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?
I feel little better nowNow 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.
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
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.
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.