Too Late

I have a lot of Google news alerts setup. The last one I set up is there any news article that pops up where covid-19 is mentioned in the same article as Guillain-Barre syndrome. It brings me a lot of information and I'll get to that later. But last week (And sadly all too often) an obituary popped up. It was a link to this article in The New York Post about a couple that died within a couple of days each of other in the same hospital.  The article mentioned that Robert Samuels had GBS back in the early 80s. " In 2011, he published the book “Blue Water, White Water,” about his experiences with paralyzing Guillain-Barré syndrome and the medical system in general."

If there's such a thing as an official obituary,here it is.

So without leaving my chair I downloaded the book.

I've been reading every book I can that is a first-person account of what it's like to go through GPS. When I was in rehab at Rusk I read No Laughing Matter by Joseph Heller. It was a good one to start with because it was written by a writer and one of the sentences in the book started with when I was in rehab at Rusk. My doctor also remember him.

There was also Bed Number Ten. I got through it but I really didn't enjoy it. 99% of it was about This Woman's thoughts while she was locked in her body and missing her religious holidays. I could not relate. I was not that sick and I'm not so into crafting. Looking through all my reading devices I'm reminding that I read Going Full Circle by Philip Taylor. There are other books and they're all so many blogs and vlogs I even kept a list of them here

This book kind of caught me off guard. It shouldn't of but it did. It shouldn't have because I didn't read the subtitle of the book. I only used limited information to assume what the book would be like. The title meant nothing. (even after reading the book it still meant nothing, to me).   I just assumed from Mr. Samuels' nature from his obituary and from his picture  that it was going to be a very gentle book.  I mean, look at the guy. He really looks like a combination of both my  grandfathers.   I was just assuming bet if I were to meet this guy we were just have a bagel together and talk about baseball or something. Assuming is wrong. I also didn't read the subtitle of the book. " A harrowing true story of a man struggle to survive in one of America's top hospitals."

A sweet old 83 year old man did not write this book. He wrote it 30 years ago about a really terrible period In his life.  When he had GBS he was a little younger than I was when I did. His son had just started college. We had that and more in common.  But we also had in common was our anger. Not necessarily at what happened to us but at the process of what we had to go through. The way we were treated.  Physically, he was in much worse shape than I ever was and he was hospitalized 40 years before I was. I had a couple of bad days, but he had a lot of them and they were much worse.  In this book you didn't hold back any four letter words in describing his feelings.  I didn't have to get much into the book to realize that it's kind of the book I would have written but he writes much better than me.

So I've been reading books on my phone . but I just now downloaded the Kindle App and I discovered I can even borrow books from the library and read them on the app. This app is a better lot then OneDrive provided by libraries . I can highlight chunks of words and then share them as emails or really any regular way you share things

He described his first of many EMG tests . I had five . I described mine here

"The zaps begin, slowly and weakly at first, and then they pick up. The jolts are making the muscles in my neck jump and burn. I’m surprised I don’t smell smoldering flesh. The pain is horrible. I’m weeping. If I could, I’d be howling. “Hold on,” the Van Dyke tells me impatiently. Hold on how, you stupid shit. My hands don’t work, nothing works, and my father is dead! He’d kill you if he could see what you’re doing to me."

I tried to pay attention everything the doctors were saying . But sometimes I just couldn't accept that it was going to apply to me. This is how a wordsmyth does it

"He’s rattling off more percentages, but I’m having a hard time following him. It’s like dreaming about odds on horses that might run next week at a track you’re not planning to visit."

Below is how I felt sometimes ..... That this is all temporary. Especially when I was in rehab. I was surrounded there by so many people who are never going home. But it did remind me of something to the opposite . I was hospitalized during the Ebola crisis in Africa . An American Medical worker came back to the United States when I was in rehab. I kept my mouth shut but I was really pissed off when they put her on TV riding a bicycle around her town . I was still in a wheelchair , why did she get to be on TV because she can ride a bicycle ? then she had lunch with Obama . Damn, I was still in a wheelchair, I wished I had Ebola . I was thinking that if I ever get better from this they should let me sleep in the Lincoln bedroom,

"But my condition is temporary, I remind myself. They’re all worse off than I am. The guy with the stroke can’t talk. Enrico and Joe will never be normal. I’ll make a full recovery. I’m like someone temporarily living in a homeless shelter while waiting for his inheritance to come through."

