It's a dreary day here today but I have my window blinds up and light blocking curtains open, which is unusual for me. And I have music playing (my ipod on shuffle, always an adventure) and I'm determined not to fall back asleep. I want to write, so here I am. I don't have anything in particular in mind to write, I've just had so much on my mind I've wanted to write, and I finally looked here yesterday and was shocked to see that the last date I posted was in January.
So many things have seemed to come to a head. Not that things ever go along in straight line progressions, lining up neatly along graphs, building along, to come to some perfect conclusion, or resolution. No. But some things seem to be stretched until the breaking point. Or explosions. Or build into toppling block towers.
I don't know.
But there seems to be a a misconception out there of the "right" way to be sick. There is some unspoken, mystified, noble way to get sick, remain sick, and then, if you're going to be "really sick" eventually heroically either overcome your sickness or stoically die from it. I think I am breaking an invisible code by speaking of this, but I feel it. I feel it in the memes I see floating around the internet and in little things I hear and from things that I hear from other people in support groups, that they hear from people. That the "right" way to be sick, is to not complain about our ailments. And if we're in pain, certainly no one should ever know it. It is far better to suffer through things for everyone else's sake and hide our pain.
That's what everyone will want to hear about at the funeral, right? How they put everyone else first. How they never complained about the pain. You never even knew. That's the noblest way to die. The best way to be sick. That's doing "right."
But that's not how it happens for everyone, is it. That's like the storybook version.
You won't hear the storybook version from me. And I'm not even dying, so you don't get the heroic ending here.
There won't be people standing up at my funeral saying how I never complained. hahahah!!!
No, here things fall apart. Here you will find the wells of patience running dry. You will find the 8 year old crying that she didn't get as many years of me healthy as the older kids did and how that isn't fair. You will find me locking my bedroom door and telling the kids they can't come in - because they are just too loud and every sound hurts. You will find Zac losing his patience with the kids because he worked all day long and came home to make dinner and then deal with the messy house and kids who need attention, and then trying to gather the kids for scripture study and family prayer, and then getting them all to bed all by himself, while I am locked in my bedroom the entire time curled in a ball, and he hasn't even had a chance to say hello to me yet. Then after the kids are in bed and the house is finally quiet, and I come out to say hello to him because I finally can, I find him asleep on the couch because he's exhausted, And we find days go by without being able to hardly talk because these are our days now and we are both becoming completely depleted.
Here you will find me driving myself to the emergency room because Zac is in the middle of cooking Easter dinner for the kids and he just can't face it because it's too hard. Here you find us facing things we've never faced. Together and alone. Voicing things we'd never thought we'd say. Like, I couldn't come be with you. And, I don't know if I can do this. And, I'm so sorry this is our life.
Things aren't always bad. Don't get me wrong. But like I said, something just reached a point and things just started unraveling. And my neurologist gave up on me. That's a long story in itself. I've found myself grasping at the unraveling strings, trying to hold everything (and myself) together. Sometimes I wonder what will be left.
It's a funny thing sometimes, watching yourself and your spouse as you go through something unexpected like this. Neither of you can anticipate how you will react. You never can. You think maybe you can, you think you can prepare spiritually, emotionally, whatever, for hard times that might come your way, and you think you know someone, and you think you can advise someone else on how they should be acting or what they should be doing in a situation, but unless you are in it, and unless you are them, you cannot know what you would do. You just can't. And you just won't know what you do, and how you would act, until you are in it. Like in a plane crash, some people freak out, some people are calm in crisis. Some people naturally help others, some the survival instinct kicks in so strong they only think of themselves. They say many people can't even remember how to unlatch the seat buckle because it's different than a car seat buckle. That's how much muscle memory and panic sets in. So don't think you'll know what you'll do. You don't.
And sometimes, it's hard seeing yourself and someone you love as you go both go through this together.
You're both getting a crash course in survival. And you don't know what to do. And then things change, and you start over again.
On a final note: in our house you will also find 4 kids growing fast and becoming their own fascinating individuals and trying to learn to get along. A husband who is giving all he can to his wife and family, who worries about providing financially for all of their needs, and does his very best to keep on top of everything that his wife can't do. A wife who receives loving and thoughtful surprise packages from a group of high school friends who are unbelievably kind. And a beautiful world all around us to notice and take photos of. Life is good.
As I saw in a quote today: "The world is larger and more beautiful than my little struggle." - Ravi Zacharias