These last few weeks have been very rough on me. I feel as if I have been going through both a spiritual and existential crisis. Sarcoidosis has completely shifted and changed my life and how I view and live in this world.
The word “silence” has been both a strength and a weakness to me and I will explain why.
When I was first diagnosed with sarcoidosis seven years ago, I was in the midst of a mindfulness and meditation teacher training and still employed as a nurse and health care administrator in a large health system. Quickly, my disease progressed and so did my symptoms, which led me to take an early retirement, something I had never planned for. I still wanted to do so much more with my career, but I just could not deal with the heavy load of work and coping with a new diagnosis of sarcoidosis and all that the disease entails. I know many can relate to the struggle of finding doctors, dealing with the side-effects of drugs, surgeries, biopsies, fatigue, and overall feeling depressed or sad every single day. On top of all that I was also dealing with a right ocular pseudotumor which eventually turned out to have granulomatous tissue.
During a particularly difficult time with sarcoidosis, I completed my training in mindfulness and went to Sedona, Arizona for my final training and certification. Yes, I was a driven type A personality. In those 14 days in retreat, I found the power of silence, reflection, and learning to listen. At the same time, I learned techniques to calm my body, thoughts and mind. This type of silence has proven to be lifesaving for me throughout all these years.
Unfortunately, a negative version of silence in my experience is when doctors did not know what to tell me because they just did not know much about sarcoidosis. This silence drove me to find out more, educate myself on sarcoidosis, and advocate for myself. The tools on the FSR webpage helped me immensely and continue to guide me. I will always feel indebted to FSR, its leadership, board, and employees for everything they do for those of us with this diagnosis.
More importantly, what did silence in my training teach me? It taught me patience, stress management, resilience, and gave me peace in many times of turmoil dealing with this disease. My training and daily practice of mindfulness and gratitude has also led me to teach others how to use these tools. Please take the time to view and practice with me on the mindfulness meditation series I have posted on FSR page.
I am so grateful for learning how to thrive with this disease and hope to continue to do so. I hope others know there are many fighting for treatment options and hopefully a cure someday. If you need support, please reach out to FSR and they can help guide you.
Author: Susan D’Agostino
Susan is a certified mindfulness meditation instructor through the McLean Meditation Institute. Susan is a sarcoidosis warrior and has had a life-long interest in the mind-body connection, specifically as to how the mind affects the body in prevention of disease and in its recovery from illness. She is a retired registered nurse, and has worked in the health care setting in various roles for over 40 years. Susan utilizes meditation and mindfulness practices in her own daily life. As your meditation and mindfulness coach, she will teach you techniques that will help you in your personal journey to health. Susan joined FSR as a Patient Advocate in 2020, and a Patient Navigator in 2021. In 2021, she hosted the FSR Virtual Wellness Mindfulness and Meditation Series. You can view the entire series in our video library.
“But we are not living in eternity. We have only the present moment, sparkling like a star in our hands — and melting like a snowflake.
We’d better get started”…
Marie Beynon Ray