In the course of 15 minutes three or four people stopped to take photos of the cherry blossom tree across street from my house. I decided to take pictures of the three trees that are on my side of the block. (There used to be 4, but dog owners let their pets kill it.)
The trees are about to bud but without any leaves you can see that they still already bear fruit. There are about a dozen plastic bags stuck in the trees. Sadly this is typical of all the trees in New York City.
Soon it will get a lot better, "New York’s ban, which would begin next March, would forbid stores to provide customers with single-use plastic bags, which are nonbiodegradable and have been blamed for everything from causing gruesome wildlife deaths to thwarting recycling efforts." Says the New York Times
Yesterday I had Occupational Therapy from 8 until 9 AM. My OT is on 38th St. right of first Avenue and it was a beautiful spring day. After OT I decided to walk around aimlessly until I felt like stopping. I started walking north past the UN and thought maybe I would grab some lunch and needed in Central Park. Then I realized I can grab some lunch and take the trim over the Roosevelt Island and eat it there
As I walked down to Four Freedoms Park I realized I'd be looking back at the view I stared at outlying hospital window. As I approached the southern in the Roosevelt Island I got all geared up to scream and yell and curse the disease that ruined my life. I thought I would scream like a maniac and then fall to the ground and cry some Park Ranger picked me up. But I couldn't do that, I could inflict myself on a handful of tourists that were there enjoying the view.
Instead, I acted like it just another tourist and took this crappy picture. Anyone around me I was taking a picture that included the World Trade Center the new Copper uilding the UN and the Empire State Building
But I was actually taking a picture of two building special to me. I tried to label them, but it doesn't matter. To the left is the main NYU Hospital building where teams of doctors kept me from dying with blood infusions plasmapheresis and chemotherapy. And more centered in the picture is the NYU Center for Musculoskeletal Care where I had just finished my Occupational Therapy and I've had three of the four surgeries. Without OT and the surgeries I wouldn't of even of been able to hae picked up the phone to take this picture. So I guess I was able to replace anger with gratitude. Yeah, I'll always be angry at the disease they tried to kill me and left me disabled. But I am thankful to the doctors that kept me alive and have been recombobulated me.
And hey, on my way back to the subway I took a little era walk nd realized I was quite near the spot where I had waved at my mother when she was at the Hospital for Special Surgery and Cornell University Hospital about 20 years ago.
So tourists if you're reading this?! New York City isn't just a place to come take pictures of iconic buildings. It's a gathering of some of the greatest doctors in the world. I'm really grateful that I would hear
I have to give a shout out to two life-saving products First, the Aqua Total Hygiene glove. It is designed for bathing but it makes it possible for me to achieve toileting. And then of course there are Shittens, the as seen on Shark Tank life-changing product that has changed my life. Yes, changed my life!
The sole purpose of my third surgery was so that I can turn my wrist and bend my fingers in the position necessary to wipe my own ass. But it's going to be the next surgery that will allow me to hold toilet paper with my thumb and the rest of the fingers. So I'd like to thank the makers of these products for allowing me to go out and travel without looking for the never to be found bidet in a public place. Thank you, for creating a product that means I don't have to rush home to use my own bathroom. Thank you, for creating a product that means I don't have to spend every not home moment worrying that I might have to rush home and use my own bathroom. Anyway, in case the above products are unavailable or I'm not around functioning bidet I can always take a shower and floss myself with these. I get them on eBay for $.99 apiece. Next week I have surgery number four. It's the start of getting an opposable thumb back on the left-hand so I won't need any of this crap to clean my crapper
Update October 2018
It's been a while since I updated this. Last November I had a titanium rod installed in my right wrist to completely stable as it and then in January I had a tendon transferred. The surgeons disconnected the tendon that used to move my wrist and attached it to my fingers. So with my right hand I can open and close my fingers but I cannot move my wrist at all. Things this allowed me to do as long;
I can easily use a fork or spoon or a pen
I can reach for things and hold them. Things like cups and telephones and peoples hands
it's easier for me to open doors
I can confidently use a credit card or a MetroCard
I have an easier time using a touchscreen phone or a remote control
But the rod in my wrist is at a 15° upward angle. It helps me do all the above things but it prohibits me from holding my hand down. There's one very important thing that I cannot do with my right hand that makes me care very little about the things I can do. Occupational therapists call it "toileting"or, "being independent in the bathroom". Let me put this into regular adult language. Since May 7, 2014 I have been unable to wipe my own ass. I've been dependent on healthcare workers and installed a bidet in my home. Traveling has been tough because I have to have these things installed at the hotels I go to or in the homes of the people I stayed at.
