I have started and stopped and deleted posts about a million times in the past few weeks. I meant to write about our Christmas and how I spent my month off of work, about Steve and his journey, about my shiny, new in-development GRANDBABY (eek!)…so many things. But words felt slippery and pale. Any attempt to rope them together and form complete, cogent sentences was – and I do not overstate this – absolutely dismal. Not just in terms of the writing (though the writing was bad, bad, bad), but also in terms of how I felt as I trudged through the tunnel of emotions and angst that seems to lead from where I am right now to anywhere I want to go. Want to remember something good from the past? Gotta go through the tunnel. Attempting to dream about the future? Tunnel. Figuring out how to manage life in the here-and-now? Well, I think that part actually is the tunnel.
I’m not apologizing for not writing and I know nobody is wringing their hands, wondering what in the world is happening in my life. But I sometimes wish I was able to record this season more consistently. Not for you, but for me. For my family. For a day when it won’t be as painful to look at. But the fact remains, I didn’t. Not in journals. Not on napkins. Not on this blog. There was virtually no writing in December.
Quick recap: Christmas was good. My time off has been…hard. New Year’s was…especially hard. I’ve always loved the newness of New Year’s. I love setting goals and dreaming dreams and making new, fresh systems which I probably won’t sustain, but it’s fun to create them. I’m a dreamer/planner by nature and I LOVE fresh starts. Mondays and New Year’s were made for girls like me.
But this year it was sort of awful because this year, it’s just been really hard to dream. Reasons abound. You can probably figure them out even better than I can, but I’ve felt very stuck in a land with no dreaming. Right now, my family feels wedged in a narrow passageway between earth and heaven, unable to move forward or go back. People – countless people – encourage me to absorb every moment, to savor this time and I appreciate the sentiment, but I’m telling you: it’s harder than it seems. It’s like labor. You know it’s leading to something so beautiful – fresh, new life – and you even know somewhere in your pain-addled mind that the process itself is beautiful, but had someone told me to relish every moment of those contractions I would have punched them in the eye. Watching my beloved suffer as he is right now is…um, wow, I have no words. Watching his body betray him as he desperately tries to hold onto the things that make him real and alive and Steve is more painful than I have ever imagined anything could be. That’s not to minimize the grace that God has given us to endure this – it’s there and I can feel it – but I would be lying if I told you there were no moments when I feared the grace would run out before the day was done. Many days, I fear it will run out before the day has begun. Every night, we are exhausted and thankful that we made it through another day. Every morning, I beg for strength for the hours ahead. No drama here, I promise, just real talk from our real life.
All that to say: I felt fairly stumped as I attempted to establish some New Year’s goals or resolutions. I read several blog posts from people I respect, some convincing me I should achieve more in 2015, and others telling me to do less and be more. Some inspired new fitness goals. Some laughed calorie and carb counting off the to-do list. None of them were wrong, but none of them were me. What did happen in reading other people’s resolutions, though, is a determination inside of me to flat-out refuse to live a life with no dreams. Without vision, we die. We fall asleep with our eyes wide open.
So, I guess my first resolution of 2015 is simply the decision to dream again. To look through the tunnel and into the future, understanding it is murky and muddled, but it is still mine and I am still alive and life is for living. I’ve opened the door to vision that seems small (watching all of Friday Night Lights with Steve) and vision that seems big and impossible (spending some extended writing time in Italy). I’m dreaming through prayer and my pinterest boards. I’m dreaming with trusted friends who hold my heart and secrets safe. And I’m dreaming with Steve, who knows me better than anyone and understands my need to toss some lifelines out beyond our stormy seas and onto the unnamed, unknown shoreline. He more than anyone is able to help me weed out the flimsy, flighty stuff that sparkles on the surface but produces little and get through to the meaty and meaningful stuff that he knows will produce something eternal and deeply satisfying. I am soaking in his wisdom and so thankful that I have it while I look out into the great unknown.
That’s my update. It’s not pretty, but it’s real.
