Friday, May 6, 2016

You inspire me (NSFW)

A lot of people tell me that I inspire them. As I've written before, that used to bother me. When people told me I was inspirational, inside it just reminded me that I would give my left nut just to be mediocre again. I didn't want to be anyone's superhero, regular hero or even role model. I just wanted to be an unnoticed regular guy again. But I accepted that that was never gonna happen again.

On this date two years ago I fell on my face when I was making an easy jump into the back of an empty truck. I was supposed to visit my doctor, but the truck needed to be put back together. I stumbled into my doctor's office until May 7. She told me I had Guillain-Barré syndrome and needed to be in the hospital. By that evening I couldn't walk it all. And on May 8, 2014 it was a good thing the nurses were right there to catch me when I was trying to pee.  Read the rest of the blog posts for the rest of the story. I'm not talking about my dissent anymore, I'm talking about my climb out of that fucking pit.

I try to get to the gym now as often as I can. While I was waiting for the rowing machine to open up so I can do my warm-up I was admiring a woman on the treadmill doing a full out run. Then, I saw her do that something that I thought was impossible. She turned 90° and started running sideways on the treadmill. She did that for a couple minutes and then jumped forward again to run. Then she jumped in the air and turned 90° the other way. Kind of like the video below but she was going faster and never went backwards. When she got off and walked past me, I said that I didn't think what she just did was possible on a treadmill. She quickly replied," You can do anything if you try!" 

So, my warm-up is usually to get to 100 cal on the rowing machine. It usually takes me about 12 minutes. She inspired me to try to break 11 minutes. Boom! 10 minutes and 30 seconds. It helps to be inspired. Then I went into the weight room and added about 10% to all the machines I use.

Sunday I'm going to participate in a 10K race. I'm still using the word participate because I'm not running. I'm going to get a one hour head start and I will still finish with the back of the pack. I'm really hoping that everyone who passes me knows how hard I'm working and where I have been. Their encouragement really helps. Because, honestly, without it I would just sit home jerk off and eat ice cream.

Yeah, and in two more weeks I'm am going to walk 13.1 miles in the Brooklyn half Marathon. I don't know yet if they will give me an early start or wait for me to finish but I'm gonna do 13.1. Then the next day I'll participate in the GBS – CIDP walk and roll.  I'm going to show my neuropathy friends how far I've come. On May 22, 2014 I could not roll over in a hospital bed. On May 22, 2014 it took all I had to walk a mile with a rolling walker. On May 22, 2015 I'm just going to show up and walk a mile the day after walking 13.1.

Yeah, and I'm also not using the joystick mouse anymore. Last week it wasn't hooked up so I just reached out and started using a regular mouse. Just like that. I tried. It worked. For the most part I still use voice to text. So if you think you hear my voice in my writing, you are. This is how I tawk.

So I'm gonna start to wind down occupational therapy and go back to physical therapy. But not the same physical therapist I've been seeing. They got me from paralyzed to being able to walk as far and as fast as any tourist in New York City. A couple of weeks ago I took off my ankle foot orthotics and ran a mile. It took me just under 24 minutes and I think I look more like a bird than a human. My new physical therapists are going to treat me like a jock again. I'm can ask them to get me running faster and further. Running.

So here's the deal. I'm to keep inspiring you, and you can let me know and that will encourage me to inspire you even more.

FUCK YOU Guillain-Barré syndrome

FUCK YOU Chronic inflammatory demyelinating polyneuropathy

FUCK YOU Acute motor axonal neuropathy

Thursday, April 21, 2016

Practice and training

On this week two years ago, I was preparing to attempt to finish my 30th marathon. I had run hundreds of races some as short as 3.1 miles and a few that were actually over 26.2 miles. Getting to all those starting lines took training. Training meant long runs alone or with friends. Training ment doing speed work or hill repeats. Sometimes training involve machines in the gym. Training also meant a balanced diet. Often one race was training for the next. Runners train, we don't practice running. Sportsball players practice when they don't have an actual competition. Sometimes, people of a different generation for people who are unfamiliar with the sport of running asked me if I practiced. No, I train.

