Saturday, August 20, 2016

Perfect timing

The New York City's Summer Streets program is really special. For  three Saturday mornings in a row every summer the street is closed to traffic from the Brooklyn Bridge all the way to the 72nd St. entrance at Central Park. Before Guillain-Barré syndrome attempted to steal my life away I either ran this or biked it with my kids almost every time it happened.

Click here for interactive map. But I'm calling it 9 miles because 
we walked from the curb at Park Avenue to the fanciest bathrooms
 in New York City in the Waldorf-Astoria
This morning was the last Saturday it was gonna happen this year and a couple of days ago the weather forecast made it look like it was gonna be the least unpleasant day of August so far. So I put it out there that I was looking for any friends who wanted to walk from Prospect Park to Central Park. Janet walked from beginning to end with me and Mary joined us for the chunk from downtown Brooklyn to the other side of the Brooklyn Bridge.

This 9 mile walk took us about four hours. When we made it to Central Park I felt like I had the energy to walk back home, but I didn't need to. But there will other long walks in the future, runs also.

Towards the end of the walk, Janet mention this was taking her a little longer than she had planned and suggested that maybe instead of walking to Central Park when we got the 72nd St. we go right towards the subway. I agreed, but she understood later why I reneged on that because I wanted to be able to say that I walked from Prospect Park to Central Park. So then to save time I suggested we jump on a city bus on to get to the subway a little quicker. The bus was right there and without any warning a thunderstorm erupted just as we got into the bus. So instead of getting off the bus at 59th St. we stayed on the nice dry air-conditioned bus down to 23rd St. where we were still able to jump on the train. It was kinda funny to watch the tourists panic when the driver announced the last stop would be 26th Street. That was exactly where we wanted to go. I knew they were tourists because I made some scatological joke when we passed Trump Tower and they looked at me like I was a terrorist. So I made them happy a few minutes later by making sure they all knew we were driving by the Empire State building. Then we got to Madison Sq., Park and the rain was done and we step right into the subway.. We made quick connections and it was nice to look out the window of the train as we crossed the Manhattan Bridge. I always thought the views from there were underrated because you get to look back at the Brooklyn Bridge.

I've been set spending the second half of my day thinking about the first half. I take for granted that without going out of my way or giving it much thought I can travel across the Brooklyn Bridge and visit Central Park. For reasons of convenience I can take a bus passed Trump Tower and the Empire State building. Yesterday, I had to take care of some business in office that happened to be a few feet where George Washington took the oath of office for the first time. Then I went to visit my wife for lunch, to do that I walked past the New York Stock Exchange building and then had to wind my way through the tourists that were lined up to rub the gonads of that bull at the south end of Broadway. I hailed a cab home in front of the building where people had bought tickets for the Titanic's return trip and a wife and a and in wow and in will and you and and and and and the across the street from Bowling Green Park. The fence around that patch of grass has a fence that used to have crowns on it. They were removed by patriotic soldiers and turned into cannonballs that were fired at the Redcoats. As a lifetime New Yorker I take all this crap for granted.

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But I can tell you what I don't take for granted anymore. The FACT that I am now preparing to begin and complete my 30th 26.2 mile marathon. Yes, on November 6, 2016 I'll be running the New York City Marathon again. I used to take this for granted that every year I would run the New York City Marathon. Not so much anymore. Two years ago nurses had to roll me over on a schedule to keep me from getting bedsores. A year ago, I was hobbling around with a cane. Today I just woke up and walked 9 miles. I might take it for granted that it's fun to debate which bridge is better to cross the East River with. But I'm not going to take for granted the fact that I can have that choice.

Tuesday, August 2, 2016

New Shoes

When I walked into my doctor's office on May 7, 2014 I figured there was something wrong with my feet because I kept tripping over stuff. Not knowing what was going to come next I thought it would be best to wear one of my old beat up pairs of shoes. I used the spray chalk on roads so people knew where to put the mile markers and arrows for races. So my old shoes were hiking boots covered in spray chalk.

For the first time in two years, two months and 26 days I put on a pair of running shoes. Just to see how they felt.....



I can do that

Tomorrow, tomorrow I'm going to go run a 5K. Run.A.FIVE.K.

Monday, August 1, 2016

It's always been one of my favorite races

I got into running so I could avoid athletics. Really.

Back in high school there wasn't anything less pleasant than gym class. Balls, mats, ropes and more balls. They were all reminders that I was just a spaz. But a couple weeks into September the gym was filled with tables. All the coaches were there recruiting for their teams and I found out that if I got onto any team I would't have to go to gym anymore. In fact, they would make Jim my last period class and without going I would get a 95.

