Ten years ago today, I lay on a hospital bed before what was supposed to be an appendectomy. I had eaten half of an egg roll the night before, and my body had revolted. The surgeon told me that he would not be removing my appendix, after all. It was a close call, and most of my intestinal tract would have needed to be removed if he hadn’t paused for a moment. Had they cut me open as planned, the infection would have spread.
It turned out, appendicitis was one more (brief) misdiagnosis to add to my five previous years of feeling awful. I had started to get sick when I was fourteen. I wish I never learned to comply with the world telling me how it is, when it isn’t.
Except, the surgeon used words like autoimmune and incurable at me this time. It was almost comical, after five years of being told I was fine when I wasn’t. Because, hearing those words, I really just didn’t want it to be true. When you grow in a world that gaslights you, you don’t want the answer you finally receive to mean forever. You want to receive one pill and be fine and have the pleasure of having been right and then go on living your life as a healthy, untethered human. But, forever–it turned out, it felt worse for a moment not to hear that I was fine.
I joked to everyone who knew me that my distended abdomen (that had led to my hospitalization) was merely a very odd pregnancy. Like some parents announce the gender of their child, I announced a…Crohn’s baby?
[I suppose I just wanted to change the conversation.] It can be hard to learn you have something you can never get rid of. And everyone wants to “help.” But, just like everything else in life, I have learned that the only thing I have the power to do is to accept it, within my realm of capability.
I use that language because it isn’t totally surrender. I am not resigned to my circumstances, even if some of it involves enduring things that are less than enjoyable. And, the truth is, there are a lot of aspects you aren’t thinking of beyond the disease that I do not enjoy. The treatment itself, for example. The testing I’ve had. The social component of having a body that functions differently. The exhaustion. Having one more difficult-to-understand layer upon layer upon layer.
Because incurable isn’t solved when I make you a list of foods I can’t eat. That isn’t how it works. It’s the time of day. It’s how much. It’s whether I’ve exercised yet. It’s how I woke up feeling. It’s how much sleep I got. It’s what else I’ve eaten that day. It’s what time I have to be up tomorrow.
The only way for me to deal is to know that I function differently, and to know that there is a language I have to learn to speak, and that it is the kind my body is trying to help me crack. I have to trust my own wisdom before anybody else’s.
Ten years ago, when I was told I had severe fistulizing Crohn’s, I was socialized to think my answer should be, No I don’t. And maybe, someplace and sometime, it is true. [That I don’t.]
Truthfully: if I waved a magic wand, I would probably want that, among other things. But I would never want the last ten years to go away. The lessons. The pain. The recovery. The self-efficacy. The discovery.
If my ability to enjoy deliciousness had never left and come back to me…I wouldn’t be writing this right now. Until I know the other side of things, all I can do is listen to and abide by my own rules as they make themselves known to me.
the process can be just as important as the getting there
[To read the only other post I have written about this, click here.]
One Year: Coffee Blondies
Two Years: Peanut Butter and Jelly Coffee Cake
Three Years: Mozzarella Grilled Cheese with Harissa, Dates, and Scallions
Four Years: Chocolate Chunk Cookies
Five Years: Pecan Buttermilk Fudge
Six Years: Brown Butter, Goat Cheese, and Chive Drop Biscuits
3 inches fresh ginger, peeled and grated
zest of one orange
3 cups filtered water
juice of one whole lemon
1 tsp dried turmeric
1 pinch cayenne pepper
1/4 cup honey
1/4 cup apple cider vinegar
Combine ginger and orange zest in a large saucepan and cover with water. Turn heat to high. Add lemon juice, turmeric, and cayenne. Bring to a boil, then immediately to reduce to simmer, 5 minutes. Add honey, stirring in to dissolve completely. Stir in apple cider vinegar. Use a handheld blender to blend the ingredients together, then strain. When ready to serve, dilute with warm water, to taste. To store, cover tonic and refrigerate up to three days.