I'm definitely pausing the distribution of any online petition at this point. After testifying before the MTA board yesterday the feedback I got was that this is going to be fixed.A high-level mucky muck came over to me right after I spoke to get more details about this issue so "it can be corrected". Also, on my way out of the building and assisted to a mucky muck told me that while I was speaking a lot of people in the room were already texting each other on how to fix this problem. (9/25/2018)
If you live in New York City you must be pretty familiar with Access A Ride Vans. Those big white and blue Ford diesel vans that drive people with disabilities all over the city. These vas basically exist because years ago the disabled people of New York sued the MTA because the world's largest subway system was built a long time ago and has a lot of stairs. It was cheaper to give disabled people door-to-door transportation then to make the system work for all the cities residents. With access ride disabled people are able to be picked up and brought anywhere in New York City for $2.75. That's the same price as a subway fare, but since we can't get on the subway we get to do it in a van.
Before I became disabled all I knew about it was that it's a thing that everyone who uses it complains about. Once I became dependent on it I honestly felt it wasn't that bad. Don't get me wrong, it has an enormous room for improvement but once I figured out how it works it wasn't the end of the world. In any case I became part of a pilot program where I was able to use the Curb app and make a yellow or green taxi appear within minutes and only pay $2.75.
All access ride customers are issued in access ride MetroCard it's good for four trips a day and no fare is collected. Here are all the details on that. It doesn't say why New Yorkers with a disability are issued a MetroCard that gives them free trips so it just leads me to speculate.
People with disabilities have good days and bad days and on a good day most of us would rather actually take the train or the bus. The MTA is helping some disabled people transition back to "normal".
AND /OR
Driving people around door-to-door in vans is very expensive. The MTA saves a lot of money when disabled people get on a bus or subway.
Either way I very happy to take mass transit on the days I've been able to climb stairs. Last year I misplaced my card (by "misplacing"I mean I thought I lost it, but eventually it turned up) and after I thought I looked everywhere I called the MTA and ask for replacement. They told me to get a postal money order for $10 and send and mail it to them. I thought this was a little archaic, but many of the other people who use access ride might not feel comfortable paying online, so I went down to the post office.. I got my card within a reasonable amount of time and moved on with life. Unfortunately, in the past year this happen two more times. The third time it happened I actually found my MetroCard before they sent me my replacement. I was pleasantly surprised to find that it still worked and as soon as I got off the subway I called the MTA and told them I found it. They told me I was lucky because if it would have been of turned it off I would've had to wait four months for the new one to be sent to me. I thought this was a bizarre rule but I was happy that I dodged the bullet. However, two days later my card stop working. I called access ride and they said no matter what anyone said as soon as I said it was lost it needed to be turned off and could not be turned back on I had to wait 120 days. Below, is the rule that explains that.
Q. Where do I report a lost or stolen AAR MetroCard?
A. Immediately report a lost or stolen card by calling AAR at 1-877-337-2017. NYC Transit will reissue lost or stolen cards at its discretion after receipt of a $10 replacement fee. After replacement of three or more lost or stolen cards, NYCT will impose a 120-day waiting period before reissuing another card. This waiting period will also be imposed for the replacement of any subsequent cards. Payments must be made in the form of a USPS® Postal Money Order payable to MTA New York City Transit and mailed to NYC Transit, Paratransit Division, Eligibility Unit, 130 Livingston Street, Brooklyn NY 11201.
I complained up and down the line that I felt I was being penalized for losing things.If I'm paying for the replacement why do I have to wait? I honestly gave up on having an exception made for me because I was okay waiting 120 days. I was able to use the Curb app and when I'm able to bus drivers always let me on the bus because the card I have is not expired. Also, the staff at subway stations (including the police) open the gate for me when I show them my valid card. So, and by complaining about this policy I made it clear I wasn't asking for an exception I was asking for a change in the rule because not everyone who is disabled is going to feel that they could ask for help from the bus drivers and the subway staff to aid them in transportation needs. I really got nowhere with this complaining. Everyone thought I was trying to ask for an exception and reminding me that these were the rules.
I also lost my drivers license. Not that I drive anymore, but it was the enhanced federal version of the New York State drivers license. It was the type of card that can get me across the border into Canada or onto an airplane. I called the DMV and all I had to do was give them my credit card number and let them take about $21 for my account and I got a new one mailed to me. No trip to the post office no waiting 120 days if I lost it more than twice.
Then it occurred to me that friend uses her credit card to refill her MetroCard at a vending machine and so do hundreds of thousands of people on a regular basis. If she were to lose her card she can report it to the MTA and get a prorated refund. Here's the website it doesn't say anything about paying for replacement card or waiting 120 days if it happens more than twice.The first time you make a claim there is no charge. The second time there is a five dollar charge. The MTA will only efix your card twice a year.
And then there's the program where your credit card is automatically billed to your MetroCard works forever (or until the piece of plastic expires and then they send you a new one). Below are the details on that.
