Saturday, October 8, 2016

Shit people say to someone who has recently suffered a life changing illness (Updated April 2017) (NSFW)


Update, May 2017


"Where there is a will there is a way"

This irks me in so many ways. In the context in which it was sent to me the person didn't even understand that I wasn't sure whether or not I wanted to even do the thing we were talking about. I wasn't sure it was worth any effort, not to mention this infinite effort implied by this overused phrase.

But when someone says, "where there's a will there's a way" to someone with a disability that they may or may not understand it just shows a complete lack of sensitivity to what a disabled person may or may not be able to do. Just because you saw a video of a guy with no arms and legs pulling a locomotive across Tasmania doesn't mean that a guy who has nerve damage in his hands should be able to operate a motor vehicle on public roadways. Or if you read about a woman who can't see, hear or speak but routinely saves lives at her job as a lifeguard doesn't mean I should go back to work on loading a truck.Anyway, these people are circus acts. And really, just because someone ran a marathon in 2:10 minutes doesn't mean that anyone could do that if they just tried harder.

So please think before you open your mouth. If you tell a disabled person "where there's a will there's a way" what they're hearing is "You are a loser if you don't achieve my definition of success for you". 

Update April, 2017

So it's been almost 3 years and I've accepted the fact that my gate is less than perfect. I walk funny. A little like Frankenstein or a zombie. My arms don't swing the way yours do, but the big problem is I don't really lift my toe as my foot is hitting the ground. I don't land on my heel, my whole foot hits the ground at once. You don't have to announce to the world that you can hear me coming. Everybody knows that, ass hole.


Update November 2016 

Okay, I really have to vent here. Because I mostly kept my mouth shut. But this doesn't really have anything to do with how to treat people whose lives were changed because of illness. This is about how to act in front of someone who's disabled, specifically using a wheelchair.  For now, and just for longer trips I'm using my wheelchair  again because I broke my foot.


It's hard to be in a wheelchair, especially if you thought that part of your life was permanently behind you. So I'm trying desperately to hold on to the little pieces of my life that I have regained since getting out of a wheelchair.... My running club organizes an easy run of the last 10 miles of the New York City Marathon course one week before the race. I was on my way to participating in this race when my foot broke, so for me the glory of the marathon will come next year. But I realized that I can still help out my club by using my wheelchair to go behind all the runners and make sure everyone finds their way from the 16 mile mark to Tavern on the Green and Central Park.

Emotionally, it wasn't very easy for me to decide to do this in a wheelchair but I put my big boy pants on and showed up. And then it wasn't too bad I was able to keep the wheelchair going at a steady pace and keep up with the back of the pack. I felt like I was doing a good thing and I know next year I'll be back on my feet. After a couple miles up First Avenue we had to detour a little bit around a construction site. A construction worker looked at me and said " That's cheating," and I heard another one say, "Ccan I write on your lap?." I replied, and they heard me, "that's not even a little bit funny."

But here's what I wanted to say.

Fuck you, fuck you, fuck you! Can you fucking imagine how every molecule of my body would rather be running?! Who are you, fucking Donald Trump?
Now go up to the third floor of that building you should be building and jump off the fuckin' ledge. Break your back so you children have to change your fucking diaper.
I feel little better now


Update October 2016

This isn't the worst thing, and I get it from people who really care about me. It's been two years and five months since I was completely paralyzed, and I've gotten a lot better. But I have come to grips with the fact that I'm never gonna be the guy who can hold his fork with just three fingers. In fact, I have accepted the fact that I will always need to use some special contraption in order to pick up a fork or spoon. I actually find it easier to rest a sandwich on the top of my right hand and hold it stable with a finger from my left hand as I aim it towards my mouth. So if we go out to lunch together be prepared for a little bit of a mess. It's okay, when I'm home alone and want something to eat it's a lot messier.

Yeah, I can deal with the fact that my hands will never work like yours. But it's a little distracting to sit across the table from someone who looks at me like it's the end of the world to them .



Update June 2006

A couple weeks ago I finished the Brooklyn Half Marathon. I'm getting a lot of congratulations from people who know me and even strangers. They ask what's next and I told him I plan on completing the New York City Marathon. Some people don't know what a marathon really is, so I tell them. Then they look at me kind of crazy and say something like, "Oh, have you done that before?" I respond, "yeah, before this crap happen to me I was preparing for my 30th marathon and this will be my 20th New York City Marathon. Ironically, the last New York City Marathon that I ran I was a pace team leader, and held up a sign that said 'five hours run with me'. This year, I'll be competing as an Achilles Athlete, that means I will have guides assigned to help me."

