A friend shared this photo with me. He wanted to point out the fact that the rail was not in raised text her so it was useless do the visually impaired.
I immediately noticed something else, “Please ask for assistance”. Is this a place I can go where they will wipe my ass for me?
In New York City many of the buses are switching to a payment system where you dip your MetroCard into a machine at the bus stop and it spits out a slip. Theoretically you just keep this lip with you and you could ride the bus. It makes things go faster because people can board on any door and don't have to dwell around the driver putting money or metrocards into a machine. The thing is, 99.9something% of New Yorkers can operate that machine. But only a little sliver of paper sticks out and I don't have enough strength between my thumb and forefinger to grab it so I have to use two hands but there's not enough paper sticking out for me to get two hands around it.
But yesterday I did. I did not have to ask a stranger for help and I didn't have to dip my MetroCard two times to make the paper bigger. I hang out with a lot of people with disabilities. not all of them are regular people with disabilities many of them are active people with disabilities and many of them are activists who are people with disabilities. when you hang out with activists you also hang out with a lot of their lawyers. I happened to be sitting next to an ADA lawyer and told him about my problem using that machine. He told me that I should continue to try to use it. Always dip my card in and try to get the slip of paper out. But if I didn't want to I shouldn't have to ask a stranger for help nor should I have to lick my fingers or use my teeth. He said that if the bus gets inspected I should respectfully tell the police officer that I will be defended by an ADA lawyer and this will be a federal case if I get a ticket. twice before we had that conversation I was on a bus without the ticket and showed the inspector my Acksress o ride Metrocard and both times they got frustrated and shrugged and walked away without giving me a ticket. I might not be able to pull out that little slip of paper next time And I still might be the plaintiff in a federal ADA case . But yesterday there was just one guy who looked a little crazy on the bus because he was struggling to hold back tears of joy. It was kind of nice not to worry that I was going to be treated like a criminal for taking the crosstown 34th Street bus.
So a little bit more of a review. 5 years ago last May I went from physically fit to quadrophenia in a couple of days. I couldn't move my arms and legs. 135 days in the hospital. I came home in a wheelchair. then started using crutches a little bit of a cane and since then I finished three more marathons. But the nerves in my hands didn't really heal.
I've had five surgeries to recombobulate my hands and fingers. the first was to put a rod in my right wrist and the second was the transfer the tendon that used to move the wrist a little so I can have a little bit of control over my fingers. Now all the fingers in my right hand move together so I can't flip the bird but I can pick up a can of beer or a fork or pen or a toothbrush with my right hand now.
The third surgery fused the 4 knuckles in my fingers in my left hand so that they were more in a shape of a cup as opposed to being as functional as a paper plate on the end of my hand. We thought that was going to be the last surgery but I realized I needed to get my thumb out of the palm of my hand. We had two more. One to fuse the joint in the thumb to keep it in the open position and the second was to transfer some of the tendon from my wrist so I could literally open my thumb.
Those five surgeries are done and I’m unlikely to have any more unless science figures out some new way of recombobulate in me.
This might sound weird but the one thing I can do now that I couldn't do five years ago or five weeks ago is put deodorant on both my armpits by myself. Yeah, there might be many ways of defining yourself as a human being. but one of them for me is being able to put a little Old Spice on my armpits without asking for help.
Yeah, the cast is off and I'm back in occupational therapy. I prepared myself this time by thinking of what goals I had.
Opening pistachios
Safety pins
Pulling up my pants without having to put both my hands inside the elastic waistband and touching the Holy Grail is good. But doing it without having to lay on my side would be better
Update January 2019
I have to give a shout out to two life-saving products First, the Aqua Total Hygiene glove. It is designed for bathing but it makes it possible for me to achieve toileting. And then of course there are Shittens, the as seen on Shark Tank life-changing product that has changed my life. Yes, changed my life!
The sole purpose of my third surgery was so that I can turn my wrist and bend my fingers in the position necessary to wipe my own ass. But it's going to be the next surgery that will allow me to hold toilet paper with my thumb and the rest of the fingers. So I'd like to thank the makers of these products for allowing me to go out and travel without looking for the never to be found bidet in a public place. Thank you, for creating a product that means I don't have to rush home to use my own bathroom. Thank you, for creating a product that means I don't have to spend every not home moment worrying that I might have to rush home and use my own bathroom. Anyway, in case the above products are unavailable or I'm not around functioning bidet I can always take a shower and floss myself with these. I get them on eBay for $.99 apiece. Next week I have surgery number four. It's the start of getting an opposable thumb back on the left-hand so I won't need any of this crap to clean my crapper
Update October 2018
It's been a while since I updated this. Last November I had a titanium rod installed in my right wrist to completely stable as it and then in January I had a tendon transferred. The surgeons disconnected the tendon that used to move my wrist and attached it to my fingers. So with my right hand I can open and close my fingers but I cannot move my wrist at all. Things this allowed me to do as long;
I can easily use a fork or spoon or a pen
I can reach for things and hold them. Things like cups and telephones and peoples hands
it's easier for me to open doors
I can confidently use a credit card or a MetroCard
I have an easier time using a touchscreen phone or a remote control
But the rod in my wrist is at a 15° upward angle. It helps me do all the above things but it prohibits me from holding my hand down. There's one very important thing that I cannot do with my right hand that makes me care very little about the things I can do. Occupational therapists call it "toileting"or, "being independent in the bathroom". Let me put this into regular adult language. Since May 7, 2014 I have been unable to wipe my own ass. I've been dependent on healthcare workers and installed a bidet in my home. Traveling has been tough because I have to have these things installed at the hotels I go to or in the homes of the people I stayed at.
My left hand was in worse shape now my right hand. The wrist worked poorly in one direction only. If I hold my hand out and face my palm up I can lift my hand. But if I turn my arm over and have the palm face the ground I cannot lift my hand from the wrist. Also, the axonal nerve damage going to the fingers in the left hand was pretty bad. Atrophy kicked in and the fingers pretty much stiffened up in a very open position. So after consulting with amazing surgeons and occupational therapists we decided to put some screws in my fingers so instead of them being stuck in a useless position they are now stuck in a useful position. You can't really tell from the x-ray which was taken from above, but four of my fingers are now permanently bent at a 75° angle. My left hand is permanently cupped as opposed to flat as it was before the surgery
So yesterday the cast came off and as soon as the surgeon gave me the green light I took my new hand out for a test drive or a "dry run". It worked! It worked! I didn't cry then, but tears are running down my face as I dictate these words into my computer screen.
