Making an ass out of you and me
I have to be honest with you, I’m sort of stuck tonight. There are things I want to say, to write, to tell you. But I’m feeling stifled. I’m feeling closed off on my own blog.
It all started with a blog comment that I got earlier today. A part of me wants to believe that the person who left the comment was well intended. But then I read it and realize that, no. It’s not. It was intended to be unkind. And that bullshit baffles me. Who does that?
And as much as I want to let it go and walk away, there are things that need to be said. Because if people really believe what was said in that comment, there is much to clarify.
First, (and honestly, this is what bothers me the most), I have to address the insinuation that I think my pain is worse than everyone else’s. At no point have I ever said or, for what it’s worth, thought, that my pain is worse than anyone else’s. One of the things I struggle with the most is people in my life feeling guilty about complaining about their pain because of mine. I cannot stand when others feel like their pain isn’t real or isn’t serious because they compare it this headache. Because it is.
Pain is pain. I have nothing but sympathy and empathy for anyone in pain, whether it’s short or long term, whether it’s neurological or musculoskeletal. Pain, as a rule, blows. Mine is not special, it’s not unique and I hope that you realize that I know that.
Next, I guess I haven’t done a good job of explaining the way my life works. You see, I’ve had a headache everyday for 6 months. Sometimes the pain still surprises me, but I have learned to cope with a lot of it. It is still crappy and hard to deal with, but to say that I shouldn’t travel because of it, or go on vacations because I’m in pain is insane.
And yes, the past few weeks have been a clusterfuck of health issues. And if you think that they were not considered when I decided to go to New Orleans this weekend, you are mistaken. I wouldn’t be going if my doctors or my husband (who incidentally, IS a doctor) or I thought it was unsafe. I whine a lot, but I’m not stupid.
I realize that I have spent a lot of time discussing school lately, because it is a great stress in my life, just as it was last semester. And if you’ll recall, with a great deal of effort (AND with a trip to New Orleans in there too…), I passed all my classes. In fact, I did better than a very significant portion of my classmates. Not because I’m anything special, but because I worked hard. Just like I am now. Just like I will for the next 2.5 years.
I appreciate the concern, but I am not in danger of being kicked out of my program. And dude, I absolutely know that I’m in over my head. That’s pretty much the story of my life. But anyway, yes, my school makes a lot of accommodations for me, but I’m also in a graduate program for health professionals. It’s a graduate program taught exclusively by people who work with patients with disease and disability. I’m not a traditional student, but so far, I’m still a successful one.
And knowing how much I have ahead of me, knowing that I have a lot to catch up on, I’ve already informed my husband and my friends who I’m staying with that a great deal of this weekend will be spent indoors, studying. I very much want to pass all of my classes, and if I thought that this weekend away would prevent that from happening, I wouldn’t be going. It goes back to that whole not stupid thing.
If you really think that I’m making mistakes or that I need to consider something, there is a time, a place and a manner. Leaving snarky comments where you mock my pain doesn’t fit any of those. Same thing with twitter accounts that are used solely to mock someone for living their life and sharing bits of it with others.
The vast majority of people who stop here and leave comments or send emails are encouraging, supportive and helpful. And so it’s especially unfortunate that the echos of those who are not tend to reverberate the loudest. Perhaps eventually I’ll learn to drown out the ugly, but for now, I just wish that we could all grow up and treat each other well.
And until then, I guess there will be more days like today. More ugliness and more explaining. More days where I wonder if it’s even worth it to continue writing. When I consider walking away for good.
26 Responses to “Making an ass out of you and me”
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Welcome! I'm Katie, a 27 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to falling over in public to being a doctor's wife. Sit down, get comfortable and stay for a while.
I don’t know why some people are just mean for no reason (maybe bitterly unhappy with their own lives?) but I do know that I’ve been reading your blog for a few months and I admire your strength. I wish you all the best and am hoping that your headache will miraculously go away someday soon. And this is YOUR little piece of the internet to write whatever you want so don’t let some thoughtless people discourage you (I know, easier said than done!). I hope you have a great trip
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Well said.
