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.
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
He served in the infantry in France. He never really spoke about his experiences, not directly.
I recently had the honor or organizing his army records. The letter below was dated 30 December 1944. It describes his actions that earned hes first Bronze Star
Which is a worse memory? Watching your buddy get blown to bits, or killing the man who just did it?
As a New Yorker, it's easy to take history for granted. For example, my wife works in a downtown office building. Today it is a WeWork facility. But when the building was built it was the Cunard Building, the side of the building has a bank ATM booth. If you look above the doorways it says first-class and second class. It's the building people went to get the refund if they purchased a ticket on the Titanic to go back to Europe. Right outside her office door business big statue of a bull. People lined up to rub its bull parts. But a few feet away is Bowling Green Park. The fence around it is kind of imperfect because in 1776 George Washington ordered his soldiers to cut off the decorative crowns and turn them into cannonballs. Nobody notices the fence. Whatever, this post is not about my wife's office.
This morning I was waiting for the bus on the corner of 34th St. and Sixth Avenue and I noticed this plot on the wall
"In this building on April 10, 1947 Jackie Robinson received his historic call from the Brooklyn Dodgers and changed America. He lived on the 11th floor in room 1169 in the former Malipin Hotel" Somebody took out the sharpie and wrote the address on the plaque. 50 W. 34th St. Look below for a Google Street view. The plot can be seen just above the head of the guy holding the roly suitcase
It got me thinking about all the great moments in history and the people that were there. I guess for the most part when you're in a historical moment you probably don't know it. By that Jackie knew what was going on. Was he nervous or calm? Happy or angry?
I know breaking a lot of rules by calling this a marathon. There were a lot of things missing that are all required to call something race. There was no clock, no one kept track of how long it took anyone to complete the distance. Nobody said"GO"!. We wore bibs with numbers on them, but those numbers were not associated to anybody's name or gender or age. The course wasn't measured by anything accurate. There wasn't a mass start.Honestly, nobody cared if you took a shortcut.
But yesterday, I completed a marathon. In fact an ultramarathon. It was the premier event of the NYC Shore Walkers; The Great Saunter. A walk around the perimeter of Manhattan Island.
Yeah, it wasn't a race. Hundreds of people met at Fraunces Tavern. Many of us sat around and had a cup of coffee and a danish. When we felt satisfied we started out at the most southern point of Manhattan made a right turn and headed north. We had maps but basically we were told keep the water on your left. Everything was nice and casual. There was no getting lost, there really wasn't much stress. Everything was flat and our path ahead was always obvious. We walked past the new World Trade Center, alongside the Highline, past the buildings where they are ripping off Trump's name on the west side. We sow some very surprising art somewhere around 160th St. We actually got to see the artist in action, stacking his rocks.
And holy moly! I was just scrolling through my friend Lisa's photos that she shared on Facebook and wanted to use this one because I remember when it was taken. I remember the feeling I had and we all probably had, that we felt pretty good. We were still relaxed at about mile 13 and speaking for myself I totally forgot that we were about to have to go uphill. But a thing I didn't notice until I just looked at the picture now is that those stones are right behind us. Nikki gotta go to school
That happy feeling totally ended when we walked underneath the George Washington Bridge. The path that went around the perimeter of Manhattan Island ended and we had a make a hard right turn into the Forest of Inwood. It takes a lot of uphill walking to be the spot where you can take this picture.
It wasn't all downhill from there. It was down and up and down and up and down and up some more. Also, when we left Inwood Park we did not go back to the perimeter path around Manhattan Island. The path is still being rebuilt from Superstorm Sandy if it ever existed at all. We walked through the neighborhoods of Inwood, Washington Heights and Harlem. Walking through the city streets was almost as challenging as walking up the hills. I remember thinking how lucky the out-of-towners were who got to see these authentic New York neighborhoods.
I knew what the route would look like heading back downtown on the Eastside. We walked past Gracie Mansion,then had to go back on first Avenue so we can walk directly past the front of the UN. We also walked right past the building where I have my occupational therapy and I had the surgeries on my hand and wrist.
Then we went back onto the path along the water to spot I was really looking forward to putting my feet on. A little less than four years ago I was hospitalized in the NYU Langone Medical Center. I was there twice. The first time for a couple weeks where they put a central line in my carotid artery and did five days of plasmapheresis, then another five days of IVIG treatments. Then they checked me out and I went to rehab. However, it seemed those previous treatments didn't work because I was still getting worse and went back to Langone for about a week where they did chemotherapy. For both those visits I had the same view from my window. I was looking at the path along the East River where it passes Riverside Plaza. I thought I would take a moment and take a picture of that window or may be uploaded Facebook video. But, it was already dark and is no time for monkey business at mile 27 of 32. So I just turned around and whispered thank you to all the medical professionals that brought me back from quadriplegia.