"Then she’s gone. Everyone gets to leave, but I’m here twenty-four hours a day, seven days a week. That’s the terrible loneliness of illness. There should be relief patients just as there are relief nurses. When do I resume my normal life? This patient is burned out! Phone down to the bullpen and warm up someone else!"

There were a lot of other parts in the book where I felt I can relate to the author. Especially because he was from a town just north of the Bronx and in the hospital at Columbia University. There were many moments where I thought it would be a good idea to contact him . I could share his book with other people I know that have GBS and then maybe we can go meet him. or he can simply be a guest at one of my meetings . Or maybe I could have just sent him a note telling them how I can relate to his book. Then I remembered meet people for lunch and we can't have meetings and how I found out about it; by reading his obituary . Fucking Covid-19

My first virtual race

I'm a really cynical person. That said, when someone tells me they're running a virtual race, in my mind they're just going to a trophy store. They're not for me. If you want a medal and a t-shirt you can go shopping.

But because of covid-19 there are no races now and my running club was organizing a virtual race that was free and had no medals. it also replaced the race that I used to direct, it also replaced the race that I had been training for for a year.

So let me review a little. A little over six years ago I found myself in the hospital because I was diagnosed with Guillain-Barre syndrome. My recovery was a little bit of a roller coaster. Here's a picture of me on my birthday on June 7th 2014. I guess I kind of look happy. But it's not because it was my birthday. I was happy because the day before I had the central line removed from my carotid artery on my right side. Plasmapheresis is a very unpleasant process.  Getting the tubes taken out of the side of my neck was the best birthday present I ever had. But in that picture I am literally propped up. My arms and hands are where they are because they were put.  Having tubes surgically installed into the arteries on the side of your neck is really unpleasant.  I guess there's a reason they only do it to paralyzed people.

So I walked into the hospital on May 7th 2014 and on September 17th  I came home from rehab  In a wheelchair.  In 2017 I managed to finish the New York City marathon. I was 5th from last person  and it was glorious. But I walked. Two weeks after that Marathon I began my first a five surgeries to get my hands to work better. The last surgery was in June of 2019 and the last time I saw the surgeon he looked at me and asked "What's next?"  I told him I wanted to run. He surprised me and told me he knew the guy who would get a team together to make that happen. A sports medicine guy. A guy who can get me into sports physical therapy. Sporty orthopedics. Podiatry.  All the Avengers.

So in the fall I left the world of Rusk Rehabilitation rehab and transferred over to the Sports Performance Lab at NYU. The plan was that I was going to get new ankle-foot orthotics in August ( I had to wait five years since getting the old ones so insurance would cover them)  that were made of titanium and have a hinge so I can run in them. I need the orthotics to run because I still have pretty bad foot drop. I use up a lot of energy lifting my knees higher than everyone else because I don't want to trip over my own feet because I can't lift my ankles The long-term goal was is to qualify for the Boston Marathon as a mobility impaired athlete. That would mean means running a 6-hour marathon. As opposed to the 9 hours and 45 minutes it took me to walk New York.

Not me

In physical therapy I got to use an alter-g treadmill. It wasn't like the treadmills they got me on when I was in Inpatient Rehab. With those they used straps to connect me to the ceiling that did not really work with my boy parts.  An alter G uses air pressure to hold you up from your waist.  It not only relieves you of weight it makes you unable to fall. So it was easier to run and safer. About the third time I used it I was able to run a mile at my goal marathon pace. I did cry,

I used to say that training for and running a couple of marathons a year prepared me to recover from Guillain-Barre syndrome. Now I feel that  having dealt with Guillain-Barre syndrome is prepared me to qualify for Boston, a goal that is just at the Horizon for me.

