You would think that the highlight of a half marathon would be to run in the last hint of a mile with the race director and then get a hug from the CEO of the Road Runners club. We,, that was close. After all, I was quite pleased with myself. Three years ago I had to ask the nurse to lift my butt cheek so I could fart. Two years ago, I could even make it out of my house to watch the race. Last year, I completed the race wearing ankle foot orthotics. This past Sunday, I did it again with no orthotics and it actually took me 15 minutes longer. And so what, I finished last in the largest half marathon in the United States. I hope to finish last in lots more races.
The highlight of the race came at about mile 12.5, when the small fleet of school buses that was picking up runners and bringing them to the finish line caught up to me. I have been in those buses, back in the 90s when I was trying to break 4 hours in the marathon. I needed a ride to the finish line in the New Jersey marathon, the Long Island marathon, the New York City Marathon, I was able to walk off the course on a 1 mile loop on a marathon put on and Randall's Island. I even drove the bus (it was actually a Honda Civic) a couple of times for the Yonkers marathon.
But Sunday that bus drove by with its door open and the driver made eye contact with me. We didn't say a word to each other, but he knew from the way I look back then I didn't need to get in that bus. The driver didn't hear me, because my mouth didn't make any sounds. In my mind at 100 dB I heard the cheers of my friends, "Fuck You GBS"
BTW, my friend Larry snapped a picture of the bus driver.
Until a couple of days ago the photo to the left with my Facebook profile picture. Until I got a phone call from the GBS foundation telling me it disturbed some of the patient's who might see my profile picture. I immediately realized that I represent an organization that is larger than myself. So I changed it immediately.
But my friend at the foundation seemed confused as to why put it up. I thought she wanted an explanation. I didn't give her one. Mainly, because I thought any discussion about it would become more of an argument about my First Amendment rights. And that would only become ugly. And by ugly I mean me defending my right to be an ass hole.
So here it is... I don't give a shit about useless words, symbolic events, or meaningless platitudes. In fact, I think they do more harm than good. I can't imagine that wearing a certain colored ribbon for certain month does any good except benefiting the people who manufacture ribbons.
My Facebook ad feed is cluttered with people trying to sell me T-shirts that celebrate rare disease month. They are the same people who are trying to sell me T-shirts because I was born in June or went to Sheepshead Bay High School. They're not helping people with rare diseases, Geminis or my high school alumni. They're just a T-shirt companies.
So here's the bottom line. If I am hanging from a cliff don't tell me to hang in there, reach down and give me a fucking hand. If I have a rare disease don't think wearing a ribbon is gonna cure anyone or prevent anyone from getting it. Donate money to medical centers that are doing research. Or better yet, donate money to the political campaigns of people who want to get elected and use our tax money to prevent rare diseases.
And BTW, tomorrow is the Brooklyn Half Marathon, I will be participating in it at all my friends and teammates will be helping me celebrate GBS awareness month by cheering "FUCK YOU GBS!"
For the first few weeks all the doctors kept coming into my room and smiling and saying, "Oh, you will be fine in a year." I looked up Guillain-Barré syndrome on The Google and realized their definition of fine was not really what I thought fine was. But I was able to deal with that because anyone's definition of fine was better than staying a paraplegic.
Then a few weeks later I had to go back to the hospital. There in the most empathetic voice I heard my doctor say words I will never forget, "Maybe we have to change your status to the chronic one"
April 27 was a Sunday in 2014. The day before I was really sick. I didn't sleep well the night before, but I thought I was fine to go to work. I really enjoyed my job and look forward to every day. I worked for a company that organized road races and I was usually the guy who would fill up the truck with tables and cups and water and fruit the day before the race. On race day I would ride my bike down to where the truck was parked and get to the race site a few hours before the race. I would help set up the course which meant getting the water and tables and cups out to where they needed to be and/or but in the mile markers and arrows out there. Then, just before the race will start I get back on my bike and leave the runners around the course.
Saturday, April 26 was like that. Except, after I put out the mile markers I had to use the port a parties which are just being delivered, I jumped up on the truck and told the guy not to move the one I just jumped into it until I got out. I then led the runners to the turnaround point over 4 miles from the start. My job was to wait there until the last runner came by making sure none of them kept running. The runners were spread out, so while none of them were looking I was able to throw up off to the side of the course. Then I collected the mile markers and brought them back to the starting line and got six or more. I managed to help load the trucks. I skipped my favorite part of staffing a race; the post race brunch.