I'm in the middle of reading Born to Run: A Hidden Tribe, Superathletes, and the Greatest Race the World Has Never Seen, the part about the Leadville 100. One of the quotes from the founder of the race is really sticking my head today. Thank you Lisa, Janet, Marvlyn and Jackie.And a big thank you to everyone in the Prospect Park Track Club tell me I'm inspirational into my other friends/athletes from Achilles International show me what inspirational is.
4 years ago
So now it's two days later and improve reading this (STFU, I proofread), and it's May 7. I don't need Facebook to remind me that May 7 is a big date for me. I think about it almost every day because it's the day I walked into the hospital. I didn't know I wouldn't come home for 135 days. I didn't know that May 7 would be the last day I would walk unassisted for over a year.Well, this year May 7 turns out to be a Monday, the first Monday of the month. And on the first Mondays of every month my track club meets and everyone gets to stand up and talk about their weekend. Yeah, tonight I'm going to get to stand up and say
"Yeah, I just finished my 31st marathon, this one happened to be an ultramarathon, it was 33 miles and it was my second marathon in less than a year."
Yesterday I walked into one of my doctors offices just to refill a prescription. They said that I could call them. I replied that I happend to be walking by... That their office was between my home in Park Slope and my next doctor's appointment up by the UN, and that it was a nice day so I was walking there. One of the other people in the office looked up and said oh yeah you're the runner, did you run in Boston on Monday?
Naw, I drove up with a bunch of friends to watch. It was the least I could do for my friends and teammates looked at the same weather forecast that I did and made a conscious decision to both run 26.2 miles as best as they could and face hypothermia at the same time. They knew that they were going to be running into the wind with a moderate to heavy rain while it was 40° for three or four or more hours.Then, my doctor stuck her head out of her office and looked up and said, "You would've started and finished that race if you would've had the chance." "In a New York minute" I answered.
That's what I might've been thinking when my friend Noah snapped this picture of me. Or maybe how lucky I thought I was that the wind was coming at my back and not in my face like everybody who was running.I also remember what was going through my mind when I chose to lean on that poll. That I was able to keep my hands warm and dry but there was nothing I can do to keep my feet from getting soaking wet. I decided that I would stand by that poll until I felt my feet were too cold to allow me to walk back to the car safely. It was the least I can do to support my friends and teammates who are out there in T-shirts and shorts.
I really feel it was worth my time to stand out there in the rain. Just for this moment for my friend Shan to take a step backwards on the course just to give me a high five. Just to see that smile. He actually showed up in his finisher's poncho where we were all eating lunch and told me that the highlight of his race was seeing me and giving me a high five.
Believe it or not, driving up to Boston to see the runners has a lot to do with my neuropathy......Going back to Boston was kind of a big deal for me. Four years ago was a year after the bombing and I felt compelled to go cheer for the runners. I borrowed a friend's minivan and six or seven of us drove up for the day.
Let me try to explain what this has to do with Guillain-Barré syndrome. GBS and its lovely variance are autoimmune conditions that are triggered by something. Something that gets your immune system a little awake and then it doesn't go back to sleep when you're fine. Sometimes it's a surgery were something is implanted in your body like a lap band, or an actual virus, or a flu shot. The immune system kind of goes"oh, what's that? Okay, I'm done with that, but now I'm confused I'll make up a new enemy, all go off and destroy this guys nervous system!"
So now let me tell you a little story going backwards in time. On May 7, 2014 I walked into my doctor's office. I told her that there was something wrong with my hands and feet. About two weeks earlier I had crazy pain in my feet and shins and ignored it and then it turned into weakness. I told her that three weeks earlier I had the worst food poisoning of my life. After we watched the Boston Marathon we found a hole in the wall barbecue place to get a bite to eat. I remember saying that maybe it's not a good idea to have the pulled pork because I have to drive 200 miles and get everybody home. I remember thinking chicken was more safe than pork. The doctors confirmed that my autoimmune condition was triggered by food poisoning from undercooked chicken.
Anyway, I was talking with a fellow GBS survivor about how to deal with the fear of relapses. I told her we can't live that way. We can not get worried about geting worse again. In fact, I don't let my mind dwell on what could happen if I have a relapse. When my mind is idle I'm thinking about how I will qualify for Boston.
I'd like to review some of the ways that I have made/saved money in 2017.
I have been making money by filling out surveys online. Basically, from two different companies. One has been Inboxdollars. Lately, I've actually spent more time getting paid to watch videos than filling out surveys. I've learned that you can open multiple windows at the same time and get credit for watching multiple videos simultaneously. I don't bother doing many surveys because the likelihood of spending a few minutes answering questions and then finding out you disqualified is quite high. They don't give any credit for attempting a survey except sweepstakes points that are basically useless. In 2017 I've received checks (real paper checks that I've deposited in the bank) for little over $360. Since I started in September 2015, I've gotten checks for about $1200. You can get started in inbox dollars and by clicking this, and please do use this link to join I will get a small commission.