Q. What if my EasyPayXpress MetroCard is lost or stolen?
A. You must immediately report your EasyPay MetroCard lost or stolen online at www.easypaymetrocard.com or call our Automated Telephone Service 24/7 at1-877-323-RIDE (7433). We will deactivate your card to protect you from unauthorized charges. Failure to report your MetroCard lost or stolen may result in unauthorized fares which you will be responsible for. You will not be liable for unauthorized EasyPay MetroCard use that occurs AFTER you notify EasyPay MetroCard, electronically, verbally or in writing, of non-operation, loss, theft or possible unauthorized use. We will send you a replacement card in the mail. Please allow 15 business days for processing.
So here's the thing. Speaking for myself I can definitely say that people with disabilities are more likely to lose things than the general population. My disability affects my hands the most. I often drop things without knowing it. I've been hanging out with a lot of people with disabilities lately visual impairments and other cognitive issues. I'm pretty sure researches been done the disabled people or more likely to misplace things than the general population.
So why is there a trip to the post office and a 120 waiting period when a person with a disability needs to replace their MetroCard and all a person in the general population has to do is pick up the phone?
It was a Tuesday. Most people are forgetting it was election day here in NYC. It would be easy to forget even if it were not canceled It was a primary that everyone knew was gonna result in a runoff for Mayor. Giuliani (thank God) had reached his term limit so Bloomberg and Wiener were fighting it out. Isn't it funny to look back..... Bloomberg won and proceeded to crown himself King and extend his term, a thing Giuliani would have liked in 2001. And where is Wiener now? Hiding somewhere because he showed his wiener on twitter. I have just been informed that the 2001 Democratic Primary for the Mayor of NYC was a fight between Mark Green and Fernando Ferrer. Wiener ran for Mayor in 2005. Bloomberg was a Repubican in 2001. So I got everything totally effed up.
But I digress.....
My polling place was (as usual) chaotic. I did not know it then but it was the second of three places I would be assigned to vote without actually changing my address. I think they divided up the neighborhood into voting sectors before they put two large apartment building on my block .... in 1916. That year they assigned me to vote in PS 321. It didn't even occur to me in 2001 that from 2005 to 2011 that would be my kids school... That I would go on to teach an after school class in that gym. My kids were babies, I was not even thinking about kindergarten.
So voting always meant long lines and friendly interactions with my neighbors. I remember starting up some friendly banter with the man next to me on line. A well dressed, really tall African-American who said "You think you got a problem, I am a Republican. I'll bet they don't even have my ballot up there." A Republican primary in NYC? Who ever heard of such a thing??
So I cast my vote and randomly chose a direction to get to the subway to work.
I will not talk about the rest of September 11, 2001. I am sure that millions of people are ready to share their stories with the world. I am not even ready to share that day with my children. I will just say that I was not a hero nor did I attend any funerals. But still my hands are trembling now.
So, about 9 years later I am chaperoning a class trip to Plymouth Church. Sitting next to me is my friend Ino. He is one of the other Dads in the neighborhood who has the luxury of getting to go on his children's class trips.
When our tour ends our wonderful guide took questions. After all the kids got their questions answered Ino raises his hand and asks (Is this really a question?,) "Wasn't Lincoln a Republican, how come everyone forgets that it was a Republican who freed the slaves?"
I punched him in the ribs and told him to shut up.
Then I realized that I have know him since before our children started kindergarten together.
Sometimes, just sometimes I like to think of September 11, 2001 as the day I made a Republican friend.
Over the past few weeks I've had the displeasure of either arriving at LaGuardia's Terminal C/D or picking someone up there. Everybody's been freaking out about traffic congestion because of the complete rebuilding of the airport. But I didn't find that so bad. The problem I noticed is that when I walked out of the door at arrivals I was gagging on cigarette smoke.
Yesterday I got there a little early to pick up my daughter. I noticed people in various uniforms smoking all over the place. The people who I would expect to enforce the no smoking regulations were smoking right next to the signs that said no smoking. I didn't take their pictures for fear of activating aTSA nightmare. But I did take this picture.
Why does LaGuardia Airport smell like an ashtray?
Why are there ashtrays right underneath the no smoking signs?
Why are the people who work there ignoring the rules instead of enforcing them??
This photo is from the June 10th, 2002 edition of the Park Slope Courier. I forgot the picture was taken till I saw a stack of these papers in the lobby of a bank. I almost fell over when I saw my picture out of the corner of my eye
The race was a few days earlier on June 7, it happened to be my 39th birthday.
I remember changing the kids diapers on the roof of that stroller. They were 13 months old.They are in college now.
I pushed those kids a lot. I did hundreds of laps of Prospect Park with them in the stroller. I would bring apples. One only like to eat the outside the other only the inside. So they would share them one starting the apple and eating all the skin the other finishing it down to the core.
Often, I push them down to the Brooklyn Bridge, go over it, cross Manhattan at Warren Street, at the Hudson River I would make a left turn, then back up on the Brooklyn Bridge to go home. A lot of tourists took a picture.
