On the first Monday in every November my running club gets together and we mostly talked about the New York City Marathon. Being in that room it inspired me to spontaneously blurt out that I intended to qualify for Boston as a mobility impaired athlete. A couple of weeks ago I watched the movie Brittany Runs a Marathon I decided I needed to run the New York City Marathon this year. Last week I attended the Road Runners Club annual party where they give out Awards and decided I wanted to go back being the person I was before GBS. I'm going to run the New York City marathon every year until I can't
And I've been going a new Physical Therapy lately. With the super long-term goal of qualifying for Boston, running a sub - 6 hour marathon, I've been going to the sports performance center at New York University. For years I did my physical therapy at Rusk and they got me from Quadrophenia to being able to walk 33 miles in a day. but the Sports Performance Center is going to get me to run again. I'm using an alter-g machine and I'm being treated like an athlete. This summer I'm going to get ankle-foot Orthotics they're going to keep me from tripping over my own toes when I run.
Most of the time Physical Therapy goals are short-term or at least have a date. My therapist understands my goal of a 5:59 Marathon is as of yet Beyond the Horizon. but that's what I'm trading for.
I have been training at sub marathon pace on an alter-g treadmill at 60% of body weight. And then on my own I've been running on the track at the Park Slope Armory at a slower pace about to a half a mile at a time. Running.
On Saturday I join my friend Larry for the weekly Achilles workout in Central Park. we usually walk a couple of Loops of the reservoir. we got there early and walked one before everyone else got there but then I told him I wanted to run. Run. Running. Because I'm going to run New York this fall. When I did it two years ago it was a run walk and then mostly a walk. then when I did the Brooklyn marathon I just walked. And when I walked around Manhattan I walked. But this fall I'm going to run the New York City marathon. I won't break 6 hours but it will be training for the marathon where I will break 6 hours
4 years ago when I was still using crutches to walk around the neighborhood I ran a 1 mile race on a track. That didn't kill me. So why shouldn't I be able to run on a 1.6 mile Loop today Honestly oh, I was a little worried because I was just about to attempt to run three times further than I had run within the past 4 years. Whatever. I could have stopped and walked if I had to. But I didn't. I ran. and when I finished I honestly felt better then when I finished the three marathons I finished since GBS. Because I ran
Then Larry said he wanted to run some more miles. But he walked me down to where everyone was hanging out. I needed to catch my breath. the bench where I wanted to set was covered with everyone's coats. all the people I knew we're talking to people so I didn't want to interrupt anyone to just qwell about my recent accomplishment so I hung out. I was using my hat to wipe the sweat off my face when the volunteer standing next to me notice that. she was shivering, after all it was 40°. she looked at me and smiled and said that she was cold. I look back and said,” yeah, I'm overheating now because I just ran.”
Then something a little crazy happened. I don't know if it was an anxiety attack or some sort of epiphany. I said those two words out loud. I ran. I had to tell people I know. But the people I knew were busy. So I went to the other side of Engineers gate and took out my phone. it looks a little crazy. But I was a little crazy.
Okay, I got a back up a little. I recently participated in a sleep study. Yeah, I also have sleep apnea. I spent the night in a hospital covered with all sorts of sensors and then the second half of the night they put a mask over my face to see how my breathing got better. In the morning the technician said I “tolerated the test very well”. I told him that I had spent a week in intensive care and then 135 days in the hospital. This test was easy because I knew I was going home in the morning. Nothing can hurt me. Nothing bothers me. I think I kind of scared him a little but he told me it was a very good attitude to have.
Yeah, I got really sick. I got better. I fell down. I got up. Nothing bothered me I'm really not afraid of anything
Until I made this crazy Facebook video I was afraid of one thing. I was afraid that if I started crying I would never stop. I feel much better now. I'm not afraid anymore that crying can become a permanent condition.
I imagined this would go differently. I literally “imagined it would go differently”
last week, for the first time in five years 8 months in two days I wore pants. you might think that sounds a little crazy but ever since I got GBS I've been wearing some sort of gym clothing. Sweatpants or shorts. Stuff with elastic bands that I really consider pajamas.
But last Thursday when I went to do my volunteer shift at the inpatient Center at Rusk I put on a pair of jeans. Granted, they weren't regular jeans and without a belt I still did not feel like the old me . But, from the outside I was wearing jeans.
.I bought them from this wonderful company that features pants that don't have buttons or zippers. https://nbzapparel.com/ I really was thinking that a lot of people would notice and that I would get a little emotional. But I forgot that no one really looks my pants. Who really cares. I'm not really a fashionista. but it was nice to wear jeans because that's what I always used to wear.
