Monday, March 2, 2015

I haven't run much lately but I just renewed my membership in the Prospect Park Track Club

Apparently I am inspirational.

Last week I couldn't make it to my track club's awards dinner because, well, I don't go out much. In past years I won awards for completing ultra marathons and for service to the club. This year they made up a new award just for me, I was most inspirational. I didn't see that coming, I didn't want to win any awards, so much so that I didn't enter the essay contest until after the awards dinner.

Below is the essay I wrote after awards were given out for best essay.




I didn’t want to enter an Essay contest because I already won.

Back in the early 90s there was no 9+1 program to get you into the New York City Marathon. There was a lottery system and the patronage system. It was a little bit about getting lucky and a lot about who you knew. That’s why I joined the Prospect Park track club, so I could get into the New York City Marathon.

So I figured if I’m going to rely on these people to get me into The Marathon should at least go to a meeting. The first meeting I went to was unlike any meeting of the Prospect Park Track Club ever had after that. It was the first meeting after the death of Harry Murphy. The club was deciding whether or not it should go on without him. It did, and I decided I wanted to be part of this organization.

The club turned out to be a very good fit for me. I was accepted as a mid-pack runner.  When my kids started school, I had more time in my life and I found that I enjoyed volunteering more. This volunteering even turned into part-time jobs. Then my immune system attacked my nervous system.

I learned a lot of things really fast.  I learned a lot about biology and a lot about health insurance, but I also learned that I had friends. I thought that I had people that I run with and sometimes went out for coffee with.  But it turned out that I had a lot of friends.  A lot of really good friends.

You know who you are. You spent time with me, left me voice mails, sent me emails, friended me on Facebook, brought me edible food, or toys that I couldn’t even play with. You brought me news and messages from the world outside the hospital.

Thank you, your friendship was reward enough, I didn’t want to win an essay contest to say that I won something.


Saturday, February 28, 2015

Why the doctor / nurse softball game always ends in a brawl

I just started reading Bed Number Ten. It is Sue Baier's first-person account of a woman who has Guillain-Barre Syndrome.(This book is pretty much out of print, so first I'd like to thank my librarian friend's daughter for checking this book out of the library of the school I graduated from. Teeny world).  These first few chapters are about Sue Baker's trip into the hospital.  Her first day was a lot like mine. We both walked into the hospital and then woke up in intensive care the next day.

Intensive care is a terrible place to be for anybody. But it's especially fucked-up if you're conscious the whole time. But I'm not going to dwell on that. I'm going to recall my first experience in the hospital that I wanted to blog about.

I wasn't really in the intensive care unit. It was in something called the step down unit. I think it's kind of the same thing but I didn't have my own room. I went from the emergency room to a room that I shared with four other men and nurses station. So I was never alone. Every couple of hours someone would ask me if I could breathe and would make me wiggle my tongue. I didn't know until I left but there was a tracheotomy kit above my bed. At any moment they were ready to poke a hole in my throat. But that never happened. They also asked me a few times a day if I was incontinent. Eventually I snapped back "You've been sitting 4 feet from my bed you would know by now, okay!!"  I was actually the opposite of incontinent but will get to that in a more disgusting post later.

I was there for six days. I couldn't really tell how many different men were in the room with me or how long they were there or what was wrong with them. Except for one, we can call him Joe. I just don't remember what his name was, it was nine months ago.

Joe was in the bed across from me. He woke up he blurted out to the world that he had to 'have a bowel movement'. This announcement came from him like a man wanted two more beers before the seventh inning at Yankee Stadium. He told the nursing staff that he just had intestinal surgery and that he had swallowed a camera. He said the camera came complete with a spotlight and showed the surgeons where his intestines needed to be sewn up. He said it cost a fortune and the surgeons wanted to use it again. So he told the nurses to put a bedpan in the toilet.

So things just got interesting, because across from my bed there were three things. Joe, the nurses station, and the patient bathroom. I should add that Joe is a 75-year-old man who weighs about 250 pounds and is only wearing a hospital gown. So I get a great show as he heaved past my bed to the bathroom and sits down. No, they don't close the door. So I close my eyes and Joe's performance in the bathroom reminds me of the Fourth of July. Joe walks out and a nurse's aide walks in wearing a hazmat suit and retrieves the bedpan. This is repeated two more times because they can't find the camera.  I get the same show.

The next morning Joe is visited by his surgeon. The first thing he says is, "Doc, told the nurses to look for the camera but they can't seem to find it." The doctor replied," Are you nuts I was just kidding with you those things are disposable we can never use them again."  Yeah, I was kind of disappointed that the shift of nurses that had sifted through this guys bloody stool looking for a capsule were not there. It would've been exciting.


I hope to continue to update my blog with somewhat random memories from the four different hospitals I spent 135 days in.