I hope you have a fantastic time in NOLA.
I’ll be jealous, here in the cold mid-Atlantic region.
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Eswiss Reply:
February 11th, 2010 at 10:23 pm
Gah. I mis-typed the link to my OWN new blog.
Jeez. Top one is wrong (and links to some very weird blog), this one is right.
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I did that once. Walked away from my blog because of a stupid comment from a jerk. I sank into such a deep depression that I’m not sure if I’ll ever dig out. It’s not worth it. You use this page as a spot to vent and express things you are dealing with. That’s the point.
Ignore him. Ignore the twitter account. They’re probably one in the same.
I think New Orleans will be good for you – you were looking forward to it, and a break from regular life can be good. And like you said, you’ll still be studying and working and in pain as you have been at home.
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OK… so your young, but over 21, your a productive member of society in a field where you will be helping others. Your in a happy relationship with someone of the same beliefs. Your not asking for a hand out, hand up, or god forbid help in any way form or fashion. I have chiari, I have medical people with the same or worse attitude than the person who posted. Moment of clarity to the aforementioned idiot. There are billions of websites, if you dont want to hear it. GO AWAY SCHMUCK. That person lacks a few basic traits that are considered by many to be “normal” such as, empathy, ability to control the shit that flies out of their mouth/fingertips, common sense, and oh yeah ability to NOT have to read or post by simply going somewhere else. Yes there are times I read your page and go HOLY POOP, why should I have the surgery she is struggling. Then there are times I read your post and go wow, how is she handling grad studies when I can’t remember if I ate breakfast. Hang in there, tell the window licker in the post to kiss your Mardi Gras bound butt. Seriously. I will be at Mardi Gras on Sunday. I will pay for it, yeah, but should I spend my life on my couch? NO. am I asking your poster for their permission, money, time, sacrifice or to care for me afterwards NO. and neither were you. blow their crap off and do not let an idiots opinion stop you from your release. Your right, your privilege and your experiences .
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I didn’t see the comment, but just from what you said about I feel like I can pretty confidently say that a) that person’s a jerk and b) s/he’s really wrong. Also, I mean–this is your blog; this is your life, you know? I’m sure you’re not blogging because you’re hoping people give you stupid advice about a life they aren’t living and don’t know that much about. Jackass comments like that just seem totally irrelevant to this blog and to your life (though I know how they can get really under your skin), and I agree–ignore them.
I found your blog recently, but it’s quickly becoming one of my top ones. I am so, so sorry you’re in such pain all the time–like others have been saying, I am AMAZED at your strength and perseverance. I have migraines with aura & some severe stomach issues, and, while I’m sure that doesn’t compare to the amount of pain you find yourself in daily, I know that when my conditions flare up I am COMPLETELY useless, and I am so, so awed that you’re able to do everything in your life that you’re doing.
Also (sorry, this is getting super long), as someone with chronic health issues, I do know that people who’ve never experienced similar issues really frequently assume your pain is nothing, or not that bad, or that you’re just a wuss about it. Not that this excuses being a jerk, but I wouldn’t be surprised if maybe your commenter has been on the receiving end of that kind of dismissal and feels bitter about it. But who knows. People are weird.
I sincerely hope you find some relief soon.
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As echoed by many, the hell with the haters and trolls.
Your pain is YOURS. No one else’s. Just like this blog, it is your platform, your outlet. The ones that choose to read and accompany you on this journey in a positive way are the only ones you need.
The rest? They can stick it in their under-filled brains.
: )
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You’re really giving this jackass more attention than he deserves, and I am too, by acknowledging him with this comment. Oh well, it’s your blog, and you can cry on it if you want to.