In  early March I ran a hilly crowded 5K. It took me an hour and 5 minutes, just five minutes faster then walking back in November. But then covid-19 happened and my physical therapy stopped. The gym closed. I've had nothing to do but run. And I've been running. I've been increasing my speed and my distance. Saturday I did an LSD run. Long Slow Distance.  It was a beautiful day so I avoided both Prospect Park and the East River bridges. I ran down to Brooklyn Bridge Park and under the Brooklyn Bridge and the Manhattan Bridge and back.  I ran just over ten miles and it took me almost 4 hours.I rested since Saturday because I really wanted to see how fast I can run a 5k. I really wanted to see if I can break an hour.

This was a virtual race.  Most of my teammates ran anywhere and anywhen they wanted.  They use their GPS devices to make their own course. I don't have a GPS thing and I was not into doing that.  I went to the starting line of the course that I designed at the time the race was supposed to start. (Actually, I started about an hour early because I got there early and I got cold).  I waited there for someone who looked like they cooperate when I asked, "Hey, I'm about to run a race would you mind saying the word "GO"'.  I got the full On Your Mark Get Set Go!


So I was supposed to be running this 5K by myself but I was never really alone. The park was really crowded. So much so that we could never have organized a 5K oh, it would have been too many people in our way. Or we would have been in the way of too many people. And a couple of my friends / teammates did see me along the way and kept me company from a safe social distance. I even finish the race with my friend Josh. Currently we're on the same team. But we used to be on another team together. We were Sharks, but that is another blog post that either of us might right

Below is  my rambling post-race Facebook video. Here's a link to it on Facebook where you can see  or leave a comment https://www.facebook.com/ChickenUnderwear/videos/10158435162492220/

Hey, I had published but I just went back here to edit. I forgot something very important. My finish time! The last November I walked a 5K in an hour and 10 minutes. In March I tried to speed up and run and it took me an hour and 5 minutes. My goal was to break an hour.  56:56 BOOM

The New Normal

“The New Normal” I really hate that term. Hate. almost as much as “agree to disagree’,, but that's another subject.

6 years ago today I stumbled into my doctor's office. I didn't know then but I was lucky. I was lucky she diagnosed me correctly and immediately with Guillain-Barre syndrome. She sent me off to the hospital where they were waiting for me in the emergency room. yada yada yada I was admitted into intensive care and got worse really fast. 5 days of IVIG, rehab,plasmapheresis treatments some more IVIG and back to rehab.

They thought that would do the trick and stop me from getting worse. But it didn't. I got worse and rehab,. That really wasn't supposed to happen. did everything they were supposed to do to stop me from getting worse.But I got worse. So in the hospital I spent a couple of days laying there doing nothing And dear reader, when I say laying there doing nothing please do not think I'm exaggerating. like today a lot of people can't leave their house so they say they're laying there doing nothing. I was basically a quadriplegic . I was able to wiggle my hips and shoulders a little. My neck and face and head we're okay. I was not a vegetable. that would indicate I was in a vegetative state. I was fully awake and alert. I literally could not move a muscle and had no reflexes. Med students lined up to tap my knee with a little hammer. One of them commented that I was just like his cadaver and my doctor punched him in the chest to remind him my ears worked okay. They gave me a special button so I could call the nursing staff if I needed help. It was really sensitive and I was able to tap it with my head. I didn't know it but there was a tracheotomy kit in the room with me the whole time. They were concerned that the paralysis would pass my shoulders and I would be able to breathe on my own.

I asked one of my doctors if they had a big room upstairs with a giant oval table and lots of windows where they all sat around and talked about me. She said yep, and we got guys on TV screens joining us from London and Tokyo and Paris. So I guess I don't have to get a second opinion from Columbia University. Nope he's in the room too.

The doctors came back to my wife and me with the plan. An off-label non FDA-approved chemotherapy. They shared all their information with us. Like stats on how many people who were more or less like me got better and how long it took. And the likelihood of me getting violently ill from the chemo.