One fall I needed to do some big mileage. When I got to the west side of Manhattan I said to the kids "Let's go see where big bird lives" we made a right turn at the Hudson River and headed up the brand-new parks to 59th St. and then I started to do a loop of Central Park. I hit the wall going up Cat Hill and thought I was going to die on the Harlem Hills. They were doing construction on the Westside subways so to go home I had to take stairs. Two downs and up. I didn't know that was going to be the last time I ever pushed them.
So my advice to parents who want to push their kids a lot is do it until they are potty trained. It's easy to find a place to change a diaper. Once the potty trained starts finding a bathroom can be a little bit more challenging.
And hey, while I have your attention, if you see a parent pushing a stroller don't make jokes about how those roles will one day be reversed.
It was almost 4 1/2 years ago, and I remember it very clearly, because I was lying in a hospital bed.... Nicholas came back from his orientation that he had to attend before starting to volunteer at the Prospect Park Zoo. He was very excited.
"It's a tiered program. If I stay long enough they might let me narrate the sea lion show"
I might go back again today and recorded again, holding the camera the correct way
June 22, 2018
It finally happened. (No, we all knew they were going to graduate) Today there was an unresolvable conflict. Nicholas graduated from the Harbor school on Governors Island at 11:30 in the morning and Sabrina's graduation from LaGuardia began at 12:30 and David Geffen Hall in Lincoln Center. I went with my mother-in-law to Lincoln Center and my wife (who actually made it to an 8 AM work meeting) watch Nicholas graduate on Governors Island. Then Stephanie and Nicholas met us at Lincoln Center so we all can go out to lunch together.
I'm glad my wife beat me to it and raised a water glass for a toast at lunch because I was thinking about it all morning.
I was worried that if I raise the glass and started to talk I would totally lose my mind. Four years ago I couldn't lift my hands off the arms of my wheelchair. I literally couldn't wrap my mind around actually holding a glass. I remember watching people do it and I didn't know how they did it.
I didn't want to make a toast that was about me on their graduation day. I just want to let them know how glad I am that I didn't die four years ago.
Updated for Sabrina May 12th 2018
Yesterday was exciting but it turned out only to be a warm-up for today. Yesterday I got to see Sabrina's senior showcase at her high school. To the left is a wide shot of the whole thing and you can click here for an album containing all the images.
But today was really exciting. Today one of Sabrina's pieces was on exhibit in a Brooklyn gallery. To the right is the flyer for the event. Yep, that's Sabrina's work! Check it out. Today through June 9th. What About Us? Sponsored by ArtsConnection and the Dedalus Foundation. 254 36 Street between second and third avenues in Sunset Park Industry City, Brooklyn. https://teens.artsconnection.org/tct/
Pride is an understatement. So many people were congratulating her, thanking her for a painting and for the description that went with it.
Alright, I got my hand out of the splint and I could use a computer mouse again. So before I start talking about my accomplishments, let me tell you about my kids.
You may or may not know that I have twins who are now high school seniors. And wow, has high school changed a lot in New York City in the past 30 years. I went to Sheepshead Bay high school because it was the school closest to my home. It was the 70s. We sat on radiators because there weren't enough desks. The teachers and security guards were our drug dealers. Being mugged in the hallway on the way to the bathroom was taken for granted. I survived. Four years ago my kids got to choose which high school they would go to. It was a frustrating process but the outcome was wonderful.
My daughter is winding down her experience at LaGuardia high school. Officially called The
Fiorello H. Laguardia High School Of Music Art and Performing Arts, unofficially called "the school they made the movie Fame about". It is also the school people think when they receive their Tony, Oscar or Grammy. She's not in the drama or vocal departments Her program is art. And she made this self-portrait. It was part of an art exchange program. She got to see a performance of Dear Evan Hansen and the star of the show got to have her art hanging in his dressing room.
When my kids was still in fifth grade I got my first paid gig helping organize a running race. It happened to be on New York's Governors Island. A New York City public high school just opened on the island and the kids were the bulk of the volunteers at the race. Part of my job was to supervise them and I was kinda nervous because I wasn't used to dealing with teenagers, my kids were only eight years old. But they were amazing. They all were on the super early ferryboat and did everything they had to do from filling water cops and keeping them from blowing into the harbor to picking up the ones that didn't make it to the garbage pails. My kids was still three years away from choosing high schools but I asked these Harbor School students what they thought of their high school. "My kids are still in fifth grade but should they go to the school?" Their enthusiasm was remarkable. They jumped up and down telling me how excited they would be if my kids would join them. And that attending their school was the greatest decision we ever made.