I got home and realized how sick I was because I had a fever of about 102°. And then when I went to the bathroom I didn't know which way to face when I got to the toilet. I called my friend/boss and told him I didn't think it would be a good idea to be counted on for the next day. I wasn't going to try to wake up again at 4 AM. I updated my Facebook status and crawled under the covers.
A week and a half later, Wednesday, May 7, 2014 I stumbled into my doctor's office and told her that I've been having this weird problem with my hands and feet.....
I miss it so much.
I was working in parks.
I miss driving trucks.
I miss working with runners.
I miss walking over to the starting line a small race, picking up a bullhorn and telling the runners things like, "don't bother trying to avoid the first puddle you won't be able to avoid the next five."
I miss being the only person who got to watch the lead runners fight it out for first place in my bicycle's mirror.
I miss making sure that everyone who already finished knows that the last runner is on their way in so they can applaud.
I miss going out to brunch after the race and having some of the people who actually participated in the race come over and thank us.
At least I don't have to miss being recognized by strangers in the street...
My mom came to visit this week. It was good to spend some time with her and the kids in the family and all that, yada yada yada. We did a lot of touristy things. Last Sunday we had a big day in Prospect Park. We did the food truck rally, the kids got on a paddleboat for an hour in the lake. We actually walked in entire loop and we were out there for five or six hours. It was a great afternoon, one we are all going to remember.
But that evening in the shower I realized I let something happened that by today's medical standards was terrible. I had a little sunburn. [Oh no, no, no, cancer, cancer, melanoma, cancer!] I just wasn't gonna let that bother me. I've been through it. I spent the week being asked on a schedule if I could breathe or if I was incontinent. I've had four EMG tests, and about the schedule another one. I had a tube put in my carotid artery so that my blood can be filtered. I already had chemotherapy.
I actually embrace the pain and started singing in the shower. I misremembered the lyrics to this Warren Zevon month song. I started singing.
"I went down to the Louvre to bang my head on the wall. Because I'd rather feel pain than nothing at all."
I really started to embrace that mild sunburn pain. Every time I felt it it reminded me that I had gone outside. I had a great day. I was outside, alive, not dead.
As long as we are talking song lyrics. I came up with a motto for the week. I didn't realize until I googled it but Frank Sinatra made it famous.
I'm Gonna Live Till I Die
Two other things past my fielded of vision this week that kind of relate to what I've just been talking about. You see, for me I enjoy life by experiencing all of it. I am okay being cold or sunburnt if it gives me a chance to do what I want to do. I don't mind being uncomfortable or even in a little pain if it means doing or experiencing what I want.
I also took my mom to my gym and she seemed very concerned that I would hurt myself or get tired. She did understand that that was my goal. There will be some pain. I plan on exhausting myself. We also went to the newly built Whitney Museum. On the top floor they had a café and a giant outdoor terrace. The view from that terrace was a work of art. By only turning your head you can see Jersey City, the Statue of Liberty, the World Trade Center, 40 Wall Street (a Donald Trump owned building that he said was the tallest building in lower Manhattan on September 12, 2001), the Woolworth Building, the towers of the Brooklyn, Manhattan and Williamsburg bridges, the Con Ed Building and the friggin Empire State building. You could also look down at the Highline and the playgrounds on the rooftops of the lowrise buildings around us. My mother didn't want to go outside because she would be cold. I didn't understand her response. Cold.!? I can understand why she wouldn't go out, "sowhat, you'll be called for 30 seconds" I thought. But I didn't say that out loud, then I suddenly realized something; my mother is not me.... While I am okay being cold and wet in order to enjoy a view, my mother didn't think of you was worth giving up being warm and dry.... And that's okay, it's not up to me to define what makes my mother happy.
And I got this comment from a fan on Facebook. This is the question I was asked to answer: How do you make someone [who has GBS] go out and do things? Do you push? At what point do you just say F it, do what you want, which is nothing. I hope I made sense my thoughts are always in a jumble.
Linda, my wife doesn't make me do anything. She helps me do what I want to do. If I wanted to sit home and eat ice cream all day she would loosen the lids on the Haagen Daz and clamp a spoon to my hand before she went to work.
