Thursday, April 27, 2017

I had no idea

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... 




Thursday, April 20, 2017

I'd Rather Feel Pain Than Nothing at All

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."
it is actually...



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.

Friday, March 24, 2017

Some crappy cell phone pictures

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








Saturday, March 18, 2017

Yeah, I'm Still That Guy

Shorts in the snow. No problem.

Taking a selfie.... I'm working on that.






Below is a picture from 2009

Friday, February 3, 2017

I'm honored

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.  

video


..................................................................................................................................
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.

Sunday, January 22, 2017

Why I marched

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?"
Thanks Murray
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
Thanks Will
Thanks Amy

Friday, January 13, 2017

The Other Day......

  1. I turned off my alarm
  2. I sat up
  3. Iwalked to the bathroom
  4. I peed in the toilet
  5. I flushed
  6. I washed my hands
  7. I put toothpaste on my toothbrush
  8. I brush my teeth
  9. I filled the cup with water
  10. I rinsed and spit into the sink
  11. I walked to the kitchen
  12. I made a cup of coffee
  13. I turned on the computer
  14. I started drinking my coffee
  15. I check my email
  16. I walked back to the bathroom
  17. I sat on the toilet
  18. I pooped and cleaned myself
  19. I washed my hands again
  20. I put on my socks
  21. I put on my shoes
  22. I put on sweatpants, a sweatshirt and a jacket
  23. I unlocked the apartment door from the inside
  24. I opened the apartment door
  25. locked the apartment door
  26. I called the elevator
  27. I opened the elevator door 
  28. I sent the elevator to the lobby 
  29. I left the elevator 
  30. I opened the apartment building door 
  31. Then I moved on with my day
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!";

Thanks Ralph@Studio 28 
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.

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

"FUCK YOU! GBS!"

Tuesday, January 3, 2017

Park Slope, Monday, January 2, 10 AM

The streets were really quiet when I went out to go to the gym. Then I remembered that it was a holiday because January 1 came out on a Sunday.

It was raining a little, so I was going to take the bus to the gym. As I crossed 7th Avenue I was able to see all the way down to Flatbush that there were no buses. I found a dry spot to wait.

A 10-year-old Japanese car with Obama /
Sanders / Clinton bumper stickers pulled into the first spot after the bus stop. I stopped the driver from putting money in the meter. "Parking is free today! Sunday rules." She smiled and said, "Good for me." "Not so much for me, I have to wait for the bus." And then like magic the bus pulled up.

I walked back and saw this new stencil at the top of the stairs to the subway at 9th St and 7th Ave.

Yes, it's time to identify our comrades and dig in for the upcoming battle.

Monday, December 26, 2016

An unsolicited product endorsement

To review....A little over 2 1/2 years ago I took my health for granted. Then, out of the blue, my immune system decided that my motor axons with the new enemy. I went from marathon ready to"doctor there's something wrong with my hands and feet" to so paralyzed that I couldn't lift a fork to my mouth or stand in front of the toilet in about 48 hours. I have a variant of Guillain-Barré syndrome called acute motor axonal neuropathy. (Use The Google, I'm tired of providing hyperlinks). My lower limbs have healed to the point where I can walk as far and as fast as any tourist in Times Square. But the problem is my upper limbs are healing slower, my hands and fingers are not that useful. Things like buttons, round doorknobs or scotch tape dispenser can be a stopper for me.

I've never been a fan of brand loyalty. In fact I always thought that was a character trait of a sucker. But there is a short list of exceptions. For example, I used to live in blue jeans and they were always Levi's. I don't know why, I never tried anything else. I also can't see changing my cable service or my cell phone company because I just can't imagine the competition is any different.

But I have been using the same laundry detergent for the past 25 years. Not because I think it's any better than the rest but because I associated with a positive memory. For our first vacation after our honeymoon my wife and I decided to buy a pair of new bikes and a bike rack for our new two-seat convertible and drive up to New England. They let people ride their bikes on the cross country ski trail at the base of Mount Washington. After a few loops my wife had enough but I thought I'd take one more loop. I wanted to push myself a little and I thought I knew where all the sharp turns were. So I took an incredible fall and had to have little pieces of gravel picked out of my elbow by the mountain rescue people. I learned a new word: "road rash", and for about a week I heard a lot of people say things like dude, "you should've gotten stitches". A week after the crash, I pulled the shirt out of the clean laundry that I thought I had thrown away. All the blood washed out. After that I didn't buy just any scent free laundry detergent. I became loyal to Tide Free, because it always reminded me of the crash that I survived.