My left hand was in worse shape now my right hand. The wrist worked poorly in one direction only. If I hold my hand out and face my palm up I can lift my hand. But if I turn my arm over and have the palm face the ground I cannot lift my hand from the wrist. Also, the axonal nerve damage going to the fingers in the left hand was pretty bad. Atrophy kicked in and the fingers pretty much stiffened up in a very open position. So after consulting with amazing surgeons and occupational therapists we decided to put some screws in my fingers so instead of them being stuck in a useless position they are now stuck in a useful position. You can't really tell from the x-ray which was taken from above, but four of my fingers are now permanently bent at a 75° angle. My left hand is permanently cupped as opposed to flat as it was before the surgery
So yesterday the cast came off and as soon as the surgeon gave me the green light I took my new hand out for a test drive or a "dry run". It worked! It worked! I didn't cry then, but tears are running down my face as I dictate these words into my computer screen.
A couple of years ago I had a good talk with my friend Josh about my rehabilitation. I told him that all my breakthroughs in abilities were nothing without the ability to white my ass. He understood and referred to that activity is the Holy Grail of rehab
A couple years ago my son told me I was a toddler because a toddler is defined as a human who was learning to walk. He told me I was the toddler anymore when we finished the New York City Marathon together. I was very proud of finishing the marathon but I still felt like a toddler. Toddlers can't independently go to the bathroom.
So dear reader, tomorrow I will attempt to finish my 32nd marathon. My third since recovering from GBS. Tomorrow I'm going to leave my house knowing that I can use any bathroom I want.Can you imagine a good that feels? You won't have to use your imagination because I'll update this blog and let you all know how it "goes"when I reach my "#2 goal"
Update: November, 2017
I might've finished a marathon three weeks ago, but that was a leg thing. They don't work that well but I was able to make them work for 9 hours and 52 minutes. But my hands are almost FUBAR, [Almost Fucked Up Beyond Any Repair]. My elbows work fine. But my wrists and fingers not so much.
If I hold my arms out with my palms facing towards the ceiling I can lift my fingers up. But if my palms are facing down I cannot tell my hands upward. I can make a fist but there's not much strength behind holding the hand closed. Also, the slightest amount of pressure can stop me from opening my hand from the fist. That adds up to not much function. When I reach for things my hands hang limply from the wrists, and when that happens I can't close my fingers. It's been 3 1/2 years since GBS took the motor function away from my hands and my neurologist told me that at this point no amount of time or Occupational Therapy is going to bring them back.
So it's time to make what works work better. And move around the working parts to bring some function back to those fingers. Two weeks ago I underwent surgery to fuse the joint in my right wrist. Now when I reach for something my hand does not flop down, it stays straight and I'm able to close my fingers. When that heels I'm going to have the tendon used to move my hand around moved to the back of my hand so it opens up the fingers.
To the left is a picture I was able to take of my right hand before surgery. That's me trying to make a fist or trying to lift my hand, it looks the same. To the right is what they did to my hand.
It's been a little over a week and I still haven't had the stitches removed and it still in a cast. But now I don't have to put a contraption on my arm to hold a fork, a spoon or a pen.
Update: October 17, 2017
Another surprise update in that I got to regain a little part of normal life without thinking about it. Coffee. Coffee! Yes coffee!
When my kids were born I immediately started using a travel mug to drink my morning coffee. I just figured a lid would be a good way to protect my coffee from my kids. Oh, I'm sorry I mean protecting my kids from the coffee. Then I got to realize that I like it that way because I can take my time and it would stay hot. In the hospital they often woke me up at 4 o'clock in the morning for medication or just to make holes in my arm and then I wound up being awake until they brought breakfast at 8 AM. I had no problem ingratiating myself to the nurses so that they would bring me coffee from their personal pots. But I didn't want to make them stand there and bring it to my lips so I drank it with a straw.
I kinda got used to drinking everything with a straw. I guess weaned myself off of using straws for cold drinks. And a while back I announced my happiness when I was able to hold a beer with my hands. But at home I kept a straw in the coffee. I'll have to admit it never occurred to me to stop using the straw because I had so many in the house. But last week I had one left and I figured I wouldn't buy any more straws. And so this morning I just drink my coffee out of my travel mug like a regular person. I think I'll be using the travel mug for a long time. I like my coffee to stay hot and since it takes all ten fingers to hold the mug, I don't need to burn myself.
One more small step towards getting my regular life back.