The end of my shift at Rusk I mentioned to my friend that I was surprised that no one noticed that for the first time in five years I was wearing jeans. she said she would have noticed but you was having her.period. I guess I'm glad I have good friends who can talk to me like that. Or maybe it's that we just spent the whole day with people with a lot of other medical stuff going on so being blunt about stuff like that's okay. But I'm still glad I have good friends.
August 20, 2019
Another breakthrough!
In New York City many of the buses are switching to a payment system where you dip your MetroCard into a machine at the bus stop and it spits out a slip. Theoretically you just keep this lip with you and you could ride the bus. It makes things go faster because people can board on any door and don't have to dwell around the driver putting money or metrocards into a machine. The thing is, 99.9something% of New Yorkers can operate that machine. But only a little sliver of paper sticks out and I don't have enough strength between my thumb and forefinger to grab it so I have to use two hands but there's not enough paper sticking out for me to get two hands around it.
But yesterday I did. I did not have to ask a stranger for help and I didn't have to dip my MetroCard two times to make the paper bigger. I hang out with a lot of people with disabilities. not all of them are regular people with disabilities many of them are active people with disabilities and many of them are activists who are people with disabilities. when you hang out with activists you also hang out with a lot of their lawyers. I happened to be sitting next to an ADA lawyer and told him about my problem using that machine. He told me that I should continue to try to use it. Always dip my card in and try to get the slip of paper out. But if I didn't want to I shouldn't have to ask a stranger for help nor should I have to lick my fingers or use my teeth. He said that if the bus gets inspected I should respectfully tell the police officer that I will be defended by an ADA lawyer and this will be a federal case if I get a ticket. twice before we had that conversation I was on a bus without the ticket and showed the inspector my Acksress o ride Metrocard and both times they got frustrated and shrugged and walked away without giving me a ticket. I might not be able to pull out that little slip of paper next time And I still might be the plaintiff in a federal ADA case . But yesterday there was just one guy who looked a little crazy on the bus because he was struggling to hold back tears of joy. It was kind of nice not to worry that I was going to be treated like a criminal for taking the crosstown 34th Street bus.
So a little bit more of a review. 5 years ago last May I went from physically fit to quadrophenia in a couple of days. I couldn't move my arms and legs. 135 days in the hospital. I came home in a wheelchair. then started using crutches a little bit of a cane and since then I finished three more marathons. But the nerves in my hands didn't really heal.
I've had five surgeries to recombobulate my hands and fingers. the first was to put a rod in my right wrist and the second was the transfer the tendon that used to move the wrist a little so I can have a little bit of control over my fingers. Now all the fingers in my right hand move together so I can't flip the bird but I can pick up a can of beer or a fork or pen or a toothbrush with my right hand now.
The third surgery fused the 4 knuckles in my fingers in my left hand so that they were more in a shape of a cup as opposed to being as functional as a paper plate on the end of my hand. We thought that was going to be the last surgery but I realized I needed to get my thumb out of the palm of my hand. We had two more. One to fuse the joint in the thumb to keep it in the open position and the second was to transfer some of the tendon from my wrist so I could literally open my thumb.
Those five surgeries are done and I’m unlikely to have any more unless science figures out some new way of recombobulate in me.
This might sound weird but the one thing I can do now that I couldn't do five years ago or five weeks ago is put deodorant on both my armpits by myself. Yeah, there might be many ways of defining yourself as a human being. but one of them for me is being able to put a little Old Spice on my armpits without asking for help.
Yeah, the cast is off and I'm back in occupational therapy. I prepared myself this time by thinking of what goals I had.
Opening pistachios
Safety pins
Pulling up my pants without having to put both my hands inside the elastic waistband and touching the Holy Grail is good. But doing it without having to lay on my side would be better
Update January 2019
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.
I was just on a city bus on the way to the gym and I saw this new sign and I got all excited. I thought maybe it would give a clue to some people that other people need those seats in the front more than them.
In big bold letters it says “Please give up your seat”
I'll type out what it says because I can't take a picture on a bus to save my life
Give up your seat for
Pregnant ladies
Folks who may be traveling with babies
People who may need to fold their stroller or carts
Seniors, even if they don't look the part
Thank You
WTF MTA not everybody who's disabled looks disabled. I'm 5 foot 10 and weigh 210 lb. I stand up straight and don't use a cane. But I have severe foot drop and it's none of your business but I have problems with proprioception, which means I have poor balance. I also have nerve damage in both my hands which means if I have to hold on to the pole I have to do it with my elbow. Do I get that seat? That sign is going to make it even harder for me to get the seat.
