10 years ago, yesterday

On May 7th 2014 I walked into my doctor's office and she told me to rush to the hospital because I had Guillain-Barre syndrome. She made a point of telling me to go to Mount Sinai Beth Israel Hospital in Manhattan because the hospital around the corner from my house would have killed me. She actually said that and I've learned that that might have been true. In the emergency room they confirm my diagnosis and told me I be fine in a year. I joked and told him I had to be home and move my car on Friday because they wanted to clean the street. In my mind I joked to myself that I was never fine so I would be looking forward to getting fine. But they were wrong. A year went by and I wasn't fine. It's been 10 years and I'm not fine.But yesterday I read traced my steps from all the hospitals I went to 10 years ago.10 years ago they moved me around in an ambulance, yesterday I ran them.

I walked in the door of the emergency room at Mount Sinai Beth Israel Hospital on 2nd Avenue and 17th Street. My doctor had called ahead and they were expecting me so I didn't stay in the emergency room for more than 5 minutes and was put on a Gurnee and left in front of the nursing station. They started running a billion tests and I actually asked one of the doctors if I was being admitted because I really didn't understand what was going on.He looked at me quickly and said yes we're just trying to figure out where we're going to do the spinal tap.Here, or upstairs and intensive care.For most of the rest of the 135 days I was hospital the doctor has had some great bedside manner. That was a moment where it didn't happen.Hearing the words intensive care and spinal tap in one sentence is not really what people want to hear. They did the spinal tap downstairs and then rolled me up to the Step down suite where I received IVIG for 5 days and then moved into a regular room for a few days. 

The higher light of my stay in intensive care was watching a guy best to have a camera removed from his poop. I'd repeat the story but I already told it in this blog post 

They determined that the IVIG was working and that I stopped getting worse so I can move to rehab. The buildings were physically connected by a bridge but they put me in an ambulance.

The building next door was rusk rehab. I was leaving the Mount Sinai / Northwell Health System i'm moving into the NYU Langone Health System. I have since learned that these are big deals. I wouldn't say that I didn't have great doctors at Mount Sinai but I learned what great doctors were about when I got to Rusk.Simply put they understood that happy patients heal better. A big part of their job was to keep me happy. They took care of the big things and the little things. Little things like having good food that was served with a smile. Big things like paying attention to my progress and respecting my opinion. 

One morning when I was there my favorite nurse came into my room after my breakfast was served. She sat at the edge of my bed and picked up the menu and started circling stuff. I told her that I think the nutritionist already indicated what I wanted to get for food the next day. She told me that she was circling stuff for herself She wanted to start having breakfast with me and this was a way of getting free food.I realized that I had arrived at the best place with the best people and I became the best patient.I was in pretty shitty situation but I had arrived at the status of making the best of it. A few years later when I was still using crutches I walked right back into that hospital and went up to the fifth floor where at Ludmilla was working. She happened to be sitting right at the front desk and without looking up at me she asked me who I was there to see. I just had a one word answer. "You." She jumped up and hugged me. We were both crying like babies and I started laughing. She asked me what was so funny. I told her that I didn't know she was short.She worked with me for weeks but I had never stood up in her presence before.

. 

But there was a problem. It wasn't that I wasn't getting better It was that I was getting worse. so the decision was made that I needed to go back to a regular hospital.

Another ambulance ride to NYU Langone Hospital. There they thought my diagnosis should change from GBS to CIDP. The difference is big. GBS is an acute condition. Your immune system attacks the sheaths your motor nerves over a relatively short period of time.a few weeks. Chronic inflammatory demolition polynoropathy is when your immune system attacks the sheets of your motor nerves forever. At first they were going to give me another round of IVIG but then they realized they needed to do what they called the more aggressive treatment. They put a central line in my carotid artery and filtered my blood for an entire day over the course of 5 days. Then they gave me five more rounds of IVIG. As soon as that ended they sent me back to Rusk.After a few weeks at Rusk the doctors and I realized that was a problem. I was still getting worse.... Back to Langone.

This time they didn't do anything for a couple of days. But every doctor in the hospital seem to come in and visit me. When a familiar doctor came into my room I asked her if there was a big room on the top floor of the building where they all sat around a big table and talked about me. Yep, pretty much that.I asked her if I'd be better off at Columbia University Hospital because I found out that was the center of excellence for people with Guillain-Barre syndrome.She told me the guy from Columbia was also in that room.So was a guy from London Paris and Tokyo.I was a puzzle that a lot of really smart doctors with trying to figure out how to solve.They presented my wife and I with their research results. They explained it in a way that made sense to both of us. My wife understood the math and I understood the reality of paralysis.buff label non-fda approved chemotherapy. They needed to reboot my immune system. This wasn't even a drug trial they were trying on meI was patient number 14.