On this week two years ago I was also suffering from the stomach virus that triggered the lovely autoimmune condition that I'm suffering from. 23 months ago I was a quadriplegic in the intensive care unit (I actually like to say that I was suffering from Quadrophenia). In the hospital I remember to practice. I practiced being calm. I practiced my breathing. I practiced mindfulness. I passed hours reviewing the various courses I ran in my mind. In my mind I ran laps on the track and in reality the machines that were connected to my body started beeping because my heart rate actually started going up. In my mind I crossed all the finish lines, with real tears on the waterproof hospital pillow.

Now more than ever, I practice while I train. Breathing and thoughtfulness are that much more important when one's balance is off or when significant muscle groups are in active. I also try to get to 27 reps on most of the resistance machines. For the first five or six I try to hold back and not get caught up in the excitement of being strong. Number six is a little exciting because I passed my neighborhood. I moved through to 13 without much stress and then I get to the halfway point. Then I focus on getting to 16 where things get tough but the crowd starts to roar. The number 20, only a 10K to go. Number 21, back in Manhattan. At number 22 on thinking ahead to Central Park already. 23 and 24, I can see people with their finisher's medal, I'll get one also. At 25 your allowed to say almost there. At 26, you can see the finish line. Then all the effort that's left goes to looking good when you're done.

Thanks for the action photo, Murray.
Without much planning I decided this morning to show up for a 1 mile race. I figured I trained enough. I've taken off the ankle foot orthotics and run half a mile a couple times with no problem. Tonight, I wanted to find out what I was made of; I wanted to find out if I could race 1 mile. I honestly wasn't sure if I could do it. I approached it the way I have approached ultra marathons in the past. I knew I can do half the distance so I figured I'd push on and see how I felt at three quarters of that distance. I don't remember how I felt, all I knew is that I just had a quarter to go.

Training got me to that finish line. I don't know what kept me from bursting into tears when I did it. I guess it was that I could hardly catch my breath or that I was worried I was gonna fall on my face.

Now that I'm home and more or less alone it's good to practice my writing and to let the tears of joy flow.

And thank you Susan for catching me in this video at the finish line.


Tuesday, April 19, 2016

Free Flip-Flops?

They have been on 15th St. off of 7th Avenue for over 24 hours. If you hurry up they might still be there.

Monday, April 18, 2016

Go Achilles Brooklyn, YEAH!

In May 2014 I walked into my doctor's office because I was tripping over too much stuff and starting to drop the dishes. She basically shoved me in a taxi to one of the best hospitals in New York City because she correctly diagnosed me with Guillain-Barré syndrome. In the ER they gave me a spinal tap and then admitted me into intensive care. That night I had a 90 minute MRI and by the next morning I couldn't walk it all. Every few hours someone would ask me if I could breathe and by the end of the week I couldn't hold a plastic spoon.  They transferred me to rehab when I stopped getting worse. There they told me I would start getting better and in a year I would be fine. Their definition of fine was a little different than mine, but I was okay with that. But I got worse when I was in rehab and they sent me back to the medical hospital for more "aggressive" treatments. I went through five rounds of plasmapheresis, where a small surgery team had to put a hole in the side of my neck so they can get blood in and out quickly. Then back to rehab and I had another relapse and I heard my doctor use the word chronic and back to the hospital again. This time I had chemotherapy. That appeared to stop the relapses and my slow recovery officially began.

I just needed to review all this because people often ask me if I was scared. No, at no time during this process was I scared. As I said to myself many times and into this blog a few times I can take all kinds of shit as long as I know it's not my kids it's happening to. I also went out of my way to find the positive in people. I even kept a little list of things people said or did that made me feel better. Or maybe I just found a way to numb myself. But, in any case I didn't allow myself to freak out.

I never imagined I was worthy of what people did for me. One of my friends organized a race as a fundraiser to help pay off some bills and another had a little talent show in their sneaker store. It was humbling to see what people would do for me.