Update: June 2, 2017 I didn't think I'd be updating this again for a while, but today I had a little breakthrough. Using a credit card is a lot easier than cash because paper money and coins tend to fall out of my hands. It's much easier to just hand my card to the salesperson. But sometimes you have to handle the card yourself. In those cases,using the chip reader is a lot easier than swiping because it's easy to stick the card in the slot wait a moment and then pull it out. But until today, the ATM machine at my local bank didn't really work for me. You have to insert the card and pull it out rather quickly. My fingers haven't been that good at pulling it out rather quickly. This challenge hasn't stop me from trying, but if I try to many times the card will not work anymore. But I'm not shy, I had no problem going into the bank and asking the nice manager for some help. But today, I forgot that it was a challenge. I just walked up to the machine stuck my card in and out in the proper amount of time and then press those little buttons and got my hundred dollars. #FUGBS
Update: December 10, 2016........................................................ As a review, I walked into my doctor's office on May 7, 2014. She set me straight to the hospital with a little note that said I had Guillain-Barré syndrome and by that evening I was unable to stand on my own. When you can't stand you can't stand in front of the toilet. So in the hospital, and in rehab, and for a while after I got home, I had to use a smooth wooden plank to slide from a wheelchair onto a rolling commode. A few months after I got home I was able to keep the commode over the toilet and get myself there with a walker. But all this time my hands were healing much slower than my legs so when eventually I was able to get on and off the regular toilet I was still unable to cross the finish line and use toilet paper So while I came home from rehab on September 18, 2014 I haven't been independent in any sense of the word. It was about a year before I was able to use a fork and a spoon myself, or bathe myself, or brush my own teeth. But in the year beginning the summer of 2015 I slowly gained the ability or purchased the tools so I can handle most of the activities adults take for granted. I had the round doorknob replaced to the back entrance of my apartment building with a lever and a pushbutton combination lock so I didn't have to use a key. I also put a giant rubber band on my apartment door so I can pull it closed and got a funky keychain so I can get in and out of my own apartment without leaving the door unlocked. So basically, by the end of the summer of 2016 the only thing that kept me from spending my days alone like an adult was the fact that if I needed to use toilet paper I would be as they say 'Shit out of luck.'
So I figured out which bidet would work for me and had it installed. Then my wife and I were figuring out all the other little details that would need to be arranged for so we wouldn't have to pay someone to hang around with me all day. We bought a new coffee maker (I'm sorry planet Earth we got a Krups machine) .... Figured out how to leave the lids a little open so I can have lunch. I even asked the staff at the YMCA where I work out if they would mind helping me with some of the contraptions I need to pull the bars on some of the devices (When they smiled and just said "that's why we're here", I was overjoyed). One of the last little humps that I had a figure out how to get over was putting my own socks on. You wouldn't think that would be that hard except I still don't have the grip strength in my fingers to pull them up. If you've been paying attention to my blog you would've known that on September 25 I fractured one of the little bones in the foot. I didn't need a plaster cast, but I did have to wear a boot that was secured with Velcro straps. Since the neuropathy in my hands hasn't healed as well as my feet I was unable to get that boot on and off. But earlier this week I was given the green light by the orthopedist to just take it easy wearing regular shoes. So, exactly 31 months from the day I walked into my doctor's office and was told to hurry up and get to the hospital because you have a life-changing illness, I walked out of a different doctor's office knowing that I can begin to resume a normal life. This week I was able to say goodbye to the person that I had hired two years ago to help me do almost every activity I needed to do. Now, I can wake up, get out of bed, and do everything you do in the bathroom. I can make myself coffee, get dressed and leave the house. I could choose to go to the gym or take a bus or subway in a different direction. With a little bit of advance planning I can go into a restaurant and by myself lunch or go into a grocery store and bring some food home. I can compare my disability to slavery and institutional racism. But I think I can appreciate what it's like to have your freedom restricted.
Home Alone Out Alone Fuck you GBS I'm free at last
Update October 22, 2016 ..................................................... It's been a long time since I updated this post. Maybe too long. Maybe I should've bought a bidet months or years ago. But now I have one.
Now that I purchased this model from
Overstock this pops up as a Facebook ad.
So my dear reader, you only have to use the tip of your imagination to think of the indignities I had to go through about once a day because my fingers and wrists are is about as useful as a big of carrots. Now, I can get on up whenever I want to go, as long as a home. It might be a long time, if ever before I get to update this post again. But a lot of people only sit down on their own toilets.... ..... And if anyone says I told you so, I'm you spend a few days at your place thanking you....
December 2015..................................................................................................................................