Either the chemo worked or the disease had run its course but I stopped getting worse. But the bad news was that my diagnosis was changed. It wasn't GBS or CIDP anymore. I was officially diagnosed with acute motor axonal neuropathy. My immune system was attacking my motor nerves and not just the covers of the nerve sheaths. The mantra of the doctors changed from you'll be fine in a year to let's talk in 3 years.The other part of the bad news is that I could not return to Rusk. I wasn't going to be healing fast enough to meet their standards. I had to go to what the hospital social worker called subsequent care. But, what I later learned was called a nursing home.My wife had 36 hours to make a decision on where I should stay. The scary thing was that the length of time I was going to be in that nursing home was at that point considered unknown.And the even scary thing is that after my wife visited five different nursing homes she came in and treated me like an adult. She told me she only had bad news. I was going to hate it there. She's always correct. We chose the nursing home that had physical therapist that were trained by the same people who trained mine in the hospital. They will all associated with NYU Langone/Rusk.

There are three pictures here. The cell on top shows a picture of the front door of Gouverneur. In the middle shows the side of the building and a tree. That's what the tree looked like on the day I went home. Leaves are starting to fall and there's a little bit of yellow in the leaves. I remember looking out that tree out my window all the time. I remember that I walked out of my house on May 7th and it was now getting to be the middle of September and I still wasn't home.I hated the fact that the tree was changing. I had missed the entirety of the summer. 

Governor was a shit hole. So many people on the staff were looking at it as their second job and was sleeping through their shifts. I needed help to go to the bathroom and I remember once pressing the call button i'm waiting through two episodes of Law and Order and no one came.So I fumbled around for my phone and called the main number for the nursing home.Then I asked for the nurses station on the 5th floor and all the head nurse on my floor that it was Michael Ring in room 515 and that I really had to pee. A nurse's aide came running in minutes later asking me why I had to call the hospital for help.I told them I rang the bell 2 hours ago and was waiting here and that they couldn't even hear me call.She denied that. I didn't really care what she said It was the culture of that place to treat patients like shit.If you Google Governor and Covid you'll find out it was kind of the center of death during the pandemic.I've lost sleep imagining what it would have been like if I would have had GBS during covered.

There's also a picture of a park bench out there. Directly across the street from Gouverneur was it playground attached to the LaGuardia houses. During the months that I was in Gouverneur I was often given a pass to go outside. It was kind of hard to be pushed around the neighborhood so going outside mostly meant going across the street where my kids or my family and my visitors would sit on the benches. I was using a wheelchair and was unable to transfer myself onto those benches. I remember looking at that bench and wishing I can sit on it.All I wanted to do was sit on a real chair and stretch my back.When I finished my run yesterday I sat right there and cracked my back.

Leaving Governor wasn't easy. After the first week being there because of the incompetence of the social workers they were going to transfer me to a place where I was going to get palliative care. Someone checked a box that I was never going to get better and I didn't need to be in a nursing home that had physical therapy.After that I had to appeal my termination of care every 3 to 5 days.I hated it there. Anyone would. Physical and occupational therapy was pretty good, but other than that the place was a nightmare. Besides having to beg to go to the bathroom the food was commonly terrible.I was mixed up with people who had dementia and who were clearly never going home.But the culture there was that everyone had dementia and no one was going home and we weren't worthy of respect.Once I realized it only took me one person to transfer me to a bed from a wheelchair I told him I was ready to go home and they were shocked They thought I wanted to stay there forever.

Anyway, it's been 10 years and I'm not fine. But then again I don't think I was ever fine. I've had more than a handful of surgeries but I haven't had any relapses. I run at literally half the speed that I used to run. But I run. i hate saying expressions like " the new normal" or " it is what it is" fuck that shit.I love, literary love the people like met only because I've become disabled. But don't get me wrong. I would chop off any given limit to make the other three work perfectly again, and to have never gone through this shit. Fuck you GBS

Below is a picture of the run I did yesterday  

Choose a carrot

Above is a photograph I took from my
seat at the entrance desk.
 It shows about five or six carats hanging on a box
 that the shoppers
 can take when they enter the co-op.
Most of the carrots are actually upside down

Once every 6 weeks I have to do workshift at the Park Slope Food Co-op. 

(i actually work once every 3 weeks because you'll never see my wife in there. And to digress... when I went to orientation I asked the orientation leader if it would be okay if I would do every work assignment for my spouse.The orientation leader who was young enough to be my child told me of course it would be okay for me to do all the work for my partner, many members do that. But then she turned and looked at me and told me it would be very important in terms of our relationship that she does something to make up for all this work I am doing. Instead of killing her I told her that my wife goes to work and makes all our money. she told me that was fine and I kept my mouth shut and was allowed to join the co-op ) 

When I joined i took a job with the receiving squad. Our responsibility was basically to get the food from the truck to the shelf. Sometimes we unloaded the truck, sometimes we moved it around in the basement, and sometimes we moved it from the basement to the shelves. I enjoyed it. I enjoyed meeting my neighbors and we actually talked about the fact that they'd be five of us unloading a truck and between the five of us we had eight advanced degrees.We were happy we only had to do it for less than 3 hours and even paused to talk about what it must be like to do it for 40 or 50 or 60 hours a week. Physical labor could be fun for short periods of time.We acknowledged our privilege

Then I got really sick. If you're just reading this blog for the first time when I say really sick I mean intensive care sick. 135 days in the hospital sick. Coming home by wheelchair sick. Not really gotten that much better sick. The food co-op doesn't make people work who can't work and I was given a medical leave for a number of years. But then I got a call from the office telling me they think I'm ready to come back to work. It didn't occur to me that I was but they kind of caught me walking around the street and told me to figure out what I could do.I realized I was fully capable of staffing the exit door.Just checking to make sure that everyone has a receipt.And then Covid happened and they took that job away. Now every three weeks I stay off the entrance desk. 