Baseball, football, basketball, soccerball, wrestling, gymnastics they all didn't want me. I was going to drop the ball get pinned or quickly fall on my face. Then I got to the track coach, I asked him what I had to do to get on the team. It was almost 40 years ago but I can remember what he said, "Show up. Do your best." I can do that! For three seasons a year for four years I showed up to every practice and competed in every meet. I never scored a point, but that didn't hurt the team, And I did learn to enjoy running.

I probably ran about 10 times in my 10 years of college, but when I moved back to Brooklyn I decided to start running again. One of the things that inspired me to run again was the fact that I now lived a block from Prospect Park. Prospect Park became my place to train for my goal of finishing the New York City Marathon.  To read about what it was like to attempt to run the New York City Marathon as a 17-year-old and then to finish it as an adult read this blog post I wrote for the Prospect Park Track Club.

I didn't join the Prospect Park Track Club because I wanted to be part of the team. I joined because I heard they could pull some strings to get me into the race and had a bus to get me to the start of the race, But it quickly became my team. I was accepted without regard to my mediocre race times. Because, just like back in high school if I wasn't one of the first five finishers for my team I was just listed as an "also ran".

So when you're on a team where everyone is your friend being confident that you will only be an also-ran has its privileges. When I race for the Prospect Park track club I know that my best is never ever going to score any points so I might as well maximize my fun. On what is always the most humid day of the summer the New York Road. Runners club puts on a race that is the most fun. Because in order to register you must be a member of a local club and they encourage all the local clubs to have a picnic/cheering zone for their teammates. Second, the race is not coed. Men and women run separately, that makes it so each gender can cheer for the other.

According to NYRR I ran the club team championship race 15 times.The times in those results are meaningless numbers representing 5 miles. Because sometimes I tag along with the women before the men's race and other times I ran all the way to the start so I can get in some extra miles. That always made it more fun.

On May 7, 2014 I stumbled into my doctor's office, kind of hoping she was gonna give me a prescription or something and I was gonna go home. Not so much. She said me to the emergency room, and I still thought I was gonna go home. Not so much. They sent me to intensive care and then I started canceling races that I had paid for. But I was really hoping to be out of the hospital in time for the club team championship race, in August. Again, not so much. A month before the race we were picking out rehab centers for long-term recovery. I knew that's where I would be and a little piece of me was hoping to get the second best rehab center because it would've been pushing distance to Central Park. That didn't happen, and the race went on without me in 2014.  In 2015 most of my teammates didn't realize that just showing up at the race holding onto a forearm crutch was a big accomplishment for me. I shouldn't say that. They probably did realize how big deal it was, and follow my lead by not making a big deal of it.

This year I was so ready for a 5 mile race. If the men were starting an hour before the women, I
would stand a chance of finishing while people were still cheering for the women. But this year the women was starting first, so I asked the nice people at the New York Road Runners club if I could start in the back of the pack behind the women. At first, I think they thought I was asking to compete against the women. But then I referred to my recent race times and they agreed.

Nobody even noticed me standing about 50 feet behind the last woman lined up to start the race. When the horn went off everyone walked forward to the starting line and then started to run. I did the same and made a mental note that the clock already said 1:40.

Then I ran. I ran over the starting line that and I just figured I'd keep running until I had to walk. That lasted about a quarter mile, but it was a good quarter-mile because there I passed some people who recognized me and figured out what I was doing. Janelle  even took this picture of me. I was about 100 yards into a 5 mile race and already I was unable to see the back of the woman's race. [Insert sexist joke here]

For the next 4 miles I was running my own race. The course marshalls was still out there, but they were just waiting for the men's race to start. Most were sitting in the shade or busy playing with their phones. I didn't mind, I knew the route. Then, just as I expected just before I got to mile 4 the fast men started passing me. I yelled to them what I always yell out when I'm being lapped or when I'm a spectator and I get to see the lead pack. "YOU INSPIRE ME!" I was not acknowledged, but I know my words reached their ears.

