Superdude Returns: Fall of a Hero

An elderly Superdude recalls his final battle with Devilish Dave.

Page 1

Page 2

Page 3

Page 4

Page 5

Page 6

Page 7

Page 8

Page 9

Page 10

Page 11

Page 12

Page 13

These are previews. When completed, the entire comic book will be put on Superdude.org and have text captioning for those who read with screen reader software.

Stay tuned!

Nick

Share on Facebook

But sometimes it can go awry, like .

Share on Facebook

Image of Nick sleeping in his new room, shared with permission

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 many others, but longer than he’d expected or hoped would be the case. Luckily he is now home, and working on next steps, next battles to be fought.

To all those listening, supporting, and watching along the way, he gives thanks. He’ll continue to write and fight about things that are just and unjust as he adjusts to a new standard of living.

After he catches up on some sleep.

Share on Facebook

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 professionals that have failed to coordinate the home services required for me to transition to our apartment, confining me to the institution for over a year.

Hopefully I won’t make it past 13 months of institutionalization.

Nick

Share on Facebook

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

Full transcript of the video, with links and footnotes:

This is Nick Dupree for the Nick’s Crusade Blog. I’ve now been in the institution for over 8 months now. I came here because there’s a lot more services, a lot more programs here, and a lot more flexibility and opportunities for people with disabilities. But the problem is, we’ve found that even though there are more programs here, bureaucracy makes it hard to get to them. We’ve had so many setbacks that it would take The Count to count them.

“I am The Count. Do you know why they call me the Count? Because I love to count things.” [maniacal laughter] [The Count counts]

First of all, the hospital is not familiar with discharging ventilator patients, because if you’re on a ventilator, this place is a lot like the Hotel California – you check in and you never leave…

“Mirrors on the ceiling,
The pink champagne on ice
She said ‘we are all just prisoners here, of our own device’
In the master’s chambers,
They gathered for the feast
The stab it with their steely knives,
But they just can’t kill the beast

Last thing I remember, I was
Running for the door
I had to find the passage back
To the place I was before
‘relax,’ said the night man,
We are programmed to receive.
You can checkout any time you like,
But you can never leave!”
[guitar solo]

So, because they’re not familiar with the discharge process, it’s been hard for them here at the hospital to get together the paperwork so I can get nursing and go home and have home nursing to support me at home. So what’s happened is, they do it wrong, the Dept. of Health in Albany sends it back and says, no do it again, and then they send it again, and then they say, “no, something’s missing, you need to train the caregiver and document it again, you need to send the documents from the home visit…” so we’ve experienced setback after setback, and it’s costing the government over $1000 a day, but that doesn’t seem to motivate them to expedite this. Hey, it’s not their money, it’s yours!

When people with disabilities are not as able to advocate for themselves or be persistent, they end up stuck for years and years and years unnecessarily institutionalized and watching the world and the people around them enjoying life while they’re stuck in an nursing home. So we’ve had setback after setback, and this week, after we finally got all the paperwork figured out, the nursing agency flaked out on us, so now we have to get another nursing agency. And it’s setback after setback, enough setbacks that The Count would love to count them.

[maniacal laughter] [The Count counts] [maniacal laughter]

Share on Facebook

In this scene in The Princess Bride, the legendary phrase is uttered "My name is Inigo Montoya. You killed my father. Prepare to die."

“…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, mom signed him up to the company insurance plan.

Then when Jamie got sick, very sick, the company (Connecticut General / CIGNA) refused to pay, saying he was not signed up with them. When pressed for why Jamie was listed in their computer, they suggested mom must have illegally trespassed and entered him in there—absurd–and they had no evidence at all.

They wanted to unplug hospital care for baby Jamie.

So we took them to court to enforce the contract (under ERISA, whether someone is enrolled or not is one of the few things the government allows you to sue their insurance buddies over; you can’t sue over a denied claim). Essentially, Connecticut General / CIGNA signed a contract, then wanted to weasel out when they realized  it may cause them losses. Money mattered more to them than a beautiful baby.  This was in the mid-1980s, at the height of Reaganism and Gordon Gecko-style greed.

We won.  As you can see from the above photograph, Jamie is still alive, despite the company’s years of fighting to end his medical care.

The “Jackpot justice” meme is greatly exaggerated.   We came out with a net monetary loss, as my family got buried in legal fees for years.

This lengthy battle was really traumatic for my family.  As a result, from a young age, I’ve distrusted corporations big-time.  They will always put profits ahead of human lives (they have a responsibility to their shareholders to do so) whether it’s dumping pollution, letting unclean peanut plants fester in order to save money, or denying a liver transplant and killing a girl to save money.  The bottom line is the bottom line.

Several months ago, I overheard two doctors here at the hospital talking about a patient who recently had valve replacement surgery, and against the doctors’ strenuous objections, his HMO put him (a new cardiac rehab patient!)  in the C building (nursing home) where they don’t even have oxygen, because it was the cheapest available option.  Of course, his death would be the ultimate cost-saver.