On the third to the last time I visited my friend Paul in hospice, I witnessed something no one should ever have to see. We were chatting for a while he asked me to hand him the buzzer for the nurse. We ran so many miles together he didn't ask me to leave because he had to pee. When the nurse came in he said he needed some help getting to the toilet. She then said something like, "We talked about that Paul, remember what happened last time, your legs are too weak, we have to bring you a bottle." Nobody should ever be in the room with someone who was told they already stood in front of the toilet for the last time. Fast-forward a couple years and I'm in the intensive care unit this time. Remember, I walked into the hospital, but once I was there they did n't let me walk around too much. The morning of my second day I buzzed for the nurse and told him I had to pee. I made it to the bathroom but when they let go of me in front of the toilet I almost hit the ground. They said after this we'll bring you a bottle. In that moment I was with Paul again
For a couple weeks I was able to hold the bottle, and then neuropathy started to affect my hands worse. For four months while I was hospitalized and a few more months at home I couldn't even stand and be at the same time. Then for a while I was able to stand, but I didn't have the hands to deal with the rest of the process, so I still needed a person and a bottle. A couple months ago I was able to work out the process of peeing, but pants with zippers and buttons not so much.
Last night I decided to push the envelope a little. For the first time in almost 19 months I just got up, walked to the bathroom, took a leak, and came back to the living room without asking for help. This is big. This means, that if I wearing the right kind of pants I could use a public restroom by myself.
October 2015............................................................................................................................................ I need to give this one more update. And it's also time to describe some of the processes I had to go through in various hospitals. You don't really have to read this, because it is NSFF(not safe for work) and TMI (too much information)
When I went to the emergency room I was just wearing shorts and a T-shirt. I difficult to be moving. I actually get my shorts on for about five days in intensive care. Then one evening a couple of nurses aides came over and said hey you want to take a shower? I had been out of bed and for five days, and wasn't thinking much about showering but it sounded like a good idea. They put me onto a thing that was like a combination of a wheelchair and a beach chair. They rolled me into a little room that had a shower and then they peeled me out of my clothes. I said out loud goodbye dignity", because I actually sort floating away like a balloon into the hospital For the past year and a half I've been struggling to get it back.
Where do the boy parts go?
When I walked into my doctor's office back in May 2014 I knew I had problems. But one of them like was myself. Prior to all the weakness that occurred in my arms and legs, I had incredible pain. Kidney stone level pain. And I've had kidney stones and have been told I be prone to more. So I keep oxycodone around. When I had this pain I self medicated little. I didn't know that oxycodone doesn't work on nerve pain, but since the pain to go away I just took more oxycodone. It didn't help, it did make me happy but it did make me really constipated. So being a quadriplegic and totally clogged up was not a fun combination. All my fifth day in the intensive care unit I mentioned to my nurse that I got a problem, that I had not pooped in five days. She said yeah we know if nothing happens tomorrow it's all of our problem. So in the middle of that night I rang the bell.
So.....I'm in intensive care and having gotten out of bed or pooped in five days. They bring over this chair with a little hole in it and tell me that they will help me get on it. I look at it and say "but where do my boy parts go?" The nurse says don't worry about it do what you gotta do. Okey-doke he but IP when I poop. So they hit me up on that thing, but as I predicted I became a frigging fountain. Sorry.
The constipation all effects of the oxycodone lasted for about a month. I stayed on a once a week schedule during that time. In acute rehab they had better rolling commodes with my boy parts, and they actually rolled me over a real toilet. But the first two out of three poops I had at Rusk required a plumber after I was done. I don't know about you, but have ever were able to look back and say holy shit that was the biggest poop I ever had. Well, I looked back and four turds and each of them was the biggest crap I ever took in my life.
Yeah, I got regular and came home from the hospital. That was 13 months ago. But I still needed a sliding board to get over onto a raised commode. It took me a few months but then I was able to put the commode in the bathroom and use a walker to get to it. Then the walker became unnecessary. But, I couldn't even stand in front of the toilet.
So in the spring I was able to pee standing up. It was really exciting to recycle that portable uranal.
A few weeks ago I started up Occupational Therapy again. It's great. I'm just ask questions like what do you want to do that you haven't been doing. There's been so much I've been afraid to try, but lately I've learned that I can yes drink from a glass, no more beer through a straw.
The third week of OT I said that I didn't know if I could get up off a regular toilet. So we tried it in the therapy gym. Without holding onto anything and without taking my pants down I easily sat down on a toilet. And then I got right back up! FUCKING WOW. Yeah, I still need a little help in the bathroom with those things that require fine motor skills from the fingers. But raised arm commodes and urinal jars are behind me. (Pun intended) 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.
The title of this blog is the greatest universal truth of all time. Hard stop.
But, lately I've seemed to have gone to a bunch more than usual.
In the past few weeks I attended two funerals. I kind of went to both so I can be counted among the people who cared. I guess it was important to me that their very close family and friends would see how many other people cared about their lost loved one.nAs I listened to these people take turns telling stories about how their departed loved one brought joy to the world or gave them lifelong lessons I found myself a little distracted. You see, back in the fall my father died.