A couple of years ago I had a good talk with my friend Josh about my rehabilitation. I told him that all my breakthroughs in abilities were nothing without the ability to white my ass. He understood and referred to that activity is the Holy Grail of rehab
A couple years ago my son told me I was a toddler because a toddler is defined as a human who was learning to walk. He told me I was the toddler anymore when we finished the New York City Marathon together. I was very proud of finishing the marathon but I still felt like a toddler. Toddlers can't independently go to the bathroom.
So dear reader, tomorrow I will attempt to finish my 32nd marathon. My third since recovering from GBS. Tomorrow I'm going to leave my house knowing that I can use any bathroom I want.Can you imagine a good that feels? You won't have to use your imagination because I'll update this blog and let you all know how it "goes"when I reach my "#2 goal"
Update: November, 2017
I might've finished a marathon three weeks ago, but that was a leg thing. They don't work that well but I was able to make them work for 9 hours and 52 minutes. But my hands are almost FUBAR, [Almost Fucked Up Beyond Any Repair]. My elbows work fine. But my wrists and fingers not so much.
If I hold my arms out with my palms facing towards the ceiling I can lift my fingers up. But if my palms are facing down I cannot tell my hands upward. I can make a fist but there's not much strength behind holding the hand closed. Also, the slightest amount of pressure can stop me from opening my hand from the fist. That adds up to not much function. When I reach for things my hands hang limply from the wrists, and when that happens I can't close my fingers. It's been 3 1/2 years since GBS took the motor function away from my hands and my neurologist told me that at this point no amount of time or Occupational Therapy is going to bring them back.
So it's time to make what works work better. And move around the working parts to bring some function back to those fingers. Two weeks ago I underwent surgery to fuse the joint in my right wrist. Now when I reach for something my hand does not flop down, it stays straight and I'm able to close my fingers. When that heels I'm going to have the tendon used to move my hand around moved to the back of my hand so it opens up the fingers.
To the left is a picture I was able to take of my right hand before surgery. That's me trying to make a fist or trying to lift my hand, it looks the same. To the right is what they did to my hand.
It's been a little over a week and I still haven't had the stitches removed and it still in a cast. But now I don't have to put a contraption on my arm to hold a fork, a spoon or a pen.
Update: October 17, 2017
Another surprise update in that I got to regain a little part of normal life without thinking about it. Coffee. Coffee! Yes coffee!
When my kids were born I immediately started using a travel mug to drink my morning coffee. I just figured a lid would be a good way to protect my coffee from my kids. Oh, I'm sorry I mean protecting my kids from the coffee. Then I got to realize that I like it that way because I can take my time and it would stay hot. In the hospital they often woke me up at 4 o'clock in the morning for medication or just to make holes in my arm and then I wound up being awake until they brought breakfast at 8 AM. I had no problem ingratiating myself to the nurses so that they would bring me coffee from their personal pots. But I didn't want to make them stand there and bring it to my lips so I drank it with a straw.
I kinda got used to drinking everything with a straw. I guess weaned myself off of using straws for cold drinks. And a while back I announced my happiness when I was able to hold a beer with my hands. But at home I kept a straw in the coffee. I'll have to admit it never occurred to me to stop using the straw because I had so many in the house. But last week I had one left and I figured I wouldn't buy any more straws. And so this morning I just drink my coffee out of my travel mug like a regular person. I think I'll be using the travel mug for a long time. I like my coffee to stay hot and since it takes all ten fingers to hold the mug, I don't need to burn myself.
One more small step towards getting my regular life back.
Update: June 2, 2017 I didn't think I'd be updating this again for a while, but today I had a little breakthrough. Using a credit card is a lot easier than cash because paper money and coins tend to fall out of my hands. It's much easier to just hand my card to the salesperson. But sometimes you have to handle the card yourself. In those cases,using the chip reader is a lot easier than swiping because it's easy to stick the card in the slot wait a moment and then pull it out. But until today, the ATM machine at my local bank didn't really work for me. You have to insert the card and pull it out rather quickly. My fingers haven't been that good at pulling it out rather quickly. This challenge hasn't stop me from trying, but if I try to many times the card will not work anymore. But I'm not shy, I had no problem going into the bank and asking the nice manager for some help. But today, I forgot that it was a challenge. I just walked up to the machine stuck my card in and out in the proper amount of time and then press those little buttons and got my hundred dollars. #FUGBS
So I figured out which bidet would work for me and had it installed. Then my wife and I were figuring out all the other little details that would need to be arranged for so we wouldn't have to pay someone to hang around with me all day. We bought a new coffee maker (I'm sorry planet Earth we got a Krups machine) .... Figured out how to leave the lids a little open so I can have lunch. I even asked the staff at the YMCA where I work out if they would mind helping me with some of the contraptions I need to pull the bars on some of the devices (When they smiled and just said "that's why we're here", I was overjoyed). One of the last little humps that I had a figure out how to get over was putting my own socks on. You wouldn't think that would be that hard except I still don't have the grip strength in my fingers to pull them up. If you've been paying attention to my blog you would've known that on September 25 I fractured one of the little bones in the foot. I didn't need a plaster cast, but I did have to wear a boot that was secured with Velcro straps. Since the neuropathy in my hands hasn't healed as well as my feet I was unable to get that boot on and off. But earlier this week I was given the green light by the orthopedist to just take it easy wearing regular shoes. So, exactly 31 months from the day I walked into my doctor's office and was told to hurry up and get to the hospital because you have a life-changing illness, I walked out of a different doctor's office knowing that I can begin to resume a normal life. This week I was able to say goodbye to the person that I had hired two years ago to help me do almost every activity I needed to do. Now, I can wake up, get out of bed, and do everything you do in the bathroom. I can make myself coffee, get dressed and leave the house. I could choose to go to the gym or take a bus or subway in a different direction. With a little bit of advance planning I can go into a restaurant and by myself lunch or go into a grocery store and bring some food home. I can compare my disability to slavery and institutional racism. But I think I can appreciate what it's like to have your freedom restricted.
Home Alone Out Alone Fuck you GBS I'm free at last
Update October 22, 2016 ..................................................... It's been a long time since I updated this post. Maybe too long. Maybe I should've bought a bidet months or years ago. But now I have one.
