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.

1 comment:

  1. Wait. . .so if you crawl your way down to the platform in an inaccessible station you're breaking a rule? What if it's an accessible-in-name-only station with a broken elevator?


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