I made it to the big screen

Back in March the people that the New York City Roadrunners Club contacted me and asked me if I'd be willing to talk to some people who are making a movie about the people who finish at the very back of the pack in their big races. Sure.

A couple of days later on a really nice day they met me at the Achilles workout in Central Park. We plop down on a bench and they put a microphone on me and asked me a couple hours worth of questions. I told them I wasn't always the last guy that I used to be a mediocre marathon runner and finishing about four or five hours and now it takes me 9 or 10. "it might take me twice as long but now I have twice as much fun" when I remembered saying that I heard the director say to the sound guy "did you get that?" and I knew I was going to be in a movie.  Zoom in on the picture to the right and you could read what I actually said. They will recording I don't remember shit tend to embellish.

The day after the Central Park interview was the New York City half marathon. They told me they were interested in filming me during the race. Blah blah blah blah blah. They met me at ass o-clock 5:00 in the morning in front of my house and put a microphone on my son and I. They recorded us walking from my house all the way to the starting line and then kind of ambushed us three or four times along the course.

So last night they had a screening party. My son was my plus one because he was my plus one in the race.It was great that he was there because he acted as my guide more on that in a minute. But the screening event was at a fancy hotel in Manhattan ($1,200 a night!?) that had a movie theater in the basement and an actual red carpet. I realize when I got there that I had a handler. There was one staff member who was assigned to make sure I was in the right place at the right time. 

And I made it to the local news. Just a video of me moving my lips with no audio. followed by the classic pathetic comment by newscasters that they couldn't even....... . Maybe eventually the newscasters will watch the whole movie and realized that the whole point of it was to say that anyone can finish a marathon you just have to choose to do something very hard and suffer.

And they were fancy people at the screening. I turned around and saw Meb Keflezghi. I explained to Nicholas that I've only been a fan of one sports figure in my whole life and that was him. He turned around and looked at me and said he came to see you and a movie. Oh shit. Then without me knowing it Nicholas found my handler and arranged for me to meet Meb.

I told him that for the next two weeks I'm going to be telling everybody that he came to see a movie about me. And I will.

 

Anyway below is the trailer. The film is not available yet and when it is I will share it here. There's also going to be a screening party. Bring your tissues and your money. It's going to be a fundraiser for Achilles International. 

Making security theater a little less unsafe

First, and second and third and more than that...  It is terrible when someone finds that way onto the tracks that doesn't want to, either accidentally or on purpose. But building barriers on subway platforms is only microscopically going to reduce this from happening. Also they're success is unmeasurable. But people who benefit were enjoy fear-mongering are saying that the subway is dangerous and something must be done. So the MTA is installing permanent fences on the subway platform in the areas where the doors do not open on the subway cars. I feel this only makes people feel the subway is more dangerous because things are being done to to prevent a bad thing that very rarely happens. Whatever.

In articles about them they would describe as better than nothing. But since I am a disability writes activist fighting with the MTA or the time , I was given a tour of one of the first stations to have them installed. I actually said nothing would be better than these. They created unsafe condition for someone with a mobility impairment. I told the engineers that they were a trip hazard.I took a picture of how they're connected to the platform.The base of each barrier as a mounting bracket about three or four inches square and a bolt holding it into the ground on each corner. I told them someone like myself who drags their feet could trip over it or someone with a vision impairment who's walking close to it could also trip and fall right onto the platform. I snapped the picture on the left at the Clark Street station.

About 9 months later without any warning ( or a parent necessity) these barriers were installed at Grand Army Plaza. The subway station that I would refer to as my home station. I took a look at them and lo and behold! They redesigned the way they're mounted to the platform. The bolts are completely underneath the leg of the fence. They're still useless but slightly less of a trip hazard.

Now we just have to paint them bright yellow so my visually impaired friends are less likely to bump right into them.