Now that I purchased this model from
Overstock this pops up as a Facebook ad.
So my dear reader, you only have to use the tip of your imagination to think of the indignities I had to go through about once a day because my fingers and wrists are is about as useful as a big of carrots. Now, I can get on up whenever I want to go, as long as a home. It might be a long time, if ever before I get to update this post again. But a lot of people only sit down on their own toilets.... ..... And if anyone says I told you so, I'm you spend a few days at your place thanking you....
December 2015..................................................................................................................................
On the third to the last time I visited my friend Paul in hospice, I witnessed something no one should ever have to see. We were chatting for a while he asked me to hand him the buzzer for the nurse. We ran so many miles together he didn't ask me to leave because he had to pee. When the nurse came in he said he needed some help getting to the toilet. She then said something like, "We talked about that Paul, remember what happened last time, your legs are too weak, we have to bring you a bottle." Nobody should ever be in the room with someone who was told they already stood in front of the toilet for the last time. Fast-forward a couple years and I'm in the intensive care unit this time. Remember, I walked into the hospital, but once I was there they did n't let me walk around too much. The morning of my second day I buzzed for the nurse and told him I had to pee. I made it to the bathroom but when they let go of me in front of the toilet I almost hit the ground. They said after this we'll bring you a bottle. In that moment I was with Paul again
For a couple weeks I was able to hold the bottle, and then neuropathy started to affect my hands worse. For four months while I was hospitalized and a few more months at home I couldn't even stand and be at the same time. Then for a while I was able to stand, but I didn't have the hands to deal with the rest of the process, so I still needed a person and a bottle. A couple months ago I was able to work out the process of peeing, but pants with zippers and buttons not so much.
Last night I decided to push the envelope a little. For the first time in almost 19 months I just got up, walked to the bathroom, took a leak, and came back to the living room without asking for help. This is big. This means, that if I wearing the right kind of pants I could use a public restroom by myself.
October 2015............................................................................................................................................ I need to give this one more update. And it's also time to describe some of the processes I had to go through in various hospitals. You don't really have to read this, because it is NSFF(not safe for work) and TMI (too much information)
When I went to the emergency room I was just wearing shorts and a T-shirt. I difficult to be moving. I actually get my shorts on for about five days in intensive care. Then one evening a couple of nurses aides came over and said hey you want to take a shower? I had been out of bed and for five days, and wasn't thinking much about showering but it sounded like a good idea. They put me onto a thing that was like a combination of a wheelchair and a beach chair. They rolled me into a little room that had a shower and then they peeled me out of my clothes. I said out loud goodbye dignity", because I actually sort floating away like a balloon into the hospital For the past year and a half I've been struggling to get it back.
Where do the boy parts go?
When I walked into my doctor's office back in May 2014 I knew I had problems. But one of them like was myself. Prior to all the weakness that occurred in my arms and legs, I had incredible pain. Kidney stone level pain. And I've had kidney stones and have been told I be prone to more. So I keep oxycodone around. When I had this pain I self medicated little. I didn't know that oxycodone doesn't work on nerve pain, but since the pain to go away I just took more oxycodone. It didn't help, it did make me happy but it did make me really constipated. So being a quadriplegic and totally clogged up was not a fun combination. All my fifth day in the intensive care unit I mentioned to my nurse that I got a problem, that I had not pooped in five days. She said yeah we know if nothing happens tomorrow it's all of our problem. So in the middle of that night I rang the bell.
So.....I'm in intensive care and having gotten out of bed or pooped in five days. They bring over this chair with a little hole in it and tell me that they will help me get on it. I look at it and say "but where do my boy parts go?" The nurse says don't worry about it do what you gotta do. Okey-doke he but IP when I poop. So they hit me up on that thing, but as I predicted I became a frigging fountain. Sorry.
The constipation all effects of the oxycodone lasted for about a month. I stayed on a once a week schedule during that time. In acute rehab they had better rolling commodes with my boy parts, and they actually rolled me over a real toilet. But the first two out of three poops I had at Rusk required a plumber after I was done. I don't know about you, but have ever were able to look back and say holy shit that was the biggest poop I ever had. Well, I looked back and four turds and each of them was the biggest crap I ever took in my life.
Yeah, I got regular and came home from the hospital. That was 13 months ago. But I still needed a sliding board to get over onto a raised commode. It took me a few months but then I was able to put the commode in the bathroom and use a walker to get to it. Then the walker became unnecessary. But, I couldn't even stand in front of the toilet.
So in the spring I was able to pee standing up. It was really exciting to recycle that portable uranal.
A few weeks ago I started up Occupational Therapy again. It's great. I'm just ask questions like what do you want to do that you haven't been doing. There's been so much I've been afraid to try, but lately I've learned that I can yes drink from a glass, no more beer through a straw.
The third week of OT I said that I didn't know if I could get up off a regular toilet. So we tried it in the therapy gym. Without holding onto anything and without taking my pants down I easily sat down on a toilet. And then I got right back up! FUCKING WOW. Yeah, I still need a little help in the bathroom with those things that require fine motor skills from the fingers. But raised arm commodes and urinal jars are behind me. (Pun intended) August 2015.................................. life's been getting better, been spending four or five hours out of the house it any given time. I just have to make sure I go before I go. April 2015 ................................... I wrote this post below back in August when I was in rehab. Lately, I've been posting about my progress how far I can walk the fact that I can handle a flight of stairs now. But my whole day revolves around personal needs that I need help with. I don't need a sliding board anymore, but I can't just go anywhere.
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Written from rehab in August 2014
Sometime in the next 24 to 36 hours you're going to feel the need to go to the bathroom. You're going to get up, go to an appropriate place, take off an appropriate amount of clothing, sit down for an appropriate amount of time, and when you're done you're going to clean yourself. Hopefully get up and wash your hands leave the room and move on with life.
If you are a believer thank your god that you can do this without pressing a button, and calling for help, using a sliding board and a commode chair that was specifically adjusted for your height. If you're not a believer just don't take taking a shit for granted.