 Below is the black and white job description

Shift Description

Every Wednesday and Thursday, the wearing of a face mask will be required on the shopping floor from 8:00 a.m. - 8:00 p.m., starting 11/22/23.

Entrance desk workers will:

• check in working and shopping members
• use the shopping tag system to maintain limits on shopping floor capacity
• inform members of their individual and household status
• read and interpret member information presented on the entrance desk screen

Entrance workers provide an essential member service and must be welcoming, polite, able to read and interpret information on the entrance desk screen, and clearly convey information about member status directly to members.

Entrance workers also provide a key security function, and must remain alert throughout the shift, which may have slow periods, therefore reading, writing, talking on the phone, texting, etc. are not allowed.

Punctuality and good attendance will be essential, as you will be the only entrance desk worker scheduled for the shift.

Coop staff will train you on your first shift, and provide support and answer questions going forward.

 

Shift Requirements

Entrance workers should be punctual, have good attendance and be welcoming and polite to members and guests.

Other requirements are:

• Communicate clearly information to members entering the Coop
• Work in a busy environment interacting with many members
• Pay attention to the flow of members entering the Coop
• No eating while working at the entrance desk or on the shopping floor
• Being prepared to work continuously for the duration of the 2.75 hour shift without shopping or taking excessive breaks 
• Interact cooperatively and respectively with members and staff
• Report to and follow the instruction given by the Coop’s staff assigned to front end and technical support

What's not really clear in the job description is what the character all about. The co-op has a limited occupancy because of Covid. Everyone who walks in the door takes a laminated piece of paper that's hanging on a little hanger. All the pieces of paper are the same and they all have a picture of a carrot. There is a finite number of carrots. Shoppers hang the carrots on their wagon and when they're done shopping they either bring them back to me at the entrance desk or someone who's helping out on the shopping floor brings them back to me and clumps. When there's no more carrots to be given out We are at capacity and I can't let anyone in.

It wasn't really my plan but I seem to go beyond the job description. People have told me they enjoy shopping when I work at the entrance desk because I treat everybody with joy. I don't just, "Interact cooperatively and respectively with members and staff."

• welcome to the shopping place
• choose your carrot
• take the carrot that is choosing you
• don't give it so much thought it's a short-term relationship
• Take the penultimate carrot...  You get the ultimate carrot
• I love it when we run out of carrots. Does that means the co-op is at capacity and I get to tell people they can't go shopping. My little power trip
• There are many carrot jokes and puns. And I'm extremely uncomfortable when people choose an upside down carrot. 
• Some people want a different colored carrot. Now they are all orange because people used to fight over the green ones
• But when it's not busy I'm so lucky because I get to flirt with the toddlers
• I also like to remind people to buy everything they wanted to buy. Because they don't want to have to come back. It's a little bit of quick hypnotism. Maybe.

Some of my friends who've interacted with me at the entrance desk Have pointed out how much a perfect fit it is for me.And I realized a few things.First and mainly, I'm a freaking extrovert and sitting in a doorway And greeting people is perfect for me. Also, I've told people that I spent four and a half months in the hospital. Most of that time I was staring at the TV or the walls. I've told people that I was just daydreaming about working at the entrance desk at the coop. (not really). 

But the other day I had a magnificent epiphany.

Recently I've gotten busy as a disability rights activist. I really understand the term reasonable accommodation. I never asked for a reasonable accommodation at the co-op. I was simply told to go figure out which jobs I think I could do. Which I think actually is one of the best workplace reasonable accommodations you can ask for.  My days have unloading trucks and stocking shelves are over. But when I do my shift at the co-op there's no reason I can't simply greet people and press two buttons on a keyboard and let them go shopping. I can read what the computer screen says and I can tell people if they have any issues before they walk in. My disability doesn't matter.

That's it, for 2 hours and 45 minutes i'm doing what I can do. I'm contributing to society. I'm not someone who needs help. I'm doing the helping. Everybody wants to be relevant and useful and for 2 hours and 45 minutes I can be that.

So I'm not just an extrovert who gets to greet people for 2 hours and 45 minutes. I'm a person with a disability who gets to do the job they're capable of doing. Not everybody has to be able to do everything. And while some people can't do anything, most people can do something. 