A few years back, my mom’s spine worsened to the point that she required surgery and can no longer sit in chairs for long or walk for extended periods.   Of course, the disability insurance she had paid into for decades denied she was disabled, and cut her off.  You pay into insurance, but the companies all have a legal responsibility to their shareholders to limit outlays (i.e. shaft you) and maximize return on investment.  Mom eventually got a lawyer and challenged the decision, but after legal costs, she got much less than if the company had simply honored its original agreement.

I cringe as during the current health care debate, so many politicians get up and defend this awful, immoral system as their sacred cow.  I see nothing worth saving.

Nick

Share on Facebook

Me: no, I gave it to Alejandra.

psychedelic dolphin

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

Share on Facebook

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 add another layer of complexity and bureaucracy, and makes things take longer…

And it’s very frustrating to be stuck in a hospital when the only reason is, you just need services in the community. That’s why it’s so important that we pass the Community Choice Act as soon as possible.

I hope that soon I’ll get out in the community, I’ll get into my apartment with my partner, and that we can continue to advocate for the CCA, and for housing. There are so many people here that don’t need to be here, that are only here because they don’t have housing.

My voice is a little rough with a new trach that I got in August, here in this hospital, but I hope that soon, my normal voice, (which is higher pitched, and a little Southern) will be back.

Keep reading the blog for more updates.

Thank you, and I love you all.

Nick’s Crusade

This video is also on YouTube: youtube.com/watch?v=p2SUnllCSEk

Share on Facebook

“That’s not my job.” For me, these are four of the most hated words in the English language.  But hospitals, whether here in New York City or back in Alabama, seem to encourage them with their strict, stifling policies.

In the home, I had one nurse at a time, and she’d do everything I needed.  Simple.  I got used to that. Here, even charge nurse RNs aren’t allowed to change the humidifier water bag, even though it’s essentially identical to the IV bags they could hang in their sleep, because anything involving ventilation is the purview of Respiratory.  And since there are only two respiratory therapists for the North Campus, your lungs may dry out and form tumbleweeds before they get to it.  It’s all fun and games until a tumbleweed blocks someone’s airway.

Nurses don’t (usually) wash patients.  You’re dirty?  “You’ll have to wait until the aides are free.”  “Your ass will be washed in the order it was received. “

I’m allowed to eat lunch in my room, but anyone who needs assistance to eat (me) can’t eat in the cafeteria; it’s banned.  Because “what if something happens?”

You need a doctor’s order just to drink gingerale.

The aides can’t mouth suction (the simplest form of suctioning).  They’ll go try to get a nurse while you choke.

The staff can trim your fingernails, but not your toenails.  Only the official hospital podiatrist can do that.

They had allowed “med-surg technicians” (MSTs) to suction patients, change dressings and do tube feedings in addition to aide tasks. This worked well, with no problems, for over a decade.  But since January, the government has declared only nurses are allowed to do those things, which has meant less care for patients (hello, there’s a nursing shortage) and deeply exacerbated the madness over the division of labor, leading us straight to reductio ad absurdum.  The outcome (two grown women standing over me as I struggle, saying they can’t mouth suction and will have to get a nurse) is absurd, therefore the policy causing the outcome must be fundamentally absurd.  My girlfriend (who uses a powerchair) can do it for them, however, while they stand helplessly, paralyzed by their own rules and regulations (and once again, we’ve answered the “who’s more disabled?” question from my last post).  This is why I say I’ve not yet moved to New York City, I’ve moved to an alternate dimension that’s loosely connected to New York City on the outside.

Art by plognark.com

The motive for all this, ultimately, is LIABILITY.  They’re practicing “defensive medicine.”  If something happens, they can say, “respiratory tasks are only done by a certified respiratory therapist” or “only trained nurses are allowed to do X, Y and Z.”  But to accomplish this, they’ve created a tangled division of labor that stresses patients (“wait for a nurse” in an emergency probably creates more liability, not less).  There are so many ways they could make it better for patients, like letting nurses do routine respiratory things, freeing up the RTs for when they are really needed.   And for heaven’s sake, let the MSTs do what they have successfully done for years, because there really aren’t enough nurses to do it alone.

It’s definitely discouraging how far immorality can go in the name of  “policy” and “just following orders.”  The staff here are in an alternate dimension where it actually makes sense to let a patient suffer for “the letter of the law.”  Things that make no sense are blindly accepted.  Lewis Carroll-esque absurdity is unquestioned normalcy here.  And you’ll never convince them that they’re in a bizarre alternate reality.  New staff come in, and just accept that because it’s policy, it obviously must be in the best interests of patient safety.

I’ve suffered a lot in the name of “patient safety,” and yeah, sometimes I get angry.  There’s got to be a better way.