Hey, besides being an old punk I'm a cheap bastard. I really have issues with spending money on myself. But seeing this little thing on their website I figured I can get in for free. When I got to the entrance desk things almost got ugly. They didn't have any signs they're saying disabled people and their helpers got in for free so I said “ hey, you don't have any signs here but it says on your website that people with disabilities can get in for free?” how she replied almost knocked me off my feet or cause my fused right wrist to make contact with her face. But I kept calm. She asked, ’ do you have your disabled card? “ I was old geared up to see Punk stuff so my blood pressure was already at max. In my head I was thinking I'm screaming in her face and telling her isn't it bad enough that I am fucking disabled do you think I have to carry a card around with me. Instead of showing are my scars up close I just took out my ack stress o ride MetroCard. She smiled and asked me if I needed one or two free passes. Deep breath.
ok anyway I went upstairs and took some crappy pictures. There was a lot of stuff of my youth including some albums that I still own.
And a mashup of another album that I own. like I pointed out and in earlierblog post about this photograph oh, I was there when this photograph was taken. I might not have said it back then when I saw this photograph in the Brooklyn Museum. But photography does not do that moment Justlike taking photographs from the north rim of the Grand Canyon, or from the Moon looking back at the Earth. Except that this was a photograph taken of an action scene. The energy at the moment that picture was taken was so profound in the Palladium back in 1979 that everyone in the room would have been okay if it would have triggered a nuclear explosion It turns out I wrote a Blog about Joe Strummer on the anniversary of his death and of his birth
So at this exhibit they had photographs that were taken when I was in the room. they're also many record albums that I own (that I'll actually would unload if they weren't on the top of the back of the closet). In a locked display case they were buttons and other promotional stuff from the punk era. Here's a card that was handed out somewhere that's an advertisement to a show that I was at.......And hey I just dug through all my ticket stubs and couldn't find one for a Johnny Thunders concert on November 11th. But that doesn't mean I wasn't there because I found a lot of ticket stubs for concerts I have absolutely no memory of ever seeing. If you're reading this and you knew me 40 years ago can you tell me if we went to see Queen together or Bruce Springsteen? Anyway, punk rock was about anger. I walked in the door and got mad and then got less mad . but looking at all the stuff they had definitely got me mad. I hate to see my early life in a museum
Okay, every two weeks I do my shift at the Park Slope Food Co-op. before GBS I used to go in early and help unload a truck for 2 and 1/2 hours. I was on a leave of absence for about 3 years and when I came back I joined the shopping Squad. Instead of unloading a truck or stocking shelves I sit on a stool at the door and make sure everyone paid. Oh and by the way in the two years that I've been back at the co-op I've had five surgeries on my hands. 2 on the right and three on the left. During the recovery. I've been in slings and cast for between six and eight weeks each time. So that's like 40 of the past 100 weeks I've been in a cast. Last week one of the Shoppers at the co-op in such a nice way looked at me and said oh I've noticed you've been having trouble with your hands it looks like they found you a perfect job here. FUCK YOU, I'd rather be unloading a truck!!! Thanks for reminding me I'm a cripple
Last week I participated in a really marathon on a 200 M track. It sounds crazy, but it was awful amount of fun. When each team finished they got to do a victory lap on the outside of the track and for a short moment I got to feel like an Olympian because that's how I was treated. After that lap we exited the track and were given or medals and engraved glass beer stein. My guide happened to be in front of me and offered me the coupon that the beer stein came with. She doesn't drink so she had no need for the free beer.
Moments after she put the medal around my neck she plucked the card out of the beer stein, ignoring me and looking at my guide she said, "Can he drink?" I snapped back "CAN YOU!" The speed at which she put that beer ticket into my beer stein spared her my raith. Who the fuck was she to think that just because I don't move my legs or arms like most other people that I don't enjoy a beer with my friends.
Yeah, a few lifetimes ago I had a job where I trained bartenders to prevent alcohol abuse.. It is the bartenders job to determine if someone should have a drink. I'm sure the staff at the Armory knew this. So the person handing out the medals took it upon herself to question whether or not I can consume alcohol. She might've thought she was doing the right thing. But no.Sadly, it's common that able-bodied to people assume that just because you have a physical impairment that you might other issues.
Or maybe she thought I was already high from the way I walked.đŸ˜‹
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It was a long time ago. About three and years ago. But the words are bouncing around my head a lot right now. She said, "Get used to it."
I was not allowed to make an appointment with the wheelchair clinic until I came home from the hospital. Then I had a wait a few months to actually see someone would help me get a powered electrical wheelchair. That was all really screwed up because when I came home from the hospital I was in a loaner chair that needed me to make it move with my hands and arms. Yeah, when I came home from the hospital I couldn't lift my hands to hold a fork let alone push a wheelchair by its spokes.
When I finally went to pick up the chair the occupational therapist and the salesperson from the wheelchair company wanted to make sure it fit just right. She told me that insurance wouldn't buy me another one after this and that I should make sure this one works well because I would have it forever. "Get used to it". What the fuck! When I came home from the hospital I couldn't stand without help. But now, a few months later when I'm picking up his wheelchair I can get around a little bit in the house with a walker. I couldn't figure out why she was telling me to get used to it, I was getting better! In my head she wasn't talking to me, she was talking to the thing that was temporarily occupying my body. I knew this wheelchair thing was temporary! I can't comment that Occupational Therapy office because I knew I needed that powered wheelchair to get me through the nextchunk of time. She wasn't talking to me
Today, I can't tell you where the wheelchair is now.
But I can tell you that since being told to get used to it I've walked marathons. Marathons within S. But honestly my joy of finishing these marathons is slightly overshadowed by the sadness that I know that there are people who do have to use these things forever. But I am a little bit happy knowing that at least one guy that has the working wheelchair that he needs.
October 2017...
GBS literally knocked me off my feet back in May 2014. At that point I had finished 29 marathons, three of them actually being distances longer than 26.2 miles. Marathon running was how I defined myself. I was the guy you like to run to marathon the year. Most of my friends will long-distance runners and my part-time job was all about road races.
In a little more than two weeks I'll be starting the New York City Marathon. It's going to be really hard, in the past couple of months I've completed 18 miles once and 13 miles three times. Whether you're healthy or recovering from a rare disease marathon training is actually harder than the marathon itself. I'm not really sure if I'm ever going to be able to prepare for this distance again.
What I don't need our people asking me if my disease is affecting my cognitive ability and telling me I could be making a grave mistake by attempting to run a marathon. What I also don't need is to be told that I could always stop and take a cab home because they'll be other marathons. Needs
There might not be other marathons. I might not ever be in this physical shape again. The likelihood of me falling while training might be too high to try to do this again. I don't need people to tell me it's okay to quit. That's why my son is going to be my official "Achilles guide" during this marathon. I told him to treat me like Dumbledore told Harry to treat him. I can stop and rest but I have to drink every drop, complete every mile.