In the 4th of the 5 miles of this race, most of the rest of the men passed me. There were many familiar voices personally cheering me on. Many familiar faces. There are also people I didn't even know; maybe they knew me from this blog, or Facebook or whatever. But, strangers were cheering for me. Look at the picture below. With a half a mile to go my friend Gary said he would just walk it in with me. For the last few hundred yards of the race I changed my stride so I would be running again. It was a good thing I was running... Putting on a show because in those last few hundred yards all my teammates and all the other teams were watching me finish. And they were all cheering. (I have often joked that my favorite part of the New York City Marathon is running up First Avenue. Because everyone is cheering and the winner is already in the shower so they must be cheering for me.)  I knew they were cheering for me, because they were calling my name.

But you see the kid drinking a cup of water... He had finished the race a long time ago and came back just to tell me that I inspired him to lose some weight and come back into racing.  I inspired him? 

No, I never wanted to inspire these people. I never really wanted people to cheer for me. I just wanted to needed to show my kids how a person can get up after they've been knocked down.... That sometimes you have to work extra hard just to get up.  I never wanted to inspire strangers. I was always happy to be that mediocre runner going by unnoticed. 

But as I've said before, this feedback helps. I'm really keep getting better and you can keep cheering. Because, I rather be the daddy who got up and inspires people than the daddy who fell down. So when you cheer for me, just make sure it's loud enough so my kids can hear you

Monday, July 25, 2016

If I can, I will.

There's been some big progress the last few weeks.

First, with a little bit of planning, we took a family road trip. We spent four days and three nights in a very nice hotel just outside of the middle of nowhere in upstate New York. We enjoyed the southern tips of the Finger Lakes. I have to admit, that I was a little nervous about all the traveling we all did. Everything turned out fine, and I did a few things that I took for granted in my life before acute motor axonal neuropathy.

At Robert Treman State Park in Ithaca I managed to walk barefoot on gravel and then sit with my feet dipping in the natural pool.

Sitting there, there were a few things going through my mind. Mainly,
I was trying to be in the moment. Trying to enjoy the view of my kids playing in the freshwater.

I wasn't thinking about the path I recently took, the uneven surfaces, sharp rocks. Nor was I thinking about the last two years, intensive care, blood transfusions, chemotherapy and wheelchairs and canes.

I wasn't thinking of the fact that I had no idea how I was going to stand up, or even if I could. But I did, and I don't think any of the strangers around me knew how much of a big deal that was.

I was just a guy watching his kids jump off a diving board into a pond in front of a waterfall.
And hang out in the waterfall


The next day, we went to Watkins Glen State Park. Way before the kids were born my wife and I spent half a day there. I knew we weren't far, so I suggested we go back there with the kids. Back in the 90s when it was just the wife and I we parked at the top and walked to town and back along the waterfalls. Here we were, 20 years later with our kids. I thought that was kind of cool. This time we parked at the bottom and were going to walk to the top and back. However, my plan was a little ambitious and I wisely let the rest of the family go to the top and back without me. Yeah, going up was challenging especially because there wasn't a rail to hold onto. You can Google Watkins Glen for tons of great pictures but below is one I took with my shaky hands of the stairs that I managed to get back down with some significant help from my wife.

(By the way, holding a phone and taking a picture is another thing that most of you take for granted. I consider it one of my recent accomplishments.)

Another one of my recent re-accomplishments is the fact that yesterday I managed to go to the Park Slope Food Coop and shop by myself. You might not think that's a big deal, but that place is super crowded on most days but on a Sunday afternoon did sometimes wonder why the fire department doesn't show up and clear the place out. So, getting around the aisles and filling my cart with vegan and politically correct merchandise was a great challenge. And then waiting online to find out how much everything cost, then a second line to pay, and yes a third line just to get out the door was pretty much a big deal.. The fact that I successfully did all this without falling or even dropping anything maked me think they should name that store after me. But there's probably a rule against that.

And on a similar note last week I walked out of my house and then down to the barbershop, got my haircut and came back home. All by myself. Like a grown-up.

Thanks Randy
And I'm racing again, if you want to call it that. Saturday evening I joined some of my old friends from the ultra running community in a six hour race. I first did this race back in 2012. Then, I was very happy to finish 27.44 miles in six hours. I wanted to run more than 26.2 miles that day so that it was count as an ultramarathon. And I did. This time, I really didn't have a special goal. I knew that two months ago it took me 4 hours and 40 minutes to run the 13.1 mile Brooklyn half Marathon. I figured I might be able to do 15 or 16 miles in six hours.  But I didn't figure on the fact that it was 97° when we started the race at 5 PM. The temperature actually got tolerable by 7 PM when the sun got lower. But nothing flattened the hills that we had to go up and down. In the end, I was very pleased with myself. I walked continually for six hours. About halfway through the race I was tempted to take a break on a park bench. Looking back, I'm grateful to all the mosquitoes that were there because they kept me from staying there for more than five seconds.

