I want to believe. In the upswing, the righting, the great correction.
After a blast of Remicade yesterday I was told I would start seeing some improvement. But I also heard that it might be possible I could need another dose next Monday. Thanksgiving was brought up (not by me, as I’d been assuming all along I’d be fine for that – placing my faith in The Great Pumpkin, I suppose). No one saw a reason to say I couldn’t go. Turkey is a good food for me right now. (Other regular features of our festive meal, like empanadas or my mom’s famous cheesecake, not so much.) It feels good to believe the rosier forecast, but I’ve been smacked down so many times in the past couple weeks that it’s hard not to be cynical.
I had a long chat with the social worker while I was getting the infusion yesterday, but it wasn’t the one I’d already developed a rapport with, so mostly I just kept my eyes shut, talked, and cried. It was fine. But I treasured our even longer chat with the nutritionist more, because it provided the essential information for building me back up again, safely.
Last night J went to shop for the tools of my rehabilitation: coconut water. Canned peaches. English muffins (white flour). Today Mom bought some more items: a chicken breast, pastina. Young A stayed home sick from school today – he is my canary and often succumbs to illness when I do – and my heart almost bubbled over with happiness to have Mom here tending to us both the way she tended to me when I was his age and home sick from school. Chicken soup with stars. I left my room and went to sit at the table to eat – my first out-of-bed meal in days.
Young A was happy to see me there at the table. He’d eaten his soup and the pasta they’d packed him for school before he decided he wasn’t going. He popped grape after grape into his mouth. He’s grown up a lot in the past two weeks. His whole face has changed. I want to believe he’s leaning out, stretching into five (three months from now), leaving the baby behind. I can’t quite excuse myself from this transformation. (I’ll stop there, short of catapulting myself on another fruitless guilt trip.)
I feel like I am taking my very first steps from the cave. I feel my strength returning literally by the hour. By Friday I may even be able to walk to the corner, turn around and come back.
Please know this. When I stand at the mouth of the cave, I am going to raise a large club in the air. And I am going to tell anyone who will listen what it is like to lose (as of this morning) 15 pounds of your body weight in two weeks. To spend your days tethered to the bathroom or coiled around yourself trying to quell the great pain your belly is causing.
And then I’m going to stand there and wait to hear what you have to say. Here are some helpful hints. You can tell me it’s awful. You can say nothing and give me a hug. You can tell me you cannot imagine it (I surely could not, until it befell me). You can send flowers (as a friend did last night) or feed my other senses – tell me a joke. Or read me a poem.
What I never want to hear from you about this is that I look great. This is not a concept that has been part of my worldview before or now, and your insistence on bringing it up will make me hate you.
Had you liberated a camp, would you have said this to a survivor of the Shoah? Then why on earth would you say something like this to someone who has clearly been suffering in such a way?
I have heard this from people who should know better. And who acknowledge it and then persist in saying it. And to those who would persist I just say: Picture me at the mouth of the cave. My club is aloft.