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.
video
And hang out in the waterfall

video



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

FUCK YOUR SECOND AMENDMENT RIGHTS




This is different and the same
.....................................................................................................................................




GERSH KUNTZMAN

NEW YORK DAILY NEWS

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

MORE EFFING PROGRESS

"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 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.

Tuesday, June 7, 2016

Best birthday present ever! Ever!!!

The last time I saw it my physiologist was in December. He told me I needed to be back in six months. So, what the hell, I scheduled a visit on my birthday.

My visit to my doctor's office at the Rusk Institute  started really well. I got there a little early and stoped by to see my old physical therapist. Jenna got me from wheelchair-bound to being able to walk comfortably without a cane.  She gave me the confidence to try to do the things that I didn't think I could do. I'm glad she was able to come out and say hi and it's a good thing she was busy. Because when I gave her my finisher's medal from the Brooklyn Half Marathon we were both going to cry. Since I'm not sure if I could cry and walk at the same time I hurried up and went down  to see my doctor

There are certain moments that get stuck in the repeating loop in my mind. One of them was when I was in acute care and having my first relapse. Dr. Ahn saying, "I think you have the chronic version of GBS and we will have to treat this more aggressively." "Chronic", "aggressively" and GBS in one sentence. NotSoGood. I never held a grudge against him for promoting me to chronic. I was only there a few weeks before I got another promotion and became acute. (I don't know, which is worse having a chronic condition, when you have to live with for the rest of your life or in acute condition, which is really bad just once?)

Anyway, the first thing I did when I saw her Dr. Ahn was give him my other Brooklyn Half Marathon finisher's medal. (Yeah, I have good friends who gave me their medal so I can just give it away.)

Then, Dr. Ahn measured the strength in my legs. He noted that in the last six months they significantly improved. Significantly Improved. Significantly Improved!! My progress has been coming in itty-bitty increments. It's so hard to see for myself how I have been improving.

But I have been improving. Two years ago I needed help to roll over in bed two weeks ago I walked 13.1 miles without stopping.

Don't ask me how much better I'm going to get. Ask me how much better I got.

I'm going to start my next chunk of physical therapy in the Sports Performance Center. I am an Going to get treated like an athlete again.

Wednesday, June 1, 2016

Focus

The little update on the results of the Brooklyn half Marathon.  Of the 27,410 people who finished the Brooklyn half I finished 27,403rd. I personally knew three of the people who technically finish behind me. My average pace was 21 minutes and 40 seconds per mile, which is still two minutes per mile faster than I ran a whole mile a month ago. Below are some of my favorite photos that I found on Facebook. 
This was just after the 13 mile mark. Just after I turned onto the boardwalk and was joined by so many of my teammates. They said I was like Rocky going for a run and being followed by all the kids in Philadelphia. But I wasn't focused on what was behind me, I was busy changing gears from running to walking.




Just after I crossed the finish line being greeted by Peter Chaccia of the New York City Road Runners Club. He has been the guy who make sure everything goes right on race day. That was kinda my old job.







Getting my medal. Just like the 27,402 people before me and the seven people after me.









And then the photo ops quickly began. Peter grabbed me and brought over Michael Capiraso, the CEO of the roadrunners club. I don't have the pictures but someone walked over to me and had me pose with them who I'm told was a state assemblyman and then the community board leader wanted to have a picture with me.

And on the entire course I was continually being filmed by my friend Josh. I'm not sure if he's making a documentary about me for some sort of short story with me as the star.

I didn't shed a tear. Although I thought I would. Now when I saw the finish or even when I got that medal. I was ready to, but I was to focus on not falling down. I almost choked up a little this morning when I met a bunch of my GBS friends and they congratulated me. Some of them saw my Facebook status the morning of the race. 

 For everyone who helped me up.
For everyone who could not get up.


Above this line was written the day after the race
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Below this line was written the day before the race

On this date two years ago, I couldn't tell you what hospital I was in without checking my records.

On this date one year ago, people applauded me because I could stand up and rotate myself 360° without holding onto anything.

Last week, I could not hold back my emotions when I told a room full of GBS survivors that I would be participating in the Brooklyn Half Marathon

It's been hard to focus lately. And when I say lately, I mean for the past two years. Guillain-Barré syndrome... Chronic inflammatory demyelinating polyneuropathy.. Acute motor axonal neuropathy... They are all conditions that affect the motor nerves. But who's to say what's going on in my brain. Maybe this peripheral neuropathy has nothing to do with my cognitive function. Or maybe I'm still recovering from all the shit that happened to me in the past two years. Maybe I have PTSD, but I don't have the time to find out. Sometimes, I find it hard to maintain a sustained thought. Sometimes and having a conversation and I forget what word I'm about to say. I told this to my neurologist and she suggested actual sleeping pills. Yeah maybe I'm a little better, but I'm still a little bit out of whack upstairs.

Whatever, the day after tomorrow on the be running completing the Brooklyn half Marathon. I'm will walk I half a mile to the starting line and then I'm gonna walk around the Brooklyn Museum / Botanic Garden then around Prospect Park and then all the way to Coney Island. 13.1 miles. It will happen. My training hasn't been much. Last week I covered 10 miles into chunks on Thursday. And a week before I completed a 6.2 mile race. I'm pretty confident I'll get to that finish line. I'm not thinking about the start, I'm not even thinking about the finish line. I'm focusing on that park bench that's going to be 10 or 20 feet from the finish line. All I keep thinking about is crossing that finish line and getting to that bench and crying like a baby.... Yeah, I'm focusing on that moment where I could let it all out.

I think a man enough to admit that since May 7, 2014 I have been no more than three deep breaths from completely losing it. And by losing it I mean having an out of body temper tantrum or crying fit that I'm afraid would never end. That's where my focus has been going. It's taken a great deal of mental energy to just keep my head on straight. Okay, just saying that made me feel little better.

If you want to keep track of me you can use this app you don't even have to know my bib number just type in my name. Michael Ring, or you can go on Facebook and follow my two friends arre going to chaperone me for the whole race, Nicoletta Nerangis and Josh Pesin.

By the way, this is at least the 13th time I'll be running the Brooklyn half Marathon. I say at least because I'm sure I was a bandit more than once. In 2013 I actually managed one of the water stations. I was supposed to do it again in 2014 but I vaguely remember answering the phone and saying "I am in intensive care you have to find someone else to do this." You can also read about me in last Sunday's daily news.

So it looks like it's going to rain on Saturday. Fine! Let it Reign O'er Me!



I don't sing out loud very much. But on those rare occasions where you can be alone in a park in New York City, when it's pouring raining, I would look up at the sky and sing the chorus.

I wonder if they knew it was Global Running Day?

G

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