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.


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.  


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.












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.

Friday, December 16, 2016

Two years before this was made I needed to be rolled over on a schedule

27,445 Started this half marathon and 27,439 were faster than me. But I don't think anyone had a better time than me.

Saturday, December 10, 2016

Get on up (last update for a while December 2016) NSFW and TMI. Not safe for work and too much information!

Update: December 10, 2016........................................................

As a review, I walked into my doctor's office on May 7, 2014. She set me straight to the hospital with a little note that said I had Guillain-Barré syndrome and by that evening I was unable to stand on my own. When you can't stand you can't stand in front of the toilet. So in the hospital, and in rehab, and for a while after I got home, I had to use a smooth wooden plank to slide from a wheelchair onto a rolling commode. A few months after I got home I was able to keep the commode over the toilet and get myself there with a walker. But all this time my hands were healing much slower than my legs so when eventually I was able to get on and off the regular toilet I was still unable to cross the finish line and use toilet paper 

So while I came home from rehab on September 18, 2014 I haven't been independent in any sense of the word. It was about a year before I was able to use a fork and a spoon myself, or bathe myself, or brush my own teeth. But in the year beginning the summer of 2015 I slowly gained the ability or purchased the tools so I can handle most of the activities adults take for granted. I had the round doorknob replaced to the back entrance of my apartment building with a lever and a pushbutton combination lock so I didn't have to use a key. I also put a giant rubber band on my apartment door so I can pull it closed and got a funky keychain so I can get in and out of my own apartment without leaving the door unlocked. So basically, by the end of the summer of 2016 the only thing that kept me from spending my days alone like an adult was the fact that if I needed to use toilet paper I would be as they say 'Shit out of luck.' 

So I figured out which bidet would work for me and had it installed. Then my wife and I were figuring out all the other little details that would need to be arranged for so we wouldn't have to pay someone to hang around with me all day. We bought a new coffee maker (I'm sorry planet Earth we got a Krups machine) .... Figured out how to leave the lids a little open so I can have lunch. I even asked the staff at the YMCA where I work out if they would mind helping me with some of the contraptions I need to pull the bars on some of the devices (When they smiled and just said "that's why we're here", I was overjoyed). One of the last little humps that I had a figure out how to get over was putting my own socks on. You wouldn't think that would be that hard except I still don't have the grip strength in my fingers to pull them up.

If you've been paying attention to my blog you would've known that on September 25 I fractured one of the little bones in the foot. I didn't need a plaster cast, but I did have to wear a boot that was secured with Velcro straps. Since the neuropathy in my hands hasn't healed as well as my feet I was unable to get that boot on and off. But earlier this week I was given the green light by the orthopedist to just take it easy wearing regular shoes.
So, exactly 31 months from the day I walked into my doctor's office and was told to hurry up and get to the hospital because you have a life-changing illness, I walked out of a different doctor's office knowing that I can begin to resume a normal life. This week I was able to say goodbye to the person that I had hired two years ago to help me do almost every activity I needed to do. Now, I can wake up, get out of bed, and do everything you do in the bathroom. I can make myself coffee, get dressed and leave the house. I could choose to go to the gym or take a bus or subway in a different direction. With a little bit of advance planning I can go into a restaurant and by myself lunch or go into a grocery store and bring some food home. 

I can compare my disability to slavery and institutional racism. But I think I can appreciate what it's like to have your freedom restricted.

Home Alone

Out Alone

Fuck you GBS

I'm free at last

Update October 22, 2016 .....................................................

It's been a long time since I updated this post. Maybe too long. Maybe I should've bought a bidet months or years ago. But now I have one.
Now that I purchased this model from
Overstock this pops up as a Facebook ad.

So my dear reader, you only have to use the tip of your imagination to think of the indignities I had to go through about once a day because my fingers and wrists are is about as useful as a big of carrots. 

Now, I can get on up whenever I want to go, as long as a home. 

It might be a long time, if ever before I get to update this post again. But a lot of people only sit down on their own toilets....

..... And if anyone says I told you so, I'm you spend a few days at your place thanking you....

December 2015..................................................................................................................................

On the third to the last time I visited my friend Paul in hospice, I witnessed something no one should ever have to see. We were chatting for a while he asked me to hand him the buzzer for the nurse. We ran so many miles together he didn't ask me to leave because he had to pee. When the nurse came in he said he needed some help getting to the toilet. She then said something like, "We talked about that Paul, remember what happened last time, your legs are too weak, we have to bring you a bottle."  Nobody should ever be in the room with someone who was told they already stood in front of the toilet for the last time. 