So for the next 2 1/2 years I kept the idea of choosing the Urban Assembly New York Harbor School as a choice for my kids. And it turned out to be an excellent fit for Nicholas. Because he attended the Harbor school he got a chance to present his work at the New York City science and engineering fair. He can do it better than me but let me try to explain what his project is about..
http://nycsef.cuny.edu/
Using the scientific method he has been experimenting with different types and different shapes of concrete that can be used to build the seawall that surrounds New York City. He has been supervising the people who pilot and maintain small boats that his scuba team traveled on to place samples of concrete around the perimeter of Manhattan Island. Using underwater cameras or by retrieving the samples he has been determining which samples of concrete will attract the most sea life and last the longest.(I know you can't read Nicholas's poster board here is a link to the document on Google drive so you can zoom in.) So, he is basically trying to figure out how to improve the perimeter of Manhattan Island so that more sea life will be attracted to it. The sea life will help clean the water. (Nicholas, please improve my description of your life's work in the comment section below)
We are waiting for all the acceptances/offers and then decisions get made. But, wow check out this email one of my kids just got,
Dear xxxxxx, Following the recent tragic shooting at Marjory Stoneman Douglas High School in Parkland, Florida, students across the country have rallied together to advocate for change in gun control policies in an effort to prevent future mass shootings. Some high schools have stated that students who peacefully demonstrate through walkouts and other non-violent forms of protest may face discipline and even possible suspension.
We want to remind our prospective students and our current community that xxxxxx was founded on the belief that courageous public discourse fosters a just and thriving world. With that in mind, Xxxxx will not rescind admissions offers to prospective students who face discipline for peaceable protest. As is our practice, we would ask that students let us know if they have been found responsible for a disciplinary violation. However, to reiterate, given that thoughtful dialogue and civil, civic discourse are central to our institution, disciplinary violations for peaceful demonstrations or walkouts will not jeopardize a student’s admission to Xxxxx .
Best,
XXXXXX
Vice President of Enrollment Services and Dean of Admissions
You were diagnosed with a severe case of Guillain-Barré (GBS) syndrome in May 2014. Up until then you had run 29 marathons. How did running help you recover? I knew I wanted to run again, and that gave me a goal to work toward. I wasn't able to participate in the New York City Marathon in November 2014—I was still in a wheelchair—so I set my sights on 2015. By the next summer, I had moved from the wheelchair to a walker and was able to complete a 5K race with the walker. By 2016, I was walking unaided and started running half-marathons with an eye toward the New York City Marathon in November. Then, in mid-September, I stepped in a hole and broke my foot.
Photograph by Marius Bugge
How did you come back from a broken foot? I was about to let my home health aide go when the accident happened. The doctors put me in a boot, which I was only allowed to take off when sleeping and showering. Since I needed help with that, I kept the aide on longer. By December 2016 I was out of the boot, taking longer and longer walks, and had rejoined a gym. Less than a year later, I was at the start of the New York City Marathon.
How did the 2017 New York City Marathon differ from previous races? This time I was part of Achilles International, an organization that supports athletes with disabilities. My teenage son was one of my guides. Our group started at 8:52 a.m.—an hour before any of the other runners. My goal was to cross the finish line before race officials took the clock away at 7:30 p.m. Even after falling at the 15-mile mark, I finished in nine hours and 52 minutes. In previous years, I was the guy who ran the marathon in five hours or less.
Are there any other activities that have helped? I got involved with the GBS/CIDP Foundation (http://GBS-CIDP.org ) and became its liaison with newly diagnosed patients in Brooklyn, Queens, and Long Island. As a liaison, I hold annual meetings at a YMCA near me. We tell our stories and listen to others. There's a lot of empathy in the room.
How did your diagnosis affect your family? My twins were in eighth grade when this happened and I was the stay-at-home dad. Overnight, I went from the caregiver to the guy who needed care. My kids had to step up and pitch in. GBS was a big disruption to their lives, but they were cool about it. My wife was 100 percent supportive. The whole time I was in the hospital, she worked remotely from the window sill in my room.
How's your health today? My neurologist says I've probably healed as much as I'm going to, but I still walk funny. I also have severe foot drop, and I can't lift my wrists when my hands are facing down.
What keeps you positive and motivated? I try to live by the words of Arthur Ashe: “Start where you are, use what you have, do what you can.”
Back in my college days I squeezed into my car with two buddies and drove out to see The West. Before the trip I bought myself a brand-new camera. I got the newest Kodak products; The disk camera. I knew so little about photography that I remember asking the guy in the RadioShack where I bought it if they took color pictures.
When I got home and paid to have the pictures developed I looked at them and probably threw the all away. What crap! I regretted wasting my time fiddling with the camera and not simply buying a postcard. The best picture would've been a picture of me throwing that this camera into the Grand Canyon. I also later figured out that years after a vacation you aren't really gonna want to look at the scenery again. You going to want to look at the pictures of the people you spent time with.
So fast forward to today. I do still spend a lot of time in really pretty places. I happen to spend a lot of time with my good friend Larry was a retired professional photographer. I let him take the pictures because they come out like this. Here is the rest of that album.
Here's my version of the same spot a moment later.