Update for August 20th 2024

the rules keep changing at the co-op and they change every day. This morning I worked on a Tuesday. It turns out Tuesday is the golden day from Friday to Monday people need to get a carrot on Wednesday and Thursday people have to wear a mask. Tuesday Wednesday and Thursday people may bring guests.So Tuesday is the day you can bring a guests and don't need a carrot and don't eat a mask.Some people would confused with the lack of "no". shopping commando and the opportunity to bring in a guestWas just too much freedom for some people.So to make them feel better I reminded them that they needed to wear their shoes and shirt while they shopped.

Some signs

 In the past month I managed to take some random pictures of some weird signs. Here they are in no particular order.

Last week I spent 3 days in St Louis. If you want to see really nice pictures of The Arch or Bush Stadium google will show you some really great ones. Instead here's a picture I took with the airport

in a quiet hallway in the airport there was this little booth set up ready to have someone participate in their first amendment rights. It looks like St Louis Airport was afraid people would overreact to First Amendment so they put everyone in a little box and warn people that someone might speak to them.

The sign reads

 "NOTICE.. 

The airport authority advises that you may be approached by person seeking money donations or petition signatures or distributing literature. 

The courts uphold such activities based on the constitutional right to freedom of speech. 

The airport authority in no way endorses these activities."

also, and equally disturbing every restroom in the airport also has a sign saying that it was a Tornado shelter.  I was in St Louis for a GBS thing. I was interviewed by a drug company and I got to go to a regional conference. But I did get there a day early and I went for a run and I took some horrible pictures of the arch and of the Mississippi River. Again if you're looking for interesting photographs go to Google. But I will point out that it was very weird to be running around St Louis at 9:30 on a Friday morning and not seeing anyone at all walking around. There were office buildings that seem to be completely unused, Or maybe they just had an underground parking lot. There are four bridges that crossed the Mississippi and I ran over the only one that had a pedestrian path. I only encountered two other people. Someone else who was running back and forth and someone who was sleeping on the bridge. 

St Louis with so shut down that at 9:00 a.m. on a Friday morning the only street food vendor that was
there wasn't even open yet but I wasn't sure I was ready for a hamburger a hot dog and egg roll or crab rangoon. I'll have to find out if Crab Rangoon is a specialty of St Louis or something the family that owns the hot dog stand was really into. i just need to add before I publish this that I ordered grab rangoon from my local Chinese restaurant. It was a fried dumpling filled with cheese, without a hint of seafood flavor.

You can click through on the Strava map for some more pictures of St Louis

Anyway back in Brooklyn. Last week I was taking the bus down to the gym and actually missed my stop so I had to walk back a couple of blocks. These two signs were in front of the same house on 7th Avenue around 16th or 17th Street. Really makes me wonder what's going on with their neighbors.   It reminded me that last fall my mother-in-law's cat died. I'm going to share this but if you're reading this keep in mind that I'm an asshole...  Well traveling across Brooklyn all I was thinking about was that this is going to cost me $1,000 because we're going to have to bring the thing to a vet to get cremated and I was looking for alternatives. So I Googled what to do with a dead cat in New York City "In New York City, residents can dispose of deceased pets by placing them in a heavy-duty black bag, labeling it, and putting it out with regular trash on collection day."It was Halloween Eve. All I was thinking about would be what would happen if there was a bag labeled dead cat sitting on a Street in Sheepshead Bay on Halloween. I wanted to park myself on the porch with my camera. Instead we just didn't label the bag. I grew up on that street looking back 40 or 50 years I can't imagine what I would have done if I would have seen a bag on the curb labeled dead cat on Halloween. It would have been horrific.

All right now assign that was significantly less disturbing. Last week I went for a run from my

physical therapy office on 38th Street and 1st Avenue with the intention of running all the way uptown to the Bronx. The path along the East River is still significantly busted up so I had to run up York Avenue for a bit. As I was running on the sidewalk I remembered that I saw a blog about how Avenue A used to continue all the way up to uptown Manhattan. Just when I decided I should look around for the evidence It was right in front of me. On the corner of East 77th Street and York Avenue there's a public school. Without hiring a drone I couldn't take a picture of both the sign that said York Avenue and the etching on the side of the school that said Avenue A.

One more sign. A couple of weeks ago I went to a Met game and after a friend and I decided to get on the seven train and head over to Main Street to find some great dinner. On our way to a great dinner we kind of meandered around and I saw this wall that looked like a great place to pee. For obvious reasons I will not tell you exactly where it was. But it's a good thing this sign was there otherwise I would have peed

and last but not least spray  painted on the side of a wall of a Kentucky Fried Chicken on 2nd Avenue and 14th Street.....   "This is not actually food."   i remember that a bunch of years ago they rebranded themselves and changed their name to KFC. They thought that removing the word fried from there brand would increase sales. They put it back because it turned out the people who buy that shit don't care. it was not there back in May when Google took the pictures

