Doing Better

Editor's Note: Jessica Feeley has been on staff at the DMRF since 1998. She is the editor of the Dystonia Dialogue magazine and moderator of many of the DMRF online forums.

It’s a joke, but not, that in moments when I feel like I need to be a better person, I aspire to be more like my dog.

As far as I can tell, these seem to be Cici’s rules for life:

• Be enthusiastic about pretty much everything (especially cheese).
• Greet people with joy.
• Be brave even when it’s clear you are nervous.
• Kiss a lot.
• Don’t be afraid to eat weird things. Or, what the heck, roll around in them.
• Don’t irritate the cats.

I often find myself considering these nuggets of dog wisdom in reaction to the extraordinary humans I am in contact with every day.

I have been on staff with the Dystonia Medical Research Foundation (DMRF) since 1998. Like most people, I did not know what the word dystonia meant until I had a reason to learn it. Fortunately, my reason was a job, not a diagnosis. I learned quickly that dystonia teaches hard lessons. The rules dystonia imposes are unfair. The consequences can be physically, medically, emotionally, socially, financially, and spiritually devastating. Early on, I would meet people and talk to them and hear their stories and think to myself, I don’t know how you do it. I don’t know how you live with this disorder. The remarkable people I have been privileged to meet over the course of my time with the DMRF taught me how. It’s a life lesson I have taken to heart. How do you do it? You just do. It’s that simple. It’s that hard. And those who are diagnosed with dystonia, or have a loved one who is affected, do it every single day. That’s why the work of the DMRF is so important. No one should have to endure dystonia alone.

The Virtual Dog Walk brings together two things that mean a lot to me. I love my silly brown dog. She makes me smile. She makes me feel good about myself. And I feel fortunate to be a part of the DMRF. My job reminds me to take nothing for granted. It humbles me. The innate dignity of the human experience is not loud or conspicuous. It is the quiet, spectacular power that propels us from one year, one day, one minute to the next, even when we’re not sure how or if we will make it there. Many of you reading this blog have taught me this, probably without realizing it, so thank you.

Cici is collecting donations to support medical research toward a cure for dystonia and programs that support and educate patients and families. Please give what you can: www.dystonia-foundation.org/cici. Thank you for your support!