Then they look at me and tell me that I will run a five hour marathon again or I will be a pacer again. I smile and say something like, yeah... One step at a time. But what the fuck, do they have any idea of the difference between walking the marathon distance in 10 hours and training to run it in five hours or less. NO! Or, do they know something my doctors don't. I don't get it when people just open their mouths and tell me what I will do it again. Do these people know that I can't use a porta-a-potty without help? It doesn't make me feel better when people just open their mouths and say what they think is nice. The doctors, the best doctors in the world, don't know how much more healing is in me. It doesn't make me feel better to fantasize about what I might do. If you want to make me feel better, just acknowledge how far I've come.

The lawyers make us say certain things to protect stupid people from themselves. "Past performance does not guarantee future results." Unless you really know something that my doctors don't you should keep your mouth shut.



Update April 2016

If you are the person who spent their entire life minimizing the time you spend off the couch and now you can barely do your daily activities because your knees won't hold up your excessive weight, don't tell me to rest.

I spent four months in the hospital where I couldn't even roll over in bed, I rested enough. For another year people applauded me because I can stand up, I rested enough.

Now when people tell me the rest it just makes me want to run further.

Don't tell me to rest

Update March 2016

I haven't used a wheelchair in many months nor a cane in a few weeks. Sometimes I see strangers on a bus or in the park using the same kind of equipment I used to have or in a similar wheelchair. It's hard to figure out what to say. At one of the races I helped organize, a husband pushed his wife around Prospect Park, in the type of wheelchair I used to hate, one that was uncomfortable even for sitting and torturous while being pushed over bumps. I 'ran' over to her and told her that I used to be pushed around one of those and now look at me. "I can walk". She said "no my condition is different I'm never getting out of this chair...."   I met well, really. But I realized the most supportive kind of statement isn't always that supportive. It might just remind people of things they just don't want to think about all the time.

I also should mention I have joined the Achilles Running club for a lot of their runs. I've had the pleasure of meeting lots of people with disparate disabilities. I consciously did not say "see you later" as a way of saying goodbye to blind people. But I listened to them and realized that they were saying "see you later" to people all the time. I also learned that people who I just are blind  are not always totally blind. There are many degrees of visual impairment. After one of our runs we took a breather in a playground where my kids used to play. The guide who was helping my new visually impaired friend helped her walk around all of the playground equipment so she can touch it and know what I was talking about. Then she took out her phone and started taking pictures of the slides and ramps. She said she was going to go home upload them to our large screen so she could see what we were talking about. I had no idea....

Yesterday, I attended a big family function where I saw a lot of people who haven't seen me in a long time. They were really happy to see how far I've come. Some of them hadn't seen me since I've been sick and only heard that I was paralyzed. The question I wasasked me was, "Are you going to fully recover?" Or "How long will it be until you're fully recovered". I know, I know they really ment well. They saw how far I came and were excited about my recovery. My answer was vague, "If I can recover as much in the next 20 months as I did in the last 20 months I'll be very happy." But deep in the pit of my stomach, I really didn't like being reminded that I'm never going to be the same again.


Update January 2016

Included in the doctor's letters that they wrote for my disability insurance includes the statement, "the patient does not suffer from any psychological or cognitive impairments." The following two statements come under that category.

  • A friend asked me if I needed any help getting out of the car. I said, "No I'm fine." When I was getting out of the car his hands are all over me. Dude, you asked me a question and I answered it. Why did you ask it, if you're not gonna follow my instructions
  • another person thought it would be a good idea if I went to a certain meeting. Then he called me back and said it wasn't that important because of my condition. My condition does not stop me from making that decision for myself.
Here's the big picture. If I need help, I'll ask for it. Please don't make a big deal out of what you think I can and can't do. I don't know what I can and can't do so what makes you think you know?


Update December 2015

I just realized the same crap came out of this one person's mouth in just one week.

  • He said he didn't know where to sit in the car because he had to figure out where the "cripple" would sit.
  • He was surprised that I walked to a party that was a mile from my house. He said, "Did it take you three hours to get here."
  • I don't have enough strength in my hands to hold onto a pencil. He reached out to shake my hand and when I shook as he said, " Ack, you should shake like a man."
BTW, this was a grown man.



Update August 16, 2015

In one breath someone called me a gimp, and the next breath he said I might be too drunk to drive you can come with me you couldn't get any more fucked up. If I thought he was too drunk to drive I would've gotten the car, and I would've forgotten he said that.


Update July 29, 2015

Don't make jokes that you wish you had a wheelchair. Don't fain envy. Don't tell me you want to sit on my lap. Not remotely funny! And I have to clamp a thing onto my hands so I can hold a fork. Don't look at it and say I wish I had one. No you fuckin don't!

Update May 23, 2015


Last night I was reminded that Tom Cruise is a good actor.  He played Ron Kovic in Born on the Fourth of July.  That scene where he came home from the VA hospital in wheelchair His face as everyone told him he looked good. I cried inside.