I need to add one more photo I took upon landing at O'Hare Airport in Chicago. I truly believe an entire comedy routine could be based upon this picture. Let me rephrase that. Not one comedy routine.  If I were teaching a class in comedy i would send this picture to all my students before the first day of class and ask them all to have a 5 minute skit prepared based on this photograph.Maybe a combination of this photograph and the free speech booth that I saw in St Louis

Happy Disability Pride Mouth

This morning was the kickoff celebration for disability pride month at

Manhattan
Borough Hall

Brooklyn Borough Hall. I was asked to speak. Strike that, I was honored to be asked to speak. Apartments in all sorts of other things I've given testimony and I just stand up and start talking. Today actually put some notes together. Below are my notes I think I stuck to them.

just updating this post with a picture of me spontaneously being asked to speak at Manhattan Borough Hall

Brooklyn
Borough Hall

I wasn't always like this. Anyone can say that at any time but I had a significant change in my life 10 years ago. 10 years ago, everything changed.

10 years 2 months and 3 days agoI walked into the hospital. When I walked in I had no name for prideI was an upper middle class straight white guy.Let me rephrase that I was an upper middle class straight not yet disabled white guy. 

Until then I always thought pride was for other peopleI didn't need it because I had all my privilege I just thought of myself as an ally and didn't even know what that meant

I stumbled into the hospital because I was developing weakness in my arms and legsI was diagnosed with Guillain-Barre syndrome and Didn't come home  for 135 days. I came home because I was able to transfer myself with the help of only one person They said I'd be fine in a year. They were wrong Because they Meant that I'd be physically fine in a year. Yeah, they were right. I'm fine

I don't think I really started thinking about disability pride until a couple of years agoI just started doing the things I used to do as an able-bodied person. But then I realized I wasn't an able body person anymore and i  wasn't sick. I was a person with a disabilityI had to embrace that and move on with my life.I couldn't be ashamed of myself.I wasn't thinking about pride specifically. But I was thinking about the opposite. Shame. I wasn't going to have any of that

 And then two things happened. 

I saw the movie Crip Camp And went to other films at the real abilities festival. And read Nadina's book and Judy's book and Dick Traum’s book

I also broke through the barrier of complaining about how I was treated as a person with a disability to becoming an advocate for people with disabilities.  And I started hanging out with people like Jean and Kathy and Joe And Chris and Q.

The words disability and shame had nothing to do with each other.When I leave my house I have to wear ankle foot orthotics.  Otherwise I'll turn my ankle and trip over my own feet.

Some people wear them under their pants. That's their prerogative. I choose them to wear on the outsideI and put blinky stickers on them.I'm not ashamed of them.They help me walk just like my eyeglasses help me see and just like someone's car helps them get from one place to another. Nothing to be ashamed of… People that have shame don't get together with each otherThey live isolated lives.Unproductive unhappy lives. Eventually they might make it to the Texas state house. But I'm so happy I live in Brooklyn so I can make this speech in Brooklyn Borough Hall. With pride.

… 

Think Globally, Act Locally

After watching last night's debate i'm so disgusted with politics i feel like I'm the grass under the feet of Some dragons having a fight on TV.  So I'm going to go back to one of the phrases I learned back in college.

Think globally, act locally

Last week and for a week back in the Spring i worked early voting and then was coordinator at my local polling place an election day. We really considered this a practice election for the general election come November so we were going through the motions... Doing everything right and making sure we did everything by the book. But just because we have to do everything by the book doesn't mean we can't make voters feel joyous.  There was some moments of joyity.

There Isn't much on the ballot in the June primary. So much not on the ballot that some people showed up to vote and didn't have a contest. It turned out that the polling place where I was assigned to work early voting had a geographic location so that half the people who lived in that district where they could vote there didn't actually have any candidates to vote for. The polling place was at one end of the district. So if you lived east of where I was working you voted in the primary for both state assembly and United States Congress. But, if you lived west of where I was working you didn't have anyone on the ballot at all. So if I typed out your name it would come up and say no contest. To make it even more confusing they're had recently been redistricting. So the candidate who was running for re-election for Congress who was flush with funds sent mail to everyone who who could have voted for him before they were redistricted out of his district. (I just really read that and it does sound confusing. But basically, they were plenty of people who walked in and by no fault of their own had no one to vote for.)

So on the second day of early voting a whole family showed up to vote. Two parents, with their 5ish-year-old and 8ish-year-old. But it turned out they didn't have anyone to vote for and the five-year-old started crying because she wanted a future voter sticker. I jumped up and got her a sticker. "Of course you are a future voter and entitled to a sticker Just because your parents aren't voting today doesn't mean you're not a future voter..." i gave the sticker to her older sister as well and then turn to their parents...." you both also get future voter stickers Just because you have no primary election today doesn't mean you don't get to come back here in November and vote."

