Friday, August 28, 2015

Loss Leader?

I just recently learned what this phrase means. An example is kind of like this; a supermarket could put milk or bread on sale at a price so cheap they might lose money but they get a lot of people walk into the store that week. I think good museums do something like that too. They publicize a special exhibit to get you in the door.

I yesterday I met with my daughter to the Brooklyn Museum, where the main attraction was the sneaker exhibit. She stopped this photo of me smiling in front of the Adidas Marathon. An issue I attempted to run the 1980 NYC Marathon in. (You probably haven't read that story but here it is,)
 here I am choosing it up in front of the original Air Jordan.  I bought them, new at some giant sporting goods store when they were more down. I wanted a hightop shoe to hike through the Rockies, the American desert in the Alps. By the end of that summer those shoes disintegrated and I threw them away. The exact model I had is currently listed on eBay for $8500

There was also an exhibit about arcade games, reconfigured for Brooklyn. To the left is a picture of my daughter playing a video game where the goal is to parallel park

These special exhibits were cute, and they do attract a lot of visitors. But the fact that I got into the door got me to look at one painting that I really related to.

To the left is Two Ivans and Oksana. The descr takes iption in shot an eye and willd of the painting was extremely educational  "In 1934 the Communist Party established Socialist Realism as the official art form of the Soviet Union. Painters and sculptors working for the state created portrayals of the myth of the Communist utopia in a heroic academic style. In 1964 Viola Pushkarova, a recent graduate of the state-run Kharkiv Art Institute in modern Ukraine, painted this didactic scene of Soviet domestic life, in which an attractive youth rests his head after working hard to feed his family and complete his studies. The calendar on the wall reads “9” (May 9), a national holiday marking the capitulation of Nazi Germany to the Soviet Union and the Allied forces in World War II.
MEDIUM Oil on canvas
DATES 1964

I gave my daughter a chance to look at the mummies that she's seen on more than a few class trips and I sat across from his painting for about 20 minutes. It really struck a chord with me. When my twins would just that age I had pushed him around that museum. If I would've noticed that painting then I would've sat in a chair and fall asleep like that man. Also, it was painted in 1964. In that year I would've been as old as those little babies. It is in a and will will will and in a and now he and in my and he is in and in all will you and I and I and he and I will will will and

So I'm never gonna be the guy who says everything happens for a reason. But I was the guy needed to rest for 15 minutes and found a good spot to do it. So maybe I'll take my son to the museum  and let him bang on the video games and I'll find another object to discover.

Sunday, August 23, 2015


I never thought my condition was that serious.

I knew something was wrong. I did go to my doctor. I went to the hospital when she told me to. I guess that's because I remember the look in her eye and if I didn't convince her I was gonna take a cab from the her office to the hospital she would've called an ambulance.

It was hard to accept that I had a serious condition. Fatigue and pain were are part of my life that I always accepted, because I was am always training for another marathon. I didn't think I had a serious condition when they moved me into the intensive care unit and woke me up every four hours to ask me if I can breathe, I didn't really think about the fact that there was a tracheotomy kit next to my bed. The nurses continually asked me if I was incontinent. But that stopped when I snapped back,"your desk is 5 feet from my bed you'd know already if I was incontinent."

But it took me 135 days to get home again. During that time I learned a lot. I already knew that being physically fit was a good preparation for being hit by a bus or getting a rare disease. I also learned that having access smart doctors is very important. Somewhere along the line I was told that about 10% of the people who walked into a doctor's office with my symptoms would die. I was glad I heard that after I got better and did not die. I just looked it up. In the United States people who make it to the doctor and are told they have GBS have a 2.8% chance of dying. I guess if you include the people who don't make it to the doctor or are not in the United States it could be 10%.

Sweet, tastes like life.
Walking overthe Brooklyn Bridge had been my happy thought for the past 15 months. Some of the greatest moments of my life that happened around that bridge. I've walked across with family, chaperoned school trips, been up there to see the sunrise and one of the first dates I had with my wife was for it's Centennial.