To the left is a picture that was snapped of me passing the buffet table. I was probably three or four loops into the ten that t that I completed.

I also have to sum it up here by saying how good it felt to be back in the community of ultra marathon runners. Just by being around them I remembered that sometimes goals are very far away and you get there just one step at a time.

Saturday, July 16, 2016

Sometimes things work out much better than you thought they would

Since GBS/CIDP/AMAN I have had the chance to meet some of the most wonderful people. As I've said before, joining the Brooklyn chapter of Achilles International has been the sugar I needed to make the lemonade. But this past Thursday was something special.

The group meets at the local running shoe store and then walks over to the park for a loop. When I joined I showed up in my power wheelchair. Sometimes I chaperoned people around the park and other times I would hang out with the service dogs. When I transitioned to a walker I was only able to make it to the park while other people did a loop. Then I would go out and back a quarter-mile and eventually I walked the short loop through the park. I could've walked further, but it would've taken so long the shoe store would've been closed by the time I was done. I didn't want people to get separated from their belongings that they left there. But I'm training for a marathon and wanted to walk more than just a couple of miles. I just happened to mention that I was going to do a loop of the park earlier in the day and then meet everyone at the shoe store. I didn't think volunteers would make themselves available to walk with me. I really didn't see that coming. I guess that was the ice for the lemonade.

Yesterday, I got two volunteers to chaperone me around the park before everyone else met. My son, who thought it would be a good opportunity to collect Pokémon things. And Larry, who just doesn't miss an opportunity to be a nice guy. Larry is not just a nice guy, Larry likes to run and Larry really likes to take pictures. Here is a link to Larry's Google + account. It's full of the pictures he's taken while running or of runners. As I type this Larry has 13,966,454 views,  wow

So my son,  his BFF, Larry and myself all met in front of my house at 4 PM yesterday. The sky looked a little gray but I figure I'd see which way the wind went. We made it only to the end of the block when one of those marvelous July thunderstorms rolled in. A quick look at our handheld computers told us the rain wasn't gonna last very long. Another check in 10 minutes and we knew we had clear skies for the rest of the day. But this screwed up our timing. Larry and I didn't have time to walk around the park and make it back to the shoe store at 6 PM for the rest of the group. So we figured we let my son lead us around in search of Pokémon and we would just had back when the time was right.

Here's what we saw as soon as we walked into the park.

Then Larry said something that actually surprised me. He told me he'd never been into the interior of Prospect Park before. He's been to the park hundreds of times, he probably ran over thousand miles there and took thousands of photographs. But he never ventured far from the main looping road.

I don't know who enjoyed it more: Larry, exploring the park or me sharing that moment with him

Larry had never seen the waterfall before

This was the first time he saw the front of The Boat House

Or the view of the pond from the Binnen Bridge.

Larry and I had run over the Meadowport and Endale arches hundreds of times. I had told him that Mr. Olmsted had a plan. When he built Prospect Park he made it so that if you stepped into the darkness under the arches that that was the best place to view his masterpiece.

It was nice to walk under them and tell Larry that this is where I went in my mind when I laid there paralyzed in that hospital bed.

I would just like to take this opportunity to thank James Stranahan for hiring Olmsted and Vaux to create Prospect Park. Also, my friend Nicoletta for starting a chapter of Achilles international in Brooklyn for me to share my Park with.

Then, of course, we circled back to the shoe store to meet up with the sugar for my lemonade.

I'm just wondering, in this picture can you tell who the athletes are and who the guides are? Can you think that one group is getting more out of this than another?

Friday, July 8, 2016


This is different and the same



Updated: Thursday, July 7, 2016, 4:31 PM

I don’t immediately blame the cops and I certainly don’t blame the victims.

I blame the gun nuts.

Gun lovers and their mouthpieces at the National Rifle Association have done more to damage police-community relations than poor cop training, racism, crime and fear could ever do.

And it’s all due to the NRA’s twisted, sick perversion of the Second Amendment from a cherished right to keep and bear arms as part of a well-regulated national defense into a call to “stand your ground” in all circumstances.

The NRA famously depicts armed citizens as heroes and lobbies against any restrictions on an American’s right to defend himself.

“Tell every politician you will STAND and FIGHT to protect your fundamental right to hunt, shoot and own a gun for personal protection,” one of the group’s petitions reads.