This reminded me of the one time that I sent one email and made the government fix something. It reminded me that sometimes something could be made better but no one realized how easy it was to fix it. The second closest subway station to where I live is 7th Avenue for the B&Q train. I really need to hold on to the rail when I walk downstairs and I really need to hold it with my right hand.Have to finishing a marathon It's especially tough and I noticed the rail going down from Flatbush Avenue at that station was lower than the rest of the rails.I had to lean over to hold on to it securely. Every other hand rail on every other staircase seem to have some standard height that I was used to. I filled out the complaint form and a few weeks later I got a boilerplate email saying that the problem had been rectified. I really thought that was a bullshit response but then I went over to the subway station and I saw the old holes where the rail was and they lifted it a few inches and drilled it in a little higher. Also,Many of the other handrails on the other staircases in that station had been raised to the appropriate height They didn't just fix the one I complained about they fixed them all. 

If you read this far do me a favor....  Next time you feel like screaming at the sky because you don't like the clouds go figure out who actually gets stuff done. Call the governmental agency and politely tell them they have a problem. Don't think they're not listening.

Nothing can hurt me now

 

On today's date 25 years ago i finished a marathon in 3 hours 58 minutes and 4 seconds. Then I wrote this on the proto-internet of 2000. What I didn't put into that early blog post was that I really had no choice at that point but to finish that race and under 4 hours. The Sri Chinmoy running folk organize the marathon once a month on Randall's Island and I had tried to break for hours and their February race but walked off the course at mile 20. In March of 2000 my wife was 7 months pregnant with our twins i knew my life was about to change. I knew there wouldn't be so much opportunity to trainAnd I didn't really know what my life was going to be like but if I was going to break for hours I had to do it the end of March in 2000Cuz the kids were born the beginning of May.

I know my life was going to become a roller coaster when I became a parent.  if I was ever going to break 4 hours I had to do it on March 26th, 2000. Nine of us walked back 0.2 miles on a perfectly flat 1 mile course on Randall's Island. I was able to leave my hydration on a table and take a gulp every mile. I wanted to run 9 minute miles consistently and the race director is knew that. After I finish my first mile and 8:30 they told me I ran an 8:30 and had 30 seconds in the bank. Another 8:30 and I had a whole minute in the bank.  When I ran a 9:30 mile at mile 20 they told me it was okay I still had 10 minutes in the bank.At mile 25 they told me I still had 2 minutes in the bank.I ran that mile like an Olympian. I knew I had 2 minutes to spare. I finished in just over 3 hours and 58 minutes and I laid down on the grass.All the other eight participants were waiting at the finish line for me. They all finished before me but they waited for me. And the two people who had to organize the race were there and the race director handed me a trophy that said congratulations your fourth in your age group.
 

After I finished this race I looked up the qualifying standards for the Boston Marathon. If I could break 4 hours again after I turned 60 years old I would qualify. I decided to make that my super long-term goal. Just stay healthy for another 20 years And then trained hard again and break 4 hours. At the time staying healthy sounds it easy and training hard again as a 58-year-old was the hard part.I had no idea what would happen to me in 2014. Staying healthy was taken off the table. 

They were people who thought I'd never walk again Let alone run. They all wrong. But the paralysis from Guillain-Barre syndrome didn't all go away. I need ankle braces so I don't turn my ankle on every step or just fall on my face. But I did come back and finish the New York City marathon in 2017 and then a bunch more So many that I lost track of how many marathons I have finished and I thought this would be a good moment to count them.

26 New York City Marathons including the two virtual races, one in 2020 and the other in 2012 when no one called it that because the marathon was canceled because of Sandy

27. The SRI CHINMOY MARATHON

28. a loop of Manhattan before I had GBS when you join Runners it's called a Corbitt

29. a loop of Manhattan after I had GBS when you do it with walkers it's called The Great Saunter

30. the Jersey Shore marathon

31. the Long Island Marathon

32. the Bob Potts marathon twice

34. The Run for the Red

35. the Broadway Ultra Society 6-hour pajama run

36. the frozen flamingo ultra marathon

37. a 50k in Prospect Park before I had GBS

38. a 50k in Prospect Park after I had GBS

39. The Brooklyn Marathon

40. the Berlin Marathon

41. a fundraising marathon around the reservoir in Central Park

42. The Brighton (UK) Marathon

That's 42 and 14 of them happened since I had GBS. Next week I'm going to Brighten England to run a full marathon and I'm not counting it until I finish it.