Not for nothing but how about just put a sign on the seat that tells people not to sit in it unless they have a medical condition requiring them to sit. just save those seats in the front for those that need it. that way maybe I won't have to ask those middle school kids to get up while they're playing all their video games totally oblivious to the fact that I'm about to fall on them.
So, yeah, next time you see a seat on a bus or Subway or a train that has a little sign on it or above it indicated it's for disabled people just don't sit in it unless you really need to. Don't make that person who is actually disabled ask you to get up. You don't park in a parking spot reserved for disabled people and then make the disabled person go find you so you can move your car.
The past few weeks I have been the subject of some drama. It kind of a good way though. And it's been recorded
.
Above, I can be seen making a toast to my good friend Z. I met him through Achilles and this was one of the last times I was going to see him because he's moving out west. I basically said How much I hate the expressions “every cloud has a silver lining” and “everything happens for a reason”. But it occurred to me that if it wasn't for getting really sick I never would have met Z nor would I have met all my friends at Achilles.
Above, I was being presented with my incentive for completing my 100th appearance at an open run, by the NYRR. I wanted to point out that a couple of years ago they gave me a fancy award at one of their black tie dinners. Part of the speech when I got my Joe kleinerman AWARD the presenter mentioned that doctorS said I might never walk again. I mentioned there in Marine Park that it wasn't doctorS that said I would never walk again it was actually only a wheelchair salesman who said that. But upon receiving this award I was kind of choked up because I was reminded that they were an awful lot of doctors who were quite concerned that I would stop breathing. I was quite pleased with myself or actually earning it award for showing up. cuz showing up was something people were worried I wasn't going to be able to do
Above I was recently inspired by all the stories of people who had just finished the New York City marathon. This was truly a spontaneous moments but I've been thinking about it for a while. I stood up and announced my intention to qualify for the Boston Marathon as an athlete with Mobility impairment.
Slide to 3:53 And listen to what I said for Voice of America / Africa. some reporter showed up at our Achilles workout with a giant microphone and wanted to know about our Achilles chapter in Brooklyn. I rambled on a lot but I told him what I've said before that life handed me a lot of lemons and that until Achilles came around I didn't know where I was going to get hold of sugar so I can make the lemonade.
Over the past couple of weeks I've done some traveling. First I went out to Southern California and a week later I went up to Toronto.
I've been to the West Coast before but this time was different. I had less of an agenda, I was just visiting friends. So while I was out in California I got to do also two different kinds of things I got to see how things were similar and I got to see how things were different than here in New York City. First and foremost and this was very important to pay attention to the ocean is on the other side. It is on the left and that is kind of weird
As you can see San Clemente looks just like Coney Island except the beach is on the other side
Oh, when we got to LA there was one touristy thing I wanted to do. I wanted to visit the La Brea Tar Pits. I have to say something right here, I was completely misinformed as to what they were. I thought there was something like Old Faithful like there was this bizarre natural phenomenon that people put a fence around and turned into a museum. like a hundred and fifty years ago people stumbled upon this tar pit full of dead animals people put a fence around it and said hey look at all these dead animals let's turn it into a thing. No! 200 years ago a guy started mining asphalt out of the Earth and when you completely used up all the asphalt and discovered that it was full of dead animals he gave this industrial wasteland to Los Angeles and told the city make it a museum. maybe we should do that to the Gowanus Canal here in Brooklyn.
Here is a touristy picture of me looking all pissed off that I drag myself out to California to look at a recreated Lake Tar Pits thing with fake dead animals in it.
Southern California seemed to be a lot like New York in that there are just too many cars. Especially if you don't live in LA itself you absolutely can't get anywhere if you don't have your own car. I learned that roads have numbers and you put a. In front of them. The five. The 405. Stuff like that. They go north-south and their 10 lanes across in each Direction crazy shit. They also have cars that we don't have here. lot of people live in vans that have 4 wheel drive. but there's no traffic if you drive east. You don't have to go far to the east to be in the desert.