The next day a husband and wife came into vote. The wife walked up to the table to my right and the husband walked up to my table. She was handed a ballot. But, when I typed in the husband's name my screen told me he didn't have a contest. I had to inform him that because he was a registered Republican he couldn't work in the Democratic primary...There would be Republicans on the ballot in November but none of them were running in a primary against each other. His wife turned to him and snapped "I told you so!" I then reached into my pile of stickers and gave him a future voter sticker. Then, before we can tell her photography was not allowed in the polling place she snapped a picture of him wearing the sticker. I'm sure she instantly put it up on her family Facebook page.

After that the Coordinator commented to me that I walked right up to the line of inappropriateness as a election day worker. I told him I don't walk up to the line, I danced up to the line. And he told me that's why he likes it that I'm sitting next to him It makes the day go better.

But seriously, I'm proud to say I do more than just help voters on election day. I'm a member of the accessible voting advisory committee and meet with the Board of Elections on a regular basis representing the needs of people with disabilities in the city of New York. Change and improvements come in incremental ways and while I was working at the election site I was able to see something that I helped make happen.

Because of my work on the committee I was able to create a new sign to be hung in every polling place and hopefully it'll actually be in the doorway of every polling place come next year. In the lower right hand corner of the sign it indicates a circle with a red line through it indicating that pets are not permitted in the polling place. It kind of shows a symbol that says no dogs cats or rabbits. And in the bottom of the sign it shows someone holding a cane and a dog on a rigid leash, kind of indicating that service animals are allowed

in past years the sign just showed an x through a picture of a person holding a dog and it wasn't really clear that people can bring in service animals this is the old sign.

I don't expect this change in the sign to keep everyone from bringing their pet into the polling place. But some people might not bring in their pet after seeing the sign. And if and when the sun gets placed in the doorway the people working at the entrance could point at it and remind people they can't bring their pets into the polling place. Change comes slowly, and I've learned not to let perfection get in the way of better.

Anyway, well being a poll worker I get to go into the local high school and the grade school that my kids went to and I snapped these pictures to remind myself that the next generation of New Yorkers is getting better. Below, is a sampling of the posters hanging on the wall in the high school and in the grade school. Positive messages that do not include the Ten Commandments. I'm confident that young children today are going to grow up slightly better then the young children of the 60s and 70s when I went to school.

Before I was born

That's my great-grandfather. Charles Ring. He smiling and standing in front of his fruit stand in front of 136 Avenue C on the Lower East Side of Manhattan. Now they call it Alphabet City.

The picture is probably about 100 years old.

Below is the Google Street View of the same place. If I did everything correctly it is not the most current street view because that has a truck parked across the street.It's the second newest street view which shows that the building diagonally across the street from my great grandfather is still there

a couple of weeks ago I took a walk over there. I stood in the same spot my great-grandfather stood a century ago.

A friendly police officer took my picture while I held up the picture of my great-grandfather

.

I took this selfie.

And this is the building he might have been looking at while he was selling that fruit and posing for that picture.

Charles was naturalized as a US citizen on June 7th, 1960 exactly 3 years before the day I was born.

It's hard to say what my great-grandfathers immigration status was until he became a citizen. But I do know that when he first attempted to immigrate from Poland because of extreme poverty and prejudice he was denied entry into the United States. Eventually he was permitted to settle the United States with my grandfather and then my father was born.

my father's family. circa 1940

My grandfather and father didn't just sell fruit They sold all sorts of stuff. Their descendants became doctors and lawyers and professors. The American Dream.

Till the left is a really old family picture. That's my dad in the middle. Behind him the guy in the dark suit is my great-grandfather Charles. And off to the right a little bit more in the lighter suit is my grandfather David.

My descendants came to the United States because they were living on dirt floors in Poland and they probably would have been exterminated by the Nazis if they would have stayed. They came to America because it's the land of opportunity. But not just opportunity it was a chance to live. That hasn't changed too much Millions of people are coming here every year because the alternative is a horrible life or none at all. I remember how my family got here every time I get in a taxi and the driver hardly speaks English. I am always nice to them because I know that their children are going to be my children's doctors and lawyers.

Also, I walked home from the subway. I walked one block out of my way to pass 45 plaza street. I took a picture of the doorway. 60 years ago today the obstetrician that delivered me signed my birth certificate. His office was at 45 Plaza Street

Running with a camera phone

 It's been a while since I updated my blog and while I have a do a lot of things to say I'm getting lazy. But I did go for a run this morning. I ran down to the open run and Shore Road Park.Initially I thought it was going to be five and a half miles but it turned out to be six and a half because I took a detour through Prospect Park. Because it's there.

If I look back over the past 40 years of my life. This is pretty unremarkable. I used to do this kind of stuff all the time. But on this day ten years ago I couldn't tell you what hospital I was in without looking at my medical records. I can tell you that 10 years ago there were a lot of doctors who were worried I would stop breathing. Here's to today. A day that I'm still breathing.

