure? Yes. I had mobility and stamina once and I wouldn’t mind them back. But I will not sacrifice equality on the altar of wait-for-a-cure. No. I will be human the same as you, as valid a person as you, and I will do it on my terms.

(And Stephen Hawking is fucking awesome.)

I will eat food I have chosen. I will choose that food in a way that makes sense for me. If you don’t like it, you can send me with my father and the list so you don’t have to look at me. If an alternative independence disgusts you, I’ll arrange it so you don’t ever have to see it, but hear me: I will have it. You will not dictate the terms of my equality to me. That is not your place and never ever was nor shall ever be.

I’m going to break every barrier holding me back. Don’t be one of them. You won’t like it.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.