Yeah, when I got sick I found out how good my friends were. But I also found out I had a lot of new friends. Back when I was in the hospital I just mentioned in some Facebook page that I still wanted to participate in the New York City Marathon. My friend Nicoletta showed up and said let's figure out how to make that happen. It turned out it was much more complicated than I imagined. I had already paid for the race but needed to change my status from runner to AWD (athlete with a disability). The roadrunners club wasn't really into me being pushed and it turned out that being pushed 26.2 miles in a wheelchair designed for indoor use would be a nightmare. So I took the medical deferral (and yes I skipped 2015 also, but warm up your TVs because this year I will complete that race under my own power. But that's not what today's blog is about.) Then Nicoletta asked me if I want to join the Achilles athletes for their workouts. "Sure, but getting to Manhattan would be an insurmountable hassle right now." So she created an Achilles chapter in Brooklyn.

The kickoff was a year ago. It coincided with the arrival of my new power wheelchair. One of the first trips I made outside by house by myself was to meet the new group. I got there a little early and other Achilles athletes and their guides began arriving. Suddenly, my head started to spin. 11 months after losing my ability to walk or hold a pencil I was having my first anxiety attack. I wanted to leave, I wanted to run away. I was totally freaking out inside because I did not want to be associated with these people. I was always a helper, not someone who needed help. And then a TV reporter showed up and asked for me. He started asking me all these stupid questions. It was obvious he didn't know anything about running, racing, training for people with disabilities. But he shoved the microphone and camera in my face. I was so happy when Nicoletta showed up. I don't think anyone knew how freaked out I was at that moment. It was worse than hearing the words chronic, or acute, or chemotherapy. I quickly figured out how to make myself happy. I was there in an electric wheelchair. I didn't need anybody's help. I had a 17 mile range at 4 miles an hour. So I was there to help people. I became an Achilles Guide, I chaperoned people around the park. I hung out and watched the guide dogs. I gave tours of the The Park and Park Slope. I was fine. But for a few minutes I was not.

I got to know these people and they got to know me.  One of the highlights of my road to recovery was captured in the photograph to the left. Many of my new friends only knew me in a wheelchair and I wanted to show them that that wasn't me. I stood up and walked in a little circle around the chair. I didn't tell anyone what I was gonna do I just stood up and showed off. Standing across from me in the circle was one of my new friends, Abby.(She is first of all a rock star because as I dictate this she is running the Boston Marathon. And way down on the lists of things that describe her is the fact that she is blind.) Now, whenever I need a happy thought I remember hearing Abby say. " Michael! Are you standing?" "Yeah, I can do that!"

Now it's a year later and the Brooklyn Achilles Chapter is celebrating its anniversary. Old and new friends have joined the group and we get to walk a short loop of Prospect Park together.

After the loop we went back to a local burger joint for little celebration. I knew I would want to toast my new friends and I also thought I would get too emotional to actually do it. But unlike in the winter when I didn't have to make a speech, I found the strength to make this one. Well, I found the strength to ask Nicoletta to read it.

And yeah, just having her read it got me a little choked up.... Below is what I asked Nicoletta to read...

Larry Sillen took all these pictures
Two years ago life handed me a lot of lemons, a lot.. I knew I needed to make a lot of lemonade. 

But besides lemons you need sugar to make lemonade.

This group has been the sugar, without it I couldn’t of made lemonade.

I don't know who Heather Quinn is but she made this meme.

Monday, April 4, 2016

Progress, mostly forward. (Go to the bottom and look at the update)

wLots of news today. I had an appointment with my neurologist Dr. Myrna Cardiel. I will get to our meeting later. But I was really excited to go see her, not just because she's a great doctor but because it's been a while since I've been in the building where office is. It is also the building where I did the bulk of my outpatient therapy. And I wanted to say hi to my physical therapist. Really.

(If you're reading this, and you're one of those people who recovered from GBS, CIDP, a car wreck or whatever go back and visit your physical therapist. It will be worth it for both of you.)

I was really lucky. First, because my access ride got me to my appointment 90 minutes early. Second, because when I went to the 15th floor she wasn't with the patient.  Yeah, it was really good to see Jenna again. When I first started therapy with her I was barely able to stand on my own. I had a walker but didn't even use it. I wasn't bragging when I told her that I am regularly running a mile, or walking seven. And totally ready to cover 13.1 miles in the Brooklyn half Marathon in May. I was thanking her. Because, like I've said before, physical therapists get you to do things you thought you couldn't do.

