Yesterday I walked into one of my doctors offices just to refill a prescription. They said that I could call them. I replied that I happend to be walking by... That their office was between my home in Park Slope and my next doctor's appointment up by the UN, and that it was a nice day so I was walking there. One of the other people in the office looked up and said oh yeah you're the runner, did you run in Boston on Monday?
Naw, I drove up with a bunch of friends to watch. It was the least I could do for my friends and teammates looked at the same weather forecast that I did and made a conscious decision to both run 26.2 miles as best as they could and face hypothermia at the same time. They knew that they were going to be running into the wind with a moderate to heavy rain while it was 40° for three or four or more hours.Then, my doctor stuck her head out of her office and looked up and said, "You would've started and finished that race if you would've had the chance." "In a New York minute" I answered.
That's what I might've been thinking when my friend Noah snapped this picture of me. Or maybe how lucky I thought I was that the wind was coming at my back and not in my face like everybody who was running.I also remember what was going through my mind when I chose to lean on that poll. That I was able to keep my hands warm and dry but there was nothing I can do to keep my feet from getting soaking wet. I decided that I would stand by that poll until I felt my feet were too cold to allow me to walk back to the car safely. It was the least I can do to support my friends and teammates who are out there in T-shirts and shorts.
I really feel it was worth my time to stand out there in the rain. Just for this moment for my friend Shan to take a step backwards on the course just to give me a high five. Just to see that smile. He actually showed up in his finisher's poncho where we were all eating lunch and told me that the highlight of his race was seeing me and giving me a high five.
Believe it or not, driving up to Boston to see the runners has a lot to do with my neuropathy......Going back to Boston was kind of a big deal for me. Four years ago was a year after the bombing and I felt compelled to go cheer for the runners. I borrowed a friend's minivan and six or seven of us drove up for the day.
Let me try to explain what this has to do with Guillain-Barré syndrome. GBS and its lovely variance are autoimmune conditions that are triggered by something. Something that gets your immune system a little awake and then it doesn't go back to sleep when you're fine. Sometimes it's a surgery were something is implanted in your body like a lap band, or an actual virus, or a flu shot. The immune system kind of goes"oh, what's that? Okay, I'm done with that, but now I'm confused I'll make up a new enemy, all go off and destroy this guys nervous system!"
So now let me tell you a little story going backwards in time. On May 7, 2014 I walked into my doctor's office. I told her that there was something wrong with my hands and feet. About two weeks earlier I had crazy pain in my feet and shins and ignored it and then it turned into weakness. I told her that three weeks earlier I had the worst food poisoning of my life. After we watched the Boston Marathon we found a hole in the wall barbecue place to get a bite to eat. I remember saying that maybe it's not a good idea to have the pulled pork because I have to drive 200 miles and get everybody home. I remember thinking chicken was more safe than pork. The doctors confirmed that my autoimmune condition was triggered by food poisoning from undercooked chicken.
Anyway, I was talking with a fellow GBS survivor about how to deal with the fear of relapses. I told her we can't live that way. We can not get worried about geting worse again. In fact, I don't let my mind dwell on what could happen if I have a relapse. When my mind is idle I'm thinking about how I will qualify for Boston.
Alright, I got my hand out of the splint and I could use a computer mouse again. So before I start talking about my accomplishments, let me tell you about my kids.
You may or may not know that I have twins who are now high school seniors. And wow, has high school changed a lot in New York City in the past 30 years. I went to Sheepshead Bay high school because it was the school closest to my home. It was the 70s. We sat on radiators because there weren't enough desks. The teachers and security guards were our drug dealers. Being mugged in the hallway on the way to the bathroom was taken for granted. I survived. Four years ago my kids got to choose which high school they would go to. It was a frustrating process but the outcome was wonderful.
