Moving through place and time with scleroderma is like trying to balance a scale and always being in movement, unable to stabilize. Searching for symmetry, I can see that the landscaping around me and my body is asymmetrical: The sky with its moving clouds; the Earth with each different from one another and randomly rooted; […]
One of the main difficulties with scleroderma is eating. “What is for dinner?” became a dark thought, a sentence I did not want to hear. I frequently choke, even drinking a glass of water. The family has had to use the hammock maneuver multiple times, even after trying to take pills. It is highly uncomfortable, […]
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 […]
After one of my monthly blood tests, I received a call. I was at the ceramic studio on my mindful day. Art is my food. I usually do not answer calls or texts in my space, centering, forgetting, remembering, dot after dot, fingers, clay, circular moments, and breathing. But I noticed the number. It is […]
Literature shows that once diagnosed with scleroderma, life expectancy changes from unknown to three to fifteen years, pending cases. Unless diagnosed without symptoms, patients seem to live for decades. Once someone is diagnosed, symptoms have usually begun, such as icy fingers and toes, discoloration, mycosis, gastrointestinal difficulties, …and so the slow disintegration of tissues, skin, […]
Early in the year, my friend Robin and I visited the Descanso Gardens with my youngest son, Nikolai. I was seeking a labyrinth walk, nature, and a friend. I didn’t want to use a walker, so I went with a frail standing body but standing. Aware of my internal ableism, I still could not use […]
I have been attending a Poetry of Resilience group for quite some time now since the pandemic—this latest session is about the body. During our sessions, we discussed making a list of the small things that bring joy. Author Leila Chatti, a guest poet that day, created a list of 100 small things. I am […]
I live in the desert. After a long and dry summer, I sat in my front yard one day. There I set up an area with chairs and a bench to converse with neighbors and friends during the COVID-19 lockdown. I sat down, chest heavy, shoulders tight, and with tears that refused to come out. […]
I live in movement, and my kids know rhythms and notes, especially drums call me. Time has been taken away by many medical appointments. I sought mindful activities, from guided meditations to nature walks, art activities, and prayer. I needed to move at times, and when my body failed, I used the car to guide […]
In Early Fall, I decided to walk in my backyard after my diagnosis. It used to be a place of peace, meditation, and gardening—a place I slowly created each year and built upon with my children. I wanted to be amongst my roses and fruit trees. I tried to pray and reflect upon my life, […]