Nick

Share on Facebook

Institutionalization, the most costly, elaborate and inconvenient option, is the easiest to get (in Medicaid law) because the 1965 Medicaid statute hasn’t been updated since technology advanced to allow severely disabled people to live at home.  The best, newer services (home care) are a long road to get to, whereas they’ll happily give you an express ticket to the most difficult, costliest, dinosaur services (institutionalization).  THE SYSTEM IS BACKWARDS, in an almost Lewis Carroll kind of way.  I’m wondering why “fiscal conservatives” would rather keep me in a $1000/day hospital instead of home care for half that.

So for now, I’m living in what I’ll call the “Alcatraz Institute for the Permanently Crippled,” in unit A13, until I get home care.

Ah, lucky unit 13, an alternate world within this alternate island universe.

By accident, I ended up at the North campus.  The South campus, which has a long history, was at the forefront of the advent of mechanical ventilation during the polio epidemic (picture wards filled with iron lungs) and then the invention of the ventilator.  Dr. Alba Dumbledore saw it all happen.  She’s been at the South campus, which probably has 200 vent patients now, for over 50 years.  She was on first name basis with the guys who invented the LP vents and PLVs, some of the first home ventilators, and she’s very supportive of people on vents living independently at home.  And I have never met a doctor so knowledgeable about the ins-and-outs of daily ventilator use, or as flexible to make the patient comfortable, as her.  “Sure, I had one guy with a tidal volume of 2000 so he could fill his leak and talk easily,” she said.  Unfortunately, I’ve only met her once, my first week here.

The South campus had no vacancies, and, at the last minute, they discovered the alarm system in their “overflow rehab unit” was broken.  So I was admitted to the North campus, two miles from Dr. Dumbledore and the staff that trained under her.

The North campus is more of a general medical-surgical hospital, with over half of the units alloted for their nursing home, but there is also one ventilator unit (with roughly 10 vent patients, only two of which are non-comatose and talking) and adjacent to that, the rehab unit (A13) where I live in the closest room to the nurses’ station.  When lying on my side, I can look out my door and see the staff of both A13 and A14 at the nurses’ station.

I was put in a rehab unit, not because of my medical condition, which is typically considered by them to be beyond repair, but because of my goals (get as much rehabilitation as possible, and then transition to the community). All the other ventilator patients in the North campus are cared for by the Department of Medicine, not the Department of Rehabilitation.

But they’ve not done much rehabilitation with me here.  Coming in, I was quietly hoping they’d be able to improve my condition (at least slightly) with all the state-of-the-art ventilators, lasers and nano-tech they obviously must have in the wealthiest city in America, but … not so much.  I’ve not seen any nano-tech or lasers, but I have become acquainted with the next generation of ventilators.  The respiratory therapists don’t have to hunker down over clipboards and write down all the vent settings anymore, they just wave their Palm Pilot-looking handheld computers near the vent’s on-board infrared sensor, and the vent sends all the settings information to them.  In-line PEEP valves are now obsolete, as the vent’s computer now does that automatically.  But in the case of the portable vent (the LTV) that they have on my wheelchair, newer is not always better.  The turbine motor on the damn thing screams like a banshee trying to deliver the high volume (900+) I need, and the nurses actually mistake that high-pitched squeal for an alarm.

Why are they not aggressive with the rehab of Nick?  Because A13’s attending physician isn’t that familiar with what can be done for vent patients, and is naturally tentative and cautious.  “I wouldn’t want to hurt Nick.”  When problems have come up she’s learned a lot from the advice of other doctors (and me) and now has built up some Nick-expertise.  Also, she’s sort of adopted me, and her over-protective nature has probably saved me from being reflexively herded into the nursing home, so I wouldn’t want to ship out to another hospital, and very possibly land with a doctor who genuinely doesn’t care.

In truth, this is probably the best of the city-run hospitals.  The worst are like this.   Here, a patient would almost never get abused or neglected; the charge nurses or a doctor would eat the culprits for breakfast.  And, interestingly, the three shifts’ mild antagonism and urge to discredit each other for self-aggrandizement (“we’re the only ones that do anything!”) sort of acts like America’s three branches of government should, checks and balances against each other.   They can’t screw up too badly, or the other shifts will make hay of it.  “I have to bathe you now, or Tour Two will talk again.”

“It’s Not You, It’s Me”

Admittedly, I like most of the staff and have become a staff favorite.  Once, they brought me up to a nurse’s free luncheon and fed me goodies, despite a quizzical nursing director (“remember to take him back to the unit.”)  I am one of the more polite patients here and that goes a long way (a surprising amount of patients are bitter, and take out their frustrations over their newfound disabilities on the staff).  Also, I have to respect how hard most of the staff here work; on their feet for the entire shift (minus a one-hour break) juggling around 18 high-need patients.

Looking down the unit from my room

The problem is that the institutional structure of the environment, the arbitrary and very strict policies they’re forced to follow, don’t jive with my free-spirited personality (to put it mildly).  It’s not you, it’s me.