My daughter is winding down her experience at LaGuardia high school. Officially called The
Fiorello H. Laguardia High School Of Music Art and Performing Arts, unofficially called "the school they made the movie Fame about". It is also the school people think when they receive their Tony, Oscar or Grammy. She's not in the drama or vocal departments Her program is art. And she made this self-portrait. It was part of an art exchange program. She got to see a performance of Dear Evan Hansen and the star of the show got to have her art hanging in his dressing room.
When my kids was still in fifth grade I got my first paid gig helping organize a running race. It happened to be on New York's Governors Island. A New York City public high school just opened on the island and the kids were the bulk of the volunteers at the race. Part of my job was to supervise them and I was kinda nervous because I wasn't used to dealing with teenagers, my kids were only eight years old. But they were amazing. They all were on the super early ferryboat and did everything they had to do from filling water cops and keeping them from blowing into the harbor to picking up the ones that didn't make it to the garbage pails. My kids was still three years away from choosing high schools but I asked these Harbor School students what they thought of their high school. "My kids are still in fifth grade but should they go to the school?" Their enthusiasm was remarkable. They jumped up and down telling me how excited they would be if my kids would join them. And that attending their school was the greatest decision we ever made.
So for the next 2 1/2 years I kept the idea of choosing the Urban Assembly New York Harbor School as a choice for my kids. And it turned out to be an excellent fit for Nicholas. Because he attended the Harbor school he got a chance to present his work at the New York City science and engineering fair. He can do it better than me but let me try to explain what his project is about..
http://nycsef.cuny.edu/
Using the scientific method he has been experimenting with different types and different shapes of concrete that can be used to build the seawall that surrounds New York City. He has been supervising the people who pilot and maintain small boats that his scuba team traveled on to place samples of concrete around the perimeter of Manhattan Island. Using underwater cameras or by retrieving the samples he has been determining which samples of concrete will attract the most sea life and last the longest.(I know you can't read Nicholas's poster board here is a link to the document on Google drive so you can zoom in.) So, he is basically trying to figure out how to improve the perimeter of Manhattan Island so that more sea life will be attracted to it. The sea life will help clean the water. (Nicholas, please improve my description of your life's work in the comment section below)
We are waiting for all the acceptances/offers and then decisions get made. But, wow check out this email one of my kids just got,
Dear xxxxxx, Following the recent tragic shooting at Marjory Stoneman Douglas High School in Parkland, Florida, students across the country have rallied together to advocate for change in gun control policies in an effort to prevent future mass shootings. Some high schools have stated that students who peacefully demonstrate through walkouts and other non-violent forms of protest may face discipline and even possible suspension.
We want to remind our prospective students and our current community that xxxxxx was founded on the belief that courageous public discourse fosters a just and thriving world. With that in mind, Xxxxx will not rescind admissions offers to prospective students who face discipline for peaceable protest. As is our practice, we would ask that students let us know if they have been found responsible for a disciplinary violation. However, to reiterate, given that thoughtful dialogue and civil, civic discourse are central to our institution, disciplinary violations for peaceful demonstrations or walkouts will not jeopardize a student’s admission to Xxxxx .
Best,
XXXXXX
Vice President of Enrollment Services and Dean of Admissions
I'd like to review some of the ways that I have made/saved money in 2017.
I have been making money by filling out surveys online. Basically, from two different companies. One has been Inboxdollars. Lately, I've actually spent more time getting paid to watch videos than filling out surveys. I've learned that you can open multiple windows at the same time and get credit for watching multiple videos simultaneously. I don't bother doing many surveys because the likelihood of spending a few minutes answering questions and then finding out you disqualified is quite high. They don't give any credit for attempting a survey except sweepstakes points that are basically useless. In 2017 I've received checks (real paper checks that I've deposited in the bank) for little over $360. Since I started in September 2015, I've gotten checks for about $1200. You can get started in inbox dollars and by clicking this, and please do use this link to join I will get a small commission.