I felt comforted by the fact that a bunch of really smart doctors were talking about me like I was a challenging puzzle. None of them knew me and that didn't matter. Fixing me was there reason for going to work in the morning, I was important

They kind of had to tape the pen to my hand and lift my arm so I can sign all the waivers to allow them to inject the chemotherapy into me. And they kept telling me that my hair might fall out. They kept telling my wife that my hair might fall out. Both of us had pretty much the same reaction. Who the fuck cares if he has hair anymore? Will he walk? Will I feed myself ?

Well, I could walk. damn, I can run oh, it's at half the speed I used to run but I can run. I can hold a fork. I can brush my own teeth. I can get on the subway or an airplane. I'm not so sure about driving, but I live in Brooklyn. I can't lift heavy things but I can't hold a beer. I adjusted. I'm not 100% happy. but I could walk and I'm certainly not dead. When I was in the hospital and they told me I'd be fine in a year, I jokingly replied “ but I'm in a Friday spot, I gotta move my car!” But I never got to move the car or even go back to work. I've adjusted to what I hate to say is The New Normal for me

Kind of gets me thinking about what's going on on our planet right now with covid-19. We got almost every smart doctor and scientist in the world trying to solve the same puzzle. Working together and independently eventually there will be a solution. What things are going to change. there's still a lot of unknowns. so we might have to accept it and I hate to say it is the new normal.

So people! someone who's been through with this shit it's kind of obvious. life's not going to be the same. right now people are dying and we don't want that to keep happening. that can't keep happening. there have to be other sacrifices. Given a choice I'd rather sacrifice 50,000 person road races and baseball games in arenas and luxurious cruises over our elderly.

Today I read the obituary of the first person that I've met who died of covid-19. Not a family member, not a friend at all, just someone who's hand I shook once. In Brooklyn he was kind of a corney celebrity, But a few years ago my running club had its Awards dinner at the Grand Prospect Hall. When people started dancing I figured I'd sneak out and give myself a tour of the rest of the building. I wasn't the only one with that idea and the owner happened to be in his office and gave us a tour. He was really proud of the place. it was only 10 minutes or so but he was a really nice guy. I bet his family and the people who knew him well miss him.

COURAGE

Yesterday I did my long run. I ran into Manhattan via the Manhattan Bridge, wiggle the way through Chinatown and the Civic Center and return home by the Brooklyn Bridge. my plan was to turn back when I got to Manhattan and run back over the Manhattan Bridge. the streets of Chinatown were deserted, so I thought I'd push it a little.

When I started my Ascent of the Manhattan Bridge I started thinking about how many times I've crossed that bridge lately. how many doctors visits. How many times I was in a wheelchair which was strapped to the back of some van being bounced around on that bridge. More recently how many taxi cabs.

Then I got distracted by this billboard. I remembered that I was crossing the Manhattan Bridge. Terrorists cross the Brooklyn Bridge. New Yorkers cross the Manhattan Bridge. This billboard put was here for us.

It reminded me that's all of us things weren't going according to plan they weren't going right at all. that this was the time to find our courage.

On Thursday it'll be 6 years since I was diagnosed with GBS. I've kind of gotten used to finding my courage. But here in New York it's only been a couple of months of dealing with covid-19. We need regular reminders

2020 Achilles International Indoor Relay Virtual Marathon Team BM

Dear Achilles Athletes and Guides,

I am so excited to virtually run 26.2 miles with you all this weekend! 

Here’s how it works. 

There will be Four Team of Eight Runners (including one hand cyclist!). Athletes and Guides will be paired up together to run indoors virtually. See guide and athlete pairings below. Each team member will be responsible for running 3.1 Miles or a 5k -- one team member will have to run just a bit longer to make it 26.2! 

Athletes and Guides, please connect to find a time to virtually run together indoors. You can run or walk around your apartment, run in place, walk, do high knees or jumping jacks. Any type of indoor activity counts -- as long as you’re moving! It is not necessary to record your time on a GPS watch, but rather estimate your time and distance based on your pace per mile. If you normally run at a 10 minute per mile pace, then 10 minutes of indoor activity counts as one mile. I’ve paired the teams up so that if all participants run 3.1 miles (plus the one runner who will do a bit more), then all teams should be able to break 4 hours as a team! You can do your run all at once or you can break it up into 2 to 3 blocks if you wish. All runs/walks should take place on Saturday. 