Fast-forward a couple years and I'm in the intensive care unit this time. Remember, I walked into the hospital, but once I was there they did n't let me walk around too much. The morning of my second day I buzzed for the nurse and told him I had to pee. I made it to the bathroom but when they let go of me in front of the toilet I almost hit the ground. They said after this we'll bring you a bottle.  In that moment I was with Paul again

For a couple weeks I was able to hold the bottle, and then neuropathy started to affect my hands worse. For four months while I was hospitalized and a few more months at home I couldn't even stand and be at the same time. Then for a while I was able to stand, but I didn't have the hands to deal with the rest of the process, so I still needed a person and a bottle. A couple months ago I was able to work out the process of peeing, but pants with zippers and buttons not so much.

Last night I decided to push the envelope a little. For the first time in almost 19 months I just got up, walked to the bathroom, took a leak, and came back to the living room without asking for help. This is big. This means, that if I wearing the right kind of pants I could use a public restroom by myself.

October 2015............................................................................................................................................

I need to give this one more update. And it's also time to describe some of the processes I had to go through in various hospitals.  You don't really have to read this, because it is NSFF(not safe for work) and TMI (too much information)

When I went to the emergency room I was just wearing shorts and a T-shirt. I difficult to be moving.  I actually get my shorts on for about five days in intensive care. Then one evening a couple of nurses aides came over and said hey you want to take a shower? I had been out of bed and for five days, and wasn't thinking much about showering but it sounded like a good idea. They put me onto a thing that was like a combination of a wheelchair and a beach chair. They rolled me into a little room that had a shower and then they peeled me out of my clothes. I said out loud goodbye dignity", because I actually sort floating away like a balloon into the hospital  For the past year and a half I've been struggling to get it back.

Where do the boy parts go?
When I walked into my doctor's office back in May 2014 I knew I had problems. But one of them like was myself. Prior to all the weakness that occurred in my arms and legs, I had incredible pain. Kidney stone level pain. And I've had kidney stones and have been told I be prone to more. So I keep oxycodone around. When I had this pain I self medicated little. I didn't know that oxycodone doesn't work on nerve pain, but since the pain to go away I just took more oxycodone. It didn't help, it did make me happy but it did make me really constipated. So being a quadriplegic and totally clogged up was not a fun combination. All my fifth day in the intensive care unit I mentioned to my nurse that I got a problem, that I had not pooped in five days. She said yeah we know if nothing happens tomorrow it's all of our problem. So in the middle of that night I rang the bell.

So.....I'm in intensive care and having gotten out of bed or pooped in five days. They bring over this chair with a little hole in it and tell me that they will help me get on it. I look at it and say "but where do my boy parts go?" The nurse says don't worry about it do what you gotta do. Okey-doke he but IP when I poop. So they hit me up on that thing, but as I predicted I became a frigging fountain. Sorry.

The constipation all effects of the oxycodone lasted for about a month. I stayed on a once a week schedule during that time. In acute rehab they had better rolling commodes with my boy parts, and they actually rolled me over a real toilet. But the first two out of three poops I had at Rusk required a plumber after I was done. I don't know about you, but have ever were able to look back and say holy shit that was the biggest poop I ever had. Well, I looked back and four turds and each of them was the biggest crap I ever took in my life.

Yeah, I got regular and came home from the hospital.  That was 13 months ago. But I still needed a sliding board to get over onto a raised commode. It took me a few months but then I was able to put the commode in the bathroom and use a walker to get to it. Then the walker became unnecessary. But, I couldn't even stand in front of the toilet.

So in the spring I was able to pee standing up. It was really exciting to recycle that portable uranal.

A few weeks ago I started up Occupational Therapy again. It's great. I'm just ask questions like what do you want to do that you haven't been doing. There's been so much I've been afraid to try, but lately I've learned that I can yes drink from a glass, no more beer through a straw.

The third week of OT I said that I didn't know if I could get up off a regular toilet. So we tried it in the therapy gym. Without holding onto anything and without taking my pants down I easily sat down on a toilet. And then I got right back up! FUCKING WOW. 

Yeah, I still need a little help in the bathroom with those things that require fine motor skills from the fingers. But raised arm commodes and urinal jars are behind me. (Pun intended)

August 2015..................................

life's been getting better, been spending four or five hours out of the house it any given time. I just have to make sure I go before I go.

April 2015 ...................................

I wrote this post below back in August when I was in rehab.  Lately, I've been posting about my progress how far I can walk the fact that I can handle a flight of stairs now.  But my whole day revolves around personal needs that I need help with.  I don't need a sliding board anymore, but I can't just go anywhere.

Written from rehab in August 2014

Sometime in the next 24 to 36 hours you're going to feel the need to go to the bathroom. You're going to get up, go to an appropriate place, take off an appropriate amount of clothing, sit down for an appropriate amount of time, and when you're done you're going to clean yourself. Hopefully get up and wash your hands leave the room and move on with life.

If you are a believer thank your god that you can do this without pressing a button, and calling for help, using a sliding board and a commode chair that was specifically adjusted for your height. If you're not a believer just don't take taking a shit for granted.


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