Since I've just done the math I realized I've learned a lot more money from Branded Research. In 2017 they deposit $1730 into my PayPal account. Again, that's real money that I'm able to do whatever I want with. They offer chances to do surveys that pay between 10 cents and a few dollars. You're told upfront how long the survey might take and what the reimbursement will be if you finish or what you'll get if you don't qualify. Click here if you're interested in joining, and again please use the link I'm offering because I will get a small commission if you join.
So out that's about $2000 that I can easily count from sitting around and answering questions. I probably got between $500 and $1000 more from surveys from other little companies I don't always read the questions and sometimes just make sure that I don't answer the trick questions incorrectly. Trick questions come like this.
Yes or no... is your diet entirely made up of plastic?
Please click the third choice.
Have you been to a store in the past 12 months?
Or they might ask you your age twice. There's some information I always give incorrectly like which bank I use all where I get my health insurance. But I try to be consistently incorrect so I don't get disqualified for answering a question differently within the same survey. Sometimes, from the first couple of questions you can tell what they're looking for. I'll never lie about being in the military, but I learned that I'll say anything to get qualified for survey.
I also have been getting cash back from two different companies. The one I've gotten the most cash back from is Upromise. In 2017 (not including December) I received $1847.95 from Upromise. Since I joined you promise in 2002 they have given me $13,254.29. They open up some sort of online account which are supposed to save for college but I've had them send me checks that I deposited into the bank. I earn this money in multiple ways. First, one percent of every single thing I've use my credit card for. Yes, my credit cards says Upromise on it, other than that it's a regular MasterCard. Upromise is also like an online shopping mall. If I stop there first before I go to the vast majority of websites I will buy from anyway I get up to 5% back from those websites. And when I say up to 5% it's honestly usually 5%. I also get 5% cash back from some of the restaurants I go to anyway. But wait, I get an additional 5% when I go shopping at these online stores or restaurants because I'm using the Upromise credit card. So that's 10% back on a lot of stuff. Also, and this is big, I often have the opportunity to buy things for other people like my co-op or my running club who pay me back usually before the credit card bill even comes up. They're paying me back for the cost of the item that I bought. So for example last year when I bought furniture for my co-ops basement multi-useless room it cost about $1500 and I got reimbursed that exact amount. But Upromise also gave me 10% of $1500 for making the purchases through them. You can join Upromise by clicking here. Again, please click the link I provided because I will get some sort of commission. If you have a problem let me know and I'll send you a direct invitation.
I also get cash back from shopping at Ebates. You have probably seen them advertised on TV. They deposit money directly into my PayPal account quarterly. In 2014 they gave me $77. Since 2000 they gave me $737.83. They're a lot like you promise and that they have a website that's like a shopping mall and before shopping at popular websites you just start at their website and they split the commission with you. You get back is a lot less than Upromise, but, I'd like to point out that most of the $77 was cash back on purchases that I also got cash back from on Upromise. Shopping through Ebates is honestly a lot simpler than Upromise and you often see the cash back in your account within minutes of making a purchase. But you have keep an eye on purchases through both companies they both "forget"to credit my account with the money I've earned and sometimes I have to send the customer service people a reminder that they owe me money. If you want to join Ebates click this link and again please use that link so I can earn a commission.
There also programs that don't work anymore. I think the companies used them to lure you into their stores with rebate programs, but people do not use them because ..... Some corporate mega drugstores used to provide a circular or an online page with what rebates were available during any given month. I would check out the circular at the beginning of the month and often things would go on sale and the rebate would be for the entire purchase price. To get the rebate all you had to do was go to their rebate website and enter the store code, date and receipt number from your receipt and they would know what you purchased and a few weeks later you get a check in the mail.
One day I noticed two things. Their receipts are given out sequentially and the person in front of me online was buying something that had a large rebate. I waited until the day before the rebate program was about to expire for that month and entered my rebate online. Then I hit backspace on my PC and reduced the receipt number by one digit. I got credit for the purchase that the guy in front of me online made. Boom! I'll let you do the math. They had no limits on the amount of receipts you can enter in a given month. Lots of free money. They've since made their website much clunkier and hitting backspace after you enter a receipt number brings you to a place we have to reregister for the rebate program.
