A few days ago, the world was sad to learn that Chris Cornell passed away. My mother was not familiar with Chris and asked me who he was. While telling her, I kept saying he had a “powerful voice”. I remember seeing him with Soundgarden in 1992. I knew some of their music, but when I heard him sing…..WOW! His voice made an impact whether you were a fan or not. Over the years, Cornell’s music has been a consistent part of my life. Chris had a gift and he used it well. The more I heard the term “powerful voice” mentioned on the news, the more I began to think about all of the patients I know who also have a powerful voices.
A powerful voice is obviously not just one that can sing. It’s a person who can tell their story to inspire, change, impact others, and provide validation of feelings. There are many patient advocates who have provided these things to me with their voice. Britt from The Hurt Blogger, Kirsten from Not Standing Still Disease, Rick from RADiabetes, Marla from Luck Fupas, Tiffany from IFAA’s Systemically Connected, and my Southern sister Amanda from All Flared Up have all helped me over the years by sharing stories that provided me with inspiration and a sense of not being alone in this chronically ill battle. My fellow patients, with their powerful voices, inspired me to join movements, pursue dreams, and fight for patients rights. They are the reason I became a patient advocate. They inspired me to tell my story and to strive for changing the role of patients in the world of medicine.
Another powerful voice in my life is Sean, a 17 year-old who has been living with Ankylosing Spondylitis for several years. He decided four years ago that he wanted to do something for others living with juvenile arthritis and he began “Sean’s Squad”. Each year, Sean has inspired friends and family to walk with him to raise money and awareness for the Arthritis Foundation Eastern Pennsylvania‘s Walk to Cure Arthritis. This year the AF made him their “Young Adult Honoree”at the annual walk in Philadelphia. It was a well deserved honor for an amazing kid who found his powerful voice at a young age and is making a positive difference in both his and the lives of others living with juvenile arthritis.
I went to both high school and college with Sean’s mom and dad, so I have known him his entire life. Every day, Sean inspires me with his wit, charm, and dedication to living well with AS. He is an amazing young man that I am honored to know and love.
Blogging has been a way for me to deal with my feelings of living a chronic life. Then I started to notice that patients were interested in hearing my stories. Now, I’m not brave enough to say I have a powerful voice like those I mentioned earlier, but I do hope that my voice/ stories do connect with other patients and make them feel they are not alone on this chronic journey. The patient voice is powerful and the medical community needs to see us more as team members in our treatment instead of passive recipients of drugs and treatments. We are patients, hear us roar.