It seems like many lifetimes ago but it was really 20 years ago when I was trying to break four hours in the marathon. I did everything that I thought I could do. I learned about my body and how I handle hydration and nutrition while running. I was a regular at the gym and I had coaches. The coaches simply taught me two things that if I wanted to run a marathon faster I had to get myself acustom to running longer distances regularly and get used to running faster. Then just combine these skills on race day. One day I was out on the track with the coach and he had me running 90 second quarter miles and then a 90 second rest and then repeat 10 times.
I was without a doubt pushing my body to its maximum and in order to distract myself from the wonderful suffering this was causing. I did what many other athletes do during this kind of training. I did math. Yeah, it might sound a little kooky but I dod math in your head to distract youtself from the pain and suffering. First I figured out how fast my marathon would be at the pace I was sprinting at. A minute and a half around the outdoor track would get me a six minute mile. A six minute mile would get me close to 2 1/2 hours in the marathon. Not close to the winners times all below 2;10. Yeah, the entire men's league pack in the New York City Marathon were banging out five minute miles with occasional bursts of speed considerably faster.
Running a mile in five minutes means running 4 consecutive quarters at one minute and 15 seconds each. I realized I couldn't do that once and the guys who run the New York City Marathon would doing it 105 times without stopping. Yeah, these guys can run hundred and five consecutive quarters faster than I can run one. After the workout I asked the coach to check my math. My math was right. I couldn't keep up with the lead pack in the New York City Marathon for a run around a city block. The coaches next response could've gone into different directions. He could've said something that would've made me give up and running altogether. Instead he went the other way, "Isn't it humbling".
Eventually I did break four hours in the marathon. I didn't do it in one of those urban mega races like the New York City Marathon nor in some destination race through some beautiful wooded countryside. I found a flat as a pancake 1 mile loop marathon organized by the Shi Chimnoy running club Shi Chimnoy was a person who believed that the path to spiritual enlightenment was found through physical fitness. Specifically, endurance athletics. His disciples organized endurance athletic events, like marathons. They organized a marathon monthly on Randall's Island. It was the winter 2000 and my kids were going to be born in May I realize that if I didn't break four hours before they were born then it probably wasn't going to get to happen.
I showed up for the race in February with the idea of seeing what it was like to run nine minute miles and if I can get up to 20 miles and fetl like I had six more nine minute miles in me I was gonna go for it. If I didn't feel like I had it in me I was going to walk off the course and try again in a month. And that's what I did. The end of March in the year 2000 I went back to Randall's Island and was one of nine athletes to put their toes up to the starting line. Two dropped out the other six were much faster than me but they were all there when I finished my 25th lap and was told that I can run the next mile in 11 minutes if I wanted and would still break four hours. I remember laying on the grass and and watching them pack up the clock which still hadn't gotten to four hours and seeing my wife's stomach you with our twins in it. The site was poetic because I knew I was moving on having completed the quest of breaking four hours to my new job which was about the start as being a parent
"Congratulations, you were forth* in your age group." "But I was last" "Sir, I said, "\congratulations you were forth in your age group"'
*That's how it spelled on the trophy, I love it.
Yesterday morning I found myself in the middle of Queens with a little time on my hands and having just seen the premier of a film called 3100 I decided to see how far it was to Thomas Edison High School. It was already 90° but I was less than 2 miles away. I figured if a bunch of people are running 3100 miles the least I can do is walk a couple of miles to give them some support.
The walk was through parts of Queens that I've never been to. So, I was really relying on my GPS to get me to where I wanted to go. It had told me I had arrived but I was still really a block away and kept looking forward. Then I looked up and realized I was across the street from my goal because I saw someone slowly running on the sidewalk. I knew all I had to do was follow her around the block and I get to the place where the runners start/finish/sleep/eat.
But I was a little frozen. I couldn't bring myself to cross the street yet. I couldn't bring myself to walk on that sidewalk. These people were in the middle of a race that would be 6200 times around this half-mile block. For a moment I understood the purpose of the run. They weren't just running, they were performing a meditation. They were bringing themselves a little bit closer to holiness. How can I walk on the same sidewalk as them?
I'm posting this picture because it has a picture of a turtle. Because in the GBS world it represents slow steady motion. Here, it represented immortality
But then I realized of all the things these people are doing they wouldn't want one of them to be stopping me from walking on the sidewalk with them. So I did, and never have I been more careful to not get in anyone's way. I took some pictures and hung around for a while. What the pictures don't show is how quiet it was. There were 10 runners and about twice that many people there to help them. They were also busy and also quiet.
Yes, that's means what you think it means. As of day 15 10 runners have completed between 1.022 and 819 miles
I didn't want to get in the way or even break the silence. I found a spot and watched everything with awe. One of the race directors the silence and made eye contact with me. He said, "Isn't it humbling." It was the same words my coach used when I compared myself to those world-class marathoners. But it was also the same voice of the man who gave me that trophy more than 18 years ago on Randall's Island.