September 2017...
I had to see a new doctor that was totally unrelated to my neuropathy, , And optometrist. He was recommended by the same doctor who saved my life so I thought it would be a good thing. Anyway, I didn't want to go to back to a place that sells eyeglasses to see if I needed new eyeglasses. The doctor was cool, and he made the standard smalltalk while he was examining me... "What you do for a living?" I told him that a long time ago I was a school administrator but more recently I used to help organize running races. But I can't do that anymore, I mostly sitting home collecting disability. Then I made sure he noticed my hands, all crooked from the nerve damaged and thinned from atrophy. He said, "Oh, I noticed your hands. But, I saw you in the waiting room you able to use your phone. You get a job picking away at a computer keyboard somewhere." It wasn't until I saw the video below that I realized what a fucking ass that doctor. was. By the way, it was exactly 3 years and four months ago that I walked into my doctor's office.
Update, May 2017
"Where there is a will there is a way" This irks me in so many ways. In the context in which it was sent to me the person didn't even understand that I wasn't sure whether or not I wanted to even do the thing we were talking about. I wasn't sure it was worth any effort, not to mention this infinite effort implied by this overused phrase.
But when someone says, "where there's a will there's a way" to someone with a disability that they may or may not understand it just shows a complete lack of sensitivity to what a disabled person may or may not be able to do. Just because you saw a video of a guy with no arms and legs pulling a locomotive across Tasmania doesn't mean that a guy who has nerve damage in his hands should be able to operate a motor vehicle on public roadways. Or if you read about a woman who can't see, hear or speak but routinely saves lives at her job as a lifeguard doesn't mean I should go back to work on loading a truck.Anyway, these people are circus acts. And really, just because someone ran a marathon in 2:10 minutes doesn't mean that anyone could do that if they just tried harder.
So please think before you open your mouth. If you tell a disabled person "where there's a will there's a way" what they're hearing is "You are a loser if you don't achieve my definition of success for you".
Update April, 2017
So it's been almost 3 years and I've accepted the fact that my gate is less than perfect. I walk funny. A little like Frankenstein or a zombie. My arms don't swing the way yours do, but the big problem is I don't really lift my toe as my foot is hitting the ground. I don't land on my heel, my whole foot hits the ground at once. You don't have to announce to the world that you can hear me coming. Everybody knows that, ass hole.
Update November 2016
Okay, I really have to vent here. Because I mostly kept my mouth shut. But this doesn't really have anything to do with how to treat people whose lives were changed because of illness. This is about how to act in front of someone who's disabled, specifically using a wheelchair. For now, and just for longer trips I'm using my wheelchair again because I broke my foot.
It's hard to be in a wheelchair, especially if you thought that part of your life was permanently behind you. So I'm trying desperately to hold on to the little pieces of my life that I have regained since getting out of a wheelchair.... My running club organizes an easy run of the last 10 miles of the New York City Marathon course one week before the race. I was on my way to participating in this race when my foot broke, so for me the glory of the marathon will come next year. But I realized that I can still help out my club by using my wheelchair to go behind all the runners and make sure everyone finds their way from the 16 mile mark to Tavern on the Green and Central Park.
Emotionally, it wasn't very easy for me to decide to do this in a wheelchair but I put my big boy pants on and showed up. And then it wasn't too bad I was able to keep the wheelchair going at a steady pace and keep up with the back of the pack. I felt like I was doing a good thing and I know next year I'll be back on my feet. After a couple miles up First Avenue we had to detour a little bit around a construction site. A construction worker looked at me and said " That's cheating," and I heard another one say, "Ccan I write on your lap?." I replied, and they heard me, "that's not even a little bit funny."
But here's what I wanted to say.
Fuck you, fuck you, fuck you! Can you fucking imagine how every molecule of my body would rather be running?! Who are you, fucking Donald Trump?
Now go up to the third floor of that building you should be building and jump off the fuckin' ledge. Break your back so you children have to change your fucking diaper.
I feel little better now
Update October 2016 This isn't the worst thing, and I get it from people who really care about me. It's been two years and five months since I was completely paralyzed, and I've gotten a lot better. But I have come to grips with the fact that I'm never gonna be the guy who can hold his fork with just three fingers. In fact, I have accepted the fact that I will always need to use some special contraption in order to pick up a fork or spoon. I actually find it easier to rest a sandwich on the top of my right hand and hold it stable with a finger from my left hand as I aim it towards my mouth. So if we go out to lunch together be prepared for a little bit of a mess. It's okay, when I'm home alone and want something to eat it's a lot messier. Yeah, I can deal with the fact that my hands will never work like yours. But it's a little distracting to sit across the table from someone who looks at me like it's the end of the world to them .
Update June 2006
A couple weeks ago I finished the Brooklyn Half Marathon. I'm getting a lot of congratulations from people who know me and even strangers. They ask what's next and I told him I plan on completing the New York City Marathon. Some people don't know what a marathon really is, so I tell them. Then they look at me kind of crazy and say something like, "Oh, have you done that before?" I respond, "yeah, before this crap happen to me I was preparing for my 30th marathon and this will be my 20th New York City Marathon. Ironically, the last New York City Marathon that I ran I was a pace team leader, and held up a sign that said 'five hours run with me'. This year, I'll be competing as an Achilles Athlete, that means I will have guides assigned to help me."
Then they look at me and tell me that I will run a five hour marathon again or I will be a pacer again. I smile and say something like, yeah... One step at a time. But what the fuck, do they have any idea of the difference between walking the marathon distance in 10 hours and training to run it in five hours or less. NO! Or, do they know something my doctors don't. I don't get it when people just open their mouths and tell me what I will do it again. Do these people know that I can't use a porta-a-potty without help? It doesn't make me feel better when people just open their mouths and say what they think is nice. The doctors, the best doctors in the world, don't know how much more healing is in me. It doesn't make me feel better to fantasize about what I might do. If you want to make me feel better, just acknowledge how far I've come.
The lawyers make us say certain things to protect stupid people from themselves. "Past performance does not guarantee future results." Unless you really know something that my doctors don't you should keep your mouth shut.
Update April 2016 If you are the person who spent their entire life minimizing the time you spend off the couch and now you can barely do your daily activities because your knees won't hold up your excessive weight, don't tell me to rest.