What I hate the most is when they force my partner out of the hospital if she lingers after Professor Umbridge announces sweetly, “VISITING HOURS ARE NOW OOOOVER!!” over the Soviet loudspeaker that no one can ever turn off (it reminds me too much of this link I added to the Spring Hill College Wikipedia page).  And they use their security guards to enforce visiting hours if necessary.  More than once she’s either been escorted out by security, or just dodged the guards.  Why is a small girl in a powerchair such a threat?  It seems so unnecessary and inhumane to force us apart when we need to be around each other.

Forced separation from my other half is the part I hate most about this place, along with their strict safety policies.  Like whenever they have to re-insert my g-tube, they force me to undergo a painful stomach x-ray (or they won’t clear the nurses to continue tube feedings) just to protect against a one in a million chance freak tube accident that there’s no medical evidence to suggest will occur.  I’ve lost count of the unnecessary stuff I’ve undergone because “we can’t override policy.”  There are myriad examples of “practicing defensive medicine” (CYA) in every hospital nowadays, this one is not unique.

Home care, with one-on-one staff, is simply better than institutional care, where staff may not be available to even help you sip a drink at night, and you have to wait for them to finish with other patients, whose needs may be more critical than yours.  “YOUR ASS WILL BE WASHED IN THE ORDER IT WAS RECEIVED.”

More importantly, it’s ME.  I’m just not suited to institutional living; I want to cross uncrossed boundaries and experience new things.  On one of my birthdays (my 20th?) we went to a Mobile Mysticks hockey game.  After the game concluded, I drove my chair out onto the ice (where other spectators were) without permission, speeding away from Mom, nurses, who all yelled for me to stop.  The chair had never been on ice before (though the knobby tires I had were well suited for it) and I just wanted to experience something different, be different, not be like anyone else    Once my family saw it was safe out there, my brother drove out too.

A nice cage is still a cage.
People will often yell “STOP!” before you demonstrate the ice is safe.  In my life, I hope to show many people.

Nick

Share on Facebook

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, my brother and several others from having life-supporting services terminated.  After I “won,” I spoke at conferences throughout the country about advocacy (like the keynote at the Chicago TASH conference, and, in one of my proudest moments, delivered a speech on civil rights in Martin Luther King’s old church).

Everyone thought “this is a talented kid that’s really going somewhere.”  But I didn’t have enough help to go far.
The situation wasn’t a good one, and with the support of my partner, and an internet fundraiser coordinated by the Ophoenix Public Benefit Corp. in San Carlos, CA, I was able to fly out of Alabama on August 28, 2008, and am now living at a city rehab hospital in New York City until I can get home care in place.

I’m rising from the ashes, yet again.  I’m starting over in New York.  This blog will chronicle my various adventures and insights.

Welcome!

Nick’s Crusade has moved to nickscrusade.org!

If you like my blog and would like to see every new post, a great web tool for following blogs is http://www.feedmyinbox.com/ You simply insert the URL of the blog ( in this case, http://www.nickscrusade.org/ ) and it automatically emails you the new blog posts.

Thank you!

My first lengthy post is Lucky Unit 13 (Long Essay on Institutional Living).  Check it out.

Nick

Share on Facebook

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 the ambulance.

What triggered all this? My airway became totally occluded by mucous. Suctioning didn’t fix it. The vent was unable to get air to me. At home, we know to BAG BAG BAG if the vent’s normal operations are being blocked. I TYPED AMBU. The nurse said “ambu?”
then, DIDN’T AMBU!

Shortly after that, everything went black. Then I felt oddly disconnected from corporealNick; not like sleep–this was a near death experience. Then a split second later, I open my eyes, and the RT with the big Goliath beard is bagging me. As soon as someone AMBUed and oxygen started reaching my brain again, I woke up. It felt like a split second later, but the clock was indicating 10+ min later!

It was around 4:15am. Mohammad is bagging me, Tony the RT is also there, the on-call doctor is there, the nurse is there and also several people I’ve never met are there. I realize a code blue had been called (your patient is blue? CODE BLUE!!) though they canceled it once they realized my pulse had never stopped and I was pretty easy to revive (just bag me, dammit!)

Tony dumps a bullet of albuterol solution direct to my trach. The young on-call doctor is calling an ambulance and calling the number on the “next of kin” form (my mom) and telling her it could be a pulmonary embolism or heart attack or stroke. He didn’t think someone could be that blue, and that unconscious for so long, from just a mucous plug, and wanted people in acute care to rule out serious problems, so off I went to the ER at Bellevue Hospital in Manhattan. The ambulance left Roosevelt Island and all types of tall buildings, complete and incomplete, blurred past.

