Becky: Since I can't get gifts for my family this year because we only have money to spend on your meds, I'm going to give my family lists for Christmas of all the ways they are wonderful. I'm going to give your family lists of all the ways they suck.
Adi: That's not really in the Christmas spirit...
Becky: Yes it is! Santa brings coal! Becky...brings reality...
Now here is yet another reason my girlfriend rocks.
Becky wrote this letter to my parents. It made me cry. I'm posting it because I just want everyone in the whole world to know what a wonderful partner I have, what a strong and honorable person I have in my corner, loving me, fighting for me.
Dear Ann and Jim,
Your daughter is sick. Your daughter is in pain. Every day she struggles to feel ok - not well, not great, not healthy, just ok. Every day she puts every ounce of practically non-existent energy into figuring out how exactly we are going to get her the treatment she needs to heal. Every day she thinks about any little thing, any sacrifice we can make in our regular lives, so that she can be in a little less pain. And, of course, she thinks about how on earth we are going to pay for it.
Adi did not create her disease. She did not imagine it. It did not develop out of emotional distress our trauma. Her body was invaded by a physical entity that has done nothing but wreak havoc on her for the past ten years. She did not choose this. Nor did she choose to have parents who would say, "of course we care about you!" and then squirm their way out of feeling any responsibility, any compulsion, any desire to help her get better. When you drive a BMW and a Lexus (SUV hybrid for that matter), when you own two houses, when you have money to spend on flying your entire family to Italy for a week, when you go to Russia, you are not without. You are not suffering. You do have enough to share. You choose not to. And you know, when I think about it, I kind of feel like if Adi were given the choices of having a healthy body and her current family, or being sick and having a family that showed up for her, actively cared for her (visiting, asking for what she needs, encouraging, listening, participating, really being open to HER experience), I think she might suffer the illness for that family. Maybe I'm wrong, but I see her suffer not simply because you will not help get her the medical treatment she needs, but also because she grew up with parents who did not understand her or how to love her.
Maybe she will eventually get to have both things - a healthy body and a present, tuned in, loving family. You actually have a lot of power in making both of those things happen.
Isn't she amazing? I swear she's like my own personal Mother Teresa...