My father and I never had a good relationship. It wasn't terrible, but for the most part all we did was try to piss each other off. Maybe the value in my father's relationship with me was in that I sort of hada negative role model of something not to repeat with my own children.
My father was sick for a long time and I periodically give some thought to what I would say at his funeral. Something much nicer than "he showed me what I didn't want to be". But the last days of his life and the funeral became such a religious shitshow that I didn't think I was capable of standing up and saying something of any value, let alone unoffensive to anyone in the room
But seeing the silly meme to the right and spending time at other funerals give me some time to clear my head.
The following is an absolutely true story that I never told anybody.
I was with my dad a long time ago....... It was probably the late 70s and we passed a guy who at the time would've been called a "wino". A drunk homeless guy dressed in rags shaking a cup. My father gave him some loose change. I said something like," Why did you do that, he's just going to buy more booze with your money?" He said," The guy has absolutely nothing. It's okay if he wants to be drunk." I never forgot that
Last week I had to have some forms filled out by the attendance office at the high schools my kids graduated from last June. Not wanting to waste the trip I decided to call ahead to make sure this was doable. When I called my daughter's old school I got through to the correct office and was told that this was ok and I should get to the school between 9 AM and 4 PM and asked for Maria.
My memory is not so great and it really worried me that I would forget the name of the person I had a find by the time I got to Sabrina's old school.
Then it suddenly occurred to me that if I remember anybody's name is the name Maria that I will have to remember.
You see, Sabrina went to LaGuardia high school. LaGuardia High School is part of the Lincoln Center Campus on the upper West side of New York City. Before it was constructed the land at Lincoln Center sits on used to be would Robert Moses like to call "a slum".
But there was a pause between the eviction of the citizens from their homes and the destruction of these homes in order to build Lincoln Center. During that pause Jerome Robbins used the abandoned streets and fire escapes to film the outdoor scenes in West Side Story.
Of course the name of the woman I had to meet was..............
A few weeks ago I finished my 32nd marathon, my third since recovering from GBS.
It was the Brooklyn Marathon. It started a few blocks from my house and most of it was in Prospect Park. I run the Brooklyn Marathon before, unofficially on the day the New York City Marathon was canceled because of Superstorm Sandy. I was one of a handful of people who knew exactly where the starting line was. I jogged down there and waited for someone to walk by and asked them for a favor. "I'm about to run a marathon, can you please say the word 'GO!'" "I completely understand" he said, "RUNNERS READY, GO!" He applauded as I ran down the road. It was my fastest of five marathons in 2013 and while I had prepared myself mentally for going up the hill so many times I was almost knocked my feet in pain the last two times I had to go down the hills. Two weeks later I was course director and lead cyclist for the official Brooklyn Marathon.
For the 2018 Brooklyn Marathon I started three hours before everyone else and did the course out of order. I did two laps of Prospect Park at 4 o'clock in the morning and then made it over to the starting line for the 7 AM start. Like five years earlier I didn't anticipate how much it would hurt to go down the hills so many times. It took about 10 1/2 hours and even with a three-hour head start I was still the last person to finish. That's all I really have to say about the race, other than the fact that I paused my watch for a few minutes to sit on the stoop and eat an apple at about the 18 mile mark.
I'd like to take this opportunity to do some thanking. In no particular order.................
I couldn't have finished without Larry Sillen:
Larry walked every step with me and only took 1 million pictures. Here's a Selfie we took at 3:45 AM in the rain. He had already walked a mile because the trains were screwed up he met me at my front door. (The bus that replaced the train was also FUBAR because it had to go around the marathon route.)
He was literally there for every step I took. Making it clear to me that he was here to help me in any way I needed. He let me ramble on for the first 15 or 20 miles and then accepted my solace for the last few loops of Prospect Park. Here we are on Ocean Parkway still heading away from Prospect Park. You might not be able to tell but there's no one left on their way back for those three or 4 miles.
Every time I got to the top of the hill in Prospect Park I was only a block from my house. There is absolutely no doubt in my mind that if I wasn't with Larry I would've gone home.
Here we are moments after the finish trying not to fall over each other but sharing a really great hug
Can you read my lips? "Dude, I love you"
I'm 55 years old and I finally have a role model to show me what selflessness is. I might not have lived without excellent medical care
Some people say that my recovery from GBS is miraculous. I'm not a believer so I don't use that word. Medical science kept me from dying and helped recombobulate me to the point where I could walk and feed myself. But there's a difference between not dying and living. And the staff at NYU Hospital/Rusk helped give me my life back. I just started volunteering their so the timing was perfect for me to hand out finishers metals to the people who helped me earn them. My memories of being a patient at Rusk are spotty. When I was at my worst physically I remember getting myself to standing using a giant plastic ball to grab onto. My kids happened to be there and I remember the therapist saying "There is no crying in PT" but, we all cried because were all humans.
