After a long time quiet on my blog, A Dancing Light, I realized the depth of my need to not only write, but to share my story and passion for advocacy, fundraising, community and disability. It's taken 23 years of living with invisible chronic illness and a grueling pandemic for me to find my true purpose.
I hope you'll join me here at Chronically Emily as I share my chronic illness experience while I explore and embrace the disability space--a space I'm fully settling into. I am so excited to have my very own webpage!
I first began blogging in 2005 at adancinglight.blogspot.com as a way to stay in touch with friends and family. Over time, it served the purpose of both staying in touch as well as sharing more authentically about the chronic illness experience.
As my health began to improve, I found myself spending less time writing and more time doing activities I had long been unable to do. But I missed writing. Still, I loved being able to get out more, be with friends, date, read books, walk with my dogs in nature and even do a bit of cooking.
On my 39th birthday, I started fundraising for Dr. Peter Rowe at Johns Hopkins Children's Center's Chronic Fatigue and Related Disorders Clinic as a way to give back to the doctor who had given me so much. For the past eight years, I've grown this fundraising into a full-fledged event called Rowe's Research Runners, which raised over $68,000 this year.
This work has given me the privilege of connecting with so many other people living with chronic fatigue syndrome and related illnesses. Again, I find myself needing to find a more tenable and sustainable way of keeping in contact with the different communities in which I love to engage.
So, I've circled back to writing again. I feel that combining my own story with the work of Rowe's Research Runners will create the synergy I want as I pursue my purpose: to bring greater awareness, funding, connection and understanding to living with chronic illness. And most of all, to nurture and grow in community with others.
I'll write more soon about why I'm Chronically Emily now. :) In between blog postings, you can find me on Instagram @chronicallyemily98.