But I also had a real physical therapy question. To the left is an image somewhat like the ankle foot orthotics that I wear in my shoes. I am not really that good at lifting my toes as I walk, so these keep me from tripping over my own feet. I have foot drop.

I told her that I'm not running much faster than I am walking. And I really felt like these orthotics were putting the brakes on me.

"YES. Those orthotics are to help you walk, not run. When you run you lift your leg with your quad andthat is fine now.... Maybe you should go back to where they may be orthotics and see if they could make one for running, or just try running in your running shoes."

Holy shit, I can do that. JUST. RUN. IN. RUNNING, SHOES.

Dr. Cardiel also told me to try to do something I thought was impossible. I looked at other people standing on their toes and didn't even know how they did that. I gave up, but she told me to just take off my shoes and see if it can be done. I can stand on my toes

By the way, to the right IS a picture of those orthotics in action as the sun was setting in Prospect Park. Go Achilles Brooklyn, YEAH!,

Then I went upstairs and saw my neurologist and she basically said the same thing. My quads and hamstrings are back to normal, which means they are stronger than the normal person's quads and hamstrings.

But my upper limbs, not so great. I'm getting a little more movement and a little more flexibility in eight out of 10 of my fingers.  However, due to the lack of nerve function in my hands the tendons in the big knuckles are stiffening and keeping my fingers straight. While at the same time the tendons in the smaller knuckles are bending inward. I have some grasp but I am developing what they call claw hand. Notsogood.
In order to attempt to to reverse that process I wear these contraptions on my hands for up to an hour two or three times a day. They don't hurt at all, and I usually take a nap, because I can't do much else. Once a week I go to Occupational Therapy where they bend my fingers until I cannot bear the pain. Hopefully, when the nerve function returns I will have some working fingers to deal with.

However, both my index fingers have a problem. They have actually slid out of their knuckles. Without knowing it at all I have two dislocated fingers. They don't bend that much when I put them in the contraption. So, 20 months after stumbling into my doctor's office I now have to make an appointment with a hand surgeon. Oh joy.

There is more news. Throughout my life I've always worked my way up into management. I am now lower management in the world of GBS. I think my official title is person of contact or liaison officer, and I'm unsure what I'd like to be called. But if you fill out this form, on the GBS– page, and you're from Brooklyn I'll be the one getting back to you. I guess I am the chair of the welcoming committee to the club that you never wanted to join. This is my new email address:

Update April 1. This is not a joke. Yesterday my doctor told me to try to run without the orthotics. It sounded crazy because it's hard to walk without them. I come so close to tripping over my own toes. But a couple hours ago I tried it. Below is the Facebook status that I didn't think I was gonna be posting for years. Thanks to a physical therapist who told me to try something that I didn't think I could do.

Holy fucking fuck.! I just took off my orthotics and ran.

Park Slope Armory YMCA
Fitness CenterNew York
LikeShow more reactions

Another update April 4

Last week I took off my ankle foot orthotics and ran back and forth a little hallway. Today I nervously took them off and stepped onto the 200 m track. Until I took my first step I was nervous after two steps I knew how Dorothy felt when she woke up in Kansas.

You call yourself a legitimate news organization! Shame on you!

A few lifetimes ago I was a PhD candidate in sociology. I didn't finish up because I didn't want to teach. Professors complain that if they don't publish they will perish, but I would rather publish than teach and that wasn't going to happen.  If I would've finished up I probably would've had a career in creating implementing and analyzing surveys. That's what sociologist do. It's been 30 years, but I still understand the importance of getting an adequately large random sample.

