Touch Not The Cat

Recently, I was catching up with a friend. I have to imagine catching up with me is a miserable experience, as it mainly involves a list of weird health problems delivered in a practiced yet grumpy matter. After I finished the spiel, my friend paused, then asked, “So, are you seeing anybody?”

To say I was not expecting this question is an understatement. She may as well have asked “So, are you currently orbiting Jupiter?”

Dating is a miserable experience at the best of times, and this is not the best of times. I don’t want another person expecting me to do things when I can’t do things. I don’t want another person to worry about offending with my general crankiness. I don’t want to love any new people; I want to hold on to the few I tricked into caring about me back when I was a functioning human, but I want to do it in a text-messages and g-chats kind of way. Do not touch me; I am a porcupine.

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Or this cat.

But back to lunch with my friend. “No” didn’t seem like a thorough enough answer, but what could I say? “Yes, I met someone in the waiting room of one of my many medical appointments. We have so much in common. He is 84 years old.”

Before I could say anything, my friend took in my nonplussed reaction and clarified.

“I mean like a therapist,” she said.

This made so much more sense that I immediately started laughing at myself for ever thinking she meant something different. Because she’s met me; she knows that even before I became a prickly pear, I would rather talk about 90s boy bands than actual boy problems. All of my friends seem to get this about me, and I love them for it in my cold, distant way.

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I am this Model T.

(And yes, I have a therapist. Are you kidding me? Of course I have a therapist.)

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Rebooting (with spoons)

A few years ago, I was getting ready to host my family for Thanksgiving when I realized I didn’t have enough forks. I did all the dishes, looked in all the drawers and came up with exactly five forks. I fretted for a few hours, until I remembered there are only five people in my family and as long as no forks disappeared mid-meal we’d be fine. I still fessed up to my family, and my fork shortage became a running joke. (My mother gave me one fork in a jewelry box for Christmas.) Now that I’m no longer literally running out of forks, I find myself counting my metaphorical spoons.

There’s this thing called The Spoon Theory.  If you aren’t familiar with it, it’s an explanation of life with a chronic illness as illustrated by a bouquet of spoons. Why spoons? Because they were the closest object to the storyteller at the time. It’s a weird metaphor, but it caught on long before I came to the chronic life scene, so I’m rolling with it. I have now joined a gang called the Spoonies. (Like the Goonies, except instead of searching for pirate gold we might eat some soup later if we can get out of bed.)

It took me a while to admit to myself that I am a spoonie, and even longer to admit it to anyone else, even the people to whom it is painfully obvious. I am speaking here specifically of Lacy, my best friend and roommate who has become my accidental but eternally patient caretaker. Well before we knew what was going on, she took over grocery shopping. She accepted my total domination of the couch. She accompanied me to several late-night ER visits. And she makes great coffee.

Lacy and many others have been there for me over the past year and a half, particularly during what I like to call the Hard Reboot of Rachel. My wonderful workplaces and school let me take several months off to attempt to “get better” or at least figure out what was wrong. Basically, I watched everything on Netflix in between doctor’s appointments, and even though I am not better, I’m so grateful to everyone who let me take that time and supported me through it.*

I’m still Rebooting. I’ve had time to come to terms with the pain of ON, but it’s harder to accept the changes to my life. Knowing my supply of spoons is limited does not stop me from trying to do everything I used to do. It’s kind of like deciding to have another beer and knowing you run the risk of a hangover the next day, except instead of having a beer, it’s reading a book. Or taking a shower. Or working a full day. And instead of a hangover, it’s…actually, that is what it feels like sometimes.

I’m trying to spend my spoons wisely. Work. School. Seeing friends and family in limited ways, even if I know it will cost me later. And the upcoming Women’s March Minnesota.  That one is going to hurt in so many ways, but it’s necessary in so many more.

*I’m especially thankful to the people who went above and beyond to bring me to or from ERs, hospitals, pain clinics, and more: Aimee, Bryan, Lacy, and my family.

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.