But this relentless call for “personal protection” has not led to a safer country, but a more dangerous place awash in guns.

Last year, 990 people were fatally shot by cops in this country, according to the Washington Post. So far this year, 509 have been killed.

The victims in two recent shootings — Alton Sterling in Baton Rouge andPhilando Castile near Minneapolis — carried weapons.

If Sterling and Castile were lawfully armed, then they were the “good guys” with guns the NRA is always talking about.

But in the recent police shooting of Dylan Noble in Fresno or of Dillon Taylor in Utah two years ago, the victim was unarmed.

And that’s the problem: In a country where law-abiding citizens are encouraged to protect themselves with guns, police increasingly assume every person they stop is indeed armed.

The NRA has been beating the “self-defense” message into our consciousness for decades now — and the result is that the plurality of American gun owners, 48%, now say they own their weapons to defend themselves, up from 26% in 1999, when hunting was the main motivation for gun ownership.

Alton Sterling, 37, was killed by police on July 5. Cops believe he was armed — and he did own a gun legally. Philando Castile (right) of Minnesota was also killed by cops during a routine traffic stop. He was legally armed.

I got a vitriolic taste of this facet of gun culture when I wrote about gun controlafter the Orlando mass shooting. Many people who emailed me said they armed themselves because they do not expect, nor want, law enforcement to protect them from danger.

“It’s up to us to make a stand a fight back,” wrote Colt Midkiff. “It would probably discourage a few bad guys. Police or soldiers won’t be there when s--t hits the fan, and the way this world is going, who's to say it won't be soldiers or police we have to fight to keep our freedom and god given rights or our constitutional rights?”

Another writer, who only gave the name Korssp, added that guns “protect me from the government, other countries, terrorism, my crazy next door neighbor.”

“Whatever it is that is attacking me, I have the right to protect myself,” he added, parroting the NRA line. “Taking these weapons always from us makes us an easy target.”

The irony, of course, is that there’s no way for cops to distinguish who are the “good guys” with guns, who are the “bad guys” with guns, and who are the rest of us who don’t want to be in any crossfire. There’s no evidence that Sterling or Castile, or many of the other legal gun owners shot and killed by police were “bad” guys. Sterling had a record of felonies, yet purchased his gun on Monday— Independence Day. Details remain unclear about how he did that.

And, Castile’s girlfriend, Lavish Reynolds, said her boyfriend was the ultimate law-abiding citizen.

“He works for St. Paul public schools,” she said. “He’s never been in jail, anything. He’s not a gang member.”

So why did he feel he needed a gun? Perhaps he simply heeded the message of the nation’s most powerful lobbying group: law-abiding citizens should be armed.

But the results are almost always tragic: Any time a cop answers a 911 call, he now has to assume everyone in his immediate view — the “good” guy, the “bad” guy and even the innocent bystanders — has a gun.

So the incident inevitably escalates.

And, suddenly, the NRA’s “good guy with a gun” is the one who ends up dead.

Monday, July 4, 2016


"Nobody knows how much better I'm going to get.
So ask me how much better I got"
- Michael Ring

I've been watching the Olympic trials on TV this week. It got me dreaming about being an Olympian. I came close in 1996. Not close to being an Olympian, but close to Olympians. In the spring before the Atlanta Olympics the torch was making a publicity tour across North America on its way to its home at the Olympic Stadium. I stumbled across its root in a local newspaper and saw that the flame would be spending a night in Rockefeller Center and then during a live ceremony on the today show would travel down Broadway to the Staten Island ferry. At the time, I worked a block from Broadway in Greenwich Village and didn't really have to be at work until 11 AM. So I woke up early and took the train to the Today Show set. In a corny kind of ceremony they transferred the flame to some torches and some minor celebrities got to take turns jogging with the downtown. I jogged alongside keeping enough distance from the flame so that it's security staff didn't think I was a strange threat. I got to work all sweaty from jogging in the fog but people said I had a glow to me. I guess, as an atheist, I came as close as I ever would get to something that was holy to me. Kind of like Moses in the myth about the Commandments.

I would be just outside the frame of this photograph

In 2004, some of the trials in cycling for the Paralympics were held in Prospect Park. I got to run multiple loops of the park while some pretty badass disabled athletes were going for glory. Some cyclists who were vision impaired were teamed up on a tandem bike with someone who could see better. There were also some athletes with balance problems who were racing tricycles around the park. So yesterday, on a crazy lark I looked at the internets to see what it would take it to become a Paralympian. You all

There are basically two reasons why I will not become a Paralympian. First, the disability criteria are quite specific. I would have to have a lack of legs, not just a lack of motor work nerves going to the feet. But basically the rest of me would have to be Olympic material. That's not me, nor is it a goal. The parts of me that work are just trying to be mediocre again.

