I’ve got book club this afternoon…our selection for this month was “Until I Say Goodbye” by Susan Spencer-Wendel. It’s a memoir by a woman who was diagnosed at age 43 with ALS. A journalist, wife, and mom of 3 young children, she writes about her last year of relative good health following her diagnosis. The subtitle is “my year living with joy”, as she makes the most of the time she has left before the disease renders her incapable of doing…well, everything. She writes about the progression of the disease as it takes its toll on her body, and how, in spite of it all, she finds beauty and joy and laughter and things to be thankful for. By the time she wrote the book she essentially had control of one finger, and basically wrote the book on her iphone with that one finger.
I initially resisted reading the book after my friend Virginia suggested it. See, a lot of times I find life and its assorted dangers and pitfalls to be utterly terrifying. I stopped watching “The Today Show” several years ago because I couldn’t stand hearing about one more tragic story, giving me one more thing to worry about and obsess over in those dark hours when your brain travels to those scary places and you can’t reel it back in. The dad who lost his wife and kids to a drunk driver. The home invasion where everyone was brutally killed. The tragic accident that claimed a bride and her new husband. You don’t have to look too far to find stories like these. To keep myself from dwelling on them I just tried to avoid them. I couldn’t get rid of the fears I already had but I could sure try to prevent new ones.
See, its not the stories themselves even that got me so worked up. No…what really messes with my head is the idea that the survivors, those left behind, always talked about the things they learned the joy they found in spite of the sorrow the beauty that rose from the ashes. Even worse…as a person who (most of the time) professes faith in Christ, hearing other Christians tell their tragic stories…that “God taught me so much” and “changed me so much” and “used something terrible for his glory” is probably my biggest stumbling point with the Christian faith, with God himself. I was, am still, really, petrified at the thought that God will rip my family apart, destroy everything good in my life, ravage my heart or my health all in the name of teaching me some sort of lesson, of making me a better person…what the hell kind of God is that?? That God scares the crap out of me. No matter how many times the Bible says “do not fear!” and “there is no fear in love” I can not wrap my head around that God. I am terrified of that God. I don’t know who that God is, if I even want to, am even able to believe in him but I do out of fear that he will teach me some sort of lesson if I don’t. When I pray a lot of times my prayer is just a gasp of “God I don’t want that to be my story! Please don’t let that be my story!” I don’t want to learn that lesson. I don’t want to be that person on the Today show.
So I didn’t want to read this book. I didn’t want to have to worry about getting ALS right now at this stage in my life (although I already worry about any number of other diseases). I didn’t want to think about how getting ALS was so great in the long run because it taught her so many things and she was a better person for it. Up until last week I hadn’t even bothered to look up the book. I hung out with Virginia and Felicity (my other friend in book club) and they both said “No, really–its not sad! Trust us. Well, it’s sad but not how you think. Just read it.” And they didn’t even know about all my internal issues.
I picked up the book Thursday and had finished it by Friday night.
And they were right…the first chapter or so, as she started having health issues and struggled with finding a diagnosis, denying what she most feared was probably true, and then wrestling with the final diagnosis…yeah, that was sad. But the rest of the book was amazing. It was really inspiring, it was hopeful and funny and not tragic at all. Even though you know right this very moment she is in hospice and uses a special computer that she points her nose at to write and communicate with because every muscle in her body no longer works. Yes…there were “sad-ish” parts. But it wasn’t sad. She wasn’t sad. She was fiercely determined to not wallow in self pity, about what might have beens, about what she could no longer do, have, etc. She just lived in each moment, each day and fought to find joy in those things. By the end of the book I found myself feeling like I too, could get through just about anything.
So…why didn’t this story scare the heck out of me, like so many of those others do? I think because it didn’t come across as “God teaching me a lesson through ALS.” She claims a faith in God, a belief in heaven, a spirituality, yes. But nowhere does she claim that “God allowed me to go through this so I could be a better person.” She is NOT an evangelical by any stretch. Most American Christians would probably dismiss her story because of that (probably part of the reason I like it so much, ha!). I think though, it reinforced something I am beginning to believe is the way God works in the world. (Which I am PROBABLY WRONG ABOUT because anytime you think you’ve got God figured out you are more than likely TOTALLY OFF BASE. But I’m really comfortable being wrong so, what the heck.)