When you live in constant pain, you can’t help but write about it in your blog, because the pain consumes your whole life (which is nothing to want to brag about but it’s true). Trust me, I speak from experience. Most normal, compassionate people (unlike your jackass commenter) just read your posts and sympathize with you without any judgement.
So, if the crazy loony stalker-commenter keeps getting his nasty ass comments deleted by you, he’ll finally go away and pick on a blog his own size.
Enjoy mardi gras!
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Ok I really like you Katie. I can’t imagine what you are going through. My problem is this. I have stopped commenting because I feel like it doesn’t matter when I do comment. I have made many encouraging comments and even emailed you trying to be encouraging and supportive. I didn’t do any of that for a thank you or to receive acknowledgement. However, it is so discouraging when I see all the posts you have with many, many supportive comments that seem to go unnoticed. But when you have one person make a negative comment, they get an entire post in response.
I don’t know what else to say to you. I know there is nothing I can say that can help you. I am still reading and really hope you figure out what is causing you so much pain and suffering but I just don’t know what else to say. I feel pretty helpless. And I really feel that the people who leave rude comments are just trying to get exactly what you gave them. Attention and knowledge that they upset you.
Sorry if this comment came across as rude. I honestly did not intend that. I just want to be honest with you because that’s what friends do.
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Katie Reply:
February 12th, 2010 at 7:35 am
Becs-
I can assure you that comments do not go unnoticed. I said it in the post, no matter what I do, the negative stuff rings loudest. Try to remember your boss at work. There’s probably 100 times where he/she hasn’t said anything negative, but what you remember are the 2 times they did. It’s hard not to. And yes, I do give those people just what they want. I know that I do, always have. But I am not a person who can ignore stuff like that. It eats at me until I say something.
As for emails, they have gone by the wayside. Not because I don’t care, but because I am swamped with school and keeping my marriage working. It’s sad, I realize, but it’s true. I hope to get back to getting back to them sometime soon. But I’ve got midterms coming up, so sometime soon is still weeks off.
This comment isn’t rude and I appreciate your honesty. I’m going to be honest in return. It’s sometimes hard to respond to everything. It’s hard to thank every person for every nice word, even though I appreciate them. I feel like if I go through and add a reply of “thanks” to each comment, it’s not enough. But I also don’t have time to give heartfelt thank yous with long dialogue to everyone who reads. So usually what I do is read, and if something needs clarification or something of that nature, I’ll reply. Otherwise I won’t.
It’s not because I appreciate one more than the other or because one goes unnoticed, it’s just a time thing. And if you think it doesn’t bother me, you’re wrong. It does. I wish I had the time and energy to thank everyone personally, or to make sure you all realize how much I appreciate the supportive comments and emails.
I appreciate your feedback. Please don’t think that I’m ignoring your email or don’t care about it. I do, rather a lot. And hopefully I’ll get back to you when I go through emails in a few weeks, I’m sorry you feel discouraged, I wish I could fix that.
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Becs Reply:
February 12th, 2010 at 7:47 am
I get what you are saying about the negative comments being the loudest. I haven’t had a negative comment on my blog yet but I am sure that will come at some point. I really doubt I will be able to just let it go and not take it personally. Unfortunately, the internet gives people ways to be assholes and be anonymous.
I totally get that you can’t thank every single commenter. That wouldn’t be possible. I’m glad I can be honest with you. This isn’t the first time that I have commented about something that was hard to express and you always handle it extremely well.
Oh and totally random and off subject but I recently went back to your wedding recaps and you are absolutely gorgeous. I loved reading and the wedding and seeing all the pictures.
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Some people just suck. That’s all.
Hope you have a great time in New Orleans. That’s my mom’s hometown, I consider it my 2nd home. I miss it terribly, hope to get to go visit soon.
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For someone who is so confident in their choices, you sure are defensive.