Tuesday, February 24, 2015

Slow going, but progress



Above is how I walked in June 2014, when I was in patient at Rusk.

Below is how I'm doing it in February 2015, in my building's hallway.



#FUCIDP

Thursday, February 19, 2015

They said I should write a book

I usually don't do what people tell me to do. So I am not going to write a book. Now that I think about it, there are many people who told me to write a book. Among these people are people who I have made a point of my entire life of not listening to. Come to think of it, if they would've told me not to play on train tracks I would've been dead by now.

But thanks to a lovely anonymous donor at NYU Rusk Medical Center I now have Dragon technology. I'm using it now to dictate to my computer. So I'm going to start updating my blog more often. Sometimes I'll be posting things about my life as it is now. Other times, I will review, stories from the past and the hospital and rehab, Or just stuff.

If you want to read a book, go get No Laughing Matter by Joseph Heller and Speed Vogel. Joseph GBS and Speed Vogel was his best friend. The first half of the book is a lot like the first month of my hospitalization. The second half, not so much. Because I haven't gotten better yet.

I read it while in bed during my first month of hospitalization. At the end of one of the chapters Joseph Heller said "and then I didn't learn that until I was at rehab at Rusk". That was kind of weird because I was reading it while in rehab at Rusk. I stop reading because the doctors were about to do rounds. And when my doctor walked in I mentioned to him that I'm reading No Laughing Matter. He looked right at me and said Joseph Heller was a very nice guy. But things were really quick crazy when Dustin Hoffman kept visiting. The next chapter was about how crazy things were when Dustin Hoffman kept visiting. Really.

A couple weeks later that same doctor came in to visit me and looked right at me and said, 'I was just thinking about Joseph Heller and the craziest day was when Yoko Ono showed up". I told him that I thought wherever you worked the craziest day you could ever have there would be the day that Yoko Ono showed up.

I always thought living in New York was extra fun because you get to do it parallel to the celebrities. But there's other stuff. Because I am lucky enough and to live in New York I've had access to the greatest doctors nurses and therapists in the world..

Sunday, February 15, 2015

Do you think this looks frustrating?

Now you know how I feel all the time




Practice makes perfect

or

With occupational therapy I'm getting better

Wednesday, February 11, 2015

Progress

On May 7, 2014 I walked into my doctor's office. She sent me to the hospital and starting may 8th there is this thing I couldn't do. I couldn't do it for the rest of May and June, July, August, September, October and November.

On December 1st , I started outpatient therapy and was able to do it for 4 seconds. With "maximum guard", I'm was told today.

Today, after I did it for a minute, unassisted, my physical therapist said, " You can sit down now."

#fucipd

Tuesday, February 3, 2015

Shit people say to someone who has recently suffered a life changing illness

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.

Wednesday, December 31, 2014

F.U. C.I.P.D

Fuck you Chronic Inflammatory Demyelinating Polyneuropathy. Fuck you.

In April I was almost ready to run my 30th marathon. In the rest of 2014 I probably would've run by 31st and maybe two more. 

Instead I spent May June and July in a hospital bed. I had my blood filtered through a hole in my carotid artery. I had chemotherapy.  I learned what an EMG test is, Google it, I needed three of them.

I asked my doctors, top doctors, what would have happened to me if I was out of shape?I They said that being in marathon shape help me survive.  Survive?!  That made sense to me. I always felt it was important to stay fit because some random crappy thing could happen to anyone. People get hit by truck's people get cancer people get really sick and if you're not fit it could be the last thing that happens to you.

I spend July, August and a chunk of September in a rehab facility. Really a nursing home with the gym. Not so much fun but I regained enough strength to go home.

I didn't know how wonderful it would be to be home till I was separated from my home. The hospital was like a prison with an indeterminate sentence. I hated being separated from my family. Being visited sucked,I wanted to be home with my family

Now I'm home I'm with my family and I have a little bit of control over my life. I can't do everything I want to do but I do understand that I have a long road ahead of me. I don't know how long the road is but I know all I have to do is keep moving at a steady pace and I'll get there.

Good riddance 2014.

Bring on 2015

Sunday, December 21, 2014

This was my happy thought


I was in four different hospitals in over four months and often thought of myself in this very spot. I'm under the Meadowport arch in Prospect Park.

Sunday, September 21, 2014

It's good to be home.

From and including: Wednesday, May 7, 2014
To, but not including Thursday, September 18, 2014

Result: 134 days

It is 134 days from the start date to the end date, but not including the end date
Or 4 months, 11 days excluding the end date

Alternative time units

134 days can be converted to one of these units:
  • 11,577,600 seconds
  • 192,960 minutes
  • 3216 hours
  • 134 days
  • 19 weeks (rounded down)

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