I’m not comfortable with the idea that God does or does not do something in a particular event. Like when we say “Oh, thank God I was home when our frozen pipe burst.” Like it’s some sort of miracle that God kept you from going out the door 5 minutes earlier. So…for the person who WASN’T home when their pipe burst…God wasn’t there? God just let them head to work so that when they got home there was tons of water damage from the burst pipe? People love to say that God allowed this or didn’t allow that to happen, and are thankful and “Oh God is so good!” But then when the opposite happens…the diagnosis is bad, the tumor keeps growing, the car crash isn’t avoided…where is God in that? He’s allowing that to happen? He allows things for some and not for others? That seems so arbitrary and well, cruel. I can’t wrap my head around that. It just doesn’t make sense to me. It brings up the age old question of “If God is so good why do bad things still happen??”
I’m more of the belief that God doesn’t intervene in events in the world. The world is fallen. The world is imperfect. We all have free will and things happen. Bad things happen. God didn’t cause that hurricane because he’s mad at someone. He didn’t stop you from crashing into that car because you pray a lot. Things just happen. Things are random. There really are coincidences.
But I still think God is in there. I think he is in the wreckage. Or in the excitement. Or the thankfulness. He is in our reactions to things. The way people step up and show love and support for one another. God didn’t cause AIDS but God is in the doctors working to find a cure, the people caring for sick AIDS babies, in people showing love to AIDS patients. God didn’t cause that pipe to burst in your house but he was there in the neighbor that let you use their shower. In the friend who brought you all dinner. In the plumber who came right over and fixed it. And in all of this, this is how I see God redeeming the world. Not by stopping events or by causing events…but by getting right in the middle of those events with us as we all muddle through the good and bad of our lives.
Ok. This is getting long, I need to quit rambling. Bottom line: I liked this book. It made me feel ok about life and all the possibilities, even the bad ones. That I don’t need to be scared of God doing something to me (or not) because it’s not God doing it…it’s just how life is. Good things. Bad things. Just life. But that God’s in the response. God’s in the reaction. Like I totally saw God in Susan Spencer-Wendel’s response to her ALS. God’s in the people who come in for the celebration or the rescue. Maybe that’s a cop out, maybe that’s just me making up something to make me feel better.
I’m ok with that. Maybe that’s what faith is in the first place. Something to make us feel better about the craziness that is life. I think God’s right there in that too. Our tiny, weak, pathetic attempts at faith.
*the opinions expressed in this blog are my own and only my own. I write this blog to hash things out. Not to espouse a certain mindset or belief system. if you agree, great. if you don’t, also great. i’m not interested in you bashing my beliefs and making me feel horrible, so just save that because i will not read nor approve your comments. Nor am I interested in your attempts to sway me in a different direction so again, save your breath. if you have a nice supportive thing to say great, go ahead. I’d love to hear that. Yes I am a wimp and yes I hate confrontation and argument and disagreement. So. That’s all. Just be nice. The end.
I’m sitting here with my mind in a whirl and I just can’t sleep and have to write this down, whatever it is.
Today I finished a book, “Half of a Yellow Sun” by Chimamanda Adichie. It was about the Nigerian/Biafran Civil War of the late 60’s, which I knew nothing about. It was a wonderful, difficult story to read, and I’m having trouble with it being finished because I want to continue to be a part of the character’s lives. In it she talks about something called “kwashiorkor” afflicting the children in the refugee camps. I wasn’t sure what it was, I thought it was like dysentery, so I looked it up. It is this:
Those famine pictures you see, of children suffering from severe protein deficiency due to malnutrition and starvation. The images that popped up in the Google search have haunted me all day long.
Then I took 2 of my kids for a hike and picnic in a state park. It was gorgeous and warm and sunny and breezy. We picked up lichen and sparkly rocks and a stick that looked like bamboo. We just meandered up and down the rocky trail. We saw a mother deer and her 3 fawns dash across the trail in front of us and then watch us warily, tails twitching, from the trees until they dashed off again. It was a beautiful, perfect summer day.
I took my oldest to her 6th grade orientation. It was a flood of information and new things to figure out, to get used to. It was overwhelming and an overload of things to remember. It was exciting to see her new school, meet her teachers, imagine all the new and exciting things coming her way this year. She was reassured by finding many people she knows in her homeroom class and on her team. I left feeling great anticipation for the year and years ahead, knowing this is a huge step in her growing up, her becoming the young woman she is going to be some day. My head was spinning with all the things I need to remember.
I read Jamie The Very Worst Missionary’s blog today, where she talks about how activism requires action, and how most of us are “passivists”, in that we passively talk about, share, pass along information about horrible and desperate situations, without actually doing anything about any of them. Kind of exactly like this blog here.
I started and finished another book, “If I Stay”, by Gayle Forman (I know, I know. But you know I am a notorious Devourer of Books. And this one was very short.). It was about an 18 year old girl who is in a terrible car accident that kills her parents and little brother. She has survived but is in grave condition, and the story is told from her point of view as she contemplates whether to stay or go…to live or die. It is heart-wrenching, even though it is a fictional story, because you can’t help but wonder if you were in that situation, if that choice were even possible, what would you do. If everyone you loved was lost. I don’t think I could stay. It made me feel very sad and melancholy.
