I thought I would post an update to my first post, UnconVENTional Aid: Helping Nick Dupree, Social Networking Style.
Many people asked about simply evacuating Nick. Evacuating a person with a disability, isn’t as easy as evacuating an able-bodied person not attached to ventilators, and other medical equipment. In fact, the Red Cross told me, “we can help him, just get him to an evacuation center.”
Here is an explanation from Nick, as for why this is not possible for HIS unique situation:
All federal, state and local policies insist I go to the hospital. But that is the most dangerous place for me. Hospitals’ normal assessment and care processes have been stricken with liability sclerosis: liability first, human life second. Hospital policy is they only allow hospital ventilators. Because of liability fears surrounding hospital staff operating ventilators they’ve never been trained on and the hospital does not own, the policy is non-negotiable: I’d be taken off my vent, put on a hospital vent. This almost destroyed my stoma in ‘08. I’d be toast if that happened again. So I don’t see evacuation to a hospital as an option. I wish there was a hospital I could trust to “first, do no harm,” but right now I just trust them to a) put me on a ventilator that will maim or kill me b) not have enough staff to feed or medicate me, because they have genuine emergencies on their hands. I am from Mobile, Alabama and was there until 2008; I tried to go to USA Children’s hospital when Hurricanes Georges and Opal hit the Gulf Coast and no beds or medicine were forthcoming (plus, the hospital lost *their electricity* stranding us in our wheelchairs staring at dead elevator doors for hours during Opal) which forced us to un-evacuate, go back home . Rode out Danny, Ivan, Katrina and more on batteries. I’ve been there, and some EMS guy I’ve never met yelling I need to be with TRAINED PROFESSIONALS (as my RN is standing next to me—lol) isn’t impressing me. Education on vent-dependent people is badly needed.
We are condemned as “against medical advice” for not evacuating to hospitals that were evacuated or in danger of evacuating. The story of NYU’s generator failing and all the NICU babies have to be taken off failed ventilators and bagged is horrifying, as are the stories of Bellevue, NYU Downtown evacuating. In Soviet ‘merica, hospital evacuate you. But all these horrible stories are unlikely to spark the change needed. If medical advice is to put yourself in those horror situations, I don’t mind being against it.
In addition to these the risks Nick explained with going to a hospital, there were other factors to consider as well. Like the fact that he’s on the 12th floor of a building with no power, and therefore no elevator. Of course buildings have stairs. That’s how we were bringing batteries and supplies to him. BUT the staircase was pitch black, and extremely narrow and very steep. It was hard enough for volunteers to safely carry batteries and water up 12 flights of steps. after a trip or two they were exhausted. Trying to evacuate Nick would have been an extremely difficult task and may not have been physically possible due to the staircase itself. Had we tried that option – even with EMS, Fire Dept, etc – Nick may have been seriously hurt.
It was much easier in this case (as complex as it was to coordinate) to bring batteries to provide power to Nick, then it was to bring Nick to the power.
In addition to those risks, many of the “evacuation centers” in the area were not wheelchair accessible, if we got him to one of those as the Red Cross had suggested. Portlight Strategies (a non-profit dedicated to helping people with disabilities in natural disasters) posted a few photos taken of some evacuation centers in NY on their facebook page. Here are some of the types of barriers Alejandra & Nick could have encountered by trying to evacuate:
So, after Sandi Yu and I went down to Lower Manhattan the first time, to get things set up on car batteries & an inverter and found it to be a successful plan I talked to his respiratory company (who we were finally able to get the name of) and the therapists first questions were, “You’ve got the ventilator running on a longer battery, but what about the oxygen concentrator, the suction machine, and the cough assist?
Since I’m in a wheelchair, I couldn’t get up 12 flights of stairs to go SEE what needed power the night before. I knew the vent was the #1 issue for power, but these other things are also important if we wanted to keep Nick healthy/medically stable. So I put the word out that we needed additional batteries & more inverters to plug stuff into without overloading the initial set up. We wanted deep cycle marine batteries this time (Walmart had none at 2 am when we initially went) since they would work a bit better then car batteries.
I put the word out, others started spreading it using social networking, and a friend of a friend, Leanna Graham, was able to find an inverter at Radio Shack, and bike it across NY to Lower Manhattan to get it to Nick. YEAH! Anna Jacobs was able to find us several marine batteries, and a couple 6 AMP & 10 AMP chargers at Sears and AutoZone in Brooklyn, but getting them across the city into lower Manhattan was a challenge batteries are heavy, not the type of things you can just throw on a bike, plus the gas shortage in NYC was a big problem and HOV (High Occupancy Vehicle) was being enforced. But we were able to use donated funds to get cab fare to bring additional batteries in Thursday morning.