The food at Rusk was pretty good. Every morning you gotta paper menu so you can choose your meals for the next day. One morning my nurse picked up the menu. I told her that I had already filled it out with the nutrition people brought me my food. She said she knew that but she wanted to circle some more stuff so she can start having breakfast with me. I also remember how Ludmila freaked out when she saw my fingernails were discolored. She suddenly thought I had a new medical condition. No, it was just that my daughter and her BFF gave me a manicure.
Since I was the last finisher in the Brooklyn marathon it was okay for me to take home extra finishers medals. Over the past few weeks I give them to some of my old therapists. I remember saying to them that one day I would finish in of the marathon and I come back and give you my medal It was literally a dream come true to give Ludmila one of my finisher medals. I never thought one human being care for another so well that they were actually related to.
It would never have happened without Steve Lastoe.
I couldn't of done this without you because without you it never would've happened. I hundred years ago you invited a bunch of Brooklyn running people to a bar bar to talk about organizing a marathon in Brooklyn. Everyone talked about their fantasy routes through the streets of Brooklyn but nobody knew how to close roads I knew how to organize a race for 1500 people doing 10 miles in Prospect Park. So we started by doing something we knew how to do. To the left is a picture of Stephen and I as teenagers posing for a newspaper reporter. We organized a race for a few hundred people going around Prospect Park for 26.2 miles.
At 3:45 in the morning I saw the caravan of barrier vehicles getting ready to deploy and protect the race. Then at 6:30 AM I got to the starting line and had to pass the bomb sniffing dogs and people queued up to go through metal detectors. I had to walk past thousands of runners so I can get to the side of the starting line. I felt pretty good. I already had 6 1/2 miles under my belt so I only had less than 20 to go. I looked out of that gigantic crowd and realized I helped push that seed into the ground. The seed that grew into this giant race. Then Steve made prerace instruction speech and actually pointed me out that I had been there from the beginning. I was there the last four and half years it would've been a lot of fun. But then I wouldn't of been able to have been the last finisher in the first marathon on the streets of Brooklyn and over 100 years.
When I was at mile 25 Steve jumped out of his truck to walk about a quarter mile with me. I made a promise to get me a ride home because I surely didn't have the energy to go up that hill another time.
It's been over four years since I left the Rusk Institute. In the course of my recovery I was there twice, each time for about two or three weeks. When I was there I had no idea what a rehab hospital was supposed to be like, I really didn't know anything about hospitals. It took me a while to figure this out but I was in a small part of a gigantic hospital system that was completely put together for the benefit of the patients. It wasn't just a place with great doctors wanted to work, it was a place where great people wanted to work. I was there a while and I got to interact with some of the top rehab specialists and some pretty great janitors as well.
One day in therapy I remember pausing and saying to my therapist that I'm too old. The therapist was confused and told me I was doing fine. I said no, I'm not too old for this therapy I'm too old to go back to school and become a physical therapist...... but I'm not too old to come back here and volunteer.
The volunteering started a a few weeks ago. A whole workday, from 9 to 5. I learned the hard way a few weeks ago that I shouldn't be taking the subway during rush hour with my left hand in a cast. So even though it takes more time I take an Ack Stress a ride/curb taxi to get there. Yesterday, the traffic was hideous. It took 15 minutes just to get out of Park Slope.
Clovis
The cabbie didn't seem very chatty but I was desperate for conversation as we werere standing still in the Battery Tunnel. I not so subtly gave myself a quality face palm and said "All this traffic and I am not money going to work, I'm going to volunteer." The cabbie turns around and asks me extremely politely (not a condescending politeness, but an old-school politeness.) "May I ask, what you do to volunteer/" we got plenty of time so I told my health history, my quick descent into paralysis and my slow crawl back out of that giant hole. I told him how wonderful it was at Rusk and that I am following up on what I said I wanted to do over four years ago, I go back there and help. I volunteer with the horticultural therapy department. I told him it's weird for me because I really have no understanding or interest in plants. And that we also have a pair of bunnies. I have no intention of getting my hands dirty with either potting soil or bunny fur, but I spent most of the day following around the cart and sometimes a patient would like to spend some time repotting a plant, or petting a rabbit. Often, I'm introduced as the new volunteer, who used to be a patient here.