Going to Bellevue ER was rather pointless. The ER doctor said “he’s not hypoxic,” which was true, and after that they pretty much ignored me (to focus on patients who are actual in crisis). . Bellevue is better than USA hospital in Creighton in Mobile, where gangsters with gunshot wounds bleed beside you in the waiting room or occasionally wander in and shoot their friends, but not by much. It is the same genre of place, a “last resort”-type hospital for the city’s uninsured, though it seemed a lot better funded than USA (most everywhere is). But it’s definitely not as bad as NYPD Blue depicted Bellevue on TV, putting violent people in cages, etc. (maybe that’s upstairs). Some staff were friendly, others, as my girlfriend put it, had “a false veneer of helpfulness,” and lots of others just ignored me because they were too busy dealing with the city’s drunks, criminals and psychos. The dude across from me drank a brewery and ran afoul of the law and the NYPD brought him in and brought him out.

Aside from observing interesting things like that, spending my day in the Bellevue ER was a total waste of time. My girlfriend (thank G-d she was there to help me communicate) and I sat there for eight hours while they did nothing they couldn’t have done here at Coler (an EKG and an x-ray). They can do this here, and did!

As I returned to Coler via ambulance, I got a great view of the Empire State Building from the back window, right before we turned into a tunnel. That was cool.

I was so glad to get back to my room and the nurses who are familiar with what I need, and very happy to be alive after all that.

But later that night, I did break down psychologically some. It was so scary, so close to death, so close to losing everything I want so much. It was too much.

But I am okay now, physically and mentally intact.

Monday, one of the Filipino RNs (insights often come from unexpected places) mentioned I almost died on The Day Of Atonement. “On that day, The Powerful One decides who goes,” she said. “You stayed. This is a good omen for the New Year.”

I hope that’s true.

This is like my hundredth second chance. I feel the pressure. I can’t waste this chance, not even for a day.

Nick

Share on Facebook

Hat tip to Mark for pointing out this video!

This is a great city, and probably the most diverse on Earth. As an avid observer of humans sent from another planet, I find this place fascinating. The song’s line “all of us are immigrants” couldn’t be more blatantly true as it is here in this hospital.
NY residents from earlier waves of immigration are evident; I see Irish people and Italians. and a lot of black Americans who left the South seeking jobs post-slavery. Moving among them are newer immigrants. I’ve met lots of Jamaicans and people from Trinidad, and some Haitians. The most competent respiratory therapist in this unit I think is Haitian. The doctor for this unit is a Russian woman. and the social worker for the unit is Russian also, the VR counselor is Russian, and the aides for the ENT and the dentist are Russians too. There was a Russian language newspaper lying around. There are people from Spanish-speaking areas and bilingualism is widespread (I did fairly well in Spanish in high school and college and it’s coming back to me enough that I can usually get the gist of what’s being said en espanol). There are lots of Hindus and Pakistanis here. I’ve met two Arabic respiratory therapists; one is a big guy with a Goliath beard. One nurse I think is Korean. And LOTS are Filipino. It’s not uncommon to hear a nurse shouting something in Filipino in the distance. In this unit, the night nurses are almost always the same two Filipino women.

It’s endlessly interesting for me to meet people from different parts of the world every day. It’s also evolved how I think about immigration. I’ve heard a lot of anger back home that immigrants “won’t learn our language.” My time in New York City has already shown this complaint to be false. Everyone I’ve met who works in this hospital, despite being from all corners of the globe, has a good command of English. I’ve learned that, if necessary, any situation that requires English, will use a sort of “natural selection” to get English-speakers. The fact is, someone not fluent couldn’t last in a fast-paced, demanding hospital environment like this (in patient care at least) and those who adapt are the ones you see able to work here. This proves to me that people will gain fluency in English when they need to, language barriers naturally self-correct when necessary, and that all the fear-mongering about English being displaced and demands to ram “English as an official national language” down everyone’s throat are unjustified and look kind of dumb in light of what this hospital is actually like.

Yes, immigration can be problematic, especially when corporations use it as a weapon to shave wages to the bone, break unions, and displace locals economically (the practice in recent decades of laying off whole groups of local workers and bringing in Mexicans for below minimum wage to run entire factories has created acute resentment in the working class that may take generations to heal.) But that’s a problem of corporate scumbag behavior, not the immigrants’ fault.
Though it’s sort of a stereotype, I’ve found that many of the immigrants working here really are less complacent, more adaptive and want to work harder than the Americans I went to high school with who often simply do not care. I think immigrants should be welcomed. And we need to reexamine our anti-immigration policies, because America is facing some serious demographic challenges. In short, we are on the precipice of a major collapse as waves of “baby boomers” retire and there are only a scant few from my own “millennial generation” able (or, frankly, willing) to replace their parents’ skill sets, and we don’t seem to want to let in more immigrants to fill those shoes.

I keep thinking, if you really hate immigrants, how would you hack it in a place as diverse as New York City? How would you even decide which group to oppose on a given day? Jamaicans? Mexicans? Are the Russians the real problem today? With so many ethnic groups, you’d need something akin to a medication day planner to efficiently manage your diet of hate.

On Sunday, hate Arabs, Monday and Tuesday hate Hispanics, Wednesday hate Indians, Thursday hate Haitians, Friday hate Jews and on Saturday hate Russians?? Is that how it would work? Heh!