Also, there was a corporate big-box office supply store that offered a $99 rebate on a $99 printer.(Of course, the catch was that it didn't come with any ink and ink for that printer was incredibly overpriced.) So it wasn't hard to buy a printer, enter your online rebate from your receipt number and then go return the printer. Repeat, repeat, repeat. They've since made it so that if you return an item after you apply for the rebate they won't accept your return.
Okay, you probably know what GPS is. You are likely to have used it to find your way from point A to point B. It's an app on your phone or device in your car that uses satellites to figure out where you are. You turn it on and it figures out where you are using satellites and you enter a location and it uses maps to tell you how to get there.
Runners and other athletes use this technology differently. Instead of being told how to get somewhere we use the data to review where we have been and how fast we've been going. We also can use it in real time to see how fast we are going. So after a run you can download your data and see your pace, changes in altitude how these hills might of affected your run and it even draws you a map.
Some runners realized that you don't have to run from point A to point B or repetitive loops of a park. You can run in a predetermined way so that your map gets interesting. My friend Linus took this to the next level. He calls it GPS art, route art, or as he coined it, gwriting. Check out his continually growing album here.
He can turn exercise into art about exercising
Or, send a greeting to a special friend. Please take a moment to notice how much work and planning line is put into this.. He's rounding certain corners and turning his GPS on and off to draw lines through streets
You can take it to the next level and make it a group activity.
You can get really crazy
But is the thing. If you want to have a lot of fun you can make it an event. For Hanukkah, Linus took a hard look at the streets of New York City and found an appropriate place to draw a menorah. So we carpooled and ran to Rego Park Queens where we got some strange looks from the residents and ran in the shape of a menorah.
Yep, we did that. Click below for the video of it's production
Since it was about 35° and I didn't want to make my teammates wait around for me to finish running all the crescents I just did an out and back. I went old school here and re-created my route on Google Pedometer. My friend Jimmy so perfectly pointed out that my route art was a Festivus pole
It's been almost a month since I finished the New York City Marathon. The soreness is gone from my legs and my electrolytes and rebalance themselves. But my mind is still recovering from being totally blown.
It really wasn't what I imagined. I had anticipated an emotional release that would turn me into a pile of goo at the finish line. But I had to use what energy I had left to stay on my feet. I also thought I would start crying like a baby when I passed my running family and my real family in Park Slope. But at mile 7 thousands of runners were literally rushing past me.
This is what I wanted to say. This is the speech that went through my mind millions of times. This is where I went on the treadmill or in access ride or in the middle of the movie.....
3 1/2 years ago I had a lot of really bad days. A lot of times where I needed to close my eyes and go to my happy place. What do you do when they leave you alone in the hospital room after they tell you you'll be fine in a year? What you think about when you're left alone if you had asked someone to help you press the buttons on your phone so you can call your kids? How do you keep from freaking out after you realize you can't even hold the jar to pee into while laying down? I close my eyes and went to my happy place.
I still had all my memories. The smiles I got from strangers when I pushed my kids in that gigantic running stroller over the Brooklyn Bridge. Doing speed work in Prospect Park within earshot of Bob Dylan performing at The Bandshell. Watching the sunrise over the lake in Prospect Park when it was frozen solid. Or coming around the lake and seeing the fall colors and for a moment thinking I was in New England and then realizing that Mr. Olmsted planned it that way. Or remembering finishing a 20 miler at grand Army Plaza and filling my belly with cool water as the cherry blossom petals fall on the back of my head. I remembered what it was like to run that last mile in the Club Team Championship. I remembered being in a starting corral in January and staring at the time and temperature on top of the Midtown building and seeing the temperature change from 9 to 8°. Sometimes I remembered where all the mile markers were in the New York City Marathon, or how good it felt to run around the perimeter of Manhattan Island. Sometimes I stared at the picture my wife took of me holding our kids after the first marathon I finished after they were born. I just remembered the look on my wife's face as she was taking the picture.I remembered calling my patents after I finished my first marathon, and the next 28.