The first patient I interacted with was a man who was completely paralyzed, he couldn't speak and could barely move his eyes. I was told that before his stroke he was a gardener and his wife felt he would enjoy watching some plants be repotted. The wife was in the hall and I was introduced. The moment she was told that I had been a patient she looked right at me and said, "Please go in there and talk to my husband, tell him that he will be okay like you are." With only two breaths of time to prepare I walked right into the room and lied. I introduced myself and told him I had been a patient here for years ago and that I was as sick as he was [I was always able to speak and never needed a respirator] and now I'm walking around. I told him I had really no idea of his medical condition but his wife said he's going to get better. I told him to believe his wife and that I got used to a life different from what I had before, but I was happy to have a life. I told my cabdriver that I wasn't sure if I did the right thing until his wife gave me a big hug and thanked me. She said hearing it from another dude would be more meaningful especially with my experiences.
I also told the cabbie what I realized I should've told this man. I should've told him what made me less upset with my physical condition when I was at my worst. I should've told him that I was happy that my wife and kids were visiting me in the hospital and that it wasn't the other way around.
The cabbie's English wasn't great, but I got the impression he really appreciated what I was doing for people who are still the hospital. He asked my permission to tell me a story. Oh boy, it sounded like a lot of proselytizing was coming. But the man was operating the motor vehicle when I was sitting in so mocking his religious beliefs would be out of the question. I had to literally roll with it. It was hard to follow but he told me a story about sickness and forgiveness. Then he asked me if he could play some music which would go along with the story. Believe it or not we were still in the tunnel so we could get YouTube up on his phone but when we got out he played some music for me. It sounded a lot like the Hebrew chant things that the kanter would sing when I was forced to go to Jewish religious services. But I knew this language wasn't Hebrew. He told me I would hear the word Allah and if I wanted I could replace it with the word god or anything I felt comfortable with. It wasn't irritating and after another 45 minutes we finally made it to East 17th St.
I asked the cabbie what language it was. He told me it was Arabic and I told him it was beautiful.
The meters sand $56, the MTA pays that, but my required copayment was $2.75. The cabbie would not accept it from me, he told me my service to the community was worth more than the money.
When I got to Rusk I got to meet a woman who I had met two weeks earlier. She was very happy to see me because she had more questions about how Ack Stress a Ride worked. I told her I had something to tell her that might be inappropriate but I felt I needed to say it anyway..... I told her that two weeks ago when I saw her she looked like a hospital patient, but today she just looked like a woman who happened to be repotting a plant while sitting on a bed. I think she almost cried when I said that. Just like I was cried when the cabbie wouldn't take my copayment.
It's safe to assume I'm going to be the last guy to finish the the Brooklyn Marathon.
So if you already finished and see me in Prospect Park on October 20 I might ask to see the medal you already earned, please show it to me. It'll give me the strength to get to the finish line. You could even walk a little with me I will be easy to recognize. I'll be wearing both the red of the Prospect Park Track Club and the yellow Achilles.
And you can cheer for me......
Go Michael!
Go PPTC!
Go Achilles!
Or
FUCK YOU GBS! (Actually, I was reminded by one of my old friends that as a board member of the Prospect Park track club I should not be encouraging profanity in public. So if you say F U GBS, I will hear Fuck You GBS!)
I'm definitely pausing the distribution of any online petition at this point. After testifying before the MTA board yesterday the feedback I got was that this is going to be fixed.A high-level mucky muck came over to me right after I spoke to get more details about this issue so "it can be corrected". Also, on my way out of the building and assisted to a mucky muck told me that while I was speaking a lot of people in the room were already texting each other on how to fix this problem. (9/25/2018)
If you live in New York City you must be pretty familiar with Access A Ride Vans. Those big white and blue Ford diesel vans that drive people with disabilities all over the city. These vas basically exist because years ago the disabled people of New York sued the MTA because the world's largest subway system was built a long time ago and has a lot of stairs. It was cheaper to give disabled people door-to-door transportation then to make the system work for all the cities residents. With access ride disabled people are able to be picked up and brought anywhere in New York City for $2.75. That's the same price as a subway fare, but since we can't get on the subway we get to do it in a van.
Before I became disabled all I knew about it was that it's a thing that everyone who uses it complains about. Once I became dependent on it I honestly felt it wasn't that bad. Don't get me wrong, it has an enormous room for improvement but once I figured out how it works it wasn't the end of the world. In any case I became part of a pilot program where I was able to use the Curb app and make a yellow or green taxi appear within minutes and only pay $2.75.
All access ride customers are issued in access ride MetroCard it's good for four trips a day and no fare is collected. Here are all the details on that. It doesn't say why New Yorkers with a disability are issued a MetroCard that gives them free trips so it just leads me to speculate.