And you obviously DON’T appreciate my input, suggestions or concern (for the record, your lifestyle is so completely incongruent with your reported pain that I am not the least bit concerned about you). Trust me, I’m aware that I was critical and I didn’t expect appreciation. I commented because it appears you do not in fact see yourself the way others see you and it seemed worth noting. Yes, I said others. Apparently, I’m not the only one, I don’t even know what twitter account you’re referencing; it’s not mine.
As for NOLA, of course I assumed you would be missing school – you said you would be there for Mardi Gras and you failed to specify that you really meant the long weekend prior. Everything I “know” or believe about you is based entirely on assumptions I’ve made after reading your words. I don’t really know you (nor do I wish to, it must be exhausting for your family and the people in your program), so that’s all I have to go on. That said, I do really know people who deal with severe and chronic pain, both online and off. Suffice to say you have next to nothing in common with them.
I do hope you have a good time in NOLA, though I doubt you will. I can just picture it now… The airport will be the clusterfuckiest. The plane ride will be the bumpiest. The rain will be the rainiest. Your pain will be the painiest. It will be the perfect storm of crappiest crap, same as every other day.
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Katie Reply:
February 12th, 2010 at 1:45 pm
Keeyum-
Hell yes I’m defensive. You get on my blog and not even subtly call me a faker (and I know you’re not the person from Twitter, I don’t recall saying that).
So what is the correct response to your accusations since you have extensive knowledge of people with “real” chronic pain?
Let me see if I’m understanding you. Because I continue to go to school while in pain that means my pain isn’t that bad? Huh. I’m sorry that your friends with chronic pain can’t. That’s unfortunate and I hope you have a shred of decency to not make them feel like shit for their pain. Though judging by what I’ve read so far, I doubt you do.
What exactly is it that indicates that my pain isn’t real? I guess I’m lucky to have the coping skills that I do. I also have an amazing support system who choose to be around me. I’m not sure what kind of shitty friends you have that hate helping you out when you need it, but mine are happy to help me.
It probably thrills you to hear that I’m not going to NOLA after all. Apparently mother nature had other plans. Such is life. It’s weird how I don’t think that’s the worst thing that’s ever happened ever. It’s almost like I do have a sense of perspective.
What confuses me the most is why you come back. Why do you care? what is it that you’re hoping to achieve? What does it matter to you how I manage my pain?
It’s clear that it’s not for any altuistic means, so is it just to be an ass?
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purplebreath Reply:
February 12th, 2010 at 2:26 pm
Wow, I’m glad I’m not YOUR family member. What a lovely support system you’d provide. Katie’s not exhausting. She pushes herself (too much, in my opinion) to exceed in life and in relationships. I respect her for not taking the easy road. I love her for giving from her “want” when she’s a long way from “plenty”. The blessings she heaps on my family are genuine and precious to me. I wouldn’t trade her for anything. You don’t know her, and you don’t deserve to.
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ms. magpie Reply:
February 12th, 2010 at 2:35 pm
Dude. Before you say anything, educate yourself a little. Mardi Gras in New Orleans (and much of the Gulf Coast) is similar to Carnivale. It is not a day, or a weekend, it is a Season. Parades start running 2-3 weekends before, and are weekends-only until Lundi and Mardi Gras.
Moreover, they can be very family-friendly and sick-person-friendly events. You set up your chair on the neutral ground, hang out with friends, enjoy the high school bands and the floats.
Learn a little about a culture before making assumptions, ok?
And, for what it’s worth, Katie isn’t my only friend with chronic pain who uses a blog as an outlet to express herself.
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Uh, WTF? Why don’t you concern yourself with the “real” people you know and leave well enough alone here. Her trip will turn out the way it turns out, great, good, bad, whatever. Seriously. If you don’t wish to know her, even via what she chooses to post here, then don’t come by and provide “input”.
Katie – meanwhile, go forth and have safe travels. Ignore this and any future “input” from Keeyum. It’s really not worth letting it get to you. For every Keeyum, you have a multitude of people who enjoy your writing, and wish you the very best outcomes possible.