But then there came a time where I stopped consciously choosing to send my mind somewhere else, I stop deciding where I needed to go. My subconscious mind started taking me away from my reality when I wasn't deciding to take that minivacation. I found myself drifting off into the same fantasy over and over again. It was a beautiful place but it often came at inappropriate times. I thought that I was developing some sort of mental disease. Then I embraced it because it was wonderful and if anyone deserved a psychological defect it was me.
It was a wonderful place to go, but it wasn't a place I had been. Well, it was a place I had been but I wasn't going to it like a memory. My mind was taking me there because it was a vision of where I would be again. It was a multidimensional vision. So now I'm not sure if I'm really here or I'm just imagining this again. I knew I would feel the weight of this finisher's medal around my neck. I knew I feel is wonderful pain in my quads. I knew I smell the pizza. I've already felt the tears rolling down my cheeks in my imagination. I already heard my own voice thanking my teammates from the Prospect Park Track Club and Achilles International. I already thanked Nicoletta, and Larry and Janet and my son Nicholas for taking all those steps with me.
So all I have left to say, and I'm not really sure if I'm really here or from just imagining it again is, "I also finished the New York City Marathon yesterday!"
Below, you can see and hear the words that I was actually able to get out of my mouth.
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.
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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.
I'm still trying to digest the fact that last week I finished my 30th marathon.
Four years ago I was a pacer in the New York City Marathon. I was the guy who held up a sign that said 5 hours and those that stuck with me finished the marathon in 5:01:30. I thought that was the guy that would do that every fall and I thought every spring I was gonna go find a rural marathon and see how fast I could do it.
Then GBS happened. I got a freakishly rare disease that nobody ever heard of and doctors lined up to tell me I'd be fine in a year. WTF, fine in a year isn't something you tell someone to make them happy. It might be something a gardener would say about someone's shrubbery, but I was a human being. Whatever, I've accepted the fact that I'm never going to be fine.
So after I finished this marathon I got like a gazillion Facebook comments. The one comment that meant more to me that all the rest of my came from a friend I've met through the Achilles running club. From a man who knows exactly what it's like to be beaten down by something that's not in his control. A man who had climbed out of that deep hole. A man who prefers to be called by his superhero name, "The Ultimate Running Machine". John Pierre summed it up in two words, "Welcome Back!"
When I gave it a moments thought I concluded that throughout my adult life I rise to middle management in most organizations I was involved with. In college I managed the student center then I graduated and became a Dean of Students. I am vice president of both my co-op board and my running club. So it just made sense that I became a local organizer of the foundation of the rare disease that I've been living with.
For the past year and a half I have been the person of contact and the liaison to the foundation for the GBS – CIDP foundation. That means if a Brooklynite goes to the GBS – CIDP website and registers as a patient or caregiver and indicates they want to be contacted by someone in their local community, I contact them. I also organize meetings of people afflicted with our lovely syndrome.
This past weekend I attended a training for people in my volunteer position. The formal part of the training only gave me a little new information. It really confirmed that I've been reaching out to my contacts correctly and holding my meetings the way the foundation wants me to. And it also gave me a chance to spend time with people who been through what I've been through. And that's really the whole point of the foundation. Meeting so many other people who are either GBS survivors or their loved ones who also wanted to give back to their GBS community was really rewarding.
But I did learn something new. I learned more about the inner workings of the foundation. I found out that we have the highest possible score from Charity Navigator. I found out that the foundation sees its goal just like I would want it to. It's a place to support people with GBS and their caregivers. Estelle Benson the founder and director said that the organization doesn't exist to boost her ego so she can say she's the director of a giant organization. She's here for the patients and caregivers. And that's why I became a chapter leader. I want people to know that just because they have a super rare disease doesn't mean there alone. Everyone else I met at this meeting confirmed that 100%. All the staff and volunteers at the foundation are there so that patients and caregivers can know that they are not alone.
