Please don’t ask me how I am.

The socks I am wearing today came into my life exactly one year ago. They’re the warm non-slip kind, and I got them from the Emergency Room at St. Joseph’s Hospital. They’re the second in a collection I don’t want to curate, gathered on a long, boring, annoying, painful, ridiculous, mysterious journey I don’t want to remember.

I have Occipital Neuralgia. It’s a long story, and I’m tired of it. You can Google ON and you will learn that it is a painful condition involving the nerves in the head. You will not learn how to deal with it, but if you look hard enough you will find other people who have it. You will not be encouraged by their stories. You will try to accept that it is chronic, but not fatal, so at least there’s that. You will think “at least” a lot. You will find treatment options that might help, but you will not find a cure.

And if you’ve gotten this far, I hope you will adjust.

As with depression, you might not get it unless you get it, and I hope you never, ever get it. That’s my wish for you. Here are my wishes from you.

First, please don’t ask me how I am. I know you don’t mean anything by it, but you don’t expect an honest response, and I’m tired of lying. The thing is, I am terrible (thanks for asking.) I am always in at least some pain. Always. Even when I say I’m doing okay, it’s this new version of okay where I’m in bearable pain. The monster in the back of my head is sleeping, leaving a dull ache I can ignore for a while. I can function; I can act like one of the humans for a few hours, but it comes at a price.

Second, please don’t tell me I’ll get better. My current treatment plan is through the Mayo Clinic; I am looking into every avenue; I am seeking advice from others who have it. I rest. I put bags of frozen vegetables on my head. I cut off most of my hair to remove the weight from my scalp. I’m still in constant pain. I am trying to do everything I can to kill this monster, but the reality is it might never go away. I’ve had time to come to terms with that, but when you tell me I’ll get better, it just reminds me of the opposite.

And finally, please don’t give up on me. ON has affected every single part of my life, and I’m still figuring out the balance. I’m sorry I’m a burden. I’m sorry I’m unreliable. I’m sorry I’ve missed so many events that you don’t invite me anymore. (Nobody goes to parties to hear about my health problems, anyway.) I’m sorry I’m so grumpy and self-pitying that I do things like write this. I’m sorry I make you feel awkward when all you’ve done is ask, “How are you?” and expected a normal answer like a normal person.

Although I guess making people feel awkward is pretty normal for me, so that one’s on you.

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Thank you for your patience. Here’s to a hospital-sock-free 2017.

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5 responses

  1. Book recommendation if you haven’t read it: Furiously Happy by Jenny Lawson (The Bloggess). It’s an incredibly funny, dark, true look at life with mental illness and physical illness. It’s helped me quite a bit. Her other book, Let’s Pretend This Never Happened is awesome too!

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