I spent four months in the hospital where I couldn't even roll over in bed, I rested enough. For another year people applauded me because I can stand up, I rested enough.
Now when people tell me the rest it just makes me want to run further.
Don't tell me to rest Update March 2016 I haven't used a wheelchair in many months nor a cane in a few weeks. Sometimes I see strangers on a bus or in the park using the same kind of equipment I used to have or in a similar wheelchair. It's hard to figure out what to say. At one of the races I helped organize, a husband pushed his wife around Prospect Park, in the type of wheelchair I used to hate, one that was uncomfortable even for sitting and torturous while being pushed over bumps. I 'ran' over to her and told her that I used to be pushed around one of those and now look at me. "I can walk". She said "no my condition is different I'm never getting out of this chair...." I met well, really. But I realized the most supportive kind of statement isn't always that supportive. It might just remind people of things they just don't want to think about all the time.
I also should mention I have joined the Achilles Running club for a lot of their runs. I've had the pleasure of meeting lots of people with disparate disabilities. I consciously did not say "see you later" as a way of saying goodbye to blind people. But I listened to them and realized that they were saying "see you later" to people all the time. I also learned that people who I just are blind are not always totally blind. There are many degrees of visual impairment. After one of our runs we took a breather in a playground where my kids used to play. The guide who was helping my new visually impaired friend helped her walk around all of the playground equipment so she can touch it and know what I was talking about. Then she took out her phone and started taking pictures of the slides and ramps. She said she was going to go home upload them to our large screen so she could see what we were talking about. I had no idea....
Yesterday, I attended a big family function where I saw a lot of people who haven't seen me in a long time. They were really happy to see how far I've come. Some of them hadn't seen me since I've been sick and only heard that I was paralyzed. The question I wasasked me was, "Are you going to fully recover?" Or "How long will it be until you're fully recovered". I know, I know they really ment well. They saw how far I came and were excited about my recovery. My answer was vague, "If I can recover as much in the next 20 months as I did in the last 20 months I'll be very happy." But deep in the pit of my stomach, I really didn't like being reminded that I'm never going to be the same again. Update January 2016 Included in the doctor's letters that they wrote for my disability insurance includes the statement, "the patient does not suffer from any psychological or cognitive impairments." The following two statements come under that category.
A friend asked me if I needed any help getting out of the car. I said, "No I'm fine." When I was getting out of the car his hands are all over me. Dude, you asked me a question and I answered it. Why did you ask it, if you're not gonna follow my instructions
another person thought it would be a good idea if I went to a certain meeting. Then he called me back and said it wasn't that important because of my condition. My condition does not stop me from making that decision for myself.
Here's the big picture. If I need help, I'll ask for it. Please don't make a big deal out of what you think I can and can't do. I don't know what I can and can't do so what makes you think you know?
Update December 2015 I just realized the same crap came out of this one person's mouth in just one week.
He said he didn't know where to sit in the car because he had to figure out where the "cripple" would sit.
He was surprised that I walked to a party that was a mile from my house. He said, "Did it take you three hours to get here."
I don't have enough strength in my hands to hold onto a pencil. He reached out to shake my hand and when I shook as he said, " Ack, you should shake like a man."
BTW, this was a grown man.
Update August 16, 2015
In one breath someone called me a gimp, and the next breath he said I might be too drunk to drive you can come with me you couldn't get any more fucked up. If I thought he was too drunk to drive I would've gotten the car, and I would've forgotten he said that. Update July 29, 2015 Don't make jokes that you wish you had a wheelchair. Don't fain envy. Don't tell me you want to sit on my lap. Not remotely funny! And I have to clamp a thing onto my hands so I can hold a fork. Don't look at it and say I wish I had one. No you fuckin don't!
Update May 23, 2015 Last night I was reminded that Tom Cruise is a good actor. He played Ron Kovic in Born on the Fourth of July. That scene where he came home from the VA hospital in wheelchair His face as everyone told him he looked good. I cried inside. Update, May 3, 2015 This is something that's been done by a lot of people who I really care for. Just because of sitting in a wheelchair and my back is to you and I don't know you're there doesn't mean you could tap me on the head. I hear fine if you say my name turnaround. Update, March 16, 2015: The worst thing you can do if you see someone you think you know and suddenly in a wheelchair is to look away. Yeah, I'm the guy who helped to you unload a truck at the food co-op, or I might be the guy you ran all of the Park with, or I might be the guy who just cheered for you when you ran a race. I am still the same guy!!! You can say hello!!!
I know a lot of you people might be shocked to see me in a wheelchair. But please engage the brain before you open your mouth
.
- Well, this might not have happened to you if you didn't push yourself so hard with all that running
Actually I probably would have been a lot worse off or even dead if I wasn't fit when this happen to me.
- Is disability temporary or permanent?
It depends how long I live and go fuck yourself.
- I know someone who has something like what you have.
No you don't, you don't even know what I have.
- I just remembered another one. When I was in the hospital and couldn't get out of bed people asked me if the nurses who bathed were hot.
I honestly didn't think of that until people asked. But it did make me wonder if their moms were hot.
Okay, The crap above represent shit that came out of peoples mouths who knew me. Below is the shit people say to be to a stranger
I'll pray for you
Really, which God? The God that put me in this chair or the God that you gonna pray to that will take me out. I think it's pathetic that these believers assume I'm one of them but I've learned to just say thank you.
Everything happens for a reason
I don't even know if this can possibly mean. And my being punished? Am I suffering because of the fact that someone else got lucky? Do they think that they has to be some sort of balance in the world and I need to be on the bottom put them on the top? So I just roll my eyes and ask someone to push me away from that person.
I'll add more as people say more shit to me. Or you could leave your stupid shit n the comments.
If I were asked to describe the New York City Road. Runners Club Open Run program in one word it would be welcoming.
Welcoming because at every park I went to I felt welcomed by the race director and all the other participants. There was never a moment where I felt like I was a burden to anyone because of my disability.I don't always feel comfortable asking for help but there was never a moment where I hesitated to ask someone to help me with safety pins or other items that might've required fine motor skills.
I also felt welcomed into everyone's park. Everyone seemed very proud of their open run and was happy that I was visiting. Everybody for their park with the best pork will be open runs. So messed my opinion on which I thought was the best park. I always go people they got the chance to visit Brooklyn Bridge Park, the sunsets would be worth the trip. At a couple of parks everybody was talking Spanish to each other until I opened my mouth. Then everyone switched to English is for me.
