This 1986 Press-Register article about me, Jamie and Mom, especially Jamie, surviving the rare disease, was digitized by my Aunt Nancy in Virginia. Thank you. Mom gave me permission to post this here. It’s so old the newspaper was still called the PRESS-REGISTER! Back then the medical knowledge and approach to mitochondrial myopathies was much … Continue reading “1986 Mobile Press-Register Article: on specialness and surviving”
When I wrote Saints commentary as the “Swami of the Swamp” Special thanks to Lee ^ for unearthing this article from his archives and taking the time to scan it for me (Click to embiggen image of newspaper article) This Superdome trip, my one and only visit inside da dome, really was a peak life … Continue reading “My New Orleans Saints community experience and Superdome trip: December 2000”
Part 1 of 4 of the series: When Life and Death is “A Matter of Policy” As I mentioned recently in the quasi-mission statement of the blog, I create bloggings to ask the right questions, to illuminate the unseen issues facing us ignored vulnerable groups, or that’s the goal. Within that is the idea that … Continue reading “Medical Bureaucracy: Switching Your Ventilator “Because Policy” (Part 1/4)”
Dispatches from Ventboy Alcatraz From inside the walls of the institution, Coler-Goldwater, I continued to create content, to blog, and we added video blogging from the inside. I wrote the following blog posts about the institution, where I lived from August 28, 2008 to September 10, 2009: Hey everyone I almost died again – October 15th, … Continue reading “The Coler Chronicles: Collected Bloggings of the Institution Days”
I’m a bit late on this one… the holiday season’s crowding in on us, and soon people will consider it winter instead of fall, but I want to cover this anyway since few know there are autumn seasonal fruits. The source for this, primarily, is the Greatist.com list 19 Seasonal Fruits and Veggies to Eat … Continue reading “Recommended Seasonal Fruits for Autumn”
Obviously I lean heavily on written communication, both in texting basic needs and writing long-form when ideas need room. Personally, I think the novel is best used when your/my/the author’s ideas about something large (our past, our future, technology, childhood, humanity, the soul, big stuff) are deep enough that you need an entire novel to … Continue reading “Some Thoughts On The Power of Speech”
It’s a new world, and those of us who have rare disorders are able to connect with and advise each other like never before. For me and my brother Jamie, the rare disorder is mitochondrial myopathy, and back in 1985 we were told we were among JUST 24 cases identified worldwide of what was then … Continue reading “Journeys with mitochondrial disease”
I’ve been thinking about my friend Chris a lot this week, especially in the days preceding and following March 4th, when the tragedy that took him happened. When I was little, Chris was the bigger kid, both in age (four years older) and heft (kids with Duchenne Muscular Dystrophy—DMD, which I don’t have—tend to be … Continue reading “Chris Week: Ninth Anniversary—RIP Chris”
How I’ve Changed Since Moving to New York City or… Living in Zomerica I started out and made my name as an activist in Alabama, where the left is deeply influenced by Martin Luther King Jr. I always spoke in the language of Biblical and , sometimes overtly, very much in the tradition of the … Continue reading “Living in Zomerica”
I had originally intended to write this for Blogging Against Disablism Day, BADD, 2012. Obviously I’m WAY late for that, over two days after the deadline. But since I’ve participated in BADD in the past, I said hey, why not?! Maybe BADD readers will still find this post, and may, along with other audiences, find … Continue reading “The Path of the Disabled Man”
You may or may not know about the medical model and the social model of disability. I wanted to talk about the social model of services and supports for people with disabilities, and barriers to implementing it. When you think about disability internationally, most disabled people in countries around the world are taken care of … Continue reading “The Social vs. Medical Model of Disability, Communities Will Be Forced To Choose”
The University of Alabama Alabama Disabilities Advocacy Program School of Law Clinical Program 2003 Alabama Disability Summit On August 14, 2003 the Alabama Disabilities Advocacy Program hosted its third annual Disability Summit. Disability rights activists, advocates, consumers, family members, and others gathered at the historic Dexter Avenue King Memorial Baptist Church for a morning session … Continue reading “For MLK Day, this newsletter clipping about a speech I gave at Rev. King’s old church in Montgomery”
Today, Thursday the 13th of January, 2011, I’ve begun posting Theodore Roosevelt and the Rough Riders vs. Zombies with the first, 5-page Introductory chapter up. At least one new page will be uploaded every Tues and Thurs. Summary: It’s 1898, and a Zombie Apocalypse has hit the tri-state area hard. Theodore Roosevelt is New York’s only … Continue reading “Exciting Stuff Happening Over At Superdude.org”
August 28, 2008 The end of the beginning of the journey (Nick arrives at Coler-Goldwater Hospital in NYC from Mobile, via Atlanta and LGA).