So over the past few months I've been trying to figure out what I can do around the house. Or to put that another way what is stopping me from doing things around the house. I looked at the activity of doing laundry. I have no problem getting the clothes into a wagon and pushing it down to the basement. Getting them into the washer is easy but sliding the card into the slot to pay for the laundry load was more of a challenge but it didn't stop me. Moving wet close from the washers to the dryers was more of a challenge than I thought, but I got over that. I also had no problem getting the clothes upstairs and sorted, folding never really happen anyway. But there was one part where I would've made a mess..., pouring or scooping the detergent into the washing machine. Then I saw an advertisement for Tide Pods.

So thank you Procter & Gamble. I know I was not your target audience but you created a product that helped give me a little bit of independence back and with that a little bit of dignity.

Now I just have to hope nobody freaks out when they see me opening the dryer door with my elbow or using my teeth to get the laundry card in and out of the machine.

Tuesday, December 20, 2016

Why I didn't stay for the party

First a little background information.....

A little over 2 1/2 years ago I took my health for granted. Then, out of the blue, my immune system decided that my motor axons with the new enemy. I went from marathon ready to"doctor there's something wrong with my hands and feet" to so paralyzed that I couldn't lift a fork to my mouth or stand in front of the toilet in about 48 hours. I have a variant of Guillain-Barré syndrome called acute motor axonal neuropathy. (Use The Google, I'm tired of providing hyperlinks)

I was hospitalized for 4 1/2 months and came home in a wheelchair and have just recently become able to start handling most of the day's activities without the help of a nurses aide. But my hands are healing a lot slower than the rest of my body. So many of the things that 99.99% of the human population take for granted are literally still out of my grasp. Things like round doorknobs can stop me from moving forward. But I'm not asking the world to change for me, I have no problem waiting for someone to come by an open the door so I can get into many public places. Dressing myself is also a challenge. Shoelaces, buttons, zippers, and even clips are all long-term goals. So I wear pants with elastic bands and T-shirts or hoodies depending on the weather. I'm quite pleased with myself when I can get a windbreaker on without help from a friend or dislocating my shoulder. I was home from the hospital for about a year before I was able to brush my own teeth, but I'm far from holding a razor blade against my neck. So I use an electric razor which at best leaves me grubby.

A little more background information...

When I left my full-time job as a school administrator in 2008 I wanted to get into tourism. So, I started volunteering in the tourism center in Brooklyn's Borough Hall.  I enjoyed giving out touristy information. But I really mostly enjoyed hanging out with the three other people who I shared Tuesday mornings with. Anyway, about the same time my immune system attacked my nervous system the new Borough President temporarily closed the tourism center for renovations. (It still closed by the way, but that's a different topic.)

So, even though I haven't volunteered in over 2 1/2 years I was still invited to the holiday celebration at Borough Hall. Even though there was only an exactly one person also going that I cared to spend time with I decided that I was going to get myself dressed and make an appearance at this party.

I also received the invitation exactly 26 hours before the event was scheduled to begin. I didn't think that personally, the volunteers were always thought of as an afterthought at these events.

So I put on all the clothes I possibly can and head out into the 24° day. I had no problems getting int and out of the subway. I was even greeted by the Halal food vendor who I used to buy a chicken and rice from every Tuesday from a couple years. So I'm feeling pretty good when I get to Borough Hall. But didnt let that good feeling go to my head. There is a gigantic staircase to get from the lobby of Borough Hall up to where the party is and it was built way before the Americans with disability Act had an effect on internal architecture. But I know there's an elevator. When I volunteered there I never took the elevator but I know it's there.

I press the up button and it arrives. The elevator contains an office worker, she politely says "what floor?" My answer is little vague ," I don't know if it's 2 or the mezzanine, but it's where the party is." She gives me the most dramatic top to bottom once over and says, "I guess they are inviting random people off the street this year." She really said that! She looked at me like Obama looks at Trump and said that to me! I was going to ask her if she knew who I was and where I've been and what it takes for me to get dressed. But I didn't. I held it together and said, "No, I'm one of the people who volunteers in the tourism center and I'll be back when they reopene it."

I'm still looking forward to the reopening so I can volunteer there. But I think I will avoid leaving the ground floor.

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