At one park I had to very carefully extract my own foot from my mouth. I stupidly mentioned that I was in a neighborhood that my parents would never have let me go to when I was a kid. I was trying to say how far the neighborhood had come. But I got a few sideways looks from people mentioning that they had lived through the 70s and 80s in the same neighborhood. Later they welcomed me by telling me which buildings had their bodies and their doorways "back in the day".
The participants in the open run program don't just welcome new people to their neighborhoods. Through this program experience runners or welcoming new runners to the world of running. There was a general theme going on it will be runs I went to. People would show off their metals from recent races and they made it pretty clear to the runners who didn't earn them that they will. Nor runners were always asking advice from the more experience runners and the experience runners were glad to share it. Please note that I'm talking about experience runners and novice runners as opposed to fast and slow.
Also, these regularly scheduled runs are places where people who been living in a neighborhood for a while get to welcome their new neighbors to the neighborhood. At a few runs it was clear to me that some of the people there were new to the neighborhood and young and they were being greeted warmly by some of the old-timers in the neighborhood. I really got the impression that this is where they met
Larry took these photos
So dear reader, you might be wondering why I'm talking about the open run program now. Well, to the right is a picture of me participating in the 17th of the 17 open runs. That was last Thursday evening and on Sunday I participated in the new open run in Crocheron Park.
Below is the old map. It does not include the newest open run in Crocheron Park or the one that opened a few weeks earlier in Jersey City. If your knowledge of New York City is based on TV shows or tourist attractions you think New York is all skyscrapers and brownstones. I think I truly saw what makes New York great. Visiting these parks I have see New York City's beauty in all seasons and I've gotten to meet people in every corner of New York City.
So if you're just visiting New York where you'd like to visit another part of New York I urge you to put on your comfortable shoes and run or walk at the next open run you can. https://openrun.nyrr.org/
some of them were in busy parks like Brooklyn Bridge Park or Morningside Park. Or you can head out to Conference House Park in Staten Island where I was warned to look out for dear.
Hey, I updated this blog post because they added a couple of more parks and I've been to them also. Here is a photo from Baisley Pond Park that my friend Larry took./If I would ask you where this picture was taken by ience USPS with the Queens
Full disclosure: On Sunday I participated in an indoor marathon relay. It was held on the Armory track in Washington Heights. As I understand the rules the marathon distance was 211 laps of the 200 m track and every team had to have eight people and everybody had to run three times.I was probably the slowest person on the track that day and ran the fewest amount of laps. I ran 400 m, three times at about the 18 minute per mile pace. Yeah, my contribution to this marathon was about three quarters of a mile.
My first memories of the Washington Heights Armory were running high school tracking meets there. First, I remember the stench. The three-hour subway ride from Sheepshead Bay already smelled of BenGay from my teammates warming up and stretching on the QB train. But when we got there we all put a little BenGay above our upper lip to mask the smell of the cots that were on the infield that were filled with sleeping homeless people at night. The track was just paint on the gym floor, and that floor was so in need of maintenance that the air was filled with sawdust. For some reason the coach had me do the 2 mile race walk. I was so slow I remember being waved off the track so they can just start the next event. Fast-forward 25 or 30 years and my kids are now on a youth track team. The teams indoor meets are held up at the newly refurbished Armory in the mostly gentrified neighborhood of Washington Heights.
The track was built in Italy and reassembled to be the fastest track in the world. I'll never forget the question my son asked me as we walked in and saw the flag with five rings on it above our heads. "Daddy, is this an Olympic place". "Yes, this is where people become Olympians." The flag still is there.
The day before the individual marathon competition the male world record was broken and the fastest woman came within a minute of breaking the indoor record for her gender. This leaves me pretty humbled. I was about to run on the track where less than 24 hours earlier a world record was set. Then I find out that the team I am competing with from The Central Park Track Club is attempting to break the relay record. They smashed it by about 10 minutes and then posed with the clock.I wish they would've put a WR on the clock (I don't care that one of my friends pointed out that this was a bullshit record. I don't care that the next day the winner of the Boston Marathon was over a minute faster. I really don't care that a bunch of collegiate millers could have done it 20 minutes faster. They didn't show up)
I didn't think I would need a guide. But when Linda volunteered I found out I needed one. I was physically and mentally unprepared to run on the banked track and I'm sure having her there kept me from making a fool of myself. Also, when you're focusing so hard on running and not falling down the side of the banked track it's hard to count to 2.
Thanks Linda
I would also really like to thank the people at Achilles reporting this together. Rebecca who spent her whole day there getting us all to face in the right direction (talk about herding cats!) And I like to point out something that not many people noticed. That Michael Anderson put two teams together that finish within about three minutes of each other.
To the right is most of us. Two teams and everyone's guides and some more helpers that came.(Of course, Larry Sillen is not in the picture as he took it. He took the rest of the pictures on this post as well.)
A friend shared this photo with me. He wanted to point out the fact that the rail was not in raised text her so it was useless do the visually impaired.
August 20, 2019
This might sound weird but the one thing I can do now that I couldn't do five years ago or five weeks ago is put deodorant on both my armpits by myself. Yeah, there might be many ways of defining yourself as a human being. but one of them for me is being able to put a little Old Spice on my armpits without asking for help.
I have to give a shout out to two life-saving products First, the Aqua Total Hygiene glove. It is designed for bathing but it makes it possible for me to achieve toileting. And then of course there are Shittens, the as seen on Shark Tank life-changing product that has changed my life. Yes, changed my life! 
Anyway, in case the above products are unavailable or I'm not around functioning bidet I can always take a shower and floss myself with these. I get them on eBay for $.99 apiece.
My left hand was in worse shape now my right hand. The wrist worked poorly in one direction only. If I hold my hand out and face my palm up I can lift my hand. But if I turn my arm over and have the palm face the ground I cannot lift my hand from the wrist. Also, the axonal nerve damage going to the fingers in the left hand was pretty bad. Atrophy kicked in and the fingers pretty much stiffened up in a very open position. So after consulting with amazing surgeons and occupational therapists we decided to put some screws in my fingers so instead of them being stuck in a useless position they are now stuck in a useful position. You can't really tell from the x-ray which was taken from above, but four of my fingers are now permanently bent at a 75° angle. My left hand is permanently cupped as opposed to flat as it was before the surgery
A couple years ago my son told me I was a toddler because a toddler is defined as a human who was learning to walk. He told me I was the toddler anymore when we finished the New York City Marathon together. I was very proud of finishing the marathon but I still felt like a toddler. Toddlers can't independently go to the bathroom.
