A Conversation with Sarah Funes: Brain Tumor Action Week

Posted on May 8, 2017 by kerri
It’s Brain Tumour Action Week, and I had the pleasure to interview human rights advocate Sarah Funes from the San Francisco Bay Area about her experiences of not simply having been treated for a brain tumor, but of her life following that experience! 
Hi Sarah! Thanks for taking the time to chat with me today. Tell us a bit about yourself!
Sarah, from her Facebook page

I’m a 25-year-old brain tumor survivor who transferred to UC Berkeley 3 years ago. Since transferring to UC Berkeley I’ve worked as the Vote Everywhere Ambassador through the Andrew Goodman Foundation, interned in both Washington, D.C., and California for retired Senator Barbara Boxer, interned in the Office of Legislative Affairs, and worked various work-study jobs through the campus.  I have a service dog named Barack and am a Bay Area Native from South San Francisco. I love Mexican food and sorely missed it when I was back east.

What has your journey as a patient looked like with regard to your brain tumor?
My patient journey looked very different than the journey of a young person today. To put it in perspective I was treated with Keppra that is now standard at a time when it was just being released. I didn’t have Twitter, Facebook, or Youtube, or wifi for that matter. I had Myspace and Yahoo Groups. I didn’t know anyone my age that was diagnosed around the same time and the same age. There were no support groups I had access to from where I lived that dealt with Adolescent or Young Adult cancer.
What do you wish more people knew or understood about brain tumors, or what you have experienced?
I wish people saw us as people. That we aren’t in need of pity but rather support and investment. We’ve had a raw deal but defining us by what happened to us is unjust. After treatment and/or resection we need accommodations whether that be for work or school. We aren’t beggars we’re in need of accommodations that we are entitled to under the Americans with Disabilities Act. The proper question after a conversation and [when someone has] gotten to know us is “what happened?” not “What’s wrong with you?”
Has connecting online been a part of your patient journey? Why or why not–and if so, what has that looked like?
Yes sort of I was fortunate to connect with some older teens when I was in treatment through a Yahoo group but over all my communications with current patients are through #btsm monthly chats and Facebook or Instagram. It’s really nice to be helpful to people currently in treatment or just finishing treatment to be there as a guide in finding resources to pay for college or accommodations for jobs.
Do you wear a medical ID bracelet? Why or why not?
Yes I do. I even have one in Spanish when I go to El Salvador. I take no chances with my health. I haven’t had a seizure in a decade but if I were to have one I want my health history to be available. In addition if I ever am arrested for civil disobedience in my fight for equity of marginalized communities there won’t be any way the police could claim they weren’t aware. As I like to tweet, stay #sexyandsafe.
Thank you so much, Sarah! You can connect with Sarah on Twitter at @SarahFunes, or by liking her Facebook page.
As well, I’d like to thank Charlie Blotner for connecting me with Sarah – to learn more about brain tumors, check out #btsm – brain tumor social media – on Twitter.

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