One of my favorite books is The Great Bridge. Every time I cross see the bridge I think of the final paragraph. A 100-year-old woman was interviewed in 1969. She was at a party because men will more walking on the moon. When she was asked what she thought of the celebration she said something like, this ain't nothing you should've been here when they open the Brooklyn Bridge.

Yeah, I'm alive. And I reaffirmed that yesterday, by taking a 10 minute bus ride with my son. We got off the block from the base of the Brooklyn Bridge and we walked to The City. Then we snuck into the Woolworth building because the sign said we want allowed.  Then we walked down to Zuccotty Park (Occupy Wall Street), and enjoyed some chicken and rice.

Yep, I'm alive. So when my son had a sneak into tourist attractions. That's life.

Wednesday, August 19, 2015

I finally shed that tear (of joy)

Last week I held it together when I completed a 5K in just under 100 minutes. But last week I walked. Today in therapy, I did it, I lifted my knees and I ran. It wasn't as fast as the slowest walk, but it was running. And when I updated my Facebook status I cried.

Now I can watch Forrest Gump
! I ran! I ran! I ran! I ran! I ran! I ran! I ran! I ran! I ran I ran! I ran! I ran! I ran! I ran! I ran! I ran! I ran! I ran

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Sunday, August 16, 2015

Shit people say to someone who has recently suffered a life changing illness (updated August 2015)

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.

Thursday, August 13, 2015

I was ready to finally cry (but I did not)

A little over 15 months ago, I was one long run away from attempting to finish my 30th full marathon. Then I walked into my doctor's office and spent the next 135 days in hospitals.

There were many many moments where I wanted to freak out. I didn't let it happen. I read somewhere that people with conditions like mine needed to mourn for what they lost. There was no fucking way I was going to do that. I wasn't going to start crying, because I was afraid I'd have no reason to stop.

I just changed please give it was insulted my thoughts to the moment to the right. To the moment where I can see the finish line.  I don't think I let too many tears out because I still had a focus on forward motion. I had to see.

There I am, only yards away from the finish line of a real 5K. I started 70 minutes early so I finished with everyone else.

I did it to show my kids how strong I can be. I did it with the help of my new friends in the Achilles Running Club, I did it with the help of my old friends in the Prospect Park Track Club. I did it with Larry, Janet and David. I did it in Prospect Park. I did because physical therapists taught me how. I did it under my own power.

Fuck You Guillain-Barré Syndrome.

Fuck You Chronic Inflammatory Demyelinating Polyneuropathy

Fuck You Acute Motor Axonal Neuropathy


Tuesday, August 11, 2015

What would you want?

My kids went away last week. They had an incredibly wonderful time with my family on the Jersey shore. A week was about as long as I can tolerate being without them. I need them to help me get better.

When they came back we started randomly watching Star Trek the next generation, again. Like any good TV show every episode it had at least two things going on. In Neutral Zone Picard and his crew get to meet the Romulans for the first time in this generation. But they also encountered some 20th-century refugees. Three people who were frozen just after they died. They were easily healed and brought back to life by 24th century science.

One of the undead people was a rich man who was said to find out that the future is socialist. Another was a rock star who abused his body into death and is glad to wake up so he can do it again.(When I first saw this episode in 1988, I'm sure I related to that character). When I watched the show this time I related to Claire Raymond, the homemaker from Secaucus New Jersey. She didn't even know she was sick and suddenly woke up 400 years later.

I'm pretty sure if I lived 100 years ago I would not have survived the illness I have now. Just as I'm sure that if I would've lived in the age of Dr. McCoy or Dr. Crusher I would be fine by now. They would simply wave their medical tricorder at me and it would've regrown my axons in a moment. Even Sheldon could regrow my nerves if he had Star Trek technology.

So the Claire character had an embolism and suddenly died. She was dead. Then she woke up 400 years later and was healthy, but without the family she loved. In the simple world of Star Trek, Counselor Troi helped her find her great great great great great great great grandchildren and all was well.

Well it's a little bit more complicated for me. First of all I didn't die, but I have a rare currently incurable neurological condition (acute motor axonal neuropathy) that I am recovering from glacially slow.  So here's the question that I really can't answer.....  And I ask you to other people who've been injured or have otherwise had their vitality stolen from them... 