Update, May 3, 2015

This is something that's been done by a lot of people who I really care for.  Just because of sitting in a wheelchair and my back is to you and I don't know you're there doesn't mean you could tap me on the head.  I hear fine if you say my name turnaround.


Update, March 16, 2015: 

The worst thing you can do if you see someone you think you know and suddenly in a wheelchair is  to look away.  Yeah, I'm the guy who helped to you unload a truck at the food co-op, or I might be the guy you ran all of the Park with, or I might be the guy who just cheered for you when you ran a race. I am still the same guy!!! You can say hello!!!


I know a lot of you people might be shocked to see me in a wheelchair.  But please engage the brain before you open your mouth
.
- Well, this might not have happened to you if you didn't push yourself so hard with all that running
Actually I probably would have been a lot worse off or even dead if I wasn't fit when this happen to me.

- Is disability temporary or permanent?
It depends how long I live and go fuck yourself.

- I know someone who has something like what you have.
No you don't, you don't even know what I have.

- I just remembered another one. When I was in the hospital and couldn't get out of bed people asked me if the nurses who bathed were hot.
I honestly didn't think of that until people asked. But it did make me wonder if their moms were hot. 

Okay, The crap above represent shit that came out of peoples mouths who knew me. Below is the shit people say to be to a stranger
I'll pray for you
Really, which God?  The God that put me in this chair or the God that you gonna pray to that will take me out.  I think it's pathetic that these believers assume I'm one of them but I've learned to just say thank you.

Everything happens for a reason
I don't even know if this can possibly mean. And my being punished? Am I suffering because of the fact that someone else got lucky?  Do they think that they has to be some sort of balance in the world and I need to be on the bottom put them on the top? So I just roll my eyes and ask someone to push me away from that person.

I'll add more as people say more shit to me.  Or you could leave your stupid shit n the comments.

27 comments:

  1. How about "You'l get better when you want to get better"

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    1. Oh, don't get me started on all those people who want to pray for me!

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  2. The WORST thing to say to me is...what is the matter with you, you don't look sick!! I've gone off on a few people who say that to me! Cori

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    1. That is the worst. I heard that many times. I don't look sick, but you don't look stupid either; looks can be deceiving. ;)

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  3. I never prayed for you!

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  4. I also have a post about "what people say" I have my share of senseless insensitive beyond stupidity shit.
    A coworker who was going through kidney failure at the same time said to me "I feel sorry for you, at least I have options." Another person said "Your diagnosis must feel like sitting on the rail tracks and watching the train approach" ...Yeah, both times I wanted to say GO FUCK YOURSELF, YOU PIECE OF USELESS SHIT.
    I do like it when people tell me they have me in their prayers since I do believe in the power of prayer. I just wonder how many actually pray for me.
    I like to hear success stories. It's where I gained strength by hearing that they knew someone with something similar who made it.
    It made me believe that maybe I could be like that person.

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  5. Well said Mike. Ha! it reminds me of someone who said to me that my husband wouldn't have died if he wasn't such a negative person. Hells bells after 20+ f...g years it was news to me.

    Anyhow Mike you will no doubt have more shit said to you, much of it by people who just don't know what to say or are at a loss at to what to say, so they think something is better than nothing.

    "Everything happens for a reason" ?? someone actually opened their mouth and said that?!

    Still thinking of you Mike, don't stop posting on your blog.

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  6. hi mike, so sorry if this comes across as wrong, not intended, I have just read your blog, it's brilliant, I haven't laughed so much in a very long time, I was diagnosed with GBS, then diabetic neuropathy, now CIDP, talk about hit with the shit stick of life, and if one more person says to me, ' oh I suppose it could be worse' I will throttle them, oh no I wont I cant get my hands to grip tight enough !.
    so mike I wish you well, it's good to hear and see that someone else out there is sick of the patronising ignorant people out there, some of whom may I add are in the medical profession, you can read as much as you like about these syndromes, they should try living it, then they might know what the f**k we are talking about, well that's if our intubation tube has been removed !

    ReplyDelete
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    1. if I can lift my arms I would give you a hug

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    2. if I can lift my arms I would give you a hug

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    3. Thanks mike, but please don't do the gentle squeeze type hug,you know the ' oh how awful,it must be for you' type hug, or the 'oh well,hope you will be better soon' hug as they flee the room...
      Keep up the honesty mike, it's a tonic to read.

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    4. Same here... was in need of a good laugh and this did the trick. :) It's truly amazing what stupid things come out of people's mouths isn't it? I get tired of hearing: "Well you LOOK fine", as if I'm lying about being in agony... or as someone here said: "You need to get out of the house more often" as if we choose to be home because we're lazy or something. Or: "I sprained my ankle one time and I learned just to walk through the pain so if you did that, I bet your back pain would improve"... the list goes on and on with stupid things people say. In any event, I enjoy reading this blog... thanks for some good chuckles this morning.

