Now let’s get into our shuttle for our 2nd tour around the #MEAction galaxies to see into the important work we do on a daily basis! Today, we are going to take a sneak peak into what a day in the life looks like for Ben HsuBorger, our U.S. Advocacy Director.

1. What does a typical day look like in your role?
I love this question because it makes me realize that “typical” is not part of my work vocabulary. Even after 8 years with #MEAction every day feels like a new opportunity to act, to learn, to connect. If there is anything typical or expected about my work I guess it would be the practice of embracing change. It certainly means I’m never bored! On any given day I could be exploring recent opportunities or obstacles with a group of ME or Long COVID advocates. Or I could be emailing a researcher or a government official. Or I could be zooming with a representative of a disability rights group, a community-based organization, a public health department or a think tank. The people or the subject may change from day to day, but it all happens from my bed which is mostly where the majority of my life is spent. I have a nice big window where I can look out on my neighborhood and see what’s happening outside. While my life might appear small to some non-disabled person looking in from the outside, I know that this work has connected me to such a wide world of people’s experience of illness and disability all around me. It makes me very grateful not only when I have the health function to be able to do cognitive work for #MEAction, but also to use my body to do ordinary things like wash dishes or fold laundry. When I have extra spoons I like to get outside in my power wheelchair. There is a city park and a lake just a block away that is special to me. When it is a hard day I can go out in nature and remember that my worth isn’t about how much I do. Cultivating disabled joy with being alive is an act of resistance and collective activism that we all participate in together.

2. What is your favorite part of your job?
#MEAction is an organization built on the belief in our collective people-power to make a difference in the world. So my favorite part of the job is when I’m able to facilitate something that makes people tangibly aware of their collective power after having so many experiences of invisibility and marginalization. In Susannah Fox’s incredible book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, she identifies four archetypes for patient leaders: the seeker, the builder, the networker and the champion. At heart I’m a builder. I love taking a big vision and asking how do we make it a reality? Or discovering someone’s on-the-ground personal insight and asking what can we do with this to make other people’s lives better.

3. What are you looking forward to next year in your role?
I have to be honest that I’ve personally experienced a sense of foreboding about the scope of uncertainty about what 2025 may bring. But I recently came across a quote from someone that said, “let light be a sweet rebellion in the shadows.” That is a mantra and a mindset I’m trying to take to heart in the coming year. My responsibility is to practice light whatever the circumstance and to revel in its refusal to give up hope. I am genuinely excited about my work in the next year, especially the pilot program we’ll be launching that is funded by the Minnesota Department of Health Long COVID Program. We’re currently designing some innovative approaches to help Minnesotan program participants with ME, Long COVID and related conditions, especially those in underserved communities, to access ongoing support for activities of daily living. I’m excited both for the tangible help this will provide to individuals in the program, but also how we can use this pilot to pull back the curtain on what it really takes to support people with ME and have robust data we can use for our advocacy nationally.