I remember how much effort we had to put in to get a random sample of likely voters. How we had to work so hard to get all different types of people to answer the phone. Not just people who were home when we happen to call. We had to call at all different times of the day. We also had to figure out how many people were likely to answer the phone in the morning as opposed to the evening so that we would call to get a little bit of everybody. We couldn't be satisfied with people who just happened answer the phone at 7 PM

Now I spend a great part of my day participating in consumer surveys to make a few dollars. I go to websites like mintvine and Inboxdollars a couple of times the day and give my opinion for cash. (Please click those links and join our get a commission.) My goal when I go to these websites is to click through on his many offers as I can with the possibility of getting paid $.25 or even a dollar or giving my opinion. Once I get through to the survey I honestly zip through the questions as quickly as I can so I can get credit. I've learned how to figure out how to answer the screening questions so I get through to a survey. I'll tell them I have a cat when I don't even have any pets and then I'll answer questions about cat food. The data that they collect for me is junk; I don't buy cat food, I don't eat at fast food restaurants, I don't drink soda, I don't go on luxury cruises and I certainly don't vote Republican. But I know how to get through the screening questions so I can get paid a few cents to fill out the survey. There are even websites and Facebook pages advising people how to qualify for surveys.

One of the survey companies I visit on a regular basis is called YouGov. YouGov is just like the other survey for pay companies. They send me emails and ask me if I want to participate in a poll in order to receive points that can eventually turn into cash. In their case each point is worth a 10th of a cent and each survey is worth about 500 points. So I get about $.50 a survey, which is kind of the same as the other companies. I fill out the surveys with exactly the same interest as I do when they asked me my opinion about a movie trailer. I do it as quick as possible so I can move on with my life. I'm not really reading the questions, I'm just getting them to make sure I don't ask any disqualifying questions incorrectly. Sometimes a multiple-choice question is "click answer B to make sure you're paying attention". If I don't click answer B the survey quickly goes away and I'm disqualified.

So, you know that expression "garbage in garbage out"? That originated with people who created surveys. If you collect meaningless data your results are meaningless. If you collect data from people were willing to sit at their computer and poke away to get paid $.25 your results are garbage. You can't predict whether one person will be get elected president based on the opinion of people who were trying to get through surveys as quickly as possible.  I happen to be a very likely voter, but if I wasn't even registered I would say I was a likely voter just to get through to the survey.

I am horrified see that real news organizations are using yougov surveys.They are not random, according to their own website they are based on people who subscribe to their service.

"Finally, respondents in New York, Pennsylvania, and Wisconsin were contacted March 29-April 1, 2016. Respondents were selected from YouGovs and two other online panels. These are “opt-in” panels which are open for anyone to join."
I was one of those respondents that opted-in to the panel. I know my answers meant nothing. I was one of the nonrandom people willing to opt-in. This kind of survey might be fine if a company is trying to find out which celebrity is better to endorse something, or what color background works better on some promotional email. But shame on you news organizations for using this kind of data. You can't use this to tell me who is going to get elected president. This you YouGov Poll is not in any way a random sample. Not a sample of people likely to vote, it's a sample of people that have signed up to take surveys to get paid. When news organizations like CBS or the New York Times use this as news they lose their credibility.

Being in a position to receive and reply to an email like the one below is not a random thing.

YouGov What the world thinks

Hi Michael, 

You have been selected to share your opinions in a new YouGov survey. 

We know your time is valuable. As a way of showing our thanks, you'll be awarded points when you complete every survey we email you. The longer the survey, the more points you earn. 

If you cannot view or click on the button above, please copy and paste this address into your browser: 

Thank you for being an active member of the YouGov community!

Kelly Connor

Sunday, April 3, 2016

Shit people say to someone who has recently suffered a life changing illness (updated April 2016)

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.

Saturday, March 12, 2016

The C-word and the N-word

I have already written over 1200 blog posts, up till now I really didn't care if I offended anybody. For this one I'm trying not to offend.  But it's a little hard to put together, so please stay with me

I have gone on and on about how people said some really stupid things to me since I became disabled. Among them are friends who thought it would be funny to refer to me as the cripple or gimpy, or thought my new nickname should be Wheels. Maybe it was cowardly, but I never said anything. Inside, it felt worse than when I heard doctors use the words chronic and acute for the first time. I just collected these stupid comments in this ongoing blog post. I hadn't given much thought as to why it bothered me so much. Maybe it was because it was the first time someone referenced me based on my outward appearance. I'm white guy, what's to make fun of? Occasionally, people try to make fun of my religion. But, I did not make that connection because it's only my parents religion. (Someone once looked me in the eye and said "why would you help me, you are a Jew". It didn't bother me, it just let me know I was dealing with a crazy person.)