Numbers aren't important but they are. No matter what happens to me I'm always the guy who spent 7 years trying to break 4 in the marathon and succeeded. So training for races where the finish line was literally beyond the horizon prepared me for Guillain-Barre syndrome. And having recovered from Guillain-Barré syndrome has been great preparation for all the marathons and ultras I've been running lately. 

I'm also the guy who literally crawled out of a hospital bed and has since finished 10 more fucking marathons. I also ran up the steps of the Empire State Building. I got to look at that building from the hospital window while they were doing experimental chemotherapy on me.

I joke that it takes me twice as long now but I get to have twice as much fun but it really hurts twice as much head for twice as long.

So to summarize. Fuck you GBS and fuck the under-cooked chicken you rode in on. 

Not a complete waste of time

In a few weeks I'm going to be traveling to the United Kingdom and running a marathon in Brighton. I thought it would be cute of me to wear a t-shirt that says Brighton Beach Brooklyn when I got there. I can easily go online and buy one. But I thought it would be a little bit more authentic to actually buy it in Brighton Beach. This morning I had to be in that end of Brooklyn so I walked the length of Brighton Beach Avenue and found a lot of stores that sell a lot of cheap crap, some stores that sell expensive crap but I didn't find any stores that were selling crap that was appropriate for tourists. I could have gone over to the boardwalk but I was getting cold. I'll go back another day.

But while waiting for the Q train to get me home I looked up and saw this.

Thank you Brighton 6th Street.

This is why we can't have nice things

 685 1st Ave

We are not allowed to post on social media

 I have been a poll worker for about 7 years and working early voting for the last four of them. I started working early voting during the presidential primary in 2020. Back then people came to vote and Hazmat suits. Since then every election has really been a practice election for the presidential election of 2024.We actually had to do many of the things that we only read about in our manual. I worked the first 5 days of early voting at Brooklyn Borough Hall. About 95% of the time every table had a voter. Sometimes the line was an hour long but usually it was less than 5 minutes.At the end of each day a lot of the pull workers congratulated ourselves on how hard we worked and what a good job we did. Because we did.

We are not allowed to have beverages on the tables we work at. Even before the polls open and our computers are not on the tables. The polls opened at 8:00 a.m. and we were supposed to show up at 7:00 a.m. On the second day of early voting I showed up at 6:30 in the morning so I can have a cup of coffee before everything got started. As I was entering the Starbucks diagonally cross street from Borough Hall I noticed a very elderly woman with a walker talking to a police officer. In her hands was all the paperwork that you get in the mail to tell you about the election. Before I went into my get my coffee I asked her if she was here to vote. She said yes but she wasn't sure what time the polls opened or where to go. I looked at her paperwork and told her that I was a poll worker and that she's supposed to vote across the street but the polls don't open for 90 more minutes. She said She thought they opened at 6:00 a.m.. I said no that's unreal election day but if you wait for me to get my coffee I'll walk you to the door where you enter into. The cop made eye contact with me and thank me.

While for us to walk around the building and the building security had just unlocked the door. On the way there she apologized for her physical condition She told me she wasn't always like this She used to own a business and go skiing. She used to have friends. I told her that's all fine and today you're going to get to vote 

I used my Brooklyn voice to inform the Borough Hall police officers that this was the first voter to come in when the polls open at 8:00 a.m. and that she needed to sit inside on a chair. They heard me. When I went upstairs I told the line management crew that the first voter was already sitting inside. I thought that was the end of it.

