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.