“All of us are immigrants”

In New York City, I’m very aware I AM an immigrant too. And not just the fact that much of my family tree came from Europe to Ellis Island. I grew up in The Port City: Mobile, Alabama, and though it’s quite diverse too, it is lightyears apart culturally, socially and technologically. Since I’ve visited NYC before, I’m not feeling “culture shock,” per se, but it is like being in a whole new country (though a much needed change). I’ve often found myself starting sentences with “in my country, we don’t…” because they do things so differently here.

But regardless of location, I’m used to feeling like an alien. My weird background and unusual way of seeing things makes me feel like an immigrant from another planet a lot of the time. And I feel this place is right up my alien alley, what with this often random, sometimes bizarre hospital environment, and with me speaking with a thick ventilator accent which only one here (my girlfriend) can consistantly understand.
Yet. I can’t remember the last time I’ve felt so much happiness and hope as I do here.

I look forward to writing more observations from New York City soon!

All my best,

Nick

Share on Facebook

Share on Facebook

• 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 I can use mouse in chair, because she is FTW. #
• 18:06 Aleja turned the TV off FOX News, thus saving future inhabitants of the Coler day room from political hackery. YAY! #
• 19:11 WABC local news has much more violence and depravity than WNBC news. WABC sounds more like Mobile, AL news. #
• 19:11 Met with head of Wheelchair Charities in Coler day room. He agreed to purchase a powerchair for me for use while a patient here! WOW! #
• 19:14 Aleja translates my difficult speech into common tongue, sorta like how Aaron relays for Moses. #

Automatically shipped by LoudTwitter

Share on Facebook

Its new title is based on this book.

And this song.

Share on Facebook

I’ve got a lot of desire and ambition and am chomping at the bit to move out, get independence, see things, feel things, and finish college while I’m still physically able to do so. I have looked at other states’ programs for years, but not many take ventilator cases and also there is the problem of how to survive during the gap before Medicaid services can kick in (a few weeks at best). That Gordion knot has seemed impossible to untie.

But thanks to my point person in NY (she also helped set up the nickscrusade.org site and friendsofnick@gmail.com email) I’ve come across a possible solution: go into a rehab center in NYC that specializes in ventilator care, one of the best in the country for vents, Coler-Goldwater Specialty Hospital & Nursing Facility. See more info here: http://www.nyc.gov/html/hhc/coler-goldwater/html/departments-medical-pulmonary.html

The plan would be to stay there in the short term and let all the NYS Medicaid and other services kick in, then work on independence, getting into college, etc.

I thought it would be good to let everyone know that this is the game plan at the moment. We’re currently trying to get what is required for admission to Coler nailed down, figure out the next steps, then do them. I hope to be in NY as soon as possible–if not in July, in August.
Lots of support will be needed in the first week and thereafter. Visitors will be important.

Anyone who has ideas or wants to help, please write friendsofnick@gmail.com.

Thanks, and I’ll keep the blog updated with the latest details on my progress.

Nick

Share on Facebook

Tumbling on a troubled sea
and drifting down
the stream of consciousness
my mind circling, overwhelming me.

Rivers never stop running
over the spiked rocks,
neon fishes and warped clocks
never stop bringing me back to you,

a soul shimmering and wise,
even covered in someone else’s dirt
can’t escape penetrating eyes.

I look up at the
black rapids swirl
broken kaleidescope halo
all around one girl.

Share on Facebook

I’m looking hard at NYC, Minneapolis, Portland, and other areas for the best opportunities I can find. I’ve built up a huge list of contacts over the years of traveling to give seminars on advocacy, and am leaning on those contacts hard now, looking for people who can pull some strings.

Now is the time! I have goals I must accomplish (life, liberty and the pursuit of happiness) and life is an hourglass glued to the table.

Can you spread http://nickscrusade.org/ to any of your contacts that could assist?

Thanks so much,

Nick

Share on Facebook

It’s understandable
to doubt
in a world of pain! darkness! disappointment!
I can only pray the scales will level out

I try
to understand,
Psychedelic angel,
take my hand!
Nothing will stop
a phoenix,
rising from the sand.

Let us try to
go the other way
I sometimes try to pass as nothing
but my dreams give me away

Psychedelic angel,
come to me!
I’ll work it out
love is not the enemy.
The sun is cresting over metallic dunes again
and I pray, one day
the scales will level out.

Share on Facebook

Take me.
Take me to the indigo
Shut off
shut off the radio
endless in my brain
show me the light
that isn’t an oncoming train

Nothing’s gained without loss
I understand the rain
drop can’t create without
losing its shape
on the grass-tips.

Strip it
all away soon
lose it
shed my cocoon
without a trace
Fall!
I have faith
and uncovered face

Change me!
Create again.

Share on Facebook

I hope I can do something better with my 26th year than my 25th!

Here’s to a new location and new opportunities in my life!