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  7. I know all too well how that feels. I was 24 years old in 2013 when I was diagnosed with GBS, then later on with CIDP. Not only did all of the above happen to me, but I also got comments from workers at Walmart. Several times I heard things like, "Do you really need it? Or are you just lazy? Because some people actually need them.", "Is it because you're overweight?" (mind you, before the condition, I was 210 lbs and walked just fine), and even "Well you walked in here just fine, why don't you just keep walking?" My mom even said to me at one point, "I'm sorry you were ever born. You wouldn't be suffering like this if you hadn't been." So yea, needless to say I definately know the frusteration you're feeling.

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  8. My other all time favourite "God never gives you more than you can handle" Really??

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  9. I don't know how you feel. Nobody knows how anybody feels. That's kind of a given for the human race. But I want you to know that reading your blog helps me as a person who has a weird health condition which is similar to yours if not exactly the same. Thank you for sharing your thoughts.

    I got really sick in 2008 and the doctors couldn't diagnose me for months, all the while my nerve damage worsened by the day. They "think" I "might" have GBS but are not 100% sure. I was given plasmapheresis in the hospital but was later denied IVIG treatment. I was too sick to fight for it. Honestly it's mostly a blur. I have extreme nerve damage in my legs, feet and hands. And I am a different person. Hard to quantify it but I no longer have my fearlessness, or my courage or sense of adventure that I did before I got sick. My memory sucks too. Depression has become pretty bad. But honestly the hardest part of this whole thing has been the fact that I have never ever met another person in real life who has this. I spent years feeling as if I was the only person on planet earth who has gone through this. It took me over a year after leaving the hospital until I was able to turn on a computer and try to connect with other people. Before then I could not tolerate the light in my eyes. I was also hallucinating from the meds. That's when I first joined facebook. It helped me tremendously. I reconnected with people I knew from high school and that helped me overcome my intense isolation. But to this day, I have not met anyone who has this condition.

    I am very grateful to you for writing your blog and I appreciate you putting your experiences out there for us to see. I support you and if there is anything I can do to help you in any way, please let me know. I know lots of stupid jokes and I always like it when people share their humor with me. Thank you so much for posting your awesome blog. You rock.

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    Replies
    1. don't let anyone deny you the right to any emotion you want to have. it's okay to be as angry as you want.

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    2. don't let anyone deny you the right to any emotion you want to have. it's okay to be as angry as you want.

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  10. Feelings are feelings. They are not right or wrong. Honor your feelings.

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  11. I am 75 years old and walk with a limp. Sometimes people I don't care about me why I'm limping. Sometimes I told him about my medical history. If not I just told them I just finished a good horse back ride. If I'm really in a good mood I just told him I had a lot of rough sex.

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  12. I hate the one thing said over n over..you need to get out more. Erm....do you think any one of us living with chronic incurable illness enjoys lying in bed in agony as anothrt week without seeing anyone but your partner for company after they finish work? Another person keeps saying she'll come take me to her house....I dont do stairs and I will need the loo so tbats a no no.
    Mainly its the way people use as an excuse for their reasons not to call in. When you say text first to check youre up to said visit they are always too busy or say they don't want disturb you!?
    Being made to feel like you neex to wear a bell round your neck and shout unclean is no fun is it! Lastly the oh can younot walk anymore...I saw you wLk to your bin yesterday comment was the one that really clinched it. From now on it pooks like life with ables is just too complicated for us reabled. I now realise I really am so very different to them some sort of wierd alien. I just want to live life best I can and its society that makes me different not my disability

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  13. When I was suddenly hit with my neurological condition and had trouble walking and standing upright a woman who just started working in my department at work made a point to stop by my desk to say, "When I get my little aches and pains . . ." I didn't hear the rest that came out of her mouth after that. I just shook my head and thought how she was unbelievable.

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  14. Or . . . "I wish I had the luxury to lie in bed every day, but some of us have to go to work."

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  15. Michael--Thank you for the updates. I am very glad to read that you're not using a wheelchair or a cane and that you're on pace to complete this years NYC Marathon. It'll be great to again have you as one of the finishers.

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  16. Congratulations on all the progress you've made! You rock, dude. Never give up, never surrender, and never listen to the a$$wipes who think they know your story. That said, I was once told that if I had just had a bowl of homemade chicken soup when I first noticed the paralysis I would have recovered in no time.

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    Replies
    1. Ha, all this crap that is happened to me was triggered by a stomach virus. Most likely from chicken.

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    2. Hi Michael. Thanks for your candid thoughts, feelings and experiences. I relate a lot! I acquired GBS from eating undetcooked rotisserie chicken from a local deli.

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    3. I wish I knew which food made me sick. Then I might have someone to sue

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