I was starstruck and couldn't bring up the fact that we had met earlier. I just found a way to make some small talk and asked him if the high school kids getting out of school interfere with the race when it starts in June. He told me that interfere isn't the word he would use to describe it just that the students provide a different atmosphere for the race.
It was a long time ago. About three and years ago. Butthe words are bouncing around my head a lot right now. She said, "Get used to it."
I was not allowed to make an appointment with the wheelchair clinic until I came home from the hospital. Then I had a wait a few months to actually see someone would help me get a powered electrical wheelchair. That was all really screwed up because when I came home from the hospital I was in a loaner chair that needed me to make it move with my hands and arms. Yeah, when I came home from the hospital I couldn't lift my hands to hold a fork let alone push a wheelchair by its spokes.
When I finally went to pick up the chair the occupational therapist and the salesperson from the wheelchair company wanted to make sure it fit just right. She told me that insurance wouldn't buy me another one after this and that I should make sure this one works well because I would have it forever. "Get used to it". What the fuck! When I came home from the hospital I couldn't stand without help. But now, a few months later when I'm picking up his wheelchair I can get around a little bit in the house with a walker. I couldn't figure out why she was telling me to get used to it, I was getting better! In my head she wasn't talking to me, she was talking to the thing that was temporarily occupying my body. I knew this wheelchair thing was temporary! I can't comment that Occupational Therapy office because I knew I needed that powered wheelchair to get me through the nextchunk of time. She wasn't talking to me
Today, I can't tell you where the wheelchair is now.
But I can tell you that since being told to get used to it I've walked marathons. Marathons within S. But honestly my joy of finishing these marathons is slightly overshadowed by the sadness that I know that there are people who do have to use these things forever. But I am a little bit happy knowing that at least one guy that has the working wheelchair that he needs.
October 2017...
GBS literally knocked me off my feet back in May 2014. At that point I had finished 29 marathons, three of them actually being distances longer than 26.2 miles. Marathon running was how I defined myself. I was the guy you like to run to marathon the year. Most of my friends will long-distance runners and my part-time job was all about road races.
In a little more than two weeks I'll be starting the New York City Marathon. It's going to be really hard, in the past couple of months I've completed 18 miles once and 13 miles three times. Whether you're healthy or recovering from a rare disease marathon training is actually harder than the marathon itself. I'm not really sure if I'm ever going to be able to prepare for this distance again.
What I don't need our people asking me if my disease is affecting my cognitive ability and telling me I could be making a grave mistake by attempting to run a marathon. What I also don't need is to be told that I could always stop and take a cab home because they'll be other marathons. Needs
There might not be other marathons. I might not ever be in this physical shape again. The likelihood of me falling while training might be too high to try to do this again. I don't need people to tell me it's okay to quit. That's why my son is going to be my official "Achilles guide" during this marathon. I told him to treat me like Dumbledore told Harry to treat him. I can stop and rest but I have to drink every drop, complete every mile.
September 2017...
I had to see a new doctor that was totally unrelated to my neuropathy, , And optometrist. He was recommended by the same doctor who saved my life so I thought it would be a good thing. Anyway, I didn't want to go to back to a place that sells eyeglasses to see if I needed new eyeglasses. The doctor was cool, and he made the standard smalltalk while he was examining me... "What you do for a living?" I told him that a long time ago I was a school administrator but more recently I used to help organize running races. But I can't do that anymore, I mostly sitting home collecting disability. Then I made sure he noticed my hands, all crooked from the nerve damaged and thinned from atrophy. He said, "Oh, I noticed your hands. But, I saw you in the waiting room you able to use your phone. You get a job picking away at a computer keyboard somewhere." It wasn't until I saw the video below that I realized what a fucking ass that doctor. was. By the way, it was exactly 3 years and four months ago that I walked into my doctor's office.
Update, May 2017
"Where there is a will there is a way" This irks me in so many ways. In the context in which it was sent to me the person didn't even understand that I wasn't sure whether or not I wanted to even do the thing we were talking about. I wasn't sure it was worth any effort, not to mention this infinite effort implied by this overused phrase.
But when someone says, "where there's a will there's a way" to someone with a disability that they may or may not understand it just shows a complete lack of sensitivity to what a disabled person may or may not be able to do. Just because you saw a video of a guy with no arms and legs pulling a locomotive across Tasmania doesn't mean that a guy who has nerve damage in his hands should be able to operate a motor vehicle on public roadways. Or if you read about a woman who can't see, hear or speak but routinely saves lives at her job as a lifeguard doesn't mean I should go back to work on loading a truck.Anyway, these people are circus acts. And really, just because someone ran a marathon in 2:10 minutes doesn't mean that anyone could do that if they just tried harder.
So please think before you open your mouth. If you tell a disabled person "where there's a will there's a way" what they're hearing is "You are a loser if you don't achieve my definition of success for you".
