Some of the organs that can be affected by scleroderma are the lungs, so Dr. K referred me to a pulmonologist early in the diagnosis process to have a clear idea of the state of my lungs. I underwent several tests, and not all lab technicians were kind. I frequently felt like a specimen and not like a human being. “Breathe normally!” one of them kept asking so they could get a reading. “I think I am here because my breaths are not all that normal in the first place. You are not making sense,” I thought. “Why am I breathing through a machine?” “I don’t like this!” “This is so artificial.” “There is nothing normal about this…” And the technician would repeat, “Breathe normally! If you don’t, we must redo the test and start over again.” “Why is it my fault? How can I control this?” I thought, “Relax, breathe; it’s time to do yoga,” I remembered from mindfulness classes and yoga training.

Chest x-rays, CT scans, sleep study, …

The result day was scheduled months later because that is how it goes with our healthcare system. I did not choose my pulmonologist. My insurance did…I didn’t choose my appointment. I was just told. I did not participate in this process, but for breathing. And I felt that my breaths were under the hands of a stranger. Power over my life given to an insurance company that only sees me as a client, a specimen, a black dot on white paper, a member number, not a name, not a mom, not a poet.

I want to blow on my poems like people blow on their candles, year after year: one poem, one breath, words flying. Leaf, one, e, music notes, circular motions, a, strange print, standing, water, hand, head, stay, a,a,a, e,e,e, i.i.i. o,o,o,…vowels from my lungs, my poetry. Lyrics.

Dr. S said, “Results are not bad, some mild to moderate fibrosis. That’s the scleroderma. Sleep apnea, yes.’

Nih nih nih – i, i,i. His words sounded like chalk on a board.

a, e, o, u (breaths in English)

a, e, o, u (breaths in French)

I want to go to recess, run, twirl in circles, do a handstand, and walk upside down in a world that does not make sense.

ha