GBS changes people in many ways. Maybe your husband doesn't want to go out? Maybe wants to stay home and be comfortable? Your husband is not your child, he is not you, he is not me. I don't think you could assume that what used to make him happy will still make him happy. Don't just say 'fuck it do what you want', maybe ask him what he wants. I hope this makes sense, my thoughts have always been in a jumble.
Updated May 1, 2017 Let me say what I really mean here.... I finally figured out how to have a better relationship with certain family members that I'm closely related to. Specifically, some of them would rather eat sweets then have the physical capacity to get up and walk across a room. While I believe know that losing a few more pounds will only make it easier for me to get to that finish line. They are not interested in getting to that finish line. Their definition of happiness doesn't involve a finish line like mine. Their definition of being happy includes enjoying their dessert. So maybe, if only for the sake of having a better relationship on the few occasions where we are actually in the same room, I should sit down, with them and let them eat cake. Because they are certainly not going to go out and take a run with me.
Six years ago I got my first paid gig organizing a race. It was a 10K on Governors Island and part of my job was getting the water stations set up. The water stations were staffed by student volunteers from The Harbor School, a New York City public high school that had just moved into a newly refurbished building on the island. At the end of the race I thanked the kids for their help and asked them what they thought of their school. I told him I was asking because I had twins that were just finishing fifth grade and in a few years I was going to have to start taking a high school.
Their enthusiasm was overwhelming. They were all about to graduate, but was so excited that I would even consider their school for my children. Because there was so excited, and because they were willing to show up on a Saturday to raise some money for their school, I kept that school in the back of my mind when it was time to apply for high schools.
By the way, these kids were all with me on the 5 AM ferry when I took this picture of the moon setting as the sun was rising over Governors Island
(Click here, to see how many times I've already written about Governors Island.)
Maybe I'll have a chance to thank those girls for their good advice because my son is now a junior at the Harbor School. It turns out that I am helping the PTA organizing a fundraiser race and alumni are being invited back to compete.
So, yesterday were parent teachers conferences. Some might consider it a burden or a hassle to have to take a subway to a boat and then walk half a mile to talk to my kid's teachers. I thought I was lucky, because below are the crappy pictures I took of the amazing sunset on the boat ride home.
LOOK BELOW AT HOW GOOGLE ENHANCED THE CRAPPY PHOTO
Below, is the cell phone videos Zadine took of the awards presentation and below that is the cell phone video that Linus took. To be honest I was a little worried that I was gonna break down and cry when they started to introduce me. But I held it together and I was glad that my son agreed to come up on stage to hold the Tiffany plate.
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Being honored can mean two things. Or maybe it's kind of the same thing. In a couple weeks the New York Road Runners Club is going to be honoring me with an award in the name of one of the club's founders, Joe Kleiner and man. I just have to turn this around and say right now how freaking honored I am to be even noticed by an organization like the New York Road Runners Club.
I don't know what the official mission statement of NYRR is. But, over the past few days I've given it some thought. They are an organization that provides the means for people to improve themselves. They don't care where you come from in terms of physical ability (or race, or national origin, or religion or lack of, or sexual orientation/gender identity, or (kinda) how much money you have) and they help you get better and they create the goals so you can see your improvement. Wouldn't it be great if other organizations would be like that? Wouldn't it be great if our country was like that?
Okay, for me this is getting even weirder, because they asked me to provide some pictures so they can's show some sort of slideshow about me as they give me my award. They wanted pictures of me running or interacting with my teammates from the Prospect Park Track Club or with my family. I scrolled through my Facebook photos and sent them a handful of pictures.
I was, am, and will always be this person.
But now that it's a couple of days after the deadline to send in the pictures I realized which one I should've sent them. I should've sent them the photo to the right... It was taken about an hour after I finished the 2000 New York City Marathon. It was my slowest marathon to that date because I barely trained since my twins would just six months old. I had broke $ earlier that year but for this race I just wanted to break 5. My official time was 4:59:56. I'm also in the school cafeteria rented by the Prospect Park Track Club for our post marathon activities. As you can see, I'm holding my babies, but what you can see is that I'm looking at my wife.