With hope,
Bo
“It’s not pretty” umm, well, maybe it’s not pretty but for sure it is gorgeous, brilliant, lovely. Every word you write fills the rest of us with hope.
Thank you.
You are such an inspiration my friend!
More beautiful than you can see right now. So, so, beautiful.
I will be praying for your year and for your dreams. Thank you for sharing. Always, thank you.
And…actually, I was just thinking last night…”I haven’t seen a post from Bo in a bit…” as I wondered if your nights were still sleepless and what kind of gut-wrenching road (or, hey, tunnel) you and yours are walking through in the latest part of the journey. Sigh. I stand with you in the truth of all the good that is God-breathed in the midst of this, while also longing for the day that it is finished. I have every confidence that ALS has not, and never will, win the day in the Stern household. You are dealing blow after blow to its arrogant, evil head. I’ve found, through being close to you guys, that I love to be friends with winners. Love you, my sister!
I may not have been wringing my hands, but I have wondered about you and your family every day since your last post, and am glad you felt able to write again. No update ever has to be pretty; we just want to know how you are – good, bad, or ugly. Thankful that you are also still able to dream. Your comment about Mondays and New Years being made for girls like you made me smile, as I am much the same way. Wish I had some wise words for you, but even if I had, you have probably heard them already from someone much wiser, or that I lived closer and knew you personally and could somehow help in a tangible way. I look forward to whatever you share, whenever you share, however you share.
Dear Bo, Thank you for sharing your heart. My husband also has ALS. I can feel your heart in your words. Thank you for sharing with us.
Thank you for your words. I lost my sister to ALS on the 28th of December. It’s so hard to recognize what types of feelings I have. I wish us both dreams and nourished souls.
This I the real Bo , vulnerable and honest, so when you said it wasn’t pretty, I guess I would agree…. . The ALS journey is ugly most of the time , mixed with some amazing and beautiful moments you know are gifts from God. . To me it was beautiful that you are open and honest about the most difficult journey one family can face. Your love for each other is something to behold! Gods grace will always be sufficient , even when we fear it may not be. God knows what you need, He will never leave you without His love , comfort and peace. I’m sure that feels hard to believe sometimes( I know it is for me, sometimes) but an elderly friend , she is 90 , she lost her husband 10 years ago , she said, “you have not arrived at the moment you are fearing, when you get there, His grace will meet you” she knows, she’s been there, I trust her, I love you, I just had to share that and hope it settles in your heart. Love you both and always praying!!
After I finished reading this piece with tears in my eyes I looked out my office window and witnessed a beautiful sunset. It felt like God affirming his presence. Photography is my thing, it is what I do when I can’t find words. I’d love for you to have these two photographs. If you would like them please email me at maryhahnward@gmail.com and I will send them to you.
Bo, I love your how real & transparent you are. You & Steve are an inspiration & some pretty amazing really models, on how God’s Grace is fresh & renewed daily. Thank you for being real. Thank you for being you.
One of my favorite memories of you guys, is when you & Steve sang Trina’s & my song(Everything I Do by Bryan Adams) in our wedding 17 years ago. It makes smile & even shed a few years that you two were a big part of our special day. Much love & respect for you guys.
Hi – I don’t know a single person with ALS and my main exposure to it has been watching the recent film You’re Not You but I happened to stumble upon your blog this evening deep in thought about some of my own issues…. I ended up finding inspiration in an unexpected place as I moved from a blog post you wrote about 6 months ago to the year before and then back to today. And it seemed so appropriate that your post was so new. I think my favorite part about your writing is that you do keep it real. This is something so personal, yet you are sharing it with the world. Thank you.
Dearest Bo & Steve, thank you for opening up a window into your heart. I hope you can both be in the moments as they come. I pray that writing is as healing for you as the reading is for those of us who have hurt through the same or similar tunnels. Asking God to continue to bless your whole family with His gentle strength.
