I wrote this list two years ago, but it’s just as true today. I’m re-running it since the topic has come up so much recently and have added an important sixth point at the end.
Let me start by saying: I certainly do not speak for everyone in crisis. There are a million different kinds of people and a million different kinds of battle. I’ve tried to stick to things I’ve heard many times from many people, but this list reflects my two four years in the trenches more than anything else.
1. Sometimes your life is hard to look at. I will try to attend your daughter’s wedding and I will be so happy for her. But I will look away when her father walks her down the aisle and I will leave before the daddy-daughter dance. These things are too much for me. I’m not mad; I’m just swimming through some deep-water feelings about the future. I don’t need hugs or help; I just need a little room to breathe and none of it is your fault. This is my heartache. For some, it’s seeing an anniversary celebration on facebook, or flirtatious banter between a husband and wife. For others, it’s witnessing the baby milestone while imagining how old their own would be. Different things are difficult for different people, just know that while we love you, sometimes your world is hard to look at. We know you have problems, too, and we’re not jealous of your life – we’re jealous for the life we used to have before our battle broke out (or the life we’re wishing for that hasn’t quite started yet). Action point for armies: don’t stop inviting us into your lives, but give us grace when we need to look away for a bit.
2. How much we feel like talking about our battle can vary wildly. Some days are very difficult and so I will answer questions abruptly in order to save us both from my messy emotional breakdown. Some days it’s very cathartic to talk about it. So, how can you as my friend, know which day it is? You can’t. And this is when it’s hard to be you (and I’m sorry); but what you can do is ask: “How are things with Steve?” followed up immediately by, “I understand if you’d rather not talk about it.” Perfect. You’ve shown me you care and also given me an easy exit should I choose to use it. And let me add – even when I don’t feel I can give a detailed answer, it really does matter to me that people ask. (So thank you, sweet friends, for the question. And thank you for understanding when I can’t linger over the answer.)
3. We’re secretly afraid you’ll grow weary and disappear. We don’t fear it because we doubt your character, we fear it because we would probably choose to leave our battlefield too, if given the option. Through tears, I type this: I can’t imagine what I would do if I lost my friends as well. I just can’t imagine. I know so many people who run out of steam in supporting a friend and then they’re embarrassed to step back into the battle again. Don’t be embarrassed…just give a call and say, “I miss you. Can I bring over some mac and cheese?”
4. We still want to fight for you, too. Don’t stop telling us what you’re going through, don’t stop asking us to pray. It gives me comfort to know I’m not the only one in a fierce fight and it gives me courage to know that I still have something to offer the world outside my war.
5. We love you. And we’d be lost without your friendship. Even when we lack the strength to say it or show it, please just know it.
6. We don’t need answers as much as we need you. Everyone who deals with a difficult diagnosis also deals with a landslide of medical advice from friends, acquaintances and complete strangers. It’s exhausting. I’m working really hard to get through the demands of each day – taking time to read a book about a miracle cure that Steve’s doctor has never heard about is, honestly, just not an option right now. I have a small group of trusted advisers who have tackled some of that research for me and made recommendations based on their findings, but we cannot pursue every option out there and I sometimes feel people are frustrated with me for not trying their suggestions. Action point for armies is simple: extend advice cautiously, if at all, and make sure that your friend knows you’ll love them whether or not they try what you’re suggesting.
Comments are open – I’d love to hear thoughts from both sides of the battle.
With hope and gratitude for the army that fights for us,
Bo
One of the most miraculous things to come out of our ALS Fancy Dance was this photo.
 #ALSfancydance14 Photo cred: Joe Earwicker
Miraculous, because I didn’t think Steve would be able to get out of his wheelchair at all that night. It never occurred to me that he would even try – so this moment was entirely spontaneous and, on his part, unbelievably brave. Dancing with my sweetheart to You Are The Best Thing will live forever in my memory as one of the most beautiful, meaningful sixty seconds of my life. I’m so glad some quick-thinking friends grabbed their cameras and captured it because behind every photo are layers and layers of life. The picture shows one story, created from many, woven together and wedged into a 3×5 frame.