(Just now, while typing this blog post, someone commented on one of my Facebook pages that they wished someone could help them in their country. It took me a minute to refer them to this website. If they tell me they found someone in Mexico City or if I never hear from them again I'll still feel that today was a great day.)
Anyway, I'm really really happy that I became involved in an organization whose mission exactly matches why they became involved in it. When people need not to feel alone I want to let them know that I am there for them.
So if you want to help me support this foundation click here and give them money
Also, since all of my blog posts have to be about at least two things, I'm really proud of myself. This weekend I....
Took an Uber to Penn Station, got on a train to Philadelphia and took a cab to suburban Philadelphia all while carrying a suitcase.
Arranged in advance to have a bidet installed in my hotel room
Dealt with the fact that it couldn't be installed until the morning.
Successfully enjoyed buffet style eating without loved ones filling my plate.(I found new love ones).
Hopefully, didn't talk about myself too much. Yeah, this was a training for me but it wasn't about me.
GBS literally knocked me off my feet back in May 2014. At that point I had finished 29 marathons, three of them actually being distances longer than 26.2 miles. Marathon running was how I defined myself. I was the guy you like to run to marathon the year. Most of my friends will long-distance runners and my part-time job was all about road races.
In a little more than two weeks I'll be starting the New York City Marathon. It's going to be really hard, in the past couple of months I've completed 18 miles once and 13 miles three times. Whether you're healthy or recovering from a rare disease marathon training is actually harder than the marathon itself. I'm not really sure if I'm ever going to be able to prepare for this distance again.
What I don't need our people asking me if my disease is affecting my cognitive ability and telling me I could be making a grave mistake by attempting to run a marathon. What I also don't need is to be told that I could always stop and take a cab home because they'll be other marathons. Needs
There might not be other marathons. I might not ever be in this physical shape again. The likelihood of me falling while training might be too high to try to do this again. I don't need people to tell me it's okay to quit. That's why my son is going to be my official "Achilles guide" during this marathon. I told him to treat me like Dumbledore told Harry to treat him. I can stop and rest but I have to drink every drop, complete every mile.
September 2017...
I had to see a new doctor that was totally unrelated to my neuropathy, , And optometrist. He was recommended by the same doctor who saved my life so I thought it would be a good thing. Anyway, I didn't want to go to back to a place that sells eyeglasses to see if I needed new eyeglasses. The doctor was cool, and he made the standard smalltalk while he was examining me... "What you do for a living?" I told him that a long time ago I was a school administrator but more recently I used to help organize running races. But I can't do that anymore, I mostly sitting home collecting disability. Then I made sure he noticed my hands, all crooked from the nerve damaged and thinned from atrophy. He said, "Oh, I noticed your hands. But, I saw you in the waiting room you able to use your phone. You get a job picking away at a computer keyboard somewhere." It wasn't until I saw the video below that I realized what a fucking ass that doctor. was. By the way, it was exactly 3 years and four months ago that I walked into my doctor's office.
Update, May 2017
"Where there is a will there is a way" This irks me in so many ways. In the context in which it was sent to me the person didn't even understand that I wasn't sure whether or not I wanted to even do the thing we were talking about. I wasn't sure it was worth any effort, not to mention this infinite effort implied by this overused phrase.
But when someone says, "where there's a will there's a way" to someone with a disability that they may or may not understand it just shows a complete lack of sensitivity to what a disabled person may or may not be able to do. Just because you saw a video of a guy with no arms and legs pulling a locomotive across Tasmania doesn't mean that a guy who has nerve damage in his hands should be able to operate a motor vehicle on public roadways. Or if you read about a woman who can't see, hear or speak but routinely saves lives at her job as a lifeguard doesn't mean I should go back to work on loading a truck.Anyway, these people are circus acts. And really, just because someone ran a marathon in 2:10 minutes doesn't mean that anyone could do that if they just tried harder.
