Thursday, July 11, 2024

Happy Disability Pride Mouth

This morning was the kickoff celebration for disability pride month at
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

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.


Friday, June 28, 2024

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.

Friday, June 7, 2024

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

Saturday, June 1, 2024

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

Sunday, March 24, 2024

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.

Thursday, February 1, 2024

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.


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.

Add caption

Tuesday, January 30, 2024

For safety sake?!?

I go to MTA board meetings and attend committee meetings and discuss accessibility in the New York City mass transit system. A lot of other things are discussed at these board meetings that really I don't think have anything to do with me. But this week they were talking about the installation of these safety gates that were installed at the 191st Street Station on The 1 Train. I figured I'd go check them out.

Well I knew I wasn't going to go visit a mass transit station like the JFK Air Train on the air train people are kept away from the platform the same way people are kept out of elevator shafts. It's kind of impossible to fall into the platform just like it's impossible to walk into an elevator shaft. Things have to go really wrong for that to happen. And then there's the doors at Disney World's monorail.It would take a lot of focus to accidentally walk onto the track, there.

So, when I went to 191st Street I really didn't expect to see the gold standard that we have at JFK nor the moving fence at Disney World.I understand, that to separate the platform in the same way we are separated from elevator shafts at almost 500 stations and thousands of platform would literally cost trillions of dollars. But what I found there was truly underwhelming And probably more hazardous than having nothing there at all.

Simply bolting a yellow fence into the ground to try to discourage people from walking towards the subway platform where the door will not be isn't going to stop anyone from falling or being pushed onto the tracks. And in fact I think they are actually a trip hazard themselves.I can't pretend to speak for how the visually impaired navigate the subway system. Perhaps I can update this blog with input from one of my visually impaired friends. But I can't speak as someone with mobility impairment. I see the fence and while I'm walking around it I would be worried that I would trip over the bolts that hold it into the ground.The one positive thing I can say about the subway system that it often goes unsaid is that there's no potholes on the sidewalks and platforms. For the most part it's a smooth surface. There are no metal plates sticking up out of the ground. Except, now at 191st Street. As the train approached the station I was easily able to see the fences and knew I can walk around them. And the train wasn't very crowded so I was the only one getting off. But if I was getting off the crowded train for the first time, it would be very likely that I would walk very close to that fence and trip over the bolts that hold it into the ground.

Maybe the MTA only wanted to spend a few $100,000 on this pilot project. But maybe a few hundred grand more would have been well spent on digging a little trench, so those brackets and their bolts could have been smoothed out. I know the MTA didn't want to spend a trillion dollars walls that would move when the trains actually rolled in. But what they did at 191st Street is worse than doing nothing. I hope this pilot and soon for safety sake.

above is a picture of the downtown platform
 of the 191st Street one train taken from
 the uptown platform. It shows yellow
 fences evenly spaced that are
 intended to protect people from falling onto the tracks
above is a close-up photo of the
bracket that holds the fence into the platform floor.
It looks like it's raised about half an inch and the
bolts themselves are raised in another half an inch

but here's the thing the MTA can do if they're concerned with safety. They can stop parking their vehicles in accessoride bus stops. Yesterday, well if you my friends and I were protesting in front of two Broadway we noticed an accessoride vehicle completely blocking the street for about 10 minutes so it could unload a passenger who was using a wheelchair.The reason it had to block the streetWas because the accessory bus stop that is place directly across the street from the MTA headquarters was completely blocked by government vehicles.One of them was a police car and the other one was in Accessoride Supervisor's car. 

above is a photograph of a Toyota Camry parked
in an accessoride bus stop. It's license plate is MTA AC 1830
I know that is is a accessoride supervisor's vehicle because when I went across the street to take a picture of its license plates the security guard or police officer who has been assigned to keep an eye on us while we protest came over and asked me why I was taking a picture. I told him because it's blocking the accessory bus stop which is causing that accessory vehicle to back up traffic all the way the city hall. And at the same time making the person who was using a wheelchair exit onto the street instead of the sidewalk. He told me if that supervises didn't park there someone else would so they park there. I began to tell him that that logic is completely faulty but I didn't want to get into an argument with him.

I know that the MTA doesn't have control over enforcing bus stop regulations. That's the police department and the Department of Transportation. But they can't tell their employees not to stop for park in any bus stop. Especially one in front of their own headquarters that is designated for people with disabilities to use.