Since I've just done the math I realized I've learned a lot more money from Branded Research. In 2017 they deposit $1730 into my PayPal account. Again, that's real money that I'm able to do whatever I want with. They offer chances to do surveys that pay between 10 cents and a few dollars. You're told upfront how long the survey might take and what the reimbursement will be if you finish or what you'll get if you don't qualify. Click here if you're interested in joining, and again please use the link I'm offering because I will get a small commission if you join.
So out that's about $2000 that I can easily count from sitting around and answering questions. I probably got between $500 and $1000 more from surveys from other little companies I don't always read the questions and sometimes just make sure that I don't answer the trick questions incorrectly. Trick questions come like this.
Yes or no... is your diet entirely made up of plastic?
Please click the third choice.
Have you been to a store in the past 12 months?
Or they might ask you your age twice. There's some information I always give incorrectly like which bank I use all where I get my health insurance. But I try to be consistently incorrect so I don't get disqualified for answering a question differently within the same survey. Sometimes, from the first couple of questions you can tell what they're looking for. I'll never lie about being in the military, but I learned that I'll say anything to get qualified for survey.
I also have been getting cash back from two different companies. The one I've gotten the most cash back from is Upromise. In 2017 (not including December) I received $1847.95 from Upromise. Since I joined you promise in 2002 they have given me $13,254.29. They open up some sort of online account which are supposed to save for college but I've had them send me checks that I deposited into the bank. I earn this money in multiple ways. First, one percent of every single thing I've use my credit card for. Yes, my credit cards says Upromise on it, other than that it's a regular MasterCard. Upromise is also like an online shopping mall. If I stop there first before I go to the vast majority of websites I will buy from anyway I get up to 5% back from those websites. And when I say up to 5% it's honestly usually 5%. I also get 5% cash back from some of the restaurants I go to anyway. But wait, I get an additional 5% when I go shopping at these online stores or restaurants because I'm using the Upromise credit card. So that's 10% back on a lot of stuff. Also, and this is big, I often have the opportunity to buy things for other people like my co-op or my running club who pay me back usually before the credit card bill even comes up. They're paying me back for the cost of the item that I bought. So for example last year when I bought furniture for my co-ops basement multi-useless room it cost about $1500 and I got reimbursed that exact amount. But Upromise also gave me 10% of $1500 for making the purchases through them. You can join Upromise by clicking here. Again, please click the link I provided because I will get some sort of commission. If you have a problem let me know and I'll send you a direct invitation.
I also get cash back from shopping at Ebates. You have probably seen them advertised on TV. They deposit money directly into my PayPal account quarterly. In 2014 they gave me $77. Since 2000 they gave me $737.83. They're a lot like you promise and that they have a website that's like a shopping mall and before shopping at popular websites you just start at their website and they split the commission with you. You get back is a lot less than Upromise, but, I'd like to point out that most of the $77 was cash back on purchases that I also got cash back from on Upromise. Shopping through Ebates is honestly a lot simpler than Upromise and you often see the cash back in your account within minutes of making a purchase. But you have keep an eye on purchases through both companies they both "forget"to credit my account with the money I've earned and sometimes I have to send the customer service people a reminder that they owe me money. If you want to join Ebates click this link and again please use that link so I can earn a commission.
There also programs that don't work anymore. I think the companies used them to lure you into their stores with rebate programs, but people do not use them because ..... Some corporate mega drugstores used to provide a circular or an online page with what rebates were available during any given month. I would check out the circular at the beginning of the month and often things would go on sale and the rebate would be for the entire purchase price. To get the rebate all you had to do was go to their rebate website and enter the store code, date and receipt number from your receipt and they would know what you purchased and a few weeks later you get a check in the mail.
One day I noticed two things. Their receipts are given out sequentially and the person in front of me online was buying something that had a large rebate. I waited until the day before the rebate program was about to expire for that month and entered my rebate online. Then I hit backspace on my PC and reduced the receipt number by one digit. I got credit for the purchase that the guy in front of me online made. Boom! I'll let you do the math. They had no limits on the amount of receipts you can enter in a given month. Lots of free money. They've since made their website much clunkier and hitting backspace after you enter a receipt number brings you to a place we have to reregister for the rebate program.
Also, there was a corporate big-box office supply store that offered a $99 rebate on a $99 printer.(Of course, the catch was that it didn't come with any ink and ink for that printer was incredibly overpriced.) So it wasn't hard to buy a printer, enter your online rebate from your receipt number and then go return the printer. Repeat, repeat, repeat. They've since made it so that if you return an item after you apply for the rebate they won't accept your return.
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