I haven’t written here in a while. I just stopped wanting to write about my health because it became something that was too big for me to put into words. The constant fear that I kept at bay through a careful maintenance of “fight or flight” mode slowly started to collapse around me. I also […]
On Friday it will have been 3 months since what was hopefully the last of many brain surgeries.While I am quietly hopeful at the thought of resolution, it is not easy for me to inhabit my skin, this body, or this world with this new news. While everyone acknowledges alongside me that this will be […]
Anxiety and fear, they can be gripping. They cause a weight that makes the act of getting up off the couch an act of force and willpower that is hard to muster. My day started with worry for someone I love very much. Then it shifted to frustration at an unfair world. Then it shifted to […]
As evidenced by the residual tears on my pillow and the fact that I am Google searching things Ernest Hemingway said while I lay in bed, today was a rough one. I woke up feeling lonely with a headache that would respond just enough to medication to be tolerable but not enough to let you […]
I was doing great. I was upbeat, I was present, I think you could even have called me peppy for a bit. I was unphased by my 10th brain surgery (11th surgery overall). I was singing Jason Mraz’s “Everything is Sound,” and taking the uncertain and unwritten future as a reason to stay firmly in […]
Today I get to hear the news I already know, a brain surgery sits on the horizon.
I figured something out about myself. I’ve stayed, in a way, frozen to a version of myself. I used to think I was stuck in a protracted childhood because my tumor caused me to regress, but then I was like, mehhhhhhhh, that sounds like a lot of psychoanalytical pucky. But I knew I was stuck. […]
Sometimes we remember, and sometimes we imagine, and sometimes those two things don’t feel that far apart. T-minus one month until brain surgery….
I recently thought I had made progress on the emotional side of healing. The physical side, well that was a mess, and my CSF just can’t seem to want to stay in my body so we do what we can do. And I secretly hope that Herbert hasn’t grown and I hope and hope that […]
Sometimes I feel ok. Those times I think, alright if it is spinal fluid seeping out of your nose all day long, you’ll figure it out. Sometimes I feel sick, physically and that makes me sad and that’s not great but I medicate, literally, and then I feel ok. But mostly I feel sad. I […]