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I come by here every day. Rarely comment. But that Keeyum comment that just went up….that pisses me off. Being mean for fun. FOR FUN. That trait in some humans is something I will never understand. That kind of shit is evil. We have an obligation to call bullshit every single time evil rears it’s horned head. Keeyum, you are evil. I hope you get better.
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So this whole mess has me thinking…Katie this whole negative b.s. is way out of whack. Keeyum is probably getting off on the attention. Hasn’t he already had his share? Feel free to blacklist his sorry soul at any time.
I read your blog because you inspire me. You do the things I really want to do but just don’t (got a bazillion excuses). You’re brave. You kick butt. I admire your fierceness. I love your writing.
I get why you don’t respond to all the comments. It didn’t seem like an issue to me…I figured you read them and maybe the support helped a bit. If there was a question asked in the comments I assume you’d probably respond?
But if this…person…is going to mess with your world like this maybe closing the comments is the way to go?
Neither you nor your readers need to dwell on the negativity he puts out. You got enough on your plate.
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Oops, missed the main point. Please don’t stop writing. Even if you don’t let the rest of the world see it…don’t let anyone stop you!!!
And one more thing…180 degrees off this course!! http://www.youtube.com/watch?v=ZpqEM_h4mcY
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I read your blog every day and I pay close attention to your words. Never once have you implied that your pain is more severe/more important/more critical/more deserving of pity than anyone else experiences. In fact, I think that in addition to your pain, you are plagued with discomfort from having anyone pity you.
The heart of your blog is that you are being truthful. If you were to dumb everything down, there would be no point in writing your blog.
Enjoy your getaway.
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echoing the sentiments of what others have said and attempting to drown out the negativity. . .because your words, they mean something and your story deserves compassion, not derision
i appreciate the courage it takes to be so honest on here
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I read your blog because I care about you. If I don’t understand something you are experiencing or have written, I ask questions. This is your life. This is your blog. I think that gives you the right to say what you want, how you want, and when you want. Anyone who takes exception is free to stop reading. I just don’t “get” the need to not only judge, but also express that judgement. ON YOU BLOG.
I don’t think of you as a victim…not of circumstance, not of other people. I don’t think you think of yourself as a victim either…unless you start looking for logical answers to illogical behavior. Don’t waste your time. Or energy. Or time that could be spent eating cake.
And, Katie, did you really decide to refrain from going to NOLA? That makes me sad, but not knowing the reasons I have to assume that since you’re a big girl, you make decisions that are in your best interest.
But I really hoped you go, study, be with Slappy, and feel at home in a place you love so much.
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Katie,
I just found your blog – and have been reading your archives… I love it! But more then that, reading your blog is like cheap therapy for me. I have a back injury that ranges from mild stiffness/pain to hospitalizing pain with no rhyme or reason. I don’t talk about it because I worry about the type of backlash you receive. The people questioning when I am mobile if I was faking when I am not, the judging of my decisions and actions. So thank you for sharing your experiences with the whole internet. Because when I read some of your posts I get what you are experiencing and it makes me feel less isolated by my pain, a little less desperate, and like maybe somebody understands even in the abstract.
So thank you!
C.
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“I’m not going to NOLA after all. Apparently mother nature had other plans. Such is life. It’s weird how I don’t think that’s the worst thing that’s ever happened ever. It’s almost like I do have a sense of perspective.”
I’m totally taking credit for your new sense of perspective. My work here is done. Have a nice life.
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Katie Reply:
February 14th, 2010 at 6:46 pm
Hahahaha.
Hahahahahahaha. That was a good one.
You’re astoundingly delusional.
The only thing you accomplished here, the only work you’ve done, is to prove to me that there are some people in the world who, to their very core, are just profound jerks.
So thank you for helping me realize that. It’s always nice to have someone around to remind me of the ugliness of humanity.
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