If you can just go to sleep, and wake up healthy in the distant future but without any of your loved ones, would you? Would you? 

Thursday, August 6, 2015

Forget about customer service, it's clearly a blame game

Mistakes happen. Two days ago I made a mistake. I use the excess right after book my rides because I really don't want to talk to the people of the other into the phone. I really don't need them to repeat everything I say and read it back to me three times. I like to save the MTA 10 minutes of their employees time and just go to their website and book my rides myself. But two days ago I booked a ride for my home address but in Manhattan instead of Brooklyn. I didn't realize it until last night at 10 o'clock when I read the fourth email they sent me to confirm this ride. I didn't listen to the two phone messages nor did I look at the text I sent me. I made a mistake and then or ignored all my chances to correct it.

There are other kinds of mistakes. A few times I called access ride after my ride was 10 minutes late to ask where it was. I was told it was in Jamaica Queens, or Washington Heights, or The Rockaways. The dispatcher told me I would just have to wait. That all the empty access right vehicles driving by my house were not for me. The system wasn't flexible, I had to wait in the cold, or the rain, or I can try to hail a cab and not be reimbursed for the tip.... This wasn't a mistake that could be fixed I had to deal with it,

But you know what pissed me off this morning, that they said that if I would've called in my reservation and it would've been a mistake on their part they could have fixed it. But since I made a mistake it could not be adjusted. It was all about blame.  So, FUCK YOU Ack Stress O Ride FUCK YOU. 
I took the train.

It's been 15 months, and if I would to be asked what one thing would start making my life normal again it would be taking the subway.  It hasn't changed much. On the way there I sat next to a cute three-year-old girl who got scolded when she wanted to sit on her knees and look out the window. And then a woman of a certain age got on the train and I almost stood up to give her my seat. I did ask her to step out of my way so I can get out the door. I told her I was new at walking again. She smiled. I think she knew I wanted to give up my seat.

On the way back it was even refreshing to be cornered by a complete outgoing Jesus Freak. His rant had no beginning and end, but it did put me into that familiar place that I've missed so much.

Below what you can see what happens when you take a few extra pictures. That's my subway happy dance. Yeah, I know there was gonna be a bonus, I got to see Grand Central station again.  Also, I was happy I was knocking a miss this appointment. It wasn't just a physical therapy session. You see those pictures above, it's hard to tell but I'm wearing a thing: ankle-foot orthotics. I have severe foot drop and it keeps my feet at a right angle. It keeps me from tripping over my own toes as I walk. I was on my way to pick up ones that were custom-made for me with little hinges. I'm wearing them as I speak I could push off my toes as I walk. I can land on my heels when I walk. This is the end of me walking around like on the child of a zombie and a Frankenstein. This is the beginning of heel-to-toe walking. The next step is running. Running :)

Tuesday, August 4, 2015

Get on up (update August 2015)

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.

Monday, August 3, 2015

My moment of Zen

I'm honestly not sure what a moment of Zen is. If you want you can correct me in the comments. but I feel like I was having multiple moments of Zen.

Last year I missed one of my favorite races. The New York Road Runners Corporation puts on an event only for local clubs. It's a lovely race because it's smaller than the rest of their giant events. Specifically because you have to be a member of a local club to run it. So all the people were only interested in training for a certain race or getting in there 9+ one so they could get guaranteed acceptance into the NYC marathon are not there. Those other people don't get in the way of me seeing all the familiar faces that I have seen for years running races in New York City.

I also like it because all the clubs put on a little picnic so we hang out after the race. And it's not just a race it's two races because the genders are separated. We get to watch each other run. A few times I ran the men's race and then the women's race so I can get in some more miles. And a few other times I ran all the way to Central Park and then started the race.  (I just reread my blog post about the other times that I ran to Central Park via Summer Streets, I impressed myself.)

Last year, when I checked into the hospital in early May I remember kinda thinking that I would be fine by the beginning of August, but I wasn't. In fact my wife spent July picking out a long-term rehab facility for me. That process is kind of like how parents choose a college for their kids. She said the second best facility for me was on 103rd St. off of Fifth Avenue. I want to go there just so I'd be near Central Park. I had the physical strength of a slice of pizza but I figured someone could push me over there and I could watch the races.  That never happened.