That’s a perfect way of putting it. Labor. Contractions. You can’t enjoy the contractions because they are too painful in the moment. Whoa. Such revelation there, Bo. Thank you for your real. Thinking of you and praying so much.
I’m blessed to pray for you and yours. God is with you; may His Presence give you strength for the moment.
This may not come out right but I often feel like other women are super-Christian-mom-wives that float through trials and tribulations with hands folded and Mona Lisa smiles while teaching Sunday school, volunteering at the soup kitchen, home schooling 6 wonderful children while successfully breast feeding twins. I appreciate your raw honesty and vulnerability. Thank you.
Dearest Bo.
Today was the first time I ever read about your world. I am a Portland girl too. I am caregiving for my sweet Mom who has Alzheimers and my Father who has Parkinsons. One of my best friends was just given 6 weeks to live, she has advanced COPD and her breathing is getting labored. Your blog has been the first that truly grabbed me and held my attention so powerfully. You understand the journey of life and death. Not unlike the struggle of a butterfly before it’s birth into the world. The wrestling with what is and how these terrible and beautiful moments are shaping us, making us stronger. I want to thank you for writing. I have felt so lost lately. My heart feels vanquished. I am a dreamer and a creator and that part of me has gone missing over the past 6 months. I know she is there but I don’t have the passion to call her up right now. So, I want to thank you for being real and raw and available. Sometimes I feel so lonely. My faith is strong but my heart is weary. I hope you don’t mind if I lean on your wisdom through this season. I believe God created a divine appointment for me today, reading about “Oatmeal”. You are a breath of fresh air and hope. Be blessed in the coming season as you love deeply.
Bo,Since the initial diagnosis I have prayed for your family from my perspective but now because of your honesty I can pray for what I hear from your heart.
Father, guide this precious servant family through a tunnel fortified with love- your perfect love and the love of all of us who know them. Give each of their family members a secure vision to build on each day. Vision when the day is hard and when they need to find the greater strength to rest in you. Record in the corners of their minds a journal of the precious moments spent -not translated with the written word but the still small voice of the Holy Spirit for the day when they will need them. Finally Father,let all of their trusted friends and loved ones be amazing listeners and lovers of their hearts. Love you Abba, Amen
I hear your tunnel imagry, and I know it must be as apt as words can be. I’m from W. Michigan. I picture Tunnel Park. Small, not a park to boast about. Wretched graffiti words hang on the walls. The tunnel is dark, as tunnels are. But waiting at the “other entrance” are blonde sands drifted into wave ridges merging right into blue: long and really wide with hues of deep. Lake Michigan. They call it the pure state, but we know only Steve will experience true purity once he exits here and enters there. But you too will find peace even as the waves roll in. You will feel the sun on your face, you will build castles and play with your grandchild(ren!), and you will tell story after beautiful story of the legacy they received from a wonderful, wise, and loving man God called home–not too early, not too late . . . , and how no tunnel is so dark that you cannot find The Lamp for your feet.
Bo, your words are cutting like a butter knife through butter, right down to the surface where all things are so real. Thank you for letting us into your truth – wrestled out each and every day on this suffering journey. And, thank you for reminding us that the death of “what is” always leads to the new life of “what is to come,” and that God gifted you with eyes to see that promise in this new year.
Just wanted you to know that you and your beautiful family are in my prayers daily. HUGE virtual hugs.
Sigh! Bo, your blog was absolutely awesome. i could be going through the same thing, but wouldn’t be able to tell it like you do. Your way of saying things makes us understand totally what you are going through, as well as the family. I don’t have much to say, except i wish that there was some way that I could change things. But, what I can do best, is to pray and believe that it won’t last much longer, one way or the other. i leave Kenya the night of the 12th, and will call you after I get to Florida. Sue and Jerry will pick me up in Florida. I will be there for awhile. At that point, we can talk about whether I should come out to see you all. My time here has been wonderful. I have learned to appreciate what everyone does here at KKV. So until I talk to you in the States, I will be praying for you all the time. Give my love and hugs to Steve. Love you much, much, much! Mom