The story behind the story is this: Marriage is hard. We are on year thirty and I will tell you honestly that there were some seasons when we didn’t know how we would go on. We knew we would go on – we’re both too stubborn to quit – but we didn’t have the first clue how. Hard times and dark nights conspired to sink our ship. Kids and money and mortgages and distractions and failures circle like vultures around even the stoutest hearts and surest vows. We have not been immune to these things, nor have we handled them perfectly. But I’m learning that the beauty in marriage is not in doing it perfectly, but in responding to the imperfections with grace and grit. It’s in the getting up and trying again, believing again, hoping again, dancing again. That’s where the real magic is.
Also? Terminal illness is hard. It’s hard on relationships. Hard on romance. Hard on expectations. Just really so hard in so many ways I could never have imagined before we walked the road. For much of our quick spin on the dance floor, I helped to hold Steve steady while simultaneously sobbing into his chest. And I have never felt more privileged or qualified to do anything in my whole life. But at 3:00 a.m. when I am emptying the suction machine and fixing his covers for the third time and wondering if I’ll ever sleep through the night again, I do not always feel privileged. And many times, Steve can feel it, too – he feels, not through my words but through my way, that his needs are an intrusion on my life. Caring for him is the greatest honor, it really is, but I would be lying to say I feel that way 100% of the time. As much as I’d like you to believe I have figured this thing out, the truth of it is that sometimes I feel selfish, suffocated and entirely insufficient for the job. As I was writing this post, Steve had a crisis choking situation and I rescued him (and I know rescued is a dramatic word; believe me when I say it’s the right one) with shaking hands and frantic prayers and I did not in that moment feel at all qualified. I felt desperately in over my head and hopelessly inadequate to care for a frail body with so many needs. This is our reality. Terminal or chronic illness is hard and I understand why many couples don’t survive it. That we have survived, and in so many ways are healthier relationally than we have ever been. is not a feather in our cap – it is a testimony to the sustaining power of God and to the ways His grace smoothes and softens selfish hearts and holds us up when we’ve done all we know to stand and still can’t get our legs to work.
When I look at this picture, I see a third pair of arms. While I am holding Steve up, I am being carried by a bigger God than I knew existed before I needed Him this much – and also by Steve, who has not stopped loving and caring and cheering for me during his battle with ALS. Turns out you don’t need strong arms to hold your wife’s heart. He is just as strong for me as he has always been and that’s why he’s my hero.
The stories behind it make this photo a miracle because it is life that snuck through our dying. It is joy that seeped through our sorrow. It is hope in heartache. The love you see is every bit real, but it is not perfect or polished or even particularly brave. It’s mostly just rugged survival, fueled by the relentless mercy of Jesus Christ. That’s marriage.
And that’s a miracle.
With hope,
Bo
I remember the day that Victoria came home and said, “When I tell people about dad, I can tell they think we’re a tragedy.”
I knew exactly what she meant. I saw it in their faces, too: horror, sadness, fear. I felt the very same things when those three letters were slapped onto Steve’s future.
But the thing is: we’re not a tragedy.
We’re a triumph (and so are you). We’re a spectacle of love-against-the-odds and irrational hope and unlikely joy. My family – out in front where you can see them, and also behind the scenes where you can’t – lives a fairly never-ending dance of joy and sorrow. I will tell you honestly that holding onto happiness has been the most difficult thing we’ve ever done. Some days, it’s a fight to the finish and some days it’s as natural as breathing, but every day it’s worth the work.
Alive, loved, satisfied is not just our hashtag. It’s our strategy for survival. It’s tattooed on my kids’ arms because it’s a motto that will never change. The nature of our battles will change, the faces of our Goliaths will change, but our marching orders will stand.
{Happiness = knowing that we are alive, loved and satisfied.}
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When we started planning a fundraiser-within-a-fundraiser (to raise money for our Walk to Defeat ALS team which benefits the ALS Association), we dreamed of an event that was soaked in hope and vibrant with victory. We wanted it to be fun. And fancy. And we wanted it to be everything that ALS is not. In fact, we wanted it to spit right into the face of ALS.
Thus, the event that shall henceforth be known as the ALS Fancy Dance.
We gathered at a beautiful place.
With beautiful people.