Athletes and Guides- Please schedule a time to connect over video chat and do your run together. You can use Zoom, Google Meet, FaceTime, whatever you wish. I just ask that you please get videos and pictures running indoors over video chat and that you WEAR YOUR ACHILLES SHIRT IF YOU HAVE ONE! Please send me your pictures and videos and post them to Social Media and to Strava using the hashtags #achillesindoormarathonrelay #GoAchilles #AchillesStrong #AchillesTogether

I have designated a team Captain for each team. Captains- Pick a team name! Also, please collect results from your team and report them back to me! 

If an athlete and guide choose to do their virtual run outdoors, PLEASE RUN ALONE. This is a virtual event and runners should not be running with partners or guides. Please respect all local and state laws, wear masks and strictly enforce social distancing. 

Remember… this is a virtual fun run and not a timed race. The most important thing is that we come together as athletes and guides, encourage each other via video and have fun running a collective 26.2 miles as a team!! 

So excited to be virtually running with all of you this weekend! Get some rest and let’s tackle those miles! 

Go Achilles!! 

BOYD and DAVID- Please run 4.2 Miles Virtually (That's 6.75K for you Canadian Runners!).

All others should virtually run 3.1 Miles or a 5k

MICHAEL RING- You are the Team Captain.

Athlete	Guide 1	Guide 2	distance	time
Boyd Dunleavy	David Honick		4.2	36:10
Michael Ring	Larry Sillen	Arnold T Lau	3.1	1:02:00
Kieron Raganooth	Michael Anderson		3.1	27:18
Jill Schreier	Karen and Kevin Fittinghoff	Paige Brabant	3.1
Declan Rayn	Joe Sorbanelli	Austin Dunn	3.1	28:12
Benisse Lester	Harriet Lester		3.1	54:00
Zoe Heineman Khalap	Talia McKinney	celine dupuis	3.1	38:11
Anthony Butler	Thomas Barbe	Taylor Fogg	3.1	29:04

Well, above all the instructions that was sent out and the table with everyone's distance of assignments and guides. heading everyone's times as they've been coming in. Here is my video that I made at the halfway point of my run. I ran by myself from Park Slope to City Hall and back. My plan was to go over the Manhattan Bridge but my body was on autopilot and brought me to the base of the Brooklyn Bridge. my 5K was time and was entirely on the Brooklyn Bridge. It went from Brooklyn to Manhattan name was BM

My Route                                                            

Here are  Larry Sillen photos …. He ran on a treadmill

See the links below for the photos and 3 videos.

https://photos.app.goo.gl/StgzCGAhiejA9an49

https://photos.app.goo.gl/91JtSg6rFPfqyn7i6

https://photos.app.goo.gl/joY3hfeYqMpjZCPJ6

Alas, Arnold did not share is post run snack with his teammates. 

https://photos.app.goo.gl/Qu7ns1zHKQtvXVvz7

Arnold was my other teammate he ran in Queens

This is one of the segments of Arnold's run. having nothing to do with our virtual Marathon indoor relay it's apparent that he ran this in one place in a very small circle. But his GPS put them all over the place. I used to professionally measure race courses by the by USA Track and Field standards. often they were people who would tell me my course was inaccurate and they would show me their Garmin’s  as evidence. this is why I didn't argue with them

Zoe sent this photo and her Strava data.

Talia made a video and took some photos 

Boyd ran in London!  Ontario!!

Kevin and Karen Jumped rope for 3.1 miles



Austin ran around Huntington Horbor



Declan ran in Central Park. A "classic loop"





Thomas Barbe had a great view




Taylor ran on NYC's West Side




Kieron was making that treadmill spin!!



This is how Anthony relaxed after his run. Let's take a deep breath a sit there too.

Updates in physical an occupational therapy (NSFW and TMI)

April 2020 ( progress comes in Leaps and Bounds)

Over there is a blurry self portrait I took displaying my left hand. for the most part it's useless. Not really useless. I've had three surgeries on that hand. It could do two things. hold my cell phone. the knuckles were actually fused into place at the specific angle easy for me to hold my phone. More importantly, it can clean the Holy Grail. literally and figuratively see below more information on that.

