Be okay
One of the things I’ve struggled with in this huge mess of health shenanigans is the well-intended people in my life. In particular, the prevalence of the statement of, “don’t worry, it’ll be okay.”
I know this sounds benign (and asshole-ish. Please don’t misunderstand my frustration with being ungrateful for support. It’s not the same), it’s just that, well, not everything might be okay. In fact, quite the opposite. Nothing might be okay.
When I had to miss Daisy’s wedding after the lumbar puncture, everyone was lovely and kind to me. But they just kept reminding me that it wasn’t a big deal, that my health was more important, which, of course it was. Over and over, I was told that it simply wasn’t that big of a deal. And I see how it’s easy to think that.
But it was a big deal.
Daisy’s wedding was an event I had literally waited for for months. I had marked the weekend on my calendar and counted down the days and then I was stuck, on my couch, in miserable pain. I was being held hostage by my own dysfunctional body. By my life.
And sure, it wasn’t that big of a deal. To you (and by you, I mean the non-specific you). But it was to me. And yes, the situation could’ve been worse, it always can be, but that doesn’t mean that missing didn’t absolutely suck.
Because it really did. And maybe I won’t always feel this upset about it, but for now, it still hurts.
I’m having a similar issue with my classmates now. They, too, are well intended. I know that when they tell me not to worry because I haven’t “missed that much” it’s to console me and to make me feel less overwhelmed. But it’s not true.
I have missed a lot, and I am worried. How could I not be? And just because I’m not failing a class yet or because I’m being given more time doesn’t mean it’s all going to be okay. Nor does it mean that I have to slap a smile on and choose to not be overwhelmed. It’s never going to be that easy.
Today I failed a quiz and immediately burst into tears (in case you wondered, my emotional status is a little frail right now.) because not only did I fail the quiz, but I’ve already missed two quizzes in that class and hey guess what? MY HEAD HURTS. I am not okay.
And my closest friend who was sitting next to me could not understand why I was so upset. Not because she’s heartless, but because it was “just a quiz.” But it wasn’t just a quiz. It was another thing that I couldn’t do. Another moment that was ruined by my health, and it was the first visible sign that I really may not catch up.
A sign that things might not be okay.
I know that sounds ridiculous to most of you because the world will keep right on spinning if I have another brain surgery or fail my classes. But there’s a difference between life moving on and being okay.
And the latter isn’t a given. It’s a luxury. And it seems to be more like an impossibility these days.
21 Responses to “Be okay”
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Welcome! I'm Katie, a 28 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 being a doctor's wife. Sit down, get comfortable and stay for a while.
I wrote a long response to your earlier post and then deleted it, because no matter how I tried to word it, all I was saying was “It’s going to be OK!” But of course, you’re right, it might not be OK or it might be OK but right now it is NOT OK. I’m really sorry you are going through this and I’m hoping like crazy that it IS going to be OK. I keep thinking of what I would say to you if I knew you for real or if you were my sister or my best friend, and I think what I would say is that you are pushing yourself too hard to BE OK to have a life that is the life of someone who is not in chronic pain. But right now you are a person who is in pain whose body refuses to co-operate and maybe you are not giving yourself enough slack. Maybe it is now the time to defer classes and just hold still and hang on. You are a really good writer, maybe now is the time to lie still, keep the pain at bay as much as you can, and write.
Just a thought.
I’m thinking of you. And still hoping for “OK” to come soon.
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I have said “it’s going to be okay” even tho I personally don’t care to hear it myself.
Life does move on. I am so very well aware of this. Life is different after death, illness, personal tragedy. Most of us survive it, but we are not “ok”. We just live each moment, waiting for the next, wondering what life holds.
I will say this, Life is Amazing and reading your blog, through your triumphs and even your failures, show that you are moving forward. You are not willing to just lay down and take it.
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I’m at a loss because of course I just want to say “it” because that’s what you do to console a friend! Unfortunately life is not fair and so often sucks. I do hope that you get some relief soon, that school gets better or you take a break, whatever you need. I do understand how you feel about this “just a quiz”, because it is not just a quiz, not to you. It is tangible evidence of how well you are surviving, but the good thing is that you CAN catch up! I’m not even suggesting that it will be easy in any way, but you are a smart cookie and I don’t see you just giving up. Good luck to you my friend, I’m here rooting from you and am glad to have met you here in twitterville! -@1mcmommy
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Of course you’re not OK right now. It’s scary and stressful and PAINFUL.
I wish I could wave a wand and guarantee OK, and make it happen now. I can’t, and it’s hard for me to watch you suffer, even though I don’t know you in real life.
But this is not about me, or anyone else who reads your blog or your twitter. This is about YOU.
And if your friends demand that you be OK … well, that’s just selfish of them. Of course we all want that for you. But that’s not what it is right now. And the people who love you shouldn’t ask you to pretend that it is. I know we ask it of the ill all the time in the U.S. … but it’s bullshit.
It’s OK to not be OK, Katie. The people who love you will understand.
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You are right…it might not all be ok and there is a difference between that and life just moving on. But I think the well-intentioned general we say “don’t worry” so that you know we are here for you, that we are trying to help by taking a wee bit of the burden off your shoulders; we’re saying let us worry a little for you so you can take a break from it.
I’m so sorry you missed her wedding…it plain sucks, and one day it won’t hurt so much but in the meantime, it sucks.
And maybe, just maybe, if we all keep saying it will he okay enough, maybe it just will.
Xoxo
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You are so right. We’ve all done it, to you or to others. This is actually one of the reasons I have a hard time commenting on blogs. To steal a phrase from Heather, I’d like not to sprinkle the internet with the “sad clown face” and promises of things being better. So just know that when I leave my seemingly generic “((((hugs))))” comment it’s because I love you and want to try to be real. Because if you were standing here, that’s what I’d do. And because I too have been told “It’s ok.”