Image description: to the left side of the box there's a photograph taken that shows a church steeple and the Statue of Liberty in the harbor. The upper right hand corner of the box so the street sign with the intersection I'm standing at, 6th Avenue and 24th Street. The lower right hand corner of the box shows the image of Greenwood Cemetery which I took from the same place I took the other pictures from

some good and exciting things

Back in 2014 i spent a lot of time in the hospital. I had GBS. Quick paralysis slow recovery. I suffered from quadrupedia, I wasn't completely paralyzed. I was able to move my head and shoulders and my hips. Not so much of elbows and knees.So I spent a lot of time staring at the ceiling.They kept telling me I was going to be fine and for some reason I believed them. I knew I was going to run again i knew I was going to finish races. I knew I was going to finish marathons. They We're not even my happy thoughts. I spent hours staring at the ceiling thinking about what I was going to be like when I won the award for most improved runner.I had a big hole to crawl out of.  

During my alone time in the hospital I cried lot. But it was never the cry of self-pity. I cried with joy just imagining going to be like to be the winner of the most improved runner award.  Visualizing goals.... Improving to the point where I got an award for it. Well, last week I won. And I was actually a little afraid that I would break down and cry on stage. I mean I was afraid that I was really going to freaking lose it. I still haven't publicly mourned for the loss of my motor nerves. I was really worried I was going to spend 10 minutes up there making a speech and crying about it. I chose to keep it quick.I think I just blurred it out something like "It's a good thing to get up when you fall down"  I still owe the world 5 minutes of crying in public. But fuck you world  might never going to pay that debt.

I did other cool stuff this week. I was invited up to Albany to participate in a rally supporting a law that would require people who actually ride the subway to be members of the MTA Board of Directors.( Please click on the link. It explains the bill a lot better than I can. Also my photograph is in the official picture as well) I honestly thought I was being invited up to be supportive..... One of the folks holding the sign behind the people who get to speak. But I realized I was on the agenda. So to the right is the official photograph from the New York State Senate of me speaking at the press conference. "Nothing about us without us!"

Remember of the Accessible Voting Advisory Committee  to the Board of Elections in the city of New York.  There, I have learned that change comes slowly. Especially in large governmental agencies. The Board of Elections in the city of New York is one of the largest election districts in the country. If not the biggest. There are a lot of people making sure that positive changes don't have negative impacts on other groups.  I've remind myself of mottos like think globally, act locally. Or don't let perfection get in the way of better. In any case I sit on the committee as a representative of two groups, voters with the disability and poll workers with the disability. Six months ago I brought up that there's a lot of problems regardingPeople bringing their dogs into polling places.  Not every election day worker knows that service animals are permitted in the polling place.  Also, many of the election workers don't know that pets are not permitted in the bowling place. I brought up that the signage and training was vague. A couple of days ago i was shown the new sign.

 To the right is a graphic showing both signs. The bottom shows the old sign. It indicates there's no smoking eating or photography and there's a red circle with a line through it showing a picture of a dog. In the new sign above it still has the same graphics saying no smoking eating or photography. But the graphic showing that you shouldn't bring in a pets shows a picture of a dog a cat and a bunny. I guess that indicates pets. Also in the center of the picture there shows a graphic of a human holding a dog on a leash and also holding a cane.I guess that kind of indicates that that is a service animal and it is allowed.As I'm typing this I just came back from my first day of early voting for the presidential primary. The new sign was hanging.  Unfortunately the election day workers staffing the doorway did not stop people from bringing in their pets. We're doing better and we can do better.

Another thing that made me feel good about myself happened last week. And I'm going to be very cryptic about this because I literally have been sworn to secrecy. But it involves lawyers. And some of them accuse me of fraud for things I did five or six years ago. They reminded me that my accessoride MetroCard was found being used in subway stations that were not officially ADA accessible.Yes, 7 years ago I was accused of fraud for climbing a staircase. It made me happy to remember that I brought that letter to my physical therapist because I was so proud of it. I literally cannot tell you more about this conversation. But I will say that if it works out you'll read about it on the news if it doesn't it won't be a thing.

But one more thing happened to me last week. I feel like the 20th time and maybe the third or fourth time since GBS I finished the New York City Half Marathon. I just reviewed my race history with the NYRR and I've completed just under 60 half marathons. I'm really guessing, but I probably completed another 40 for other organizations. So I guess I can say I finished about a hundred half marathons. But here's some fantastic photographs of me and my Achilles guides taken on Sunday. 

To describe these pictures is kind of fun. I don't know who took the top one. But it's a pre-race picture with Jacky to the left and Lisa it to the right. The middle photograph is taken at about the 10 mile mark as we're about to exit the FDR on 42nd Street. It is from the official NYRR slideshow. They actually had a guy waving a flag to tell us a photographer was ahead. Lisa's to the left and Jacky's to the right. The bottom photograph was snapped by my buddy Sam Lafata. It is as we enter Central Park at mile 12. 

Again, I'm not making a big deal about finishing a half marathon. Before GBS and currently on the kind of guy who can wake up and bang out their 13.1 mi. It just takes me twice as long now. It's also not a good idea for me to do it by myself. I will always be a fall risk and since I'm so slow in giant races I get to start a little early so I need people to make sure no one slams into me. And towards the end of the race the fatigue kicks in and I'm really not able to take a cup of water off a table. But again I'm not making a big deal about finishing a half marathon.