Thursday, November 1, Alejandra (Nick’s partner) was interviewed on NPR, Talk of the Nation sharing her experiences first-hand. You can listen to it here: Sandy Especially Tough On Vulnerable Populations
Nick Dupree & Alejandra Ospina continued to need supplies brought in and USPS, FedEx and UPS didn’t seem to be an option, so Thursday afternoon, I started looking for more people in Boston willing to do another middle-of-the-night roadtrip. That’s when Gisela Voss stepped up. We barely knew each other – she was the designer for B. toys (sold at Target), and I “met” her on B. toys facebook page leaving “happy customer feedback” (which she was an admin of), then met briefly her in person last summer on Rabbit! band’s tour. We’ve had occasional contact with each other for the past year, became “Facebook friends” on Sunday afternoon, intended to get together next week, but found ourselves planning an emergency road trip together on Thursday.
Of course with NYCs HOV-restriction in place, we needed 3 people, so if we couldn’t find a human passenger, Gisela, being the creative person that she is, volunteered to bring her scarecrow decor to look like additional passengers in the back seat – hahaha! – but really, it was more ideal to have 2 drivers to rotate (my license is medically suspended), and 2 people to carry up supplies since I’m in a wheelchair and couldn’t assist with that. So, she recruited her sister, Karin Bolt. I rolled around my neighborhood, on the phone with Carrie Lucas (in Colorado) collecting supplies as she told me what Alejandra was reporting was needed (paper towels, trashbags, batteries, non-latex gloves, etc). Got all the supplies together, hopped in the car with Gisela, picked up (and officially met) her sister, and off we went.
I’ll let Gisela Voss’ tell it from her point of view:
“When in doubt, DO something.”
“When in doubt, say YES.”
With hurricane Sandy approaching we buttoned down the hatches on our Hull house and bought extra batteries for our flashlights. I never imagined where this week would take me. I got phone calls from as far away as Peru and Germany from friends and family checking on us. All OK within “my” circles. But what if I opened my vantage point a bit wider? What of the concentric circles a little further from my center? My sister’s in-laws had a tree fall thru their roof in Atlanta. All OK. My friend Lisa was cold in her house with no power. Offered our extra rooms. All OK. My friend Suwin posted photos of the destroyed Misquamicut beachfront in Westerly, RI yet those she loves OK. A bit wider…I saw photos of New York and New Jersey and was awed by the devastation. Feeling small, not knowing how to help I went on with my day. Until….until Crystal, someone I met briefly only once, posted a plea for help on her Facebook page. A man she knew online but had never met in person was running out of batteries for his life-sustaining ventilator—in lower Manhattan, up 12 flights of stairs, 5 hours away by car.
YES and DO are small words. But they achieve great things. And if in doubt, ever notice that “what the hell” is always the right decision? I could sense Luke with me, smiling that “do bigger” smile of his. He would not shy back from the long night, or the road blocks in NY, or the unknown. A friend needs help? What are you waiting for?
Who else would ride in this car with me to fulfill the HOV (High Occupancy Vehicle, an acronym I never knew before) requirement? Of course my sister Karin said SI.
With an extra 10 gallons of gas in the trunk, 4 marine batteries, medical supplies, some snacks for our ride, and Crystal’s wheelchair we drove. One last gas fuel-up in CT and we approached Manhattan. Past the toll signs HOV mandates. Driving along everything seemed kind of quiet, almost normal. Until we entered the twilight zone. Darkness in Manhattan. Unreal—an island of darkness in a sea of power. The city that never sleeps—asleep. On Broadway heading to TriBeCa the only lights were my headlights. Passing block after block after block of camouflage army vehicles lining both sides of the street, only an occasional flash of bright was visible—the diagonal reflector stripes on the armed National Guards patrolling the streets. I was ever-thankful for my car’s GPS because it was hard to even read the street signs. My atrocious sense of direction had no idea we were in Union Square until I saw my favorite NY store, ABC Carpet & Home. Still more blocks and blocks of darkness in Gotham. Did Batman ever drive his Batmobile through black New York? It was eerie and creepy, apocalyptic.
We arrived at our destination. Easy part over.