I just updated this to add my 2 minutes of testimony on this subject to the MTA board on January 31st, 2024. 

I start speaking at 22 minutes and 30 seconds. Right after Robert De Niro made his 2 minute speech

Wednesday, January 24, 2024

Richard Traum NOVEMBER 18, 1940 – JANUARY 23, 2024 -

Dick Traum died yesterday. He was the founder of Achilles International. Achilles is an organization that kind of has two functions. Their primary function is to help people with disabilities train for and compete in athletic events against people who are not disabled. There are other function is to give people with different types of disabilities a chance to hang out together. {i might be making all this up, I'm not looking at the Achilles website to see what their goals are. This is what I think their goals are / should be and I did read the last two books that Dick wrote}. If you're looking for the official obituary for Dick Traum you can find it here.

I want to use this opportunity to talk about how of Dick Traum helped me get better. It wasn't just the stuff he did by creating Achilles. The model of bringing together athletes and people who want to help athletes really clicked for me. Now I'm out there recruiting guides. I tell people from my "other" Running Clubthat if they enjoyed cheering or helping organizing races they would really enjoy guiding a disabled athlete in a training run or a race. If you feel good about being one of 50 people thousand people run a race Imagine how good you'd feel if you are the one person who makes it so that one other person can run that race. Also, the friendships I've made here oh without a doubt greater than any I've made anywhere else.

Above is a photograph of Dick Traum in his three-wheeled handcycle.
It is opposed to picture taken in front of the reservoir in Central Park
But I'm done talking about running. I want to tell the different kind of story about Dick Traum and how just knowing him made me better. Back in 2017 Dick Traum was still the President of Achilles International. Dick Traum well suddenly on different sides of a political fence. A really big fence. And everyone I knew was on my side. It affected the management and leadership of Achilles International. It was ugly and I don't have to talk about it here now.But I really wanted to let Dick know what I thought of what he did. He often came to the Saturday morning workouts in Central Park I would see him there and I had a whole speech prepared in my head.

I didn't have an opportunity 

But I did go up to Boston to cheer for everyone at mile 18 in the 2018 marathon. That year the weather was epically terrible. It's basically a point to point race and it was a headwind blowing sleet and rain into the faces of the racers. Hours into the race Dick Traum rolled by in his racing wheelchair. It was low to the ground and he was being splashed with ice water as the runners passed  him. I cheered for him like I said for everyone else and I don't think he heard me.

Photo above is a picture of people cheering
in the rain for people who are hand Cycling in the rain

A few weeks later on a beautiful Saturday morning I was at the Achilles workout in Central Park. Dick Traum was there doing his workout and there was a moment where it looked like I can walk over and tell him what I thought of his politics.But instead my mouth started doing things that my ears and brain weren't ready for. I was going to walk over and tell him what an asshole I thought he was, but instead...

me: I was cheering a few weeks ago at mile 18 at the Boston Marathon and I saw you go by and I think you're the most badass guy I ever met.

dt: Why would you say that?

me: Because you was soaked through to your underwear with ice water and people were running by and splashing you. If you would have stopped there or not even have started. You look like you were pushing through hypothermia.

dt: Well, once you soak through your underwear what's the point in stopping.

me: yeah, that's what badass mother fuckers say. It's a pleasure to know you, sir.

I shook his hand, again and walked away feeling really good about what my ears heard my mouth say.

I know it wasn't your job, but Dick Traum, you have inspired me to be a badass motherfucker.

Rest in Power 

Editing to add this: it's been suggested to me that I reach beyond politics and talk to some of the people I happen to be related to. I would if they had any redeeming qualities. 

Thursday, January 18, 2024

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. 

Wednesday, January 10, 2024

DFL Again

In the first week of this year I finished the dead fucking last in two races. The first one wasn't really a thing. My running club puts on a handicap race on New Year's Day. Everyone estimates they're finished time for a loop of prospect Park and I overestimated my speed.I forgot that I was going to take it easy because 6 days after that race I was going to attempt to run a 50 km race. 