But last Wednesday, I went back to physical therapy. They knew my goal was that I wanted to get rid of my ankle foot orthotics. They have helped me walk, walk further and faster than most of the tourists taking up space and time square. But they don't let me run, they keep my toes from dragging but they also keep me from pushing off my toes on each step. So my new physical therapist put me on a treadmill. Slight incline comfortable walking speed. Two minutes on one minute rest. After seven repetitions of that he had me take off the orthotics to see what it was like to walk without them. I felt great and I loved what he said to me, to paraphrase"I don't want to jinx anything, but those orthotics don't really improve your walking very much. We'll get some specialists in here, we might build you new ones or maybe wean you off of them."

That Sunday, I participated in the Hope and Possibilities Achilles 4 mile race in Central Park. I was really looking forward to it, and it totally lived up to my expectations. It wasn't just any 4 mile race, it was a 4 mile race with so many of my new friends in the Achilles running club and I got so mixed up with my old friends, that old world of a gigantic roadrunners club race. I didn't realize I misread my corral assignment and started in the middle of the pack instead of the back. I forgot how much I missed being in that crowd of runners waiting for that race to start. All that nervous energy. Small talk with strangers. But we all have one thing in common, we're here to run. We are part of the herd.

It was great to be back in Central Park for a race. It was so easy to move at my new race pace for 4 miles. My pace was almost 2 minutes per mile faster than when I ran the same distance in February. And this time when I finished I had no problem walking another 2 or 3 miles to where we had brunch. But my fast walking pace is still over 20 minutes per mile.

OK, last week my physical therapist said maybe I can be weaned off the orthotics. Last Sunday I walked over 8 miles and felt they were only slowing me down. So, Monday, instead of taking the orthotics out when I got to the gym I figured I'd see what would happen if I didn't put them in it all. I walked out of the house around the corner got on a city bus walk down the block to the gym and reversed it to go home. No problem. Then Monday night I had a meeting about half a mile away. Just walk there no clippety clop. Tuesday I did it again. To the bus to the gym, then walk all around the neighborhood. Yeah, Sunday June 26th was the last day I wore the orthotics. Enough is enough with those orthotics this slowing me down. I'm not weaning off them. I never was a wiener

Here I am walking to our finish in last week's Achilles Hope and Possibilities 4 Miler. I walked that in 20:34  per mile. Today, I took off my orthotics and alternating running and walking a minute at a time and a 5K race. My pace was almost 22 minutes per mile. This is not gonna make me put my orthotics back in, it's going to make me go back to physical therapy and have them teach me how to run again.

Below, is a short video of me finishing a 2 1/2 mile run/walk. On one hand I can't put into words how good it feels to run without the orthotics on the other hand my form has a lot of room for improvement. Thanks Jay Cee Elle for that video

Also, I'd like to make a little list of things that I could not do two years ago that I can do now.  Some of them require some contraptions that I've goten from occupational therapists and some require some contortions that I've learned from occupational therapists.

  • I can eat food with my hands, or a fork or spoon.
  • I can shave with an electric razor, wash my hands and face and brush my teeth.
  • I can go into a pizzeria, order a slice, pay for it and eat it.(I have learned to appreciate the square slices)
  • I can swipe a MetroCard and get on the subway or bus.
  • I can using urinal.
  • On July 4, 2016 for the first time in two years one month and 28 days I took off my sweaty cloths, took a shower, and put on clean clothes all by my effing self.
  • I have no trouble getting out of a car and can handle some seatbelts.
  • With the new contraption I just got, I can cut my own fingernails.
  • I have one more big goal and then I'll be celebrating my own personal Independence Day

If you've been reading this far I have to ask you a question. After I finished my first marathon in four 4 and 11 minutes I read somewhere that four hours divides the runners from the joggers. I took this a little seriously and it took me seven years and a handful of medical tents to finish my fastest marathon ever in 3 hours and 58 minutes. I was then 36 years old and decided that my new focus would be to maintain my health and break for hours again when I was over 60 years old so I can qualify for Boston. That worked for 16 years. I was keeping fit and running two marathons a year and not having a problem doing one of them in for a half hours. I never really thought it was that important to run Boston, I just wanted to meet that qualifying standard. Now I accept that that's not can happen. So here's the question... I can probably gain entry into the Boston Marathon as an Achilles Athlete. Should I?

Wednesday, June 15, 2016

I'm a New Yorker again.

Not a good visit to the dentist today. I thought this one tooth would've been only one visit and today's visit was the third and I thought it was gonna be a quickie. Just take the temporary cap off, but the new one on, let me go home. Notsomuch, didn't do much today but I found that and I needed to schedule a two hour visit for next time so they can do a gumectomy and drill away some bone.   Ack, I was just going to volunteer to get a head transplant, but my teeth are on the wrong side of my neck for that. FML.

I swiped my own MetroCard. 


I really needed to reset myself from this disappointing dental visit. So when I got to the subway instead of handing my MetroCard to my carer, I tried something new. It's been two years one month one week and one day since I entered the subway like every other adult in the city and swiped my own MetroCard.

Two years ago I was like a newborn. I spent most of my time in bed, and even had to be fed. A year and a half ago I was like toddler, just learning to walk again. But unlike the toddler, I was and I am aware of the joy of being able to walk again.
Today I walked right up to that turnstile, he took out my Metro card and swiped it.  It was ugly, and I'm glad there were no inpatient people behind me, but I did it myself.

Now I'm a New Yorker again. Free to go anywhere I want, independently, with the swipe of my MetroCard.

And I did it almost as good as Hillary. But at least I know tokens are only for collectors now

Sunday, June 12, 2016

Shit people say to someone who has recently suffered a life changing illness (Updated June 2016) (NSFW)

Update June 2006

A couple weeks ago I finished the Brooklyn Half Marathon. I'm getting a lot of congratulations from people who know me and even strangers. They ask what's next and I told him I plan on completing the New York City Marathon. Some people don't know what a marathon really is, so I tell them. Then they look at me kind of crazy and say something like, "Oh, have you done that before?" I respond, "yeah, before this crap happen to me I was preparing for my 30th marathon and this will be my 20th New York City Marathon. Ironically, the last New York City Marathon that I ran I was a pace team leader, and held up a sign that said 'five hours run with me'. This year, I'll be competing as an Achilles Athlete, that means I will have guides assigned to help me."

Then they look at me and tell me that I will run a five hour marathon again or I will be a pacer again. I smile and say something like, yeah... One step at a time. But what the fuck, do they have any idea of the difference between walking the marathon distance in 10 hours and training to run it in five hours or less. NO! Or, do they know something my doctors don't. I don't get it when people just open their mouths and tell me what I will do it again. Do these people know that I can't use a porta-a-potty without help? It doesn't make me feel better when people just open their mouths and say what they think is nice. The doctors, the best doctors in the world, don't know how much more healing is in me. It doesn't make me feel better to fantasize about what I might do. If you want to make me feel better, just acknowledge how far I've come.

The lawyers make us say certain things to protect stupid people from themselves. "Past performance does not guarantee future results." Unless you really know something that my doctors don't you should keep your mouth shut.

Update April 2016

If you are the person who spent their entire life minimizing the time you spend off the couch and now you can barely do your daily activities because your knees won't hold up your excessive weight, don't tell me to rest.

I spent four months in the hospital where I couldn't even roll over in bed, I rested enough. For another year people applauded me because I can stand up, I rested enough.

Now when people tell me the rest it just makes me want to run further.

Don't tell me to rest

Update March 2016

I haven't used a wheelchair in many months nor a cane in a few weeks. Sometimes I see strangers on a bus or in the park using the same kind of equipment I used to have or in a similar wheelchair. It's hard to figure out what to say. At one of the races I helped organize, a husband pushed his wife around Prospect Park, in the type of wheelchair I used to hate, one that was uncomfortable even for sitting and torturous while being pushed over bumps. I 'ran' over to her and told her that I used to be pushed around one of those and now look at me. "I can walk". She said "no my condition is different I'm never getting out of this chair...."   I met well, really. But I realized the most supportive kind of statement isn't always that supportive. It might just remind people of things they just don't want to think about all the time.

I also should mention I have joined the Achilles Running club for a lot of their runs. I've had the pleasure of meeting lots of people with disparate disabilities. I consciously did not say "see you later" as a way of saying goodbye to blind people. But I listened to them and realized that they were saying "see you later" to people all the time. I also learned that people who I just are blind  are not always totally blind. There are many degrees of visual impairment. After one of our runs we took a breather in a playground where my kids used to play. The guide who was helping my new visually impaired friend helped her walk around all of the playground equipment so she can touch it and know what I was talking about. Then she took out her phone and started taking pictures of the slides and ramps. She said she was going to go home upload them to our large screen so she could see what we were talking about. I had no idea....

Yesterday, I attended a big family function where I saw a lot of people who haven't seen me in a long time. They were really happy to see how far I've come. Some of them hadn't seen me since I've been sick and only heard that I was paralyzed. The question I wasasked me was, "Are you going to fully recover?" Or "How long will it be until you're fully recovered". I know, I know they really ment well. They saw how far I came and were excited about my recovery. My answer was vague, "If I can recover as much in the next 20 months as I did in the last 20 months I'll be very happy." But deep in the pit of my stomach, I really didn't like being reminded that I'm never going to be the same again.

Update January 2016

Included in the doctor's letters that they wrote for my disability insurance includes the statement, "the patient does not suffer from any psychological or cognitive impairments." The following two statements come under that category.

  • A friend asked me if I needed any help getting out of the car. I said, "No I'm fine." When I was getting out of the car his hands are all over me. Dude, you asked me a question and I answered it. Why did you ask it, if you're not gonna follow my instructions
  • another person thought it would be a good idea if I went to a certain meeting. Then he called me back and said it wasn't that important because of my condition. My condition does not stop me from making that decision for myself.
Here's the big picture. If I need help, I'll ask for it. Please don't make a big deal out of what you think I can and can't do. I don't know what I can and can't do so what makes you think you know?

Update December 2015

I just realized the same crap came out of this one person's mouth in just one week.

  • He said he didn't know where to sit in the car because he had to figure out where the "cripple" would sit.
  • He was surprised that I walked to a party that was a mile from my house. He said, "Did it take you three hours to get here."
  • I don't have enough strength in my hands to hold onto a pencil. He reached out to shake my hand and when I shook as he said, " Ack, you should shake like a man."
BTW, this was a grown man.

Update August 16, 2015

In one breath someone called me a gimp, and the next breath he said I might be too drunk to drive you can come with me you couldn't get any more fucked up. If I thought he was too drunk to drive I would've gotten the car, and I would've forgotten he said that.

Update July 29, 2015

Don't make jokes that you wish you had a wheelchair. Don't fain envy. Don't tell me you want to sit on my lap. Not remotely funny! And I have to clamp a thing onto my hands so I can hold a fork. Don't look at it and say I wish I had one. No you fuckin don't!

Update May 23, 2015

Last night I was reminded that Tom Cruise is a good actor.  He played Ron Kovic in Born on the Fourth of July.  That scene where he came home from the VA hospital in wheelchair His face as everyone told him he looked good. I cried inside.

Update, May 3, 2015

This is something that's been done by a lot of people who I really care for.  Just because of sitting in a wheelchair and my back is to you and I don't know you're there doesn't mean you could tap me on the head.  I hear fine if you say my name turnaround.

Update, March 16, 2015: 

The worst thing you can do if you see someone you think you know and suddenly in a wheelchair is  to look away.  Yeah, I'm the guy who helped to you unload a truck at the food co-op, or I might be the guy you ran all of the Park with, or I might be the guy who just cheered for you when you ran a race. I am still the same guy!!! You can say hello!!!

I know a lot of you people might be shocked to see me in a wheelchair.  But please engage the brain before you open your mouth
- Well, this might not have happened to you if you didn't push yourself so hard with all that running
Actually I probably would have been a lot worse off or even dead if I wasn't fit when this happen to me.

- Is disability temporary or permanent?
It depends how long I live and go fuck yourself.

- I know someone who has something like what you have.
No you don't, you don't even know what I have.

- I just remembered another one. When I was in the hospital and couldn't get out of bed people asked me if the nurses who bathed were hot.
I honestly didn't think of that until people asked. But it did make me wonder if their moms were hot. 

Okay, The crap above represent shit that came out of peoples mouths who knew me. Below is the shit people say to be to a stranger
I'll pray for you
Really, which God?  The God that put me in this chair or the God that you gonna pray to that will take me out.  I think it's pathetic that these believers assume I'm one of them but I've learned to just say thank you.

Everything happens for a reason
I don't even know if this can possibly mean. And my being punished? Am I suffering because of the fact that someone else got lucky?  Do they think that they has to be some sort of balance in the world and I need to be on the bottom put them on the top? So I just roll my eyes and ask someone to push me away from that person.

I'll add more as people say more shit to me.  Or you could leave your stupid shit n the comments.


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