I’m not dead, and neither is Superdude. I’m bringing Superdude, my childhood comic book creation, back, and depicting anew his adventures, with the latest computer technology. It’s a sight to see, and you can get a sneak peek here: Superdude Returns: Fall of a Hero An elderly Superdude recalls his final battle with Devilish Dave. … Continue reading “I’m Bringing Super Back”
Labeling things can be useful, like and . But sometimes it can go awry, like .
On September 10, 2009, Nick Dupree was able to leave the rehab hospital in New York City where he had been living for approx. 378 days after moving from Mobile Alabama (well after his previous crusade), while waiting to get services and supports established to live in the community. It’s a wait that’s shorter than … Continue reading “Please Stand By”
How many months have I been institutionalized? The number of the day August 28 marked a full year I’ve been in a NYC rehab hospital. It was a bittersweet anniversary: sweet because it’s one year since I succeeded in changing my life and moving close to my girl, and bitter because of the myriad of … Continue reading “A Year In An Institution”
The Ninth “Nick’s Crusade” Video Blog Ninth “Nick’s Crusade” Video Blog: Too Many Setbacks To Count (June 15, 2009) from Alejandra Ospina on Vimeo. Too Many Setbacks To Count Videographer: Alejandra Ospina Writer/Director/Editor: Nick Dupree Music by The Eagles Footage of The Count from this YouTube video Finished video made with Corel VideoStudio by Nick Dupree … Continue reading “Ninth “Nick’s Crusade” Video Blog: Too Many Setbacks To Count”
So this is basically how I feel about the insurance industry. “…You tried to kill my brother. Prepare to die.” Years ago, an insurance company did indeed try to kill my younger brother Jamie. The story is basically this: my brother was born with the same disease I have. As soon as he was born, … Continue reading “They Tried To Kill My Brother. Insurance Companies Will Always Put Profits Before Human Life”
Nurse: did Alejandra give you this? Me: no, I gave it to Alejandra. Nurse: *props dolphin on my chest* this is Alejandra watching over you. And that’s how I stayed safe Saturday night and slept. That’s my dolphinsafe. Nick
Nick’s Crusade Blog – April 21, 2009 from Alejandra Ospina on Vimeo Transcription (as captioned): Hello, and welcome to Nick’s Crusade blog. This is a video blog of day 236 here in the hospital. I’m here in the hospital because I’m waiting for community services, and the [Medicaid] waiver that I’m on just seems to … Continue reading “First “Nick’s Crusade” Video Blog: Day 236 in Hospital”
For people with severe disabilities like me, you’re paradoxically only as independent (defined here as self-directing, in control of your own daily existence) as the people you’re depending on enable you to be. As I wrote in my last post, if your caregivers are responsive and willing and able to support all your needs, your … Continue reading ““That’s Not My Job” (Angry Rant)”
Because Medicaid makes getting on home care waivers ridiculously complex and difficult, whereas institutionalization is easily funded, I ended up here, at a city rehab hospital while I wait for home care to be set up for me in Manhattan. This is my waiting period. Institutionalization, the most costly, elaborate and inconvenient option, is the … Continue reading “Lucky Unit 13 (Long Essay on Institutional Living)”
I used to be a big activist. I made a national splash fighting Alabama Medicaid’s arbitrary cut off at age 21 (NPR story here) in a campaign dubbed “Nick’s Crusade.” It was years of legislative work, followed by half a year of lawsuit work, and a sustained internet and media campaign throughout. I saved myself, … Continue reading “Rising From The Ashes”
Wow. Last Thursday was my first CODE BLUE since February 1992. Human error + clogged lung = over 10 min hypoxic and unconscious. And it led to a not-so-happy jaunt to Bellevue ER which was ultimately pointless aside from the observations gleaned, and my first sight of the Empire State Building from the back of … Continue reading “Hey Everyone, I Almost Died … Again”
Thanks to Aaron, who visited Sunday, we have this great photo of the view outside where I’m living at Coler hospital:
Here’s what I posted to Twitter today: 16:52 The doctors (rehab, pulmonologist, ENT) finally decided on a new trach. Thank G-d, this old trach simply won’t work anymore. # 17:07 The new trach is being rush ordered and should arrive Wednesday. # 17:08 In Coler day room, in makeshift manual wheelchair. Aleja rigged pillows so … Continue reading “I Now Live at Coler hospital. My first twitter feed from NYC. Sept. 15”
My blog is changing and advancing as I evolve and grow as a person. Its new title is based on this book. And this song. 🙂
As I mentioned in this past post, I’m working hard on changing my life and relocating to a new situation. I’ve begun searching harder and harder and we’ve put up a web page to explain my situation and ask for help: http://nickscrusade.org I’ve got a lot of desire and ambition and am chomping at the … Continue reading “Relocating Nick: The Current Game Plan”