Tuesday, October 10, 2023

Arlington and Washington!

Last week I did things. Well one big thing that had 4 different things in it.I got to spend a few hours playing tourist in Washington DC. I attended a conference in Arlington Virginia. Part of the conference was going to the capital and lobbying for a cause. I also went for a run. I will kind of talk about these things separately

I took a 5:00 a.m. train out of Moynihan Hall so I can get to Washington DC and have breakfast with one of my old high school friends. It was really great catching up. And it was great to get the advice of a local on how to spend half a day in Washington DC. I got a train pass that was good for the whole day and decided to get to the hotel first and check my bag. I had to take the Metro to a stop called Pentagon. I assumed that was the name of a neighborhood.But not so much. Going up the escalator it was made very clear if you went to the left without permission you would get in trouble.I should have taken picture but there was a sign that very clearly said don't take pictures.At the top of the escalator was a very serious fence and a guy holding a rifle.I went to the left to get a bus to my hotel. After I left my bag there I got back on the bus to the Metro and went to DC. Having gone to all the touristy history and science museums as a kid and with my kids, I decided to hang out with the art. I've learned that it isn't important to see everything in a museum. Especially in art museum. When I saw this piece I decided to sit down with it for a good half an hour. At first I thought it was something new. But it was created in 1967. I only later noticed that her name was similar to mine. We are not related

I also took the Washington Metro. It didn't go unnoticed that this was a mass transit system that was built

all at once relatively recently. It is completely accessible for people who are mobility impaired and can't climb stairs.That did not go unnoticed. But I noticed another thing and I'm going to be bringing this through the attention of the New York City MTA.... This Disability sign this sign says that Federal law requires that these seats be available to passions with disabilities.....  Below is the sign that is in New York City buses and subways. It says" won't you please give this seat to the elderly or disabled." these are two different kind of signs.In Washington DC it lets you know that you should not be sitting there unless you're really need the seat. It needs to be available to those who need it.In New York City it's kind of an invitation to plop down. People in New York aren't looking around when they're sitting in the subway. They are minding their own

business.Not looking out for people with disabilities who might need the seat.So it's going to be up to the disabled person to ask for the seat.This is not cool. I'm one of the people that gets to talk to the MTA about their accessibility issues. I'm putting this on the agenda that these signs should change. Also perhaps an announcement regularly on buses that says please move to the rear of the bus and don't sit in the front seat unless you really need to

On the second day of the conference I woke up at 4:00 in the morning. At 5:00 a.m. I got in an Uber to the Arlington Bridge. I ran over that bridge and it took me right to the back of the Lincoln Memorial. I went up the stairs and realized that this is one of those rare moments that I was completely alone in this iconic monument. I took a picture but you can Google a better picture of the Lincoln Memorial. And then I ran across the National Mall. Past the Washington Monument and all the way to the Capital. Then I doubled back and ran to the White House.To the right or some crappy pictures I took. I would point out that I ran as the sucrose and Washington was quite clean and I felt very safe.It was a five and a half mile run and here  my Strava

I should also mention that I got to visit the Capital Building.But I didn't go in as a tourist. I had an appointment to meet with the staff of my congressman. There were four or five of us who went in to see them and I was selected to talk first. My role was to introduce the staff to what Guillain-Barre syndrome is. How it can happen to anybody.Because I am anybody.And I happen to be the only anybody that was a constituent of Dan Goldman.I immediately went off my script. Because the staffer mentioned that she never heard of Guillain-Barre syndrome.And the first thing I said to her was how happy I was for her that she never heard of this terrible disease. She was lucky, I told her that I sincerely hope that she never hears of this illness again. Then I delivered my speech.I don't want to go into the details of my speech here because it wasn't even that important.But what I do want to say was that when I first walked into the office I was upset that the person who we are going to talk to was a child. That's kind of how I felt. At first I felt we were being disrespected because the staffer looked like a college student. But after we spoke I realized that my first impression was completely wrong.My actual impression was that I was really glad they sent us a young person.She was clearly as honored to be in the room with us as we were to be in the room with her.

The top photo in the photo collage shows my team. We are the group that wandered the halls of the capital in order to influence our leaders. We were actually only in the Rayburn office building which is physically connected to the capital. But we will polite and greeted appropriately.We did not storm the building.The colorful picture in the center is AOC.'s door It was cool I had to take a picture

The conference was fantastic. It's the third time I've been to the GBS/CIDP international biannual conference. The first time I went to San Diego. The second one was in Jacksonville and this one was in Arlington. It's great to meet people who have my rare condition and at this point I'm kind of the guy giving other people advice.I even met someone who is running marathons while living with Guillain-Barre syndrome.

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