I am Hoping: Words Not to Say

“Hope for the best. Prepare for the worst.”

I can’t tell you how many times I’ve heard that.

I think I hate that phrase now.

That seems to be a go-to phrase for people when I try to explain why I am making the plans I am making, why I can’t just pretend that I will magically get better. Sometimes it is an attempt at understanding, sometimes a rebuke because they believe I am not “hoping for the best”. (What, then, am I hoping for? Do you think I want this? Do you think I enjoy the fact that I will be in pain for the rest of my life? Nevermind, you wouldn’t be the first.)

“The best.”

Well there’s one problem. They rarely seem to understand what “the best” is. They think that “the best” is that this will all go away, and I’ll be healthy and normal and I won’t use a cane anymore. They think the “best” I should be hoping for is being fixed.

And I will concede, I suppose, that anything can happen. A cure could be found. They could cure this and every other thing I have and I would be normal and healthy and maybe  happy.

And I don’t know what else.

I don’t know who I’d be, if I didn’t hurt.

I do want to stop hurting, I think. A cure would be…good, I think, at least for this. This particular ailment, which affects my nerves more then my thinking. (I wonder what that would be like? I almost dread the times I do not hurt, because they make me doubt myself. Moments of happiness in between bouts of pain are some of the worst moments I have.) But everything in my body is tied to everything else, and all of it comes back to my brain, and who would I be with a different brain?

But that’s all academic. Hypothetical philosophies that are generally irrelevant to my reality.

There isn’t a cure.

And this isn’t going away.

So what is the “best” that I hope for?

I want…

I want so many things. I do not hope for all of them.

I hope…

I hope that I learn how to live with this.

I hope that I get used to walking with my cane, because it frustrates me and angers me when it bangs my leg getting into the car, and I forget to bring it with me, but now that I am using it I can actually walk and I do not fall, I stand steadily on my feet and my legs do not disappear from under me and do you know what that is like, after two decades of feeling my ankles give way and my knees drop out?

I hope that I stop crying every day. I hope that I keep feeling things, though.

I hope that I learn to be content. If I learn to be content then I can be happy, I think.

I hope that I get to be happy. Not the happiness that comes in between the pain, when it leaves me for a little. That happiness is tainted with fear and hatred and self-doubt. Because I know it will not stay. Because I fear my mind is lying to me. Because I hate the people who made me afraid of that, and the people who made me hate myself, and I hate that I listened and I hate myself for not beating them.

No. No, not that happiness.

I hope that I get to be happy regardless of my pain, not because it is gone.

I hope that I learn what I am learning, to be happy with the things I have to be happy with, to be proud of the things I have to be proud of.

I hope I learn to live with this. That is what I hope.

That is the best that I hope for.

And I do hope for it. You do not need to tell me to hope for it, because I do, I do. You think because I am angry and in pain and grieving that I do not hope? Are you dissatisfied because my hope does not look like you want it to, placid smiles and inspiring strength? Am I not being strong enough for you?

I am so tired of being strong.

I am so tired of trying to hope.

I am so tired.

I have the rest of my life to hope. The rest of my life to try to be strong. This is mine to live with for the rest of my life, and not yours, and I do not want to hear that I am not hiding it well enough for you.

I am grieving. Let me grieve.


2 thoughts on “I am Hoping: Words Not to Say

  1. Thank you.

    I have fibro, and every single word of this resonates to my soul. These are the words I wish I was able to say to my family that wants me to hope for a cure and to think positive. It’s so tiring, having to hide my pain so I don’t make them uncomfortable and I’m sick of it.

    I’m crying because these words make so much sense to me.

    Thank you for writing this.

    Thank you for showing that I’m not alone in my grief.

    Thank you.


    1. Thank you. It means a lot to me that my writing made someone feel that way. It’s a big part of why I do it. Comments like this are so important to me, and they keep me writing when I feel insecure, or like no one is listening.


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