That we can do something new. Mostly thanks to the two surgeries I've had on my right hand my left wrist can wear a watch. yeah that picture displays the shit eating grin of a 56 year-old man who just put his own watch on.

And I'm glad I got that watch. cuz now that the gyms are closed I have no choice but to go back to the basics when it comes to exercising. I'm running.

Just before covid-19 changed everything I decided to push myself a little and see what happened if I just tried to run. I found that I could do it. It wasn't much faster than my walking and I was really exhausted but I made it around The Reservoir in Central Park. and now I'm doing nothing but running. With no physical therapist telling me to be careful, I’ve really been pushing the envelope. two weeks ago I made it up to five miles in Prospect Park and last Sunday I decided to avoid the crowds of Prospect Park and try to run up to the middle of the Brooklyn Bridge. It was more doable than I thought. I went back and did it again this Sunday thinking I'd run all the way to Manhattan and back. But it was too crowded because t wasn't Easter anymore. Next week I'll probably go over the Manhattan Bridge. The view from there is better anyway. You get to see the Brooklyn Bridge

And I'm kind of glad I did bring a watch when I ran yesterday. I've been feeling my running has been getting more efficient but it's hard to tell. The only time I ran with any type of timing involved was the last 5K The NYRR organized back in March and it was crowded and hilly. And only slightly faster than my walking pace was. But yesterday, I strapped on my watch just to do a quick loop of Prospect Park. Trying to get in 3 and 1/3 miles before it rained again. That turned into an epic fail. About a mile into my run the phone call I missed was from my wife telling me that there was a tornado warning in effect and that I should find shelter immediately. I then got to run through an fantastic thunderstorm that started with hail or sleet. My measured mile was two minutes faster than I used to walk. Still 19 minutes per mile but I felt good about it. Now if I can bring it down to a 15 minute mile and do 26 of them I could qualify for Boston as a Mobility Impaired Athlete. I NEED TO RUN A SUB 6 HOUR MARATHON!

For everybody

Back before covid-19 I used to get a little upset with the authorities when I saw a flag at half mast. I felt the deceased was done a disservice because didn't know why the flag was at half staff. I get emails and texts. early every morning from the city, state and federal government telling me that alternate side of the street parking is suspended or there's extra traffic or the schools my kids don't go to anymore or closed for a religious holiday that nobody observes. But if they're going to pull the flags halfway down I would think they should send out a little notice telling us which governmental employee died in the line of duty. Sometimes, I would look it up and figure out who passed.

Well today I had to jump out of the house to make a quick trip to the hardware store and the post office. I saw the flag in front of my kids old school at half mast and for a second I wondered who had died. then I remembered that I was wearing a non-medical face covering and being very conscientious not to touch anything. it is the era of covid-19



But this pandemic isn't closed over yet and we've lost hundreds of teachers, police officers, MTA employees, sanitation workers Etc. Everybody walking down 7th Avenue know somebody who is sick, and everybody is no less than 1 degree separated from someone who passed away.

Anyway, when I got home I was greeted by this wonderful artwork in the doorway of my building. There will always be Joy.

And on my way home and on my way home there were still these beautiful flowers

Pay Them Anyway

Not everyone is currently financially affected by the Coronavirus.

 You Know Who You Are

 Maybe you can reach out to the people that usually work for you part time. Your barber, your housekeeper, the babysitter, Your gardener etc. You know who I'm talking about. The people who aren't being paid

 Maybe you can pay them anyway. give him a call, there's PayPal, Venmo, Zell. 

Because you can.

Not everyone is currently financially affected by the Coronavirus.

 You Know Who You Are

 Maybe you can reach out to the people that usually work for you part time. Your barber, your housekeeper, the babysitter, Your gardener etc. You know who I'm talking about. The people who aren't being paid

 Maybe you can pay them anyway. give him a call, there's PayPal, Venmo, Zell. 

Because you can.