People with disabilities have good days and bad days and on a good day most of us would rather actually take the train or the bus. The MTA is helping some disabled people transition back to "normal".
AND /OR
Driving people around door-to-door in vans is very expensive. The MTA saves a lot of money when disabled people get on a bus or subway.
Either way I very happy to take mass transit on the days I've been able to climb stairs. Last year I misplaced my card (by "misplacing"I mean I thought I lost it, but eventually it turned up) and after I thought I looked everywhere I called the MTA and ask for replacement. They told me to get a postal money order for $10 and send and mail it to them. I thought this was a little archaic, but many of the other people who use access ride might not feel comfortable paying online, so I went down to the post office.. I got my card within a reasonable amount of time and moved on with life. Unfortunately, in the past year this happen two more times. The third time it happened I actually found my MetroCard before they sent me my replacement. I was pleasantly surprised to find that it still worked and as soon as I got off the subway I called the MTA and told them I found it. They told me I was lucky because if it would have been of turned it off I would've had to wait four months for the new one to be sent to me. I thought this was a bizarre rule but I was happy that I dodged the bullet. However, two days later my card stop working. I called access ride and they said no matter what anyone said as soon as I said it was lost it needed to be turned off and could not be turned back on I had to wait 120 days. Below, is the rule that explains that.
Q. Where do I report a lost or stolen AAR MetroCard?
A. Immediately report a lost or stolen card by calling AAR at 1-877-337-2017. NYC Transit will reissue lost or stolen cards at its discretion after receipt of a $10 replacement fee. After replacement of three or more lost or stolen cards, NYCT will impose a 120-day waiting period before reissuing another card. This waiting period will also be imposed for the replacement of any subsequent cards. Payments must be made in the form of a USPS® Postal Money Order payable to MTA New York City Transit and mailed to NYC Transit, Paratransit Division, Eligibility Unit, 130 Livingston Street, Brooklyn NY 11201.
I complained up and down the line that I felt I was being penalized for losing things.If I'm paying for the replacement why do I have to wait? I honestly gave up on having an exception made for me because I was okay waiting 120 days. I was able to use the Curb app and when I'm able to bus drivers always let me on the bus because the card I have is not expired. Also, the staff at subway stations (including the police) open the gate for me when I show them my valid card. So, and by complaining about this policy I made it clear I wasn't asking for an exception I was asking for a change in the rule because not everyone who is disabled is going to feel that they could ask for help from the bus drivers and the subway staff to aid them in transportation needs. I really got nowhere with this complaining. Everyone thought I was trying to ask for an exception and reminding me that these were the rules.
I also lost my drivers license. Not that I drive anymore, but it was the enhanced federal version of the New York State drivers license. It was the type of card that can get me across the border into Canada or onto an airplane. I called the DMV and all I had to do was give them my credit card number and let them take about $21 for my account and I got a new one mailed to me. No trip to the post office no waiting 120 days if I lost it more than twice.
Then it occurred to me that friend uses her credit card to refill her MetroCard at a vending machine and so do hundreds of thousands of people on a regular basis. If she were to lose her card she can report it to the MTA and get a prorated refund. Here's the website it doesn't say anything about paying for replacement card or waiting 120 days if it happens more than twice.The first time you make a claim there is no charge. The second time there is a five dollar charge. The MTA will only efix your card twice a year.
And then there's the program where your credit card is automatically billed to your MetroCard works forever (or until the piece of plastic expires and then they send you a new one). Below are the details on that.
Q. What if my EasyPayXpress MetroCard is lost or stolen?
A. You must immediately report your EasyPay MetroCard lost or stolen online at www.easypaymetrocard.com or call our Automated Telephone Service 24/7 at1-877-323-RIDE (7433). We will deactivate your card to protect you from unauthorized charges. Failure to report your MetroCard lost or stolen may result in unauthorized fares which you will be responsible for. You will not be liable for unauthorized EasyPay MetroCard use that occurs AFTER you notify EasyPay MetroCard, electronically, verbally or in writing, of non-operation, loss, theft or possible unauthorized use. We will send you a replacement card in the mail. Please allow 15 business days for processing.
So here's the thing. Speaking for myself I can definitely say that people with disabilities are more likely to lose things than the general population. My disability affects my hands the most. I often drop things without knowing it. I've been hanging out with a lot of people with disabilities lately visual impairments and other cognitive issues. I'm pretty sure researches been done the disabled people or more likely to misplace things than the general population.
So why is there a trip to the post office and a 120 waiting period when a person with a disability needs to replace their MetroCard and all a person in the general population has to do is pick up the phone?
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