This past Saturday was the 4th Annual NMO Patient Day at the University of British Columbia. I had planned to write about all the things that were shared; clinical trial updates, pain management, NMO cognition, fatigue & quality of life and understanding antibody negative NMO but I think there was something more important that I wanted to talk about.
When I am in a big crowd, I tend to sit back and observe.
What I saw was people showing up:
The organizing committee showed up.
Clinicians showed up.
Neurology fellows showed up. (In droves!)
Research nurses showed up. (One even had two sleeping babies in tow.)
Guest speakers showed up. (One flew half way across the country to be here for us.)
Patients’ friends and family members showed up.
All these people showed up, for those of us living with this rare disease to let us know our lives matter and that we are not alone. They showed up as our allies and they are powerful, simply by merit of their caring presence.
Those of us living with NMO also showed up. We showed up firstly for ourselves, to listen and learn, but also for one another. We showed up to connect with our fellow NMO patients, to share our stories and to be in the company of others who get what it’s like to live with this life-altering disease. Some traveled great distances to make that connection because it was that important.
The biggest impact in our lives as patients comes from these simple acts of love. It’s what keeps us going on the hard days and energizes us on the good days.
This is our community, where hope lives and breathes.
Deepest thanks to the organizing committee for all your hard work. We love you!
Thank you also to Dr. Sue Diamond for making UBC NMO Patient Information Day possible through her generous funding.We love you Sue & missed you! Hope you are having a fabulous vacation!