I would never reference someone either in joke or in an insult based on their race, gender orientation, faith, or anything else they have no control over. It's not that funny, and if I would have to sink that low to use it as an insult it would mean I have nothing reasonable left in that argument.

There are words I cannot say out loud even when I'm alone here with my voice to text device. Some of them are common words, that people used to generalize against people with certain colored skin or people from certain parts of the world. I can't even think those words because to me they're just people. But yesterday I caught the last minute of the show called Blackish. Apparently, the episode was about who gets to use the N word.

I suddenly realized why African-Americans have a right to go bat shit crazy if someone uses the N word, but are fine with it when other people use it.  The answer is easy, it is for the same reason I want to shrivel up when someone who is perfectly healthy calls me a cripple. But, if some of my new friends I have met in the Achilles running club want to give me a hug at the end of a race and say "Way to go my crippled friend!" I'd be fine with it.


Wednesday, March 2, 2016

My Angry Rant for Rare Disease Day / Autoimmune Disease Month

February 29, 2016 iwa Rare Disease Day. I think, I hope, it's just a coincidence that it's leap day. But maybe that's more appropriate that people with a rare disease get a day once every four years.

I have Acute Motor Axonal Neuropathy. It is a rare variant of a rare disease called Guillain-Barré syndrome. I'm told only a few hundred people in the United States, a country of almost 350 million have the same condition as me.

It doesn't make me happy to have a rare condition. In fact, I have a lot of opportunities to be angry. I get angry when I see a TV commercial telling me to ask my doctor about a drug that I don't need. There's no magic pills for me and no pharmaceutical company is gonna make a lot of money developing one. It angers me to see a TV ad for a drug that will cure my constipation because I take too many of a certain type of painkiller. I get angry when I see a commercial for a lawyer telling me I could sue someone. There is no lawsuit for me, nobody did anything wrong.  I am definitely not a cute kid and would never pretend to be a wounded warrior. It won't make me happy to toss a football around with some quarterback before I die and I definitely don't need to go to Disneyland.

I get angry when people "run" for the disease that has the certain colored ribbon. That doesn't help. But none of that stuff defines me, as I was angry about everything before I got this disease.

I used to work organizing running races. A big chunk of those races with charity events. People would show up in their special colored shirt and think they were running a race but the important thing there was that they raise money for charity. Some money went to charity, but a lot of it went to the people organizing the event. I think, I hoped that some money went towards research or helping people overcoming a terrible disease. I always hoped that in the end the charity got more money than it would've if the race never existed. But I was never really sure. I'm not telling you not to go run the race for the blue ribbon disease. Because if you do some more money is probably going to research and care for people who have the blue ribbon disease. But the emphasis is on some. 

A few years ago one of my kids classes was invited to participate in the AIDS March. The whole six grade class went. I was never asked for money and they were given no AIDS education. But they all had aware a special T-shirt so they can have their picture taken as a group. How in any way did this help stop AIDS? It was clearly just a photo op.

An entire industry has been created to sell stuff with slogans on it. So look at this. March is autoimmune disease awareness month. And if you go to the website it's just a place to buy ribbons and T-shirts and mugs. They don't even pretend to be a charity. No money goes to research. No money goes to help sick people. Nothing, nada, zero, zilch.
GiftsForAwareness.Com was established by cancer survivors to raise awareness for cancer and other causes with their unique, powerful cancer slogans on t-shirts, apparel and gifts. See Cancer Survivors calling attention to cancer, health and other advocacy causes to support awareness. An array of ribbon t-shirts, apparel and gifts to promote the importance of cancer and health causes
So I am  put this question out there. Can someone tell me how Rare Disease Day or Autoimmune Disease Month could've helped me or can still can help me?

I will start....  The nurse in my doctor's office was aware of Guillain-Barré syndrome and told me to hurry up and get to the hospital. If she would've misdiagnosed me I might of been in a much bigger trouble.

Anyway, I never was one to wear a ribbon, but I do wear pins. Now I wear this one. You can buy it here.

From my youth I saved some of my pins. This one was my favorite.
I am still this guy


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