So please think before you open your mouth. If you tell a disabled person "where there's a will there's a way" what they're hearing is "You are a loser if you don't achieve my definition of success for you".
Update April, 2017
So it's been almost 3 years and I've accepted the fact that my gate is less than perfect. I walk funny. A little like Frankenstein or a zombie. My arms don't swing the way yours do, but the big problem is I don't really lift my toe as my foot is hitting the ground. I don't land on my heel, my whole foot hits the ground at once. You don't have to announce to the world that you can hear me coming. Everybody knows that, ass hole.
Update November 2016
Okay, I really have to vent here. Because I mostly kept my mouth shut. But this doesn't really have anything to do with how to treat people whose lives were changed because of illness. This is about how to act in front of someone who's disabled, specifically using a wheelchair. For now, and just for longer trips I'm using my wheelchair again because I broke my foot.
It's hard to be in a wheelchair, especially if you thought that part of your life was permanently behind you. So I'm trying desperately to hold on to the little pieces of my life that I have regained since getting out of a wheelchair.... My running club organizes an easy run of the last 10 miles of the New York City Marathon course one week before the race. I was on my way to participating in this race when my foot broke, so for me the glory of the marathon will come next year. But I realized that I can still help out my club by using my wheelchair to go behind all the runners and make sure everyone finds their way from the 16 mile mark to Tavern on the Green and Central Park.
Emotionally, it wasn't very easy for me to decide to do this in a wheelchair but I put my big boy pants on and showed up. And then it wasn't too bad I was able to keep the wheelchair going at a steady pace and keep up with the back of the pack. I felt like I was doing a good thing and I know next year I'll be back on my feet. After a couple miles up First Avenue we had to detour a little bit around a construction site. A construction worker looked at me and said " That's cheating," and I heard another one say, "Ccan I write on your lap?." I replied, and they heard me, "that's not even a little bit funny."
But here's what I wanted to say.
Fuck you, fuck you, fuck you! Can you fucking imagine how every molecule of my body would rather be running?! Who are you, fucking Donald Trump?
Now go up to the third floor of that building you should be building and jump off the fuckin' ledge. Break your back so you children have to change your fucking diaper.
I feel little better now
Update October 2016 This isn't the worst thing, and I get it from people who really care about me. It's been two years and five months since I was completely paralyzed, and I've gotten a lot better. But I have come to grips with the fact that I'm never gonna be the guy who can hold his fork with just three fingers. In fact, I have accepted the fact that I will always need to use some special contraption in order to pick up a fork or spoon. I actually find it easier to rest a sandwich on the top of my right hand and hold it stable with a finger from my left hand as I aim it towards my mouth. So if we go out to lunch together be prepared for a little bit of a mess. It's okay, when I'm home alone and want something to eat it's a lot messier. Yeah, I can deal with the fact that my hands will never work like yours. But it's a little distracting to sit across the table from someone who looks at me like it's the end of the world to them .
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.
Naw, I drove up with a bunch of friends to watch. It was the least I could do for my friends and teammates looked at the same weather forecast that I did and made a conscious decision to both run 26.2 miles as best as they could and face hypothermia at the same time. They knew that they were going to be running into the wind with a moderate to heavy rain while it was 40° for three or four or more hours.Then, my doctor stuck her head out of her office and looked up and said, "You would've started and finished that race if you would've had the chance." "In a New York minute" I answered.
I really feel it was worth my time to stand out there in the rain. Just for this moment for my friend Shan to take a step backwards on the course just to give me a high five. Just to see that smile. He actually showed up in his finisher's poncho where we were all eating lunch and told me that the highlight of his race was seeing me and giving me a high five.
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