Friday, December 20, 2013

The Grinch Has Nothin' on Chronic Illness

It will happen when dealing with a debilitating chronic illness---your disease will do something that scares you. There's one symptom I know to watch for that means Really Bad Things for me: orthostatic hypotention, a.k.a. blacking out upon standing. It's how I knew my disease had left remission in 2009. It should not be happening now; I'm on corrective medication. That it is happening is Bad News. So rightfully, I'm frightened. Add to this one of my pain meds has quit, with the new one not scheduled to be available until the first of next year and the holidays aren't so jolly.

I have to remind myself to care about the holidays because I know other people care, and bigger still, they can't tell that my indifference to the holidays is because I'm so preoccupied with much bigger issues. I become hyper-focused on daily survival (because that's what it takes) and I lose what month it is. Time becomes a blur---either I'm dealing with symptoms, or dealing with what I had to put off because I was dealing with symptoms. I learned a long time ago in times like these, I have to limit my outings to once every few days... I need at least 2 days to recover from the last 2 hours I left the house. I get about 3 hours of normal activity a day. The rest is in battle with my own body, and it's exhausting! It was just Halloween last week, right?

To cope, I watch a LOT of Netflix. My current escape is anything Anime, as long as it's not about giant robots. The Japanese are very understanding of ignorance, seeing it as an opportunity for giving the gift of education, rather than something to necessarily be ashamed about. I grew up under the rule that if you didn't know, you were ridiculed, so it's a refreshing change of pace. So they use their cartoons to educate kids on manners, how to resolve conflicts, how to deal with bullies, and all without being condescending like those After-School Specials you and I grew up with. And it also reminds me of when I worked at Nintendo of America in Seattle, when I was one of the few people who wasn't bilingual. I remember the sound of Japanese going on around me as business was conducted. I remember how much I struggled to learn phrases like "Thank you for the food, let's eat!" and "Thank you, it was very good'" Those were happy times...

Because I get sucked into that microcosm of surviving moment-to-moment, just trying to claw my way back to normal, I forget what my strength is... that I get back up again. I can't keep up with normal folk, but normal folk don't know how I do what I do.

From my point of view, it's like I'm weathering a storm and just hoping this time, the house doesn't come down around my ears. But that's not what others see. They're not in it, so they don't know that I get scared every time, that I despair every time. All they see is that I go through something like that, and when it's over, I get back up again, like it never happened. They don't understand how it's possible to be so old-hat at suffering that it becomes more of a nuisance and a bore. I know that mystified me when I first got sick. But I saw it happen through the movie Frida, and now I'm finally at that magical place--I'm bored with these health crises. I'm tired of it. It's no longer scary, until it is (and then it's really scary), but that too, has become old and stale.

The difference between then and now is, I actually get tastes of real life between the suffering. If it was all suffering, I don't know how long I'd last. I really don't. But now that I've had moments of life again, all this suffering is just an interruption. I know it's just b.s. I have to push through until I can wake back up to life again. I don't have time to despair when the sun is shining. I don't know how long it's going to last. I've got to take advantage of it, the second I become able to, otherwise I'm wasting very precious time.

Other people see that as strength... my new roommate doesn't understand how I do it. But it's easier than you'd think when you don't really have any other choice. I've been forgotten before and had people stop inviting me out. They thought I'd left. I had... kinda. Not by choice. But how do they know that? Hear it enough, and it sounds like an excuse, no matter how true it is. "Call me in January!" I ask, knowing that no one's memory lasts that long.

So I've decided to start throwing "Still Alive & Kicking!" parties, to let people know when it's cool to start calling again. People want to be polite, but we have no etiquette book on chronic illness, much as I want to write one! lol Seriously, though... we have parties to let people know about weddings, babies, product launches... why not one to let folks know I'm back in the game? And it would be a great way to sweep away those post-trauma blues.

So while my illness may have stolen Thanksgiving, Christmas and New Year's Eve... I'll throw my own festivities just as soon as I'm able. Coming to a Friday Night in 2014! Just you wait & see! I'll be back, baby...

How about you? Ever had a "Get Out of Hospital" party? What did you do? How do you cope when your chronic illness steals holidays from you?

1 comment:

  1. That's a great idea...I've given up on hanging all those lights outside...too hard on my shoulders :)