I get a lot of emails from caregivers and people going through illness or crisis and the thing I hear the most, by a landslide, is "thank you for being so honest."
Can I be honest? Honesty is hard. It's hard for many reasons; here are a few:
1. You run the risk of appearing weak and inadequate in a world that puts a premium on strong and capable.
2. You run the risk of people telling you you're doing it wrong. I'd be OK with being corrected if we're talking about how to knit a potholder or cook a leg of lamb—but being the caregiver to my husband, having his life in my hands and feeling daily overwhelmed by it? That's tender ground. I understand why many choose to not share at all or to polish up their deepest thoughts before they let them out for the world to see. I have chosen NOT to hide the truth away so that those who also feel overwhelmed and inadequate can—for the briefest moment—also feel normal.
3. You run the risk of exhausting or alienating people who aren't in a season of struggle. It's hard to keep reading about the same hard nights and long fight over and over again. I totally get that. I would have stopped reading my blog two years ago. I read other blogs with fun recipes and recaps of family vacations to Disneyworld and I wish I could write about something else. Anything else. But this is my honest. The process of watching a spouse transition from one life to the next tends to crowd out the meaning of many other things. I'm just not sure how I would authentically gush about meatloaf in this season of my life, though I'm not ruling out the possibility entirely.
4. You run the risk of being compartmentalized by your confessionals. Just because I feel hopeless and helpless on Tuesday doesn't mean I feel that way on Thursday. Emotions roll like the tide for me right now ... I mean, if the tide came in and out every 12 minutes or so. In the beginning, I tried to wait to write until I felt something I was certain would "stick"—but I've learned that there isn't very much that sticks forever and there's beauty to be found in the rhythm of grief and gratitude, heartache and happiness, frustration and triumph. I hope I always communicate enough of the ups and downs to help people understand that God is not distant from any of it. His presence hovers over it all.
5. You run the risk of exposing the people you love most. In order to be honest with what I'm feeling, I have to also include some of what Steve is experiencing. I've tried to be very, very careful with that and to always run things by him before hitting the publish button. We believe it's helpful for people to understand what life with ALS is really like. We're also uncomfortable sharing the full details of that reality. So, we try to land somewhere in the middle. While I'm always 100 percent honest, I'm only about 40 percent transparent. Some things are just too sacred or intimate to share. Most of our story lives under the surface, in the deep places, where it will stay securely held by the One who holds the pen.
And that's how I feel about honesty and transparency in general the midst of suffering. Today, specifically, I feel pretty lousy. We had a hellish night, trying to make some new equipment work. We had a very tense morning as our beyond-tired selves tried to come to an agreement on how to solve problems that are way over our heads. I left our room at 5 AM for the refuge of coffee and my Bible and—here's where that transparency comes in—I journaled, "This burden is not light or easy. It's hard and awkward and too heavy for humans." And I cautiously held that bold confession up to the light bulb of His scrutiny, all but daring Him to be mad at me for questioning His explicit promise that His yoke was "easy and light." But instead of anger, I felt Him grab my shaking fist and hold it to His heart. "The promise doesn't mean life will not be hard or heavy," said He, "It means you can bring your weaknesses to Me without feeling guilty. It means I'll help you. It means I won't give up on you because your life isn't perfect and your heart is messy. A light yoke means you are free to feel and to be honest in the feeling."
So I am. Being honest today in the feeling. And in doing so, I hope I give you hope and permission to scrape away the layered-up veneer and let your pain out where it can breathe and be built into the mosaic of your beautiful life. That's what I believe. That's my honest.
(UPDATE: I just checked on Steve and the equipment is working and he's sleeping peacefully and the coffee is working on me and I'm feeling decidedly less lousy than I did two hours ago. Tides, I tell you.)
Bo Stern is a sought-after speaker and writer, and a teaching pastor at Westside Church in Bend, Oregon. She is passionately involved in raising awareness and funding for ALS (Lou Gehrig's) research, with which her husband was diagnosed in 2011. For more info and to follow her story, visit bostern.com.
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