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 okay 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 twelve 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% honest, I’m only about 40% 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 a.m. 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.
With hope,
Bo
(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.)
You! This. just yes.
Oh, it’s beautiful.
–that a “light yoke” means “free to feel and to be honest in that feeling.”
Revolutionary my dear, but yes. exactly that!
love you
Hi Bo,
I too am going through a very difficult season dealing with chronic disease. Your words about how difficult it is to be honest when life hurts ring true to me today. In this age of social media, few people are willing to be genuinely vulnerable for so many reasons. I feel it is important that we be honest with ourselves first and foremost. I have personally been living in denial for quite some time, afraid of what my new reality will make of me, afraid of what it will make of my family, and afraid of how it will impact my relationships. It is a very isolating place. I’ve been in the grieving stage of anger for some time now, and it has been overwhelmingly draining. I don’t want to be angry anymore, it has been hard to not be angry with God and everyone else.
When I read your blog I don’t feel so alone and I don’t feel so angry. You are honest about your family’s struggles and you remind me that God has his hand on my back too, guiding, loving, and teaching me. That little spark of hope within me is fed.
Thank you for your “honesty”. God bless you, Steve, and your family.
Sincerely,
Lisa Campbell
i like all of the points, but I especially love #5. Thanks. Watching you ride the tides and cheering you on.
Hey Bo and Steve.
I wanted to write after reading “Nights:Life with ALS”.
But to tell you the truth it really shook me, for days. It was like looking into the future with Lenore and I as we journey down the road of ALS. I hated what I saw, I was so sad for both of you and sorry for myself. But I needed your words, I needed to meet you and Steve it was a God appointment. I hate to say it but your journey is giving me the assurance that in all of this Jesus is with you as He will be with us as hard as it may get. And it will get hard! Oh for the tides.
So I write today after reading your post to say, thank you. Thank you for your honesty and transparency. Your blogs are a gift to Lenore and I. You and Steve are a gift. I am impacted deeply by your words but I am changed somehow for the better by your spirit and your presence that is captured through your writing. Thank you Bo and Steve much love.
Bo-
I hope you realize how important this blog is to caregivers and family members of ALS patients. My mom faithfully takes care of my dad and experiences all of the trials you address. When she reads your blog, it gives her strength and it stands her back up on her feet.
Thank you so much!
I am praying for you Bo, and Steve.
Thank you
In His love
Crystal…
Bo
Your words are a gift. They give me courage. They help me to know that in the dark, hard, and hurting, God is still there. Thank you for your faithful example. God is working through you to minister to caregivers who are in the hardest of spots. That is so beautiful.
Praying without ceasing for you and Steve,
Laura Black
Thank you, Bo. I fell upon your blog like the ice water that rolled over multiple heads last year. The reality of your lives with a loved one stuck in a failing ALS body must be like the ice: shocking! hard! bruising and just plain bone freezing, emiting shrieks from everyone in impact zone! But the warmth of your spirits combined with a solid faith that refuses to quit melts those cubes and flows living waters from the Source straight to hearts whom you’ve never met. Yep, we get it: Tide. Yep, 40 % transparent gives us a peak w/o violating those you love or making us feel like voyours. I can’t imagine your lives, but I try to, and that causes me to feel for you and to pray, joining a mighty army surrounding you right now. Yep, I’ve shaken my fist at God too. He loved me anyway and held me close until I could look back and see that despite my disappointments, He had a better plan. “I felt Him grab my shaking fist and hold it to His heart.” Said He, ‘You can bring your weaknesses to Me without feeling guilty'”– brought tears to my eyes. Only a BIG and COMPASSIONATE GOD could take our flailing but honest fist and turn the hard hail circumstances of our lives into salt water to heal our misery and cleanse our soul. He lives still.
Thank you Bo so much for sharing. I am a caregiver to my twenty-two year old daughter…sweet Ashley. I loved what you said about what the Lord says to us. Just what my heart needed today.
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Thank you for your blog. My husband was diagnosed last August. So far, his progress appears somewhat slow, but the knowledge of the diagnosis is always there. I feel like ALS has stolen my future. The one I used to daydream about – where we are retired and traveling; seeing our baby girl (who is 6) go to college, get married, have babies; singing and acting in church productions….
We just celebrated his 55th birthday yesterday. I am very thankful that we can still enjoy a nice dinner and have fun. I just wish I could turn off the ALS button sometimes. The one that makes you think, “what about next year’s birthday?”
Although it’s hard to read the truth sometimes, it makes facing reality a lot easier… to know it’s okay to feel overwhelmed sometimes. Again, I say thank you.
Love, Joy and Peace~
Yup. Tides of emotion. I try to, on occasion, write in my journal when I am not feeling down–because there are joyous moments–they just don’t get recorded as often. So keep writing your pain, for us, so we know we are not alone. Love and Prayers, Kristin
I identify with everything you’ve said. My intense desire to protect my wife’s privacy was one of the biggest inhibitions against honesty. And of course I wanted to seem completely strong–to her and to everyone else. Thanks for articulating these thoughts so eloquently. Blessings to you and Steve.
–Jess Lederman
Thanks for putting into words- exactly how I feel! Beautiful.
I’m a huge fan. I can totally relate. I call raising my daughter with a disability my private war that I can’t talk about. Just today I had a phone convo with a good friend of mine who is also raising a child with a disability. She lives in Florida. I live in Kansas City. There is NO ONE I can talk to because of these points. I feel like I’m weak and whiny when I should be the victorious overcoming Christian mom. Thank you for being vulnerable. Thank you for being our voice and writing down exactly what we’re going through.