Update April, 2017
So it's been almost 3 years and I've accepted the fact that my gate is less than perfect. I walk funny. A little like Frankenstein or a zombie. My arms don't swing the way yours do, but the big problem is I don't really lift my toe as my foot is hitting the ground. I don't land on my heel, my whole foot hits the ground at once. You don't have to announce to the world that you can hear me coming. Everybody knows that, ass hole.
Update November 2016
Okay, I really have to vent here. Because I mostly kept my mouth shut. But this doesn't really have anything to do with how to treat people whose lives were changed because of illness. This is about how to act in front of someone who's disabled, specifically using a wheelchair. For now, and just for longer trips I'm using my wheelchair again because I broke my foot.
It's hard to be in a wheelchair, especially if you thought that part of your life was permanently behind you. So I'm trying desperately to hold on to the little pieces of my life that I have regained since getting out of a wheelchair.... My running club organizes an easy run of the last 10 miles of the New York City Marathon course one week before the race. I was on my way to participating in this race when my foot broke, so for me the glory of the marathon will come next year. But I realized that I can still help out my club by using my wheelchair to go behind all the runners and make sure everyone finds their way from the 16 mile mark to Tavern on the Green and Central Park.
Emotionally, it wasn't very easy for me to decide to do this in a wheelchair but I put my big boy pants on and showed up. And then it wasn't too bad I was able to keep the wheelchair going at a steady pace and keep up with the back of the pack. I felt like I was doing a good thing and I know next year I'll be back on my feet. After a couple miles up First Avenue we had to detour a little bit around a construction site. A construction worker looked at me and said " That's cheating," and I heard another one say, "Ccan I write on your lap?." I replied, and they heard me, "that's not even a little bit funny."
But here's what I wanted to say.
Fuck you, fuck you, fuck you! Can you fucking imagine how every molecule of my body would rather be running?! Who are you, fucking Donald Trump?
Now go up to the third floor of that building you should be building and jump off the fuckin' ledge. Break your back so you children have to change your fucking diaper.
I feel little better now
Update October 2016 This isn't the worst thing, and I get it from people who really care about me. It's been two years and five months since I was completely paralyzed, and I've gotten a lot better. But I have come to grips with the fact that I'm never gonna be the guy who can hold his fork with just three fingers. In fact, I have accepted the fact that I will always need to use some special contraption in order to pick up a fork or spoon. I actually find it easier to rest a sandwich on the top of my right hand and hold it stable with a finger from my left hand as I aim it towards my mouth. So if we go out to lunch together be prepared for a little bit of a mess. It's okay, when I'm home alone and want something to eat it's a lot messier. Yeah, I can deal with the fact that my hands will never work like yours. But it's a little distracting to sit across the table from someone who looks at me like it's the end of the world to them .
Update June 2006
A couple weeks ago I finished the Brooklyn Half Marathon. I'm getting a lot of congratulations from people who know me and even strangers. They ask what's next and I told him I plan on completing the New York City Marathon. Some people don't know what a marathon really is, so I tell them. Then they look at me kind of crazy and say something like, "Oh, have you done that before?" I respond, "yeah, before this crap happen to me I was preparing for my 30th marathon and this will be my 20th New York City Marathon. Ironically, the last New York City Marathon that I ran I was a pace team leader, and held up a sign that said 'five hours run with me'. This year, I'll be competing as an Achilles Athlete, that means I will have guides assigned to help me."
Then they look at me and tell me that I will run a five hour marathon again or I will be a pacer again. I smile and say something like, yeah... One step at a time. But what the fuck, do they have any idea of the difference between walking the marathon distance in 10 hours and training to run it in five hours or less. NO! Or, do they know something my doctors don't. I don't get it when people just open their mouths and tell me what I will do it again. Do these people know that I can't use a porta-a-potty without help? It doesn't make me feel better when people just open their mouths and say what they think is nice. The doctors, the best doctors in the world, don't know how much more healing is in me. It doesn't make me feel better to fantasize about what I might do. If you want to make me feel better, just acknowledge how far I've come.
The lawyers make us say certain things to protect stupid people from themselves. "Past performance does not guarantee future results." Unless you really know something that my doctors don't you should keep your mouth shut.
Update April 2016 If you are the person who spent their entire life minimizing the time you spend off the couch and now you can barely do your daily activities because your knees won't hold up your excessive weight, don't tell me to rest.
I spent four months in the hospital where I couldn't even roll over in bed, I rested enough. For another year people applauded me because I can stand up, I rested enough.
Now when people tell me the rest it just makes me want to run further.
Don't tell me to rest Update March 2016 I haven't used a wheelchair in many months nor a cane in a few weeks. Sometimes I see strangers on a bus or in the park using the same kind of equipment I used to have or in a similar wheelchair. It's hard to figure out what to say. At one of the races I helped organize, a husband pushed his wife around Prospect Park, in the type of wheelchair I used to hate, one that was uncomfortable even for sitting and torturous while being pushed over bumps. I 'ran' over to her and told her that I used to be pushed around one of those and now look at me. "I can walk". She said "no my condition is different I'm never getting out of this chair...." I met well, really. But I realized the most supportive kind of statement isn't always that supportive. It might just remind people of things they just don't want to think about all the time.