At 7:59 a.m. my coordinator came running over to me and told me that the lady I had walked into the building would not come up the stairs without me.I jumped up and escorted her right up to my table so I could issue with her a ballot. I did that and walked her over to the accessible privacy booth so she can sit down and take her time with the ballot. Then I let the inspectors at the scanning machines know that she might need some help getting over to the machines. I told her that the men standing next to her would help her when it was time for her to actually cast her ballot. She looked right at me then and said "Thank you and I love you."

i'm told everyone in New York City who work the election in 2024 got this thing mailed to them. I happen to know why I got mine. 

Words matter

 

A few lifetimes ago I was a school administrator at a private for-profit job training program. I was the dean of students at a 600-hour training program that taught people how to record music.  I was also the first and only employee there that didn't have a background in the industry or in business. I had an MSW. One of the problems that I observed was that teachers were often scheduled to be in two classes at once. The teacher would announce to the class that they won't be teaching the next class a substitute would teach the class. So of course a lot of students just cut the class. But in reality it was a plan.Teachers double booked on a certain day when a different teacher was available who was actually better at teaching that subject than the original teacher. I suggested we stop using the word substitute teacher and replace it with specialist.

Attendance dramatically improved on these days. My boss was happy and she actually looked at me and told me that that's why she hired me. She needed someone that thought differently from the musicians and recording engineers and business people that worked there. I told her it was a no-brainer and she again reminded me that I was the only person with a sociology background in the building. Through my training and education I understood that what you call things matters. Words matter...

So now I have a Google search setup. A news alert to tell me if Guillain Barre Syndrome and New York City ever come up in the same news article. I really did it so that i might receive news of someone else getting this rare disease that is in my town. Once it said me a link to a obituary and I really wish I knew this person before he died. It is often irrelevant content. GBS could be mentioned in an article and there could be an ad for another article that contains the word New York. Like this article I looked at this morning. The article is only remotely about New York City contains the words Guillain Barre Syndrome in the signature box about the author. I remember hearing about Carl Goldman back at the beginning of Covid. He got Covid on a cruise and was one of the first Americans to have recover. He met with President Trump and was an example of how Covid wasn't a big deal. Much earlier in his life he had also had GBS.

ABOUT CARL GOLDMAN

Carl Goldman, along with his wife, Jeri repurchased KHTS AM-1220, Santa Clarita’s hometown station on October 24, 2003. They owned it from 1990-1998, and then sold it to Clear Channel Communication in 1998, buying it back from Clear Channel in 2003. Since then, they have rebuilt KHTS as a critical voice of the Valley. In 2015 the radio station moved to its new headquarters on Main Street in Old Town Newhall, in the original Newhall Hardware building. In 2018 an FM was added, 98.1, with its signal being simulcast with AM-1220. In January 2020, Carl and Jeri cruised on the Diamond Princess. Carl was one of the first Americans to come down with Covid-19. Months earlier he was impacted by Guillain Barre Syndrome as a result of a Shingles vaccine in September 2019. He is still in recovery from the vaccine.

Okay, according to the FDA up to six people per million might come down with GBS within 6 weeks of having the shingles vaccine. Six people per million above the background number of 10 to 20 per million people who are getting it anyway . In other words 10 to 20 people per million are getting GBS every year and 16 to 26 people per million are getting it within 6 weeks of the Shingles shot. Would have gotten GBS the same way I did or from some random reason rather than the recent triangle shot he had but we'll never know.  (And by the way I just got my first shingle shot last month. Both my neurologist and my GP told me that shingles could also trigger GBS and shingles really sucks)

But in his lights It says,"Months earlier he was impacted by Guillain Barre Syndrome as a result of a Shingles vaccine in September 2019. He is still in recovery from the vaccine."....  

