On September 24 I reached 3 years post-BMT. This is a milestone that I never really imagined for myself, and being alive years after receiving essentially a terminal diagnosis continues to shock me every day. That said, this past year was horrific and traumatizing in even more new ways. It seared into me an intense fear of living – of what could happen to me next, of truly grasping the soul crushing fear that comes with realizing that no one can take this pain away should it reappear. But before I address this past year, I want to set the scene. This is a note that was written for my disability accommodations last fall. This is everything that happened before this past year. This is how utterly tired I was when the scleroderma was only just setting in. Reading this note doesn’t ever stop shocking me, and I lived it. I just want to let it speak for itself.
For reference, I was in school January – June 2017, in New York City working full time in summer 2017, and back at school in fall 2017 (before leaving when I went into renal failure). This note ends in November 2017, one month before I went into renal failure and left school.