If a person can be cool by association I did that last month when I was volunteering at the Millrose Games.  My job title there was anti-doping chaperone. That means I am randomly assigned certain athletes based on their finished position to bring them to the person who watches them pee in a cup. I just have to sign a piece of paper that says after they finish the race they did not enter a bathroom or do anything unusual in their pants area. Most of the athletes are chosen randomly.Except if they break a national or world record.I had already escorted my random athlete to the place where they pay When the men's two mile race went off.The winner smashed the world record.The people that didn't win also broke national records.But moments after that guy crossed the finish line I was handed the folder and told to get him to anti-doping compliance. All my training kicked in because I had to endure the press conference and all the kids who wanted his autograph.  I also was trained to do everything I could not to get in any photographs. I just looked and I think I succeeded .I had to act cool. But I felt like a dork. But it was kind of the coolest thing I've ever done

Here's the big deal. On the subway ride home the train was packed.We all squeezed in. There were no seats. But there was a young man with a bag next to him,  taking up a seat and a half. And he saw Lisa, who happens to be 7 years older than me. He offered her his seat. Lisa told me to sit. I had no problem following her instructions because I was getting tired of holding on to the pole with the inside of my elbow. But this kid was really pissed. He was standing over me and said that he didn't give the seat to me he gave it to her. (The 67-year-old woman). Lisa heard him and pointed out my ankle foot orthotics and said that I needed to sit more than her. This kid really didn't see my feet. And I don't blame him at all.  So that was the highlight of my week. Passing for someone who wasn't broken! So if you see me in a public place and ask me about this hold on i might break down and start crying like the baby I am. I eared it. 

So yeah, I sense that I'm rambling. But one day you might walk up to me and ask me how I'm doing. I don't know when, I don't know where but I might break down. Not for my loss. For what I've gained.

Boogie In Your Butt (nsfw)

i originally published this blog a little over 10 years ago. 10 years ago I had my first colonoscopy. This morning I had my second. A few things have changed in 10 years. First I learned from my mistake 10 years ago in that you shouldn't walk out of the hospital and go directly to the hall cart. Lying to the nurse's 10 years ago and telling them my wife was waiting for me outside and then inhaling a chicken and rice was a big mistake. 10 years ago I got on the subway and only made it one stop before all hell broke loose. Today I went home and had my daughter make me some eggs. Also, she actually met me in the hospital so I didn't go home alone. today I had my procedure at one of the many branches of NYU Langone Hospital. I went there because they have 99% of my medical records because they're the hospital I spent most of my time in recovering from Guillain-Barré syndrome.

10 years ago I had the procedure at Mount Sinai Hospital. The Beth Israel branch on 2nd Avenue and 17th Street. They told me to walk in the emergency room entrance.I didn't know that a few months later I'd be sent there and would walk in the emergency room and be admitted directly into intensive care.

10 years ago it was the first time I underwent any kind of anesthesia. I've lost track of how many times I've been put under since then. Today I knew enough to shave the inside of my armpits so when they put the IV in it wouldn't hurt so much when I took the tape off.

I think I'm still the guy that exists at the edge of the bell curve. Today I wore two bracelets. I've had the blue one on since September when I ran the Berlin Marathon. I'm going to wear it till it falls off or until someone recognizes that that doesn'tKnow me already .The other I took off already. But it says I'm a FALL RISK. I can be both. A marathoner and a trip hazard. I'm also the guy who's taken accessoride to the starting line of an ultramarathon.

Below is everything I wrote in 2014..........

I heard this for the first time in my car.  I was with buddies and we had to pull over we were laughing so hard.

That was a while ago.  Things just got real.

Since I just turned 50 I am supposed to have a colonoscopy.  I subjected myself to this because it is a lot better than dying of Colon Cancer.  The colonoscopy itself was not so bad.  Basically you lay down with your butt sticking out of a gown in a very crowded little room.  You get a shot and wake up somewhere else an hour later.  A nice nurse brought me a cup of orange juice.  Twenty minutes later I walked out the side door of the hospital and directly to the Halal guy for a chicken and rice.  If it were above average I would have eaten another one.  Then I meandered back to the subway for a ride home.

Here are some photos  I left them small to protect your eyes.

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Then I had to sign the bottom of a form so that the medical staff know I read this.

Because air was put into your colon during the procedure, expelling large amounts of air from your rectum is normal.

I could have used a note for the subway ride home.

Oh, the procedure itself was a piece of cake compared to the prep.  No solid food for an entire day. (No, melted ice cream is not solid food, I asked).  In the afternoon, I went for a walk and kept tripping over myself to not go into every pizza place.

Then I had to drink The Gallon of Stuff. People told me it tasted horrible, but I did not think it was so bad, then again, I am used to drinking Gatorade.

Now I know where the expression Holy Shit comes from.  It was kinda weird to have exploding diarrhea and not be sick.

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