Last month, on December 3rd I registered for my running club's 50 km race. The Prospect Park Endurance fest. The fact that it was paired up with a 50-mi race and had a time limit of 15 hours made it just right from me.I knew that I would have no problem finishing 31 mi in 15 hours.But what I didn't anticipate that day was that it was heavily raining from the start. Within minutes of the race my feet will water logged. That wouldn't have really been a problem if it weren't for the fact that I was wearing ankle foot orthotics and custom made prosthetics holding up my fallen arches. I felt my feet moving around in my shoes and after 13 miles i really worried that either my shoes my orthotics or my feet were going to break. So I walked off the course after running about 14 mi. A DNF is a hard thing to accept, but I didn't want to let that little voice in my head that kept saying "at least you finished" cause an injury.  To add, i wasn't disappointed that I didn't finish. I was disappointed that I didn't meet the second set of guides that we're going to keep me company while I went around Prospect Park.

A couple of weeks after I walked off the course in Prospect Park a friend of mine that also happens to have Guillain-Barre syndrome sent me a message about a 50k in Queens. She told me she was going to try it. How can I not sign up for a 50K where two of the competitors would have GBS. So clickityclick I'm signed up for another 50K. I should have known that a race named the Frozen Flamingo 50k wouldn't have better weather than a race in December.

Well, weather comes in a spectrum. It was not better and it was not worse. There wasn't continual heavy rain. The race started at 7:00 a.m. and for the first few hours there was light rain. Then there was some heavy rain. Then it stopped then there was a little sleet. And then it's snowed a little. The snow didn't stick nor did it cause anything to get slippery. But the rain didn't go away when it hit the ground. They were multiple places on the course where the puddles were unavoidable. And when I say unavoidable I mean to say that you had a choice of three or four inches of water or walk through mud that yanks people's shoes off.Or walk around our entire ball field that was also saturated with water.I actually found a detour to the entire course and spend some time on some sidewalks outside the park.I didn't think walking through the mud was a safe alternative.

Are those of you that do not know me I should tell you that I am an Achilles athlete. That means I'm an athlete with a disability. I could run by myself but it's really not a great idea. If I'm going to walk out of my house I wear ankle foot orthotics that hold up my toes. Otherwise the likelihood of me tripping over my own foot is pretty high. So if I run a race or go out for a long training run I go out with an Achilles guide. They mostly keep me company. Sometimes they're a little overprotective but I can't complain. If I fall, they have to pick me up. But getting a guide for 31 mi race is kind of a challenge. So, I Set up a Google spreadsheet so people can fill in their names for each lap I was running.The course was 15 laps of slightly more than 2 mi each.The plan which I pretty much kept to was to run each lap in 40 minutes.About a dozen people signed up to guide me for one or more laps.Some of my guides were people that I met before and for two of them I was the first athlete they ever guided. I really appreciate it the help and companionship that I got from all the guides that came out. I hope they also had a good time

And I'm really proud of my accomplishment. I recently did some math and it was my 39th Marathon finish. Five of those marathons were distances above 26.2 mi. It was my 10th marathon finish since being diagnosed with GBS. The race director pointed out that my splits were very even. All but one of the 2.06 mi loops we're in about 40 minutes. The one that took 47 minutes was when I changed my clothes. Once my guides told me the weather forecast said the rain was over I, took off my not so waterproof rain jacket, hat and my hoodie. I actually wanted to put the hat and hoodie back on but my guides had to point out to me that they were completely waterlogged. I had no idea. I'm also happy to report that I do not have a cold. It's been 3 days since I ran the race and having wet feet for 11 hours didn't make me sick.

here's a picture during the first half of the race

after I changed my top two layers

to the left is the Facebook post about 20 minutes after finishing, it says...
I just won a 50K race. edited to ad a little clarification. 50 km is 31 mi. It was also a D2D race Dawn to dusk. I started at 7:00 a.m. and I finished just before 5:00 p.m.. there was significant periods of light rain short periods of heavy rain a snow shower and some sleet.
Without my Achilles guides it would have been a terrible experience. Because they were with me it was wonderful.
10 years ago there were some doctors that thought I might die. I didn't just live, I reaffirmrd that I am alive
#GoAchilles #FUGBS 
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— at Kessina Park.

To the right is a photo provided by the flamingo kid running company. There's a lot going on there. It's a picture of myself on the right and to the left is Marie. She's responsible for getting me into this. We are both survivors of Guillain-Barre syndrome.We are both holding up the special awards we earned for finishing dead fucking last. They are little turtle key chains. TurtleIs are the mascot of people with GBS. 
Getting Better Slowly.

This is not me

This is not me
Not me.

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