My trip to Charleston last week went great, and I was feeling well the whole time. I’m still feeling well and am finally off of Prednisone. But I still don’t fully trust my body.
It’s been months since I needed to urgently use the bathroom, but I still worry sometimes about having an accident. I still carry my “emergency bathroom kit” with me when I travel, although I’ve pretty much stopped carrying it with me other times.
I’m still afraid. Afraid that by not carrying it, I’ll jinx myself and end up needing it. Afraid that if I make too many plans for the future, I’ll end up needing to cancel them. Afraid that if things are going well, that means it’s only a matter of time before I end up back in the hospital.
In her wonderful book about vulnerability, Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead, Brené Brown calls this “foreboding joy.” It is the feeling of waiting for the other shoe to drop, the habit of “rehearsing tragedy” to lessen the feeling of vulnerability that often accompanies joy. As she says, “We’re trying to beat vulnerability to the punch. We don’t want to be blindsided by hurt. We don’t want to be caught off-guard, so we literally practice being devastated or never move from self-elected disappointment.”
Brown says the answer to this foreboding joy is to practice gratitude. So every night I try to write down at least three things I’m grateful for, or in the words of Marie Kondo, three things that “spark joy” (I use my Marie Kondo gratitude journal, because it sparks joy).
I don’t know what the future holds. Entyvio may stop working for me at some point. I may need surgery.
Or I could go into remission for many years.
(I’m worried that by writing that down I just jinxed myself.)
All I can do is be grateful for what I have and hopeful for the future.
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