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I completely understand. There are things that are happening right now that are totally out of your control and it’s not okay. Missing an important event because your body won’t let you do what you want, is not okay. Losing your hair again, if it comes to that, is not okay.
None of this is okay. And you know, I know that doesn’t make it better either.
I think we’re all, me included, guilty of wanting to have that “magic bullet” that fixes things for you and makes everything okay. I’ll search for yours; you search for mine and we can live a life of suck while we search
.
So, here’s what I’m going to say. It sucks that you’re feeling overwhelmed by school. It sucks that you have to have more tests. It sucks that you are not feeling better and that there’s no easy solution to what’s happening to you. It really all sucks. And I wish that it didn’t suck because you are a cool person who deserves a less sucky life.
And I hope that, someday soon, you get to have that.
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I want to preface this comment by apologising – I know this is your blog Katie and I do not mean to vent my own frustrations in your space, but I get it. As a fellow ‘zipperhead’ I totally get it. If there was even a speckle of a glimmer of a glimpse of light at the end of this cruel and torturous tunnel, hearing ‘It’s going to be o.k’ would be a welcome comfort. But hearing ‘It’s going to be o.k’ – as well meaning as it is intended – when it damn well doesn’t feel like it’s going to be o.k at all, let alone anytime soon, only serves to make one feel even more isolated. Your in my thoughts dude.
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You deserve to have a life without extraordinary pain. It sucks like all get out that this is happening (again/still) when you want nothing more than to get on with your life. Barbara Ehrenreich was just on the Daily Show with a sort of refreshing take on illness and wellness and well-intentioned but not always helpful expressions. Perhaps gratuitous reading is not on the agenda, but maybe the interview will be of some value. (totally unaffiliated with author/show)
Wishing you less pain.
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Just want you to know I think about you every day (in a non-creepy way) and always hope you are having a good day.
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I was thinking so hard about what I could say without sounding stupid or hollow. But I just can’t think about anything. I can only hope, that one day, you will be…ok. Maybe even better than ok.
I really wish you the best. Don’t give up. Please, don’t give up.
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When I say something to the effect of “this too shall pass” I am merely speaking from my experience. I am not being trite or flip.
I have not had medical issues as severe as yours, but I have been through some seriously traumatic shit in the past 8 years or so. Basically, my life has been totally overturned and dumped out and I have had to completely start over at least 3 times. Long story. Obviously.
So, when I say “it will be ok, even if not tomorrow,” I don’t necessarily mean everything will be the way you think it should turn out. Lord knows I never in a million years would have believed you if you’d told me 10 years ago where I’d be today and everything I would’ve gone through in the process. It doesn’t always end up looking like you expected, but that doesn’t mean it isn’t ok.
Big picture, you will be okay. One way or another. And you will get through whatever comes your way, because what else can you do?
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Being sick doesn’t give you permission to act like a horse’s ass!
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MuseOddity Reply:
October 23rd, 2009 at 9:12 am
What gave you permission to act that way?
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Eileen Reply:
October 23rd, 2009 at 10:51 am
When I read comments like yours I am dumbstruck at the capicity people have to be a complete piece of garbage. I read Katie’s blog because I care about what happens to her. Even though she doesn’t think she is brave, I do; and I hope that whatever choices she makes regarding her medical condition will bring her some relief.
I’m sure you don’t want to know what I hope for you, jackass.
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Deanie Reply:
October 23rd, 2009 at 4:54 pm
You must be one very lonely person.
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GreenInOC Reply:
October 23rd, 2009 at 5:03 pm
What are you referring to?
I’ve the this post and there isn’t anything in here “assy” at all.
I’m sure you feel your point is valid but it’s probably best to at least make your point.
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I agree that it’s not okay to miss Daisy’s wedding. Or fail at something which should come easily to you. Not okay at all. It sucks, big time. I can’t even begin to understand how much.
You are a very brave woman. I don’t envy you the pain, but I do admire your determination and ability to face each day determined to move forward as normally as possible. By normal I mean do the things you feel driven or called to do, like work or school. Even in horrendous pain.
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First, I don’t usually like to acknowledge bad energy. But I find it interesting that the individual who posted “Being sick doesn’t give you permission to act like a horse’s ass!”
didn’t have the confidence to post their name along with such a nasty post. Clearly this person doesn’t understand or know what it is like to be chronically ill or in extreme pain and clearly doesn’t get it. Next time this person has the gall to post something so negitive, do it with your name.
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Kelly Reply:
October 24th, 2009 at 10:26 am
I apologize to the woman who wrote the “Horse’s Ass” post…only because I didn’t see that you posted your contact info but it has been removed. I still think it was far from productive and positive and I’m assuming you lack great understanding or even the will to try to understand what it is like to have a chronic illness and live in pain. I am 33 years old and have lived in chronic pain for the last 12 years and will for the rest of my life. It influences EVERY decision I make and EVERYTHING I do! I have a college education and ran a business and try daily to be a productive member of society by working and giving back by volunteering. It is NOT easy but I try and Katie tries too and that should be at least commended.Dealing with a chronic illness is not just a physical challenge but is equally, if not more so, mentally challenging to deal with a CI or CP. So if you haven’t walked in either of our shoes you have no place to judge.
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I seriously think that positive thinking can do a world of good. Try affirmations every morning. the brain is a powerful thing, and negative thoughts like “oh how could it get any worse” just make it worse. It’s worth a shot, right? cuz “how could it get any worse?” I hope you feel better soon.
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