“I write not because I have the strength to write, but because I do not have the strength to remain silent.” — Rav Avraham Yitzchok Kook zt’l
This blog is a safe space, where I highlight unreported and under-reported issues effecting people with disabilities and other underrepresented groups and the U.S. as a whole.
I’m Nick, a 31 year-old disability rights and Medicaid reform activist, who has been advocating for ending the institutional bias and other long-term care reforms for years. I fight especially hard for awareness and action on issues that effect those of us who, like me, have complex care needs and are vent-dependent. We are a vulnerable population that spans multiple diagnoses and every age group, and, in order to stay in our homes and communities, we need change in long-term care.
I was born with mitochondrial disease, as was my younger brother Jamie. I’ve been on various forms of life support since age 9 when an infected surgical site—the destructive Luque rods surgery occurring on Friday, September 13th, 1991—triggered a horrifying “mito collapse” that killed what little muscle tone I’d had previously. I got my first feeding tube in October 1991, my first vent in February 1992 (full-time BiPap) then was trached and vented in November 1994.
For more about me, see my Wikipedia user profile.
I grew up in and around the Spring Hill College campus in Mobile, Alabama, where I studied from Fall 1998 when I entered at age 16, until 2005. The Jesuits’ social justice teachings heavily influenced me.
I made a major impact with my two-year campaign to change Medicaid in Alabama, dubbed “Nick’s Crusade.”
My primary skill-set is in writing. I come out of the Spring Hill College writing program, where I gravitated toward
creative nonfiction and poetry. Though problems maintaining nursing care in the wake of my Medicaid battle prevented me from completing my degree at the Jesuit college, I’ve never stopped writing,
Since August 28, 2008, I’ve lived in New York City with my partner Alejandra – first, in Coler-Goldwater state rehab hospital (for 378 days), and later, at home in our community.
I have continued creating both fiction (online comics I paint with the trackball mouse, such as Theodore Roosevelt and the Rough Riders vs Zombies, and Bunnies in Space) and nonfiction (essays on history, politics, and health care). One of my essays, on the impact of cuts in the federal budget and universal health care as a human right, was published as part of Greenhaven Press’ reference volume Health Care: Opposing Viewpoints in 2008.
Goals for 2013 include completing my memoir/exposé about my fight against Alabama Medicaid Agency and the plight of the American ventboy…
…and completing my fiction project, turning Theodore Roosevelt and the Rough Riders vs Zombies into a (text) novella.
Begin with the blog’s introduction: Rising From The Ashes