Speaking of desert, I really didn't understand what desert was until heading out to Southern California. My only experience with desert was watching Breaking Bad. I did the most out-of-the-box thing as a tourist. I decided to go to a high school cross country track meet. Where I found out what desert was. the New York City we had our Cross Country meets in Van Cortlandt Park. We basically put a fence around the last bits of forest in New York City and called it a park. You don't have to do that until then California there's lots and lots of wilderness but for some reason we had to drive 45 minutes through it to find some special Wilderness to have a track meet.
Another thing that I thought was weird was that we went out to dinner two times. Once we went to a brewery that had a restaurant in it another time was a winery that also had a restaurant. But both places seemed like more of a combination between a park and a restaurant then just a restaurant. There were lots of bars everywhere and different bands in different places and it look like a place where people would spend a whole day. I don't think we have that here in New York City. Maybe we do but it's just not a thing I do,.
And here in New York we have TV ads for a giant law firm called Cellino & Barnes the phone number is 800-888-8888. in Southern California they had TV commercials for a law firm called Barnes and I think their phone number was 800 8 million. They use the same corny song
Okay oh, back to the right Coast. This past weekend with only a few weeks notice I decided to attend the Canadian National Conference of the GBS CIDP foundation in Toronto. my passport expired in the 90s and I cannot drive so getting to Toronto is a bit of a challenge. I do have an enhanced New York state driver's license so I am allowed to cross the border between the United States and Canada but only by land. So here was my plan: I took the 8 a.m. flight to Buffalo it was only 55 minutes and I misread the bus schedule and thought there was a bus from the Buffalo airport to the Toronto Airport at noon. This would have been great because my conference was at an airport hotel in Toronto. That bus did not exist. It was not till 7 pm. So I figured I'd get closer to Toronto by taking an Uber to the Buffalo bus station. I had just missed the bus to Toronto and the next one was at 6:30 p.m. it's one by the airport. I didn't want to wait around so I took a city bus tonight or Falls and walked over the Rainbow Bridge where I took the obligatory selfie with Niagara Falls over my shoulder. they let me into Canada and I went into the Subway Hero shop in the Hard Rock Cafe right over the Border. After lunch I sat on a bench and opened up my phone. It would have been five buses, $75 and four hours to get to Toronto. I wasn't sure way to that anymore so I press the next button on my phone and saw that it was $184 Uber trip. Since my airfare was based on Frequent Flyer points I took A1C trip right to the hotel. I still got there before my room is ready
They had red and green exit signs in the hotel. I think in The south they are all red
So I've been to one day GBS conferences before in both Princeton and Boston and I've been to three day by annual events in San Diego. But this was my first time leaving the United States I expected things to be a little different and they were only a little different. I was warned that Canadians would be creepily friendly and they will only normally friendly not any more friendly than other people like met with my disease who are happy to meet other people with the same disease. In fact, I got there a little early and was invited to attend the tail end of their liaison training. It seems that between the lobby of the hotel and the second floor where the meeting was they got a message that I was on my way up and I was welcomed in. It made me feel pretty nice for the rest of the meeting and I was glad to feel that way.
The conference itself was a lot like the conference is I've been to except there were doctors who took cannabis very seriously and talked about serious medical research on how we can help pain and stress. But in general it was a lot more casual and I think that was a good thing and there was also a lot less of the pharmaceutical people waiting at stuff in my face which I thought was a great thing.
Oh yeah, It was a difference between the foundation's. In Canada
they have French. In Toronto they don't really do much with it but they have it.
So getting back to Buffalo for my flight home at 8 p.m. was much easier. I have an old College buddy who moved up there years ago and earlier in the week texted him and let him know I was going to be in Toronto. I told him about my Transportation issues and I said that I had a fantasy that he came and picked me up and brought me back to Buffalo for my 8 p.m. flight and it exchanged I bought him a really nice lunch. he told me him and his wife basically had the same fantasy. ( I'm making sure to tell my kids the importance of keeping in touch with your old college buddies). so he gave me a little tour of buffalo on the way to the airport and he told me that Buffalo is the only city on the East Coast that has the sunset over the water. when he comes to visit me in Brooklyn I have to take him to Brooklyn Bridge Park to see the sunset
The other afternoon I was walking up the stairs at the 7th Avenue subway station for the B & Q train in Park Slope. Ahead of me we're two young women struggling to heave a pair of Citibikes up the stairs to get to the street. When they got to the top of the stairs they seem to be both giggling and crying at the same time. I had to ask. ” Why did you take Citybikes on the subway?”