Leaving Crystal in the car (and feeling worried-bad about her being stuck there if anything at all happened), Karin and I unloaded the supplies and only then truly felt the weight of the batteries. “Oh My God, these weigh a ton!” we kind of chortled. 12 flights ahead of us. The doorman did not even offer to help, or hold the door as we juggled bags in. Then he smirked as he directed us towards the staircase. When we got there we saw why. This was a 3ft wide (ehem, THIN) very steep and completely pitch-black staircase. Thankfully Karin’s boy-scout boys lent us their headlamps because we needed both hands to carry the stuff. I could only handle the battery cradled on both of my arms. Huffing and puffing like the big bad wolf we slowly walked up. Step by step by step. Counting flights. 6th floor—halfway there!—9th floor—just a little more—lean on the wall on the left—lean on the wall on the right. Adjust weight. Step step step step step step step. Eureka—12th floor!
The very first words we heard made the whole trip worthwhile: “just in time!”, exclaimed Alejandra, “his battery is almost out of power.” Their nurse quickly connected the new battery, and Nick said a deep and genuine throaty “thank you” seemingly through his trach. He laid on a bed attached to machines, typing out his “Nick’s Crusade” writing. It was 3am and Alejandra was awake in her wheelchair waiting for us. We were huffing about WALKING up the stairs? Never before have I been so immensely aware of what my body is capable of doing. And feel so humbled at the magnitude of grace and strength others have to muster just for their day-to-day living.
With newfound vigor Karin and I bounded down the stairs ready for another trip back up.
Here’s a video we took while going through there, to give you a small taste of what its like actually driving through there:
While Karin & Gisela were carrying supplies up to Nick, Alejandra & I were messaging back and forth, as she finally had stable cellphone signal, so I could explain to her what we had brought. When Gisela came back down she told me, “Nick says ‘thank you.’” Several minutes later, Nick posted his first facebook status this week:
Yes Nick, your life IS worth saving.
We got back in the car, and went home, and an hour after getting home, I met with WBUR, (Boston’s NPR News Station)’s producer, Nate Goldman and explained the whole situation with helping Nick. It will air on Monday as part of the Kind World series. While I was interviewing, Gisela called into NPR’s On Point Surviving Sandy. (at 18:48 in the recording, she shares her experience going to help Nick).
Finally, early this morning, we got the update we had all been impatiently waiting for:
Nick’s ventilator and other medical equipment can finally be plugged into the wall! No more marine & car batteries!
Nick updated at 5:30pm with this:
Power came back at 4:30am. Normalcy slowly returning. Thank you so much for the amazing support, people have been so incredible, biking across the brooklyn bridge with batteries, huffing up 12 flights of stairs with recharged ventilator batteries every 3 hours, cannibalizing cars for their batteries, even helping out directly with my hands on care. That is the story here, human kindness on a previously unimaginable scale organizing virally online divvying up Q3 battery shifts and other tasks—such an amazing example of how the web, Google docs, Facebook, can enable spontaneous order to do good works—to keep me alive and at home, not a footnote in a tragic hospital story. The best people ever coming here, keeping me going despite TriBeCa being dark and abandoned like a scene from I Am Legend or The Stand, keeping me going despite very steep and difficult stairs, keeping me going so my life and all I want to do can continue. I’m so full of gratitude, overwhelmed by this. I didn’t know I was so popular. You were all so amazing, and I’m so grateful for the upcoming help y’all will do as we go into normalcy and beyond into new things. THANK YOU THANK YOU THANK YOU Thank you thank you thank you thank you!
But of course Nick & Alejandra having power doesn’t solve “everything.” There are other issues Nick and Alejandra have to work through the next few weeks. They are still without water. Additionally, transportation is a significant issue with getting nursing staff to him for his routine care. New York City still has a gas shortage. Public transit is not running to lower Manhattan, and ConEd expects weeks for proper power to be restored to MTA and water has to be pumped out of the tunnels. The red arrow is Nick’s subway stop. There is no service at all in this area.
To keep nursing care coming to Nick, Portlight Strategies, is continuing to fund taxi costs for Nick’s nurses as he requires 24/7 skilled nursing care at home (Independent living is a far better solution, and more cost effective then the 378 days he spent institutionalized). In addition, Portlight is providing emergency assistance for others in NYC/NJ that are disabled and needing emergency assistance (Donations to Portlight also helped fund a significant portion of the battery costs to power the ventilator and medical equipment for Nick this past week). At this point, the best way you can help Nick continue getting proper medical care the next few weeks, as well as others in similar circumstances throughout New York and New Jersey at the moment is a tax-deductible donation to Portlight.