To the left is a picture I was able to take of my right hand before surgery. That's me trying to make a fist or trying to lift my hand, it looks the same. To the right is what they did to my hand.
Update: October 17, 2017
So, exactly 31 months from the day I walked into my doctor's office and was told to hurry up and get to the hospital because you have a life-changing illness, I walked out of a different doctor's office knowing that I can begin to resume a normal life. This week I was able to say goodbye to the person that I had hired two years ago to help me do almost every activity I needed to do. Now, I can wake up, get out of bed, and do everything you do in the bathroom. I can make myself coffee, get dressed and leave the house. I could choose to go to the gym or take a bus or subway in a different direction. With a little bit of advance planning I can go into a restaurant and by myself lunch or go into a grocery store and bring some food home. 
Home Alone
So in the spring I was able to pee standing up. It was really exciting to recycle that portable uranal.
A few weeks ago I started up Occupational Therapy again. It's great. I'm just ask questions like what do you want to do that you haven't been doing. There's been so much I've been afraid to try, but lately I've learned that I can yes drink from a glass, no more beer through a straw.
Hey, besides being an old punk I'm a cheap bastard. I really have issues with spending money on myself. But seeing this little thing on their website I figured I can get in for free. When I got to the entrance desk things almost got ugly. They didn't have any signs they're saying disabled people and their helpers got in for free so I said “ hey, you don't have any signs here but it says on your website that people with disabilities can get in for free?” how she replied almost knocked me off my feet or cause my fused right wrist to make contact with her face. But I kept calm. She asked, ’ do you have your disabled card? “ I was old geared up to see Punk stuff so my blood pressure was already at max. In my head I was thinking I'm screaming in her face and telling her isn't it bad enough that I am fucking disabled do you think I have to carry a card around with me. Instead of showing are my scars up close I just took out my ack stress o ride MetroCard. She smiled and asked me if I needed one or two free passes. Deep breath.
ok anyway I went upstairs and took some crappy pictures. There was a lot of stuff of my youth including some albums that I still own.
So at this exhibit they had photographs that were taken when I was in the room. they're also many record albums that I own (that I'll actually would unload if they weren't on the top of the back of the closet). In a locked display case they were buttons and other promotional stuff from the punk era. Here's a card that was handed out somewhere that's an advertisement to a show that I was at....... And hey I just dug through all my ticket stubs and couldn't find one for a Johnny Thunders concert on November 11th. But that doesn't mean I wasn't there because I found a lot of ticket stubs for concerts I have absolutely no memory of ever seeing. If you're reading this and you knew me 40 years ago can you tell me if we went to see Queen together or Bruce Springsteen?
Okay, every two weeks I do my shift at the Park Slope Food Co-op. before GBS I used to go in early and help unload a truck for 2 and 1/2 hours. I was on a leave of absence for about 3 years and when I came back I joined the shopping Squad. Instead of unloading a truck or stocking shelves I sit on a stool at the door and make sure everyone paid. Oh and by the way in the two years that I've been back at the co-op I've had five surgeries on my hands. 2 on the right and three on the left. During the recovery. I've been in slings and cast for between six and eight weeks each time. So that's like 40 of the past 100 weeks I've been in a cast. Last week one of the Shoppers at the co-op in such a nice way looked at me and said oh I've noticed you've been having trouble with your hands it looks like they found you a perfect job here. FUCK YOU, I'd rather be unloading a truck!!! Thanks for reminding me I'm a cripple
Moments after she put the medal around my neck she plucked the card out of the beer stein, ignoring me and looking at my guide she said, "Can he drink?" I snapped back "CAN YOU!" The speed at which she put that beer ticket into my beer stein spared her my raith. Who the fuck was she to think that just because I don't move my legs or arms like most other people that I don't enjoy a beer with my friends.
I was not allowed to make an appointment with the wheelchair clinic until I came home from the hospital. Then I had a wait a few months to actually see someone would help me get a powered electrical wheelchair. That was all really screwed up because when I came home from the hospital I was in a loaner chair that needed me to make it move with my hands and arms. Yeah, when I came home from the hospital I couldn't lift my hands to hold a fork let alone push a wheelchair by its spokes.
Okay, I really have to vent here. Because I mostly kept my mouth shut. But this doesn't really have anything to do with how to treat people whose lives were changed because of illness. This is about how to act in front of someone who's disabled, specifically using a wheelchair. For now, and just for longer trips I'm using my wheelchair again because I broke my foot.
A couple weeks ago I finished the Brooklyn Half Marathon. I'm getting a lot of congratulations from people who know me and even strangers. They ask what's next and I told him I plan on completing the New York City Marathon. Some people don't know what a marathon really is, so I tell them. Then they look at me kind of crazy and say something like, "Oh, have you done that before?" I respond, "yeah, before this crap happen to me I was preparing for my 30th marathon and this will be my 20th New York City Marathon. Ironically, the last New York City Marathon that I ran I was a pace team leader, and held up a sign that said 'five hours run with me'. This year, I'll be competing as an Achilles Athlete, that means I will have guides assigned to help me."
Then they look at me and tell me that I will run a five hour marathon again or I will be a pacer again. I smile and say something like, yeah... One step at a time. But what the fuck, do they have any idea of the difference between walking the marathon distance in 10 hours and training to run it in five hours or less. NO! Or, do they know something my doctors don't. I don't get it when people just open their mouths and tell me what I will do it again. Do these people know that I can't use a porta-a-potty without help? It doesn't make me feel better when people just open their mouths and say what they think is nice. The doctors, the best doctors in the world, don't know how much more healing is in me. It doesn't make me feel better to fantasize about what I might do. If you want to make me feel better, just acknowledge how far I've come.
Hey, I updated this blog post because they added a couple of more parks and I've been to them also. Here is a photo from Baisley Pond Park that my friend Larry took./If I would ask you where this picture was taken by ience USPS with the Queens
Fast-forward 25 or 30 years and my kids are now on a youth track team. The teams indoor meets are held up at the newly refurbished Armory in the mostly gentrified neighborhood of Washington Heights.
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