In a lovely French accent the first replied, “Because we are stupid!” then the second quickly said “and we wanted to go to Coney Island”I smiled and said Welcome to Brooklyn
I thought they were very cute and wish I took that picture for my blog post. But that would have been awkward. It wasn't easy to find a picture of a Citi Bike on a subway on the internet but I found the one below it's not cute and I foun it here http://www.kevinridesabike.com/?p=9
Earlier this week I had one doctor's appointment near Borough Hall in Brooklyn at 8 a.m. and another up at NYU Langone up near the UN at 11 a.m. So I couldn't resist but to walk over the Brooklyn Bridge. This blog post is not about the Brooklyn Bridge. It is about the place I stopped to pee before I got on the Brooklyn Bridge. ANYU. I stopped countless times before my hundreds of runs over the Brooklyn Bridge
Over 10 years ago, in July of 2009 I posted this blog post. 10 years ago I noticed a rotary phone in Brooklyn that still said 212. Yep, that phone is still there and still has a dial and still says 212.
It also says Bell Atlantic and New York Telephone two of the companies that eventually became the current occupant a phone service in New York City, Verizon. Yeah, some real artifacts there. It's been decades since they installed phones with dials Tama you still want to in Brooklyn or called the phone company Bell Atlantic in New York City.
But there's something new and great right next to the phone. Next to the doors of the restrooms there's this sign. My crappy cell phone photo makes it hard to read but below are the words that are on signs like this all over bathrooms in New York City
click to read
In the big picture it really doesn't matter if there's a telephone in a park building that has obsolete messages on it. But I'm really glad my kids are growing up in a world where people could go to the bathroom that works for them
A friend shared this photo with me. He wanted to point out the fact that the rail was not in raised text her so it was useless do the visually impaired.
I immediately noticed something else, “Please ask for assistance”. Is this a place I can go where they will wipe my ass for me?
Hey, besides being an old punk I'm a cheap bastard. I really have issues with spending money on myself. But seeing this little thing on their website I figured I can get in for free. When I got to the entrance desk things almost got ugly. They didn't have any signs they're saying disabled people and their helpers got in for free so I said “ hey, you don't have any signs here but it says on your website that people with disabilities can get in for free?” how she replied almost knocked me off my feet or cause my fused right wrist to make contact with her face. But I kept calm. She asked, ’ do you have your disabled card? “ I was old geared up to see Punk stuff so my blood pressure was already at max. In my head I was thinking I'm screaming in her face and telling her isn't it bad enough that I am fucking disabled do you think I have to carry a card around with me. Instead of showing are my scars up close I just took out my ack stress o ride MetroCard. She smiled and asked me if I needed one or two free passes. Deep breath.
ok anyway I went upstairs and took some crappy pictures. There was a lot of stuff of my youth including some albums that I still own.
And a mashup of another album that I own. like I pointed out and in earlierblog post about this photograph oh, I was there when this photograph was taken. I might not have said it back then when I saw this photograph in the Brooklyn Museum. But photography does not do that moment Justlike taking photographs from the north rim of the Grand Canyon, or from the Moon looking back at the Earth. Except that this was a photograph taken of an action scene. The energy at the moment that picture was taken was so profound in the Palladium back in 1979 that everyone in the room would have been okay if it would have triggered a nuclear explosion It turns out I wrote a Blog about Joe Strummer on the anniversary of his death and of his birth
So at this exhibit they had photographs that were taken when I was in the room. they're also many record albums that I own (that I'll actually would unload if they weren't on the top of the back of the closet). In a locked display case they were buttons and other promotional stuff from the punk era. Here's a card that was handed out somewhere that's an advertisement to a show that I was at.......And hey I just dug through all my ticket stubs and couldn't find one for a Johnny Thunders concert on November 11th. But that doesn't mean I wasn't there because I found a lot of ticket stubs for concerts I have absolutely no memory of ever seeing. If you're reading this and you knew me 40 years ago can you tell me if we went to see Queen together or Bruce Springsteen? Anyway, punk rock was about anger. I walked in the door and got mad and then got less mad . but looking at all the stuff they had definitely got me mad. I hate to see my early life in a museum
On Saturday I join my friend Larry for the weekly Achilles workout in Central Park. we usually walk a couple of Loops of the reservoir. we got there early and walked one before everyone else got there but then I told him I wanted to run. Run. Running. Because I'm going to run New York this fall. When I did it two years ago it was a run walk and then mostly a walk. then when I did the Brooklyn marathon I just walked. And when I walked around Manhattan I walked. But this fall I'm going to run the New York City marathon. I won't break 6 hours but it will be training for the marathon where I will break 6 hours
Posts
