Continuing Fluctuations

This movement exploration looks at the emotions and relationships developed as part of living with Cystic Fibrosis. Cystic Fibrosis is a chronic condition that causes sticky mucus to build up in the body. This creates problems in many different organ systems, including the lungs and digestive system, and can require a significant amount of medication and treatment on a daily basis. The hope is to create work that touches everyone and helps spread awareness of the disease.

This performance has been created to help raise awareness of Cystic Fibrosis through movement. This collection of work, shares some of the thoughts and struggles of living with chronic illness in a way that anyone can relate to. The hope is to be able to continue to grow this body of work to a full performance in May 2018 that is fully accessible online to allow people with chronic illness to be able to enjoy a live performance even if they are unable to attend.

An Introduction to Heather Brown

I was diagnosed with Cystic Fibrosis as a baby. For me, it has always been part of my life. Compared to many, my symptoms are mild affecting my lungs and digestive system. I take enzymes with every meal, am on oral antibiotics all the time, do breathing treatments twice daily and am occasionally hospitalized to place a PICC and receive a course of IV antibiotics. Growing up, I became interested in ballet and dance and was encouraged to stay active. I was a student at Boston Ballet and Ballet Theater of Boston for many years. I have tried to live my life and not let CF get in the way, which at times meant that I neglected my health in ways I probably shouldn’t and I paid for that usually with a stay in the hospital. I was able to go to college and be a normal student living far from home. This was where I was able to expand my dance education into modern and contemporary movement. After college, I went on to have a “regular” job with a ridiculous schedule and tried to keep dancing at the same time. It wasn’t until I was in a motorcycle accident that I decided to slow down a little and try to build my life around the things that make me happy instead of just trying to fit those things in around a job that was no longer fulfilling. I think having CF has helped me to appreciate experiences and keep life choices in perspective.

Growing up I just remembered being different. I remember not wanting to be different. From a very early age I understood the basic science of what caused my disease. I don’t know when I realized that my life expectancy was shorter than the average person. It feels like it was something that I always knew. I used to joke that dancing was the perfect career because it also is very short lived. I know it was before college. I remember having a conversation with one of my closest friends in college about how grades don’t really matter, I was there for the experience. These are supposed to be the best years of our lives, so I am going to make sure that they are! I think I came to that conclusion because of my CF. I don’t remember a specific moment when I realized my mortality, but I do remember at the time the median age was only 25.

I have heard other CFers say that because of knowing their lives were going to be cut short, they stopped planning for the future for a while. I never really stopped planning for the future, I just always have tried to make the most of the present.

Through creating movement, I hope to spread awareness of Cystic Fibrosis in a way that is relatable to the human condition.