So here I am just thinking about how odd this life is. The juxtaposition of pain and beauty. That this is a world where
Thousands, maybe millions, of children, suffer from kwashiorkor, look like that photo, live in that reality, and worse, every day.
That somewhere a little girl is being raped by a man who paid to have sex with her.
That little boys are being conscripted to fight in a war they don’t understand.
That someone is losing someone in an unthinkable tragedy.
That you can go from being intimate friends to total strangers in less than a year because of a stupid misunderstanding.
That you can go outside and see something incredibly beautiful, probably right outside your front door.
That you can see the potential and the future in the eyes of your child.
That you can dream about the possibilities of your own future, as you think about the things you are passionate about.
And at the same time as all of these things, you
plot and strategize how to get through the list of things you have to do tomorrow.
try and remember to call or write to friends and people important to you.
wonder how the $300 to fix the dryer is going to affect the bank balance.
think about the random things you want to do to the house.
wonder why you spent all your birthday money on locker organizers and gym shirts and PTA memberships.
sit and write another silly blog.
This life. It’s kind of insane. It’s exhausting to think about.
So why aren’t I tired yet?
I don’t know about you, but when someone says “mid-life crisis”, I think of an older, balding guy, with a bit of a paunch, who goes out and buys a hot new convertible and starts chasing after the cute secretary at work. Definitely a media-contrived image. I am none of those things.
I think all of us go through a lot of different crises in our lives, at various stages (I know there’s some psychological theory of this, I’m sure of it. Piaget?? No, Erikson, right?), but since I’m pretty much in “mid-life” and definitely having a “crisis”, this is where my head is at right now.
I’m thinking that perhaps the reason many of us struggle when we hit 40 is that we’re not where we thought we’d be, for one thing. When you’re 20 and getting ready to get out of college and start some career, 40 seems so far away. It seems so old and established. It feels like surely you’ll have it all together by that ripe old age.
And then the years fly by and you get to that ripe old age and you’re more confused than ever. I think as we grow, as we age, we realize that life isn’t the black and white picture we think it is when we’re younger and less experienced. Our experiences in the workplace, as parents, spouses, humans show us–or should, anyway–that there are so many shades of grey in that picture, and that the picture of life and the world is far more complex and varied than we had realized. It’s like we are seeing better and more clearly on the one hand, and yet in seeing that we realize that we really can’t see clearly at all. It’s like we get the vision to recognize that our vision sucks.
There’s a line in a Ben Fold’s song that I love…”You get smaller while the world gets big. The more you know, you know you don’t know sh–.” It’s like the more we see, experience and learn the less we actually know. And that’s a pretty disconcerting thing. It shakes your confidence in yourself and your abilities, in the people and the world around you, and, if you believe in God, I daresay it will shake your faith and belief in God too.
Those years between college and 40 fly by faster than you ever imagined. You change in ways you couldn’t have foreseen. All the judgement and criticism you had for other people suddenly reflects back at you, and it’s not always a pretty picture. People around you have started to get sick, maybe cancer or MS or something. People you know actually start dying (if you were lucky enough to have avoided that up to this point). You start to get cracks. Cracks in the foundation of everything you think your life stands on.
Anyone knows that if your home’s foundation has cracks, you’re in trouble. Something needs to be fixed and pronto, or else its all going to come crashing down on you. Some of us are good at fixing those cracks. Some of us just shove some caulk or something in there in hopes that they will just go away. (Did you ever do that at college? Use toothpaste to fill in the holes you’d made in the walls? Cosmetically it worked but…)
I feel like I’ve gone from cracks in the foundation to a major home renovation. Like with the cracks the walls came down all around me and I now have to start over from scratch. With a whole new foundation even.
I’m hoping that the end result will be better than the one before. One of the blogs I follow is titled “Unfinished 1”, and the most recent post there was about how the author is still unfinished, still a work in progress. And will always be a work in progress. Maybe the different crises in our lives are chances for rebuilding, for reframing things and making them stronger and better. So that perhaps the next “earthquake” that comes along won’t shake the walls down entirely.
I’m trusting that the contractor hasn’t taken off mid-renovation. I feel like the foundation is being re-poured, and while it’s certainly not set yet, I’m seeing progress. Small, microscopic progress. This is a project that is going to take a while. And it’ll definitely need repairs and additions along the way. But hopefully it’ll end up being more functional than the original.
That was a really drawn out analogy. It’s probably trite and sucky, but it’s working for me right now and making me feel less crazy. Less crisis-y. More hopeful.