Nick

Share on Facebook

Got no feel, I got no rhythm
I just keep losing my beat
I’m ok, I’m alright
Ain’t gonna face no defeat
I JUST GOTTA GET OUT OF THIS PRISON CELL
SOMEDAY I’M GONNA BE FREE, LORD!

Share on Facebook

In October, my computer died, and I spent nearly three weeks on mom’s old PC unable to run applications heavier than Firefox. I made the best of the situation and did a lot of reading, especially about Second Life, a 3d virtual community. What especially caught my eye was this article in the Washington Post about people with disabilities using Second Life (SL):

Brown, Salvatierra and Dawley are just a few examples of an increasing number of sick, disabled and troubled people who say virtual worlds are helping them fight their diseases, live with their disabilities and sometimes even begin to recover. Researchers say they are only starting to appreciate the impact of this phenomenon.

“We’re at a major technical and social transition with this technology. It has very recently started to become a very big deal, and we haven’t by any means digested what the implications are,” said William Sims Bainbridge, a social scientist at the National Science Foundation.

In addition to helping individual patients, virtual worlds are being used for a host of other health-related purposes. Medical schools are using them to train doctors. Health departments are using them to test first responders. Researchers are using them to gain insights into how epidemics spread. Health groups are using them to educate the public and raise money.

These increasingly sophisticated online worlds enable people to create rich virtual lives through “avatars” — identities they can tailor to their desires: Old people become young. Infirm people become vibrant. Paralyzed people become agile.

Read the full article:
Real Hope in a Virtual World: Online Identities Leave Limitations Behind

As soon as I got my computer back, I jumped into SL with both feet. It can be a great thing for people who, due to disability and associated barriers, are unable to do much in real life, and people lonely and seeking interaction. It can do a lot of good. It’s head and shoulders above past alternatives. And it’s free.

This is the next frontier for disability culture, as well as a way to support others, socialize, and even a source of income (one woman makes $250,000 annually selling dresses in SL).

So far I am doing several things in SL:

1) I work with The Heron Sanctuary, a group to help disabled users arrive in and integrate into SL. I founded the Open Gates Peer Support Community, so that anyone with disabilities in SL who needs to talk has someone to talk to in group chat, 24/7.

2) I’m one of the members of Second Life Synagogue. Read about us here in the Jerusalem Post. We do symbolic lightings prior to Shabbas, and we have an SL yeshiva as well, where we meet to study the Torah portion on Tuesdays and study Rambam on Wednesdays.

3) I like hanging out in historical settings (like 1001 Arabian Nights, or Deadwood). With SL you can step into the past anywhere in the world.

In the future I plan to give my PowerPoint presentation I gave as a keynote speech in Chicago, Minneapolis, DC, etc., in SL.

I’m making a real effort to shake my past failures in 2008 and accomplish new stuff, learn new things.
For ‘08, I’m planning to get back to blogging, learn DJing in SL, and I have plans for a small business in SL selling camels.

Stay tuned!

Nick

Share on Facebook

HAHAH!!!!! Hi-larious.

Here’s the Simpsons avatar of me. I used www.simpsonsmovie.com/avatar to make it, then added the beard and ventilator with Paint Shop Pro.

You can also use SimpsonizeMe.com

Fun

Nick

Share on Facebook

I haven’t blogged in awhile because I didn’t know what to say. I don’t know what the narrative is anymore.

People define themselves and grasp their goals and aspirations by relating to others. We explain our past story and bounce ideas and plans off each other, and in this way we cobble together an internal narrative, an identity. Talking to other people gives us the compass we need to plot a course for our lives.

When isolated, a person loses part of their sense of self. It is like trying to make an echo with nothing to bounce sound off of.

That’s where I am right now. Lost.

Everything’s been stripped away and all that’s left is the spiritual.

I love the online world and blogging and message boards. It allows me to have a voice, to try and wrangle control of the story, to form some kind of internal narrative. Last year I posted an explanation of my past few years in an attempt to get a handle on the internal narrative.

Now I don’t even know what the narrative is anymore.

Medicaid was making noises about terminating us, but when they visited May 17th, said they have no plans to end our services. A relief.

But what now? I have no idea.

I am trapped. I want out. I know what I want. But I don’t know how to get there.

One of the most frustrating aspects is that my destiny is not totally in my hands. I am so dependent.

Ugh. I am sick of hearing my own whining. So I just shut up, curled in the fetal position, and didn’t blog for a long time. If you can’t say something nice, don’t say anything, eh?

I’m back now.

Nick

Share on Facebook

Alabama Medicaid called Friday, they want to terminate our waiver…. Basically, we’re too expensive to keep alive.

They will discuss this more in May. They say the program is just too expensive.

Scary.

But then again they claimed the same thing in 2003 right before I “won.”

Who knows what will happen…. We begged them to just ship us to another state, but nothing is certain now except that my level of frustration and outright fear is at an all-time high (and that’s saying a lot).

My family is in danger.

Alabama doesn’t want us.

I’m so sick of fighting.