And there, beneath the starry sky, we danced in the face of fear and frustration.
We danced, remembering Debi’s dear husband, Randy.
And Barb’s dear brother, Randy.
And Buck’s sweet sister, Kay.
And we danced for Steve and all those who cannot.
We danced for hope.
And for the dream of a future where the cure is common and the disease is rare.
But mostly we danced because we are not a tragedy.
And life – no matter how treacherous – is still more beautiful than we ever dreamed.
Thank you to all who came and danced and hugged and ate and drank and gave.
{It’s not to soon to Save the Date: September 4, 2015.}
With hope,
Bo
P.S. We have so far raised just over $16,000 for the Walk to Defeat ALS. It’s not too late to donate or walk with us this Saturday, September 6 in Central Oregon. ALSO – I hope this week to write a post addressing some of the reasons why we support the work of the ALS Association and to at least give you my take on the criticism that’s been swirling through the news recently. Stay tuned…
To see lots more fun pictures of the dance, check out our Instagram hashtag #ALSfancydance14.
Friends, countrymen, lend me your ear.
I have concerns. They are thus:
Concern # 1. People no longer understand what it means to dress fancy.
Am I the only one concerned about this? Because, I am. Dressing up is a privilege and a delight, I tell you. I married a man who owned a full wardrobe of neckties and wore one every. Single. Sunday. Dressing up takes us back to the day when men were strong and heroic and women were curvy and feminine and fun. I’m talking this business here:
And this…
I mean…who is going to argue with these beautiful people? Dressing fancy is fun and it’s fierce! The problem is: there’s no venue for it here in our brewpub town.
Concern #2: Men and women have forgotten how to dress up AND date.
Dating is good. Dating is fun. Dating isn’t bad. These principles apply to both single AND married folk alike. Dating is a good, good thing and dating in fancy duds and dancing a happy dance is good for the soul. I mean, come on single men – you don’t have to marry her, but you still get to dance with her! This is good.
Concern #3: ALS is a wretched disease that keeps the best men and women I know from dancing like they were meant to dance.
I’ve been dancing with this guy in the kitchen for 29 years.
And so, on August 29, we will come together and solve all these problems in one fell swoop. Solved! Dress up. Cut a rug. Bring a date. Raise some funds for those who cannot dance (I mean…because they have ALS, not because they “can’t dance” like I can’t dance.)
We are proud and excited to be hosting the first ever Dance to Defeat ALS – aka: Dance Because You Can. Deschutes Brewery is providing some lovely beverages. My favorite food truck will be serving up fantastic BBQ and Yo’ Wild will keep the frozen yogurt flowing freely. The very best dance band in the PNW will keep the music flowing freely. All proceeds all night benefit the ALS Association – an organization that has been a LIFELINE for our family during Steve’s battle with ALS. You guys really…I can’t even. I can’t begin to tell you how much we appreciate them and want to help them with their good, good work.
So, now it’s back to you. Will you help us solve the fashion, dating and disease problems of the generation? One night. One dance. One chance.
We’ll see you there!
Dancing our way to a cure,
Bo for Team Stern
P.S. We came thiiissss close to postponing this event after our friend, Joy, was diagnosed with cancer and her fundraiser was scheduled for the 24th. Please know this: our love and support is with Joy. Steve and I can’t attend her fundraiser but you better believe we’re sending a representative from Team Stern and a check! The Bachman family’s need is immediate and essential – if you have to choose just one even to support – PLEASE choose Joy’s. Thank you.
P.P.S: Team Stern receives NO money from this fundraiser. This is all for the ALS Association and our Walk to Defeat ALS Team. If you can’t come to the dance on August 29 or the Walk on September 6, you can donate here. But we will still miss you and your Macarena moves.
Well, we are on week two of the very-viral very-everywhere ALS ice bucket challenge. I know, I know, I can hear the groans…it started out cute and now it’s out-of-control. Played. Clogging up social media sites everywhere.
I even read this article in which the author called the challenge (that has raised an unprecedented amount of money for one of the most outrageously underfunded diseases) a waste of fresh water. Another headline whined, “Is the Ice Bucket Challenge Going to Cure ALS?” Um, no (and – