Friday, April 24, 2015

Bobby Fisher / Harry Murphy

If you're looking for information about a chess player you spelled his name wrong

In 1992 I joined the Prospect Park track club.  Back then, I only had one thing in mind.I heard that being a member of a local running club could help get you into the New York City Marathon.( that turned out to be true for me in 1994 but that's not what I'm talking about today.) I wasn't interested in meeting people to run with or making friends.  I just wanted to make sure I would get into the Marathon.

So, I ran my first New York Road Runners club race in February 1993.  At this point I don't really remember any details about the race.  Except a couple hours after I got home my phone rang.  I had an extended conversation with the person on the other end about the race.  When I hung up my wife asked me if that was a family member?  No, it was the Vice President of the club I just joined... Some guy named Bobby Fisher.  He really cared about how I did, he knew what was my first race and he wanted to make sure I had a good time.  Not a speedy time, what really mattered to him was that I enjoyed myself..  I suddenly realized that I had to get more involved with this club.  I just moved into a new neighborhood and these were the friends I wanted to make.

I just googled Harry's wall and I found my own blog post
I went to the next membership meeting.  It was in the ceramics classroom in a local high school.  Everybody was sitting on dirty tables.  But that wasn't a big deal.  Apparently, this was the first time the club met after it's President had passed away.  I never met Harry Murphy, but in my whole life I never met so many people who were personally affected by one person.  People were in tears, 30 or 50 people were discussing together whether or not the club should go on without him.  I didn't involve myself in this decision but I knew I was observing something beautiful.  I watched people decide that they needed to honor this man to continue his work.

How can I not by a red shirt and run for this club now?

Well, Bobby died last fall.  I'm told on one of the last days he was conscious he said that I must be pissed at him because he never visited me in the hospital.  No, I was never pissed.  And I got to tell him that today.  Because his ashes are buried within the roots of the tree was planted in his honor, right behind a spot called Harry's Wall in Prospect Park.
Thanks Nicoletta

Harry, I never met you but I'm glad the club continued in your honor.  Bobby, I know you eventually became President of the Prospect Park Track Club but when I met you you were Vice President, and am very proud to hold that title now.

You know, there are statues and plaques all over Prospect Park.  Maybe one day someone will realize that this tree was dedicated to Bobby Fisher and then want to know who he was and find this blog.  This a lot of people out there who quietly made the lives of other people better.  Harry and Bobby were two of them and am glad I knew one of them.

I hope to be remembered like Harry and Robert

I have the digital version of this photograph only because it was hanging on the wall at Bobbie's memorial.  It was there because it was on his desk

Thursday, April 23, 2015

Celebrity Sighting

I spent a little time in Prospect Park this afternoon and saw someone who I think is one of the most accomplished athletes that gets the least amount of attention.   I bumped into my old friend and running buddy Louie Rios.  You can read about him here in the New York Times.  Or if you're interested in real journalism and read about him here and here.

Luke Redmond took this photo
Here's a picture of me  and Louie.

The funny thing is that on my way to the park a guy was calling to me and said are you the gentleman that blogs and is usually in a wheelchair ?   A lot went through my mind... First, I blog about a lot more than being in a wheelchair, most of my blogs are about running or being a dad.  But not so much recently, I guess.  But, really this guy called me a gentleman and he's read my blog how does it connect those two dots.  Me… Gentlemen??

 Kinda weird being the celebrity that was seen on my way to see my celebrity sighting.  What was weirder was that whole first celebrity sighting took place in front of John Turturro's house.

Oh, by the way this is a picture from last month.  
I walked to that spot today. 

Wednesday, April 22, 2015


My excess ride drivers have been pretty nice lately.  This morning there was only one lane in the Brooklyn Battery Tunnel but was still better off than taking the Manhattan Bridge in the driver and I chatted the whole way.  On the way home from therapy the driver actually came early.  And just as we were getting it on the FDR's radio told him he had to do another pickup.  Not too far, 245 E. 24th St. I didn't know if I was going to be the next drop off but we still weren't far from the 23rd St. entrance onto the FDR.

And I'm glad I had a nice driver as we had some fun together.  He was following his GPS and it told him to head downtown on Second Avenue, then simply make a left on E. 24th St.  unfortunately he did not see the sign on E. 24th St. but said that Dead End.  The official express ride GPS did not know that E. 24th St. did not make it from 2nd to 1st Avenue.  Google knows.

You see that little gray line just to the left of the red dot.  That means there is grass there.  It wasn't the end of the world we backed out when around the block and pick up our next passenger.

Then the problem started.  She was going to Bushwick.  We jump back on the FDR and got a one-stop later so we can get on the Williamsburg Bridge.  The lower Eastside was in gridlock, so was Williamsburg.  After dropping her off we drove Bed Stuy and Crown Heights get me home.  Even though I got picked up early took two hours to get me home.

When I got close to my house I told the driver that if he would've taken me home first the other passenger would've actually gotten home sooner.  We could've taken the traffic free FDR to the Brooklyn Battery Tunnel.  After dropping me off they would've not had to dealt with any rush-hour traffic to get her to Bushwick.

One could only dream. :}

Monday, April 20, 2015

They're talking about weed a lot on the news today

When my kids were about six or eight we decided to go up to The Cloisters on a perfect fall day.  It was a nice trip.  But the thing that stands out in my mind was something that happened right in front of our house.  My daughter saw a giant pile leaves and stomped right into it, kicking them in the air.  My son then announced to the world "hey, that's a great idea."  And then followed literally in her footsteps.  It was super cute.

Now roll back the clock about 35 years.  When I was slightly older than my kids are now. My parents took me out to dinner and left my sister home.  That was weird so I was waiting for something else to happen.  Halfway through the meal one of my parents paused and said ,"We need to ask you a question.  Have you been experimenting with drugs?"  I've always been quick on my feet and I came back with the truth.  "No, but now that you mention it, I think it's a good idea."  It all worked out okay.  I never got big trouble, neither did any of my friends.  Eventually I found other things to do with my free time.  I guess not having so much free time helped a lot.

So my first long-term roommate in rehab was a retired New York City judge.  He let me know that a lot of lawyers and judges would be visiting him.  This led to a lot of lively conversations.  One evening one of them offered my roommate some medical marijuana.  He kind of freaked out and it would have helped his condition anyway.  But then the conversation turned to whether or not pot should be legalized in New York State.  I hadn't really thought about it until they asked me to join the conversation..

It suddenly occurred to me that very soon my kids will probably try to buy some pot.  When it's illegal they have to buy it from a criminal.  That's what makes it dangerous. They might get robbed or they might get offered other things that are not really in the market for.  On the other hand you try to buy beer the only other things for sale in that store are things like milk and eggs.  So while I have no desire to smoke pot I have a real reason for her to be legalized. 

Wednesday, April 15, 2015

I really haven't met a bad excess a ride driver

Looking in excess ride trip is a pain in the ass.  People answer the phone program to repeat everything you say but really don't see the big picture.  Fortunately, there's this thing called the Internet.  You can book your rights online.  However they still call you to confirm your online booking.  Why why can't they send me an email.  Why does my phone have to ring.  And last night I got an email that only my right home what was happening from rehab.  What the fuck.  You send me this information but it's too late to poke a ride for the next day.

So I get through to the one phone number that's being answered at 9 PM and they told me to go back in an hour.  At 10 PM they told me to call back in two hours.  At midnight they told me that I should get a ride to my therapy but I should check it 8 AM for my 11 o'clock ride.

Needless to say I didn't sleep well.  And 8 o'clock I woke up and called and did get confirmation that I would be brought to rehab.  When I got in that right I realized I had a dream.  I dreamt that they were going to send me one of the new SUV vehicles that was specially meant for power chairs.  Not so much.  I even told my nice driver about this dream and asked hem if the SUVs are going to accommodate scooters..

The drivers that he hope not because all the drivers hate the SUV vehicles.  He said they don't like sitting next to the passengers in a wheelchair.  He said I would be exception, he wouldn't mind sitting next to me.

They honestly put up with a lot of crap.  I couldn't imagine spending a day driving around New York City.  Let alone stopping and helping disabled people.  On both ends of my trips today the drivers came on time and took the fastest route to my destination.  They were polite cheerful and obviously cared about getting me to my destination quickly.

On my right there the lift actually broke when I got rehab.  Without hesitation the driver got out and used a crowbar to release the lift and gently lowered me.

I went to the MTA's complaint webpage and left a complement.  Sadly it's probably as effective as leaving a complaint.

And by the way, whenever I get off the bus I say goodbye to the driver by saying I hope your next passenger is as nice as me.

Saturday, April 11, 2015

Guillian Barre Syndrome (GBS)... Chronic inflammatory Demyelinating Polyneurophy (CIDP)...... Acute Motor Axonal Neuropathy (AMAN)

What the fuck is the difference?

In any case, I was only mostly dead.   Unfortunately, Miracle Max isn't around to give me a make-believe cure.  Fortunately, I have good doctors.  

Skip ahead to 40 seconds.  And then again to a 1:10,  Celebrate small victories.

A little less than a year ago I thought it worst I had Lyme disease.  I dragged myself into my doctors office and was quickly informed I had Guillain-BarrĂ© Syndrome.  A couple of weeks later I had a relapse and heard the word chronic.  After second relapse I had chronic inflammatory demyelinating polyneuropathy.  I got home from rehab and started playing with the Internet.  A lot of the other people who had CIDP had a lot more problems than me.  They were suffering from a lot of pain, I have no pain.  So further tests showed that only my motor nerves are affected.  Which means I have the variant of GBS called Acute Motor Axonal Neuropathy.

Go ahead, Google AMAN.  Nothing  on the first 20 screens.  Maybe this blog post will change that.

Just this on Wikipedia.  The syndrome typically presents as a progressive flaccid symmetric paralysis with areflexia, often causing respiratory failure. Electromyographic studies and nerve conduction studies show normal motor conduction velocity and latency with decreased amplitude of compound muscle action potentialsF wave and sensory nerve action potentials are often normal in this illness. Pathologically, it is a noninflammatory axonopathy without demyelination.[1] Antibodies attack the coating of the motor neurons without causing inflammation or loss of myelin. It does not affect sensory neurons, so sensation remains intact despite loss of movement.

I don't think it really matters what you call it, I got what I got.  If anyone out there has any tricks on how to regrow nerves leave me a comment.

Thursday, April 9, 2015

What's up with this?

First I hope I'm not violating any HIPAA rules by posting this picture so it's on purpose really bad and you can't really tell what's going on.

That's me on the left side of the picture.  The back of my new electric chair.  That's not the thing.  The weird thing is the two guys over my right shoulder.  They usually leaving about the same time I'm showing up for my weekly physical therapy appointment.

You can almost tell from the picture but they wearing exactly the same clothing.  There wearing the same genes, the same T-shirt, the same button-down flannel shirt, the same vest, the same jacket, and they are going to put on the same hat.  Every week since the fall these guys have been dressed the same.  It's really unlikely that they share the same clothes because one is about 6 inches taller than the other.

So I'm not so worried about HIPAA regulations and I asked my family if they know what's going on with this.  It could be a creepy twins thing, and maybe my twins would know more about it.  That conversation didn't go anywhere.  Then I thought out loud that maybe it's a relationship thing, that some people who were partners might get into dressing the same.  That's when I lost even more coolness, "What makes you think they're gay!"  Oh shit, now I am homophobic.  Who knew?

Sunday, April 5, 2015

I know I did one thing right

I'm not saying I don't do a lot of things right but this one I know I got right.

Daddy daycamp began almost as soon as my kids were born. My wife was working from home then she went back to school.... It was my job to keep the kids occupied and I loved it. I waited until they were eight to quit my full-time job, I should've done it the day they were born. But that's another story

I embraced being a dad by embracing New York City.  Every day with my kids was like a new day in a new city I just acted like a tourist and had fun.  We became familiar with all the iconic institutions that make New York City great.  We were regular at the American Museum of Natural History, the New York Hall of Science, and all the institutions of the New York Zoological Society.  I realized that these places were just for staring at cages or artifacts.  They were places to work or volunteer.

It occurred to me that when I was a young teenager my summer opportunities were limited to two different kinds of things.  Hanging out at the beach/pool club or getting a crappy job.  I did a little of both until I was about 19 or 20.  Hanging out was not good for much.  I had jobs fast food restaurants and retail establishments.  Looking back those jobs were worse for me than doing nothing.  If your first job is a fast food restaurant you learn to hate going to work, you hate your boss and you hate the customers.

When my kids was still in diapers I noticed the youth guides at the Prospect Park Zoo.  They were cheerful kids who would hang around exhibits and help engage my toddlers.  I asked one of them how young they could be to start volunteering there.  The kids said 14, then I knew where my son would be in 10 years.  You see, as far as I'm concerned when it comes to domesticated animals in the cage that out of the cage it's just vermin.  We did the gerbil thing, we also had a few turtles and a handful of fish.  As far as I was concerned it would've been much more efficient and less smelly if we would've just flushed money down the toilet.

Someday, he might narrate the show
Last winter, I didn't push my son very hard... I gently let him know that he was now old enough to be a Discovery Guide at the Prospect Park zoo.  My prodding was very gentle.  He was almost 14 and I knew I pushed him too hard he would push back.  (Because I remember when I was 14 my parents would've told me to be careful on train tracks I would've been hit by a train.)  I just sent him a link and let them check it out himself.  I would've gone with him to the orientation but I was in intensive care.  So maybe the fact that he went by himself made it work out all for the better.  When he came to visit me in the hospital he told me about the program.  I will always remember his exact words.  "Dad, it's a tiered program, if I stay for all three years they might let me narrate the sea lion show. "  Bingo, I knew my son was not to make minimum wage at a fast food restaurant.  He was going to make friends and gain experience at the zoo.

He was there to three days a week all summer.  And I spent the whole summer in the hospital.  When the summer ended he switched to a weekend program and was there every Saturday.  Last week I got a new electric chair.  Being pushed around the zoo wasn't that fun but it was nice when I got to drive myself there.  This Sunday I son took a busmens's holiday and gave me a tour of The Zoo.
Apparently, this goat is called Ringo

With pride he told me the species name of most every animal in the zoo he also told me they were called.  He told me which sheep were friendly and which ones were grumpy.  He introduced me to all the other volunteers, and I got to meet his boss.

There was a lot of good feelings going around.  My son was proud of himself and I was pretty proud of him to.  And in a little way I was pretty pleased with myself for steering him in that direction.  I was also very happy to be out of the house in my new Electric Chair

Saturday, April 4, 2015

Easter is a mystery to me

Eggs....  Rabbits....  Lots of rebirth symbols, and I do know that if you could go to church once, you do it on Easter.

But one thing I do know is that you can't get  a slice of pizza on Christmas or Easter.

And I just saw this clever skit below on a rerun of Saturday Night Live.

Yeah, if you want frozen pizza go to your local pizzeria and buy a pie.  Wrap up each slice in tinfoil and put them in your freezer.


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