I also should mention I have joined the Achilles Running club for a lot of their runs. I've had the pleasure of meeting lots of people with disparate disabilities. I consciously did not say "see you later" as a way of saying goodbye to blind people. But I listened to them and realized that they were saying "see you later" to people all the time. I also learned that people who I just are blind are not always totally blind. There are many degrees of visual impairment. After one of our runs we took a breather in a playground where my kids used to play. The guide who was helping my new visually impaired friend helped her walk around all of the playground equipment so she can touch it and know what I was talking about. Then she took out her phone and started taking pictures of the slides and ramps. She said she was going to go home upload them to our large screen so she could see what we were talking about. I had no idea....
Yesterday, I attended a big family function where I saw a lot of people who haven't seen me in a long time. They were really happy to see how far I've come. Some of them hadn't seen me since I've been sick and only heard that I was paralyzed. The question I wasasked me was, "Are you going to fully recover?" Or "How long will it be until you're fully recovered". I know, I know they really ment well. They saw how far I came and were excited about my recovery. My answer was vague, "If I can recover as much in the next 20 months as I did in the last 20 months I'll be very happy." But deep in the pit of my stomach, I really didn't like being reminded that I'm never going to be the same again. Update January 2016 Included in the doctor's letters that they wrote for my disability insurance includes the statement, "the patient does not suffer from any psychological or cognitive impairments." The following two statements come under that category.
A friend asked me if I needed any help getting out of the car. I said, "No I'm fine." When I was getting out of the car his hands are all over me. Dude, you asked me a question and I answered it. Why did you ask it, if you're not gonna follow my instructions
another person thought it would be a good idea if I went to a certain meeting. Then he called me back and said it wasn't that important because of my condition. My condition does not stop me from making that decision for myself.
Here's the big picture. If I need help, I'll ask for it. Please don't make a big deal out of what you think I can and can't do. I don't know what I can and can't do so what makes you think you know?
Update December 2015 I just realized the same crap came out of this one person's mouth in just one week.
He said he didn't know where to sit in the car because he had to figure out where the "cripple" would sit.
He was surprised that I walked to a party that was a mile from my house. He said, "Did it take you three hours to get here."
I don't have enough strength in my hands to hold onto a pencil. He reached out to shake my hand and when I shook as he said, " Ack, you should shake like a man."
BTW, this was a grown man.
Update August 16, 2015
In one breath someone called me a gimp, and the next breath he said I might be too drunk to drive you can come with me you couldn't get any more fucked up. If I thought he was too drunk to drive I would've gotten the car, and I would've forgotten he said that. Update July 29, 2015 Don't make jokes that you wish you had a wheelchair. Don't fain envy. Don't tell me you want to sit on my lap. Not remotely funny! And I have to clamp a thing onto my hands so I can hold a fork. Don't look at it and say I wish I had one. No you fuckin don't!
Update May 23, 2015 Last night I was reminded that Tom Cruise is a good actor. He played Ron Kovic in Born on the Fourth of July. That scene where he came home from the VA hospital in wheelchair His face as everyone told him he looked good. I cried inside. Update, May 3, 2015 This is something that's been done by a lot of people who I really care for. Just because of sitting in a wheelchair and my back is to you and I don't know you're there doesn't mean you could tap me on the head. I hear fine if you say my name turnaround. Update, March 16, 2015: The worst thing you can do if you see someone you think you know and suddenly in a wheelchair is to look away. Yeah, I'm the guy who helped to you unload a truck at the food co-op, or I might be the guy you ran all of the Park with, or I might be the guy who just cheered for you when you ran a race. I am still the same guy!!! You can say hello!!!
I know a lot of you people might be shocked to see me in a wheelchair. But please engage the brain before you open your mouth
.
- Well, this might not have happened to you if you didn't push yourself so hard with all that running
Actually I probably would have been a lot worse off or even dead if I wasn't fit when this happen to me.
- Is disability temporary or permanent?
It depends how long I live and go fuck yourself.
- I know someone who has something like what you have.
No you don't, you don't even know what I have.
- I just remembered another one. When I was in the hospital and couldn't get out of bed people asked me if the nurses who bathed were hot.
I honestly didn't think of that until people asked. But it did make me wonder if their moms were hot.
Okay, The crap above represent shit that came out of peoples mouths who knew me. Below is the shit people say to be to a stranger
I'll pray for you
Really, which God? The God that put me in this chair or the God that you gonna pray to that will take me out. I think it's pathetic that these believers assume I'm one of them but I've learned to just say thank you.
Everything happens for a reason
I don't even know if this can possibly mean. And my being punished? Am I suffering because of the fact that someone else got lucky? Do they think that they has to be some sort of balance in the world and I need to be on the bottom put them on the top? So I just roll my eyes and ask someone to push me away from that person.
I'll add more as people say more shit to me. Or you could leave your stupid shit n the comments.
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