It was a long summer in rehab. I often closed my eyes, took a deep breath and imagined myself in Central Park. There I am with my eyes open.

Experiencing the moment I had been literally dreaming of for a year.

But it was more than just that. Getting over to that shady spot and sitting down was doable. But while I was sitting there I had absolutely no idea how I would get up. It took a lot of energy not to worry about that. I knew I was surrounded by people who would help me up but I did not want to worry about that, it took a lot of mental energy just to live in that moment.  I didn't want to worry about how it was good to get up until I had to get up.

But there I am being the moment that I had imagined.

Thanks Anne, for bringing your giant camera. In all I

Thursday, July 23, 2015

You can go back

Did you ever go back to your first school? I got to do that a few years ago. My mother-in-law still lives across the street from my grade school. I was visiting her on election day and went in with her to vote. Everything looks so much smaller than I remember it. I thought the gym was huge, we used to play 4 basketball games at once in there. I thought the whole school would line up after lunch in that giant gym. But when I went back as an adult 20 people and 10 voting machines filled up the whole room.

That's how I felt this Monday when I went back to the hospital where I spent the bulk of last summer......  I stepped off the elevator on the ninth floor and waited patiently at the nurses station while they were doing their paperwork. Then my favorite nurse walked around the corner.....

Let me digress and tell you why she was my favorite nurse. First, there was a Saturday morning where a physical therapist came to take me to the gym. The unusual thing about this was that it wasn't on the schedule that was on the whiteboard in my room. He said it didn't matter if anyone came to look for me the nurses would send them to the gym. But when I was in the gym for five minutes Lioudmila came storming into the gym. She picked up the intercom and said "Hello security - I found him." She then grabbed my therapist by the collar, which was awkward because he was 18 inches taller than her, and just said if you ever take one of my patients I'll have you killed.....  Second, she often join me for breakfast. Not just to past the time with me, but she would circle extra things on the menu so that the next day she can have dessert with me. And yes her name is Lyudmila. And I told her this true story that when my daughter asked me what her runner-up name was my wife quickly snapped back Lyudmila, thinking that is the ugliest name we can come up with. We even told the story to my nurse Lyudmila in front of my daughter. She thought that was funny because it was also her mother's name. 
So Lyudmila walked around the corner with a clipboard, she barely glanced up at me as she asked ,who I was looking for. "YOU". I am not much of a hugger, but there was hugging. And then the first thing I said was, "you're so short," then I saw the rest of the nurses and aides and said "you're all so short!" You see, I spent about five or six weeks on the ninth floor of the Hospital for Joint Diseases and none of them ever saw me stand up. When I was there, he took one physical therapist were three untrained aides to get me from a bed to a wheelchair. I was basically a noodle.

Then I went downstairs to the gym. It looked so frigging teeny Below is a video that was taken of me about 13 months ago. That hallway was endless, I remember it being a city block long and in my mind that is how far I walked. It took two people to help me get out of a wheelchair and three to keep me from falling back into it.

It was wonderful to see these therapists again, They were really happy to see me, not just because of me, but because they never get to see people who recover that much. In acute rehab they send people home while they're still getting better. And I got to show them what a lot better looks like.

When I was there I realized that was never gonna go back to my old job. I wanted to become a physical/occupational therapist. I asked one of them what it takes to become one, how much school? She asked me about my educational background and I said I have a Masters in Social Work. Ack, you'll have to go back to undergraduate school and take about a years worth of premed classes. Then three or four years of a competitive program in physical therapy, then an internship, then an entry-level job.  So I'll be like 60 and in debt I start working. Naw, I'll come back and volunteer. At the time I thought I'd be coming back to help push wheelchairs. But I'm not ready for that.

So, I went up to the recreational therapy department and reintroduced myself. Right now the plan is that I'm gonna be going back once a week. I don't know exactly what I'm going to do, maybe I'll help people update their blogs like they did for me a year ago. I don't want to belittle the educational expertise and background that recreational therapist had, but I think with my meager MSW I can do what they did best, spend some time with some patients and make them feel good.


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