I’m so tired.

Nick

Share on Facebook

We recently passed the third anniversary of the death of my friend Chris. It’s so awful, I don’t write or speak about this much (too painful) but I thought you should all know about it.

My family had known Chris since we moved to Mobile, Alabama in 1983, I was 1 years old then. Chris had Duchenne’s Muscular Dystrophy. His mom and my mom started a sort of two-person parent support group.

He went on a trach and ventilator not long after I did, in the mid-90s.

Because neither of us had much support to get out of the house I rarely saw Chris in person, though he lived 10 minutes from my house. I last saw him at his 24th birthday party, but we kept in touch by chatting on-line. We were friends.

Chris was a cool person. He was a very different personality than me. He was hardcore, and rarely complained. Whining was beneath him. He thought displays of emotion uncool whereas I tend to be seething with emotion, often silently, but emotional. He would probably hate this blog. He thought me talking politics was sorta “gay” and pretty pointless, though he had a great kind of warrior respect for me and my tenacity, especially after my two-year “Crusade” actually succeeded.

He loved heavy metal music like Metallica and Kittie. He had a dyed mohawk or shaved head, and often wore that flaming skull and rebel flag T-Shirt. He loved sci-fi, X-men, comic books, writing action stories, his friends, and women (this ended up being the primary topic of our conversations).

What he valued most was guts, balls. Bravery. Action. One of his short stories was about a Viking warrior. Maybe Chris was a gilgul (reincarnation) of a Viking warrior or something. While he often found my political rants annoying, and thought politics pointless, he admired my unrelenting gall.

Chris was in love with a girl and finally told her everything in 2003. He bore his heart out, then waited. He said if she didn’t answer by the Ides of March he knew to give up. Beware the Ides of March! March 15 came and went, and no answer.

Chris used to have at the end of his emails, as his signature, “If you have a dream, or something you need to say, or to let out, don’t hesitate, don’t let go of that opportunity, it may never come again.”

March 9, 2004, the next year, Chris died.

Alabama Medicaid provides nursing care through the EPSDT program, they are mandated to. But after age 21, people are no longer eligible for EPSDT, and Alabama does not provide any sort of full-time care through other programs (except for the handful like me on the new AT waiver we got from my “victory” in 2003 or people with MR allowed on the MR/DD waiver).

Around 1999 I think, Chris turned 21, and of course lost his care.

Chris’ parents were trying to do his care 24/7, alone. They had not fully slept in 4 years or something. Chris wrote up something about his problem and I put it on my Crusade web site. In his message, he wrote of his fear that unless he could get some sort of care back, his ventilator tube could come disconnected and no one would be there or wake up to hear his ventilator alarms in time to save his life. He said this on local TV as well. As you know I had been warning about the dangers of providing no support to people after age 21, for years.

March 4, 2004 Chris’ ventilator tube came off, and no one woke up. Once found, Chris was taken to the hospital, where he was in a coma and brain dead from the prolonged lack of air to the brain. March 9, Chris died.

He was 26.

I went to the wake, and the funeral.

This was a devastating, life-changing thing for me. The impact on his parents can’t even be put into words.

His death was preventable, and the fault of the awful situation of near-total lack of services in Alabama. Parents can’t maintain care alone indefinitely. We know that when care is not provided to people who need care to survive, they don’t survive. We know that if Chris had full-time care, if Chris did not live in Alabama, and lived in a state that provided such care, this wouldn’t have happened.

Chris’ mom told me she wants to make sure this never happens to another family again. As the leader of the anti-21 cut-off campaign, I went on local news and explained that the system is still broken. This is the last report of it still online: “Alabama Medicaid Policy Blamed For Friend’s Death” By Dave Reynolds, Inclusion Daily Express, March 29, 2004.

Lots of people think politics don’t really matter, but if you’re one of the poor and disabled people who have to rely on the government, politics can kill you.

I lobbied hard for Chris, he himself wrote many letters, and for years his case was refused because Alabama Medicaid says they can’t afford to expand.

This country has been slashing programs for the poor and disabled for over a decade like it has no consequences, or worse, as I detailed in Fighting Cuts, Demanding Universal Health Care, they think that cutting off services benefits them–that it is a great thing. It isn’t. It doesn’t benefit you. It is evil. I believe this is the fifth 21 cut-off death in the city of Mobile alone, that I know of. The disability community in the South feels under siege. Know that there’s still a developing, worsening situation with home care policy in America as more and more people turn 21 and find the supports they need just aren’t there.

Politics is not a game. The disregard (or outright cruelty) of politicians can kill.

What do I do with all the rage, despair and cynicism I still feel inside? I feel messed up. I feel grief, mourning, disappointment, frustration, rage, motivation, fatigue, passion, love, fear, and ponderings about media, society, people, girls, disability, life, my life, my future, all under layers of slimy cynical build-up…and right now I am paralyzed. I just feel broken. I just feel messed up.

Nick

Share on Facebook