After I finished my first marathon in about 4:11, all I wanted to do was break 4 hours. It took me seven years to do it but I did it just before my kids were born. Then I wanted to be the guy who could just run a couple marathons a year without getting hurt. I wanted to be that guy for my kids. Then I got really really sick and all I want to be is the guy can show his kids what kind of hole their dad can climb out of. I wanted to inspire them. It never occurred to me that anyone else would notice. It blows my mind that people giving the awards for being inspirational
This was the one photo that I kept at my bedside in the hospital. When I needed a place to park my mind this is where I put it.
And another thing, that might be different but is really the same. When I first got involved with Achilles International I couldn't get myself out of my wheelchair. I remember how much of a big deal it was when I stood up on my own from the wheelchair. Yesterday, without much fuss I offered my shoulder to a visually impaired athlete. We then walked a few blocks together. Until recently, I didn't have enough confidence in my walking ability to do that
So, I just realized that my goals are often past the finish line. In the 2000 New York City Marathon I didn't just want to finish under five hours. I wanted to finish under 5 and then have the strength to hold both my kids. At the Brooklyn Half Marathon last year, I wasn't just thinking of finishing. I was mostly focused on that bench a few feet after the finish line. Now, I'm thinking past finishing the New York City Marathon in 2018 as an Achilles Athlete. I'm thinking that maybe in 2020 I can finish the New York City Marathon as an Achilles Guide.
For some people, everything they do that requires effort must have direct and measurable benefits. These are people that don't go to political rallies, especially after the election is over. There are people who are always thinking about themselves, the "what's in it for me?" people.
Years back, Donald Trump was alone in an elevator in one of his properties. A young beautiful women got in. Pull the stop button. and said. "Mr. Trump, I just started working for you and it would give me great pleasure to get down on my knees and give you the best blow job of your life. " I don't know" he replied, "what's in it for me?"
I've never been a what's in it for me person. If you would've asked me as I started marching why I was doing it, I would've said so I could pry my fuckin' crippled middle finger up in front of Trump, or at least in front of one of his golden buildings. I was there because people voted for a man who our rigged electoral college made a man president who thought it's okay to make fun of people who are disabled.
Thanks Mauricio
But then I marched. I marched with hundreds of thousands in New York and millions around the world. And I saw these signs and realized why I came out. Because it's time to pick a side of the street to stand on. Time to be counted. Time to be with others who feel the same way as me.
Thanks Gabriele
Thanks Norma
.
Thanks Irene
Thanks Gary. I do believe you took a picture of Irene's sign
Those are 30 things that I bet you all take for granted. But there was a six-month period in the middle of 2014 when I couldn't do any of them, I would've had to patiently wait (sometimes not so patiently) for professional caregiver or a family member or friend to help me with any of those individual things. But on the first day of 2017, for the first time in two years, seven months, three weeks and four days, I did all those things without assistance. I was able to get up and leave the house without waking someone up to help me.
So, fuck you GBS! I will not rest. I will not stop. Stop and rest are both my four letter words. I do not want to sit in front of the window, I want to go out. I want to move forward. I will be inspired by people like Steve Prefontaine."A lot of people run a race to see who is the fastest. I run to see who has the most guts......"
People say that being a marathon runner helped prepare me for my fight against GBS. They talk about muscle memory and strong legs and stuff like that. I think that's bullshit. Being a marathon runner taught me how to meet long-term goals, how to work past discomfort and fatigue. It taught me that forward motion was infinitely better than no motion.
So if you happen to see me a race you can cheer "GO MICHAEL" or "GO ACHILLES" or "GO PPTC". But if you really want to drive me towards that finish line, you scream "FUCK YOU! GBS!";
So like most things, in order to do it well you have to practice. So if you're reading this now take a moment... And give me 10 repetitions in your biggest outdoor voice. Do it for me. Do it for yourself. Do it for everyone that was affected by this fucking disease.
You would think that the highlight of a half marathon would be to run in the last hint of a mile with the race director and then get a hug from the CEO of the Road Runners club. We,, that was close. After all, I was quite pleased with myself. Three years ago I had to ask the nurse to lift my butt cheek so I could fart. Two years ago, I could even make it out of my house to watch the race. Last year, I completed the race wearing ankle foot orthotics. This past Sunday, I did it again with no orthotics and it actually took me 15 minutes longer. And so what, I finished last in the largest half marathon in the United States. I hope to finish last in lots more races.
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