"He is still in recovery from the vaccine"

I wonder why he chose those words? I would never say that I'm still recovering from food poisoning which is the most likely trigger of my GBS. I wonder how many people got shingles because He and others liked him said that this vaccine gave him GBS and he still recovering from the vaccine. Vaccine hesitancy is on the rise all over the world and people are starting to die from polio again . Words matter

10 years ago I couldn't walk without assistance. People said that I was wheelchair-bound. I thought that was weird. I wasn't tied to the wheelchair. In fact like many wheelchair users I was able to get up and walk a few steps almost the entire time I had a wheelchair.One of my friends said to me that she was never bound to her wheelchair except in the privacy of her bedroom with her spouse. That was funny. And when I said that it made people uncomfortable and then I looked at them and I said it's a tool not a prison. There are people out there who are hesitant about using a wheelchair because they'd be embarrassed because of phrases like wheelchair bound. I'm not eyeglassbound I just put them on as soon as I wake up in the morning.

.... so I was thinking. Instead of saying doing the dishes or doing the laundry, maybe we should say recycling the dishes or recycling the clothes. Think about it.

 

Apparently I am inspirational

I never signed up to be inspirational. It's not my job. It's too much pressure. But if people tell me I'm inspiring them I accept it because there's only two people I want to expire and those are my kids so if strangers and acquaintances tell me that inspirational I accept it as a compliment.

it all started with NYRR featuring me here. that triggered  this on News 12. 

That said the GBS Foundation asked me if it was okay if they referred me to a reporter from the New York Post.The reporter was very nice to me as was the photographer who I met separately. I was hesitant to talk to anyone from the post because they are a rag that made me look like a dirtbag 11 years ago. But here's the story as published in Microsoft News so you don't have to click on a Rupert Murdoch link.

then it seems someone at news radio 1010 wins read the post story about me and wanted to put me on the radio. That was pretty exciting because I was very busy this week as an inspector at  early voting location in Brooklyn Borough Hall.  i'm told that my pol site was featured in this news article but I was too busy to even know that the camera crew was in the room with me.  also there was a little piece of me that thought I was going to be live on the radio. I had a scheduled 3:30 phone call with the reporter and I felt pretty cool asking my boss to make sure I can have my lunch break at that time because I needed to be interviewed for the radio. But we spoke to for 15 minutes and it was recorded and it boiled down to this news story

I never heard of Wide Open Country, but apparently they have a writer who moved some of the words around in the post article and created this about me

and WNBC news gave me a call and showed up at the Achilles workout on Thursday evening and made this little clip.

or

And hey I just remembered before the Brooklyn half marathon news 12 featured me in this

Took some pictures on my run today

 Today was the disability pride parade that it was also two weeks before the New York City marathon. So I had to do two things. I had to march in the parade that started at 11:00 a.m. but I also had to get in some miles. So I left my house at 6:00 in the morning and ran to Madison Square Park.

It was still dark when I left my house. But by the time I got to The Manhattan Bridge the sun had risen. When I was about 2/3 of the way over the bridge I noticed a stripe across all of the buildings in the Alfred E Smith houses.  It took me a moment to realize the shadow of the bridge that I was on was being cast on buildings between half a mile and a mile away. To the left are two different views of this celestial event. 

It reminded me that about 20 years ago i woke up before Dawn to run to the start of a race in Central Park. I ran over the Brooklyn Bridge and noticed many many people sitting on the same side of the bridge looking north.Some look like they just woke up and some looked like they had been there all night. I stopped and asked them what they were looking at and they pointed at The Manhattan Bridge.the sun was low and shining on us. but I'm Manhattan bound train went over the Manhattan Bridge and it cast a shadow on us over on the Brooklyn Bridge. Everybody uploaded. I didn't stop and take a picture 

i also stopped to stop one more picture that's become kind of an iconic scene from the Manhattan Bridge. Apparently people keep cutting a hole in the fence so you get a great view of the world trade center. I didn't stop and take a picture in 1999 when I realized it was a great view of the Twin Towers so I stopped and took it today.

I continued my run up the west side of Manhattan. It was about 8:00 a.m. and I was approaching West 14th Street and to my left was Little Island. You can look at the Google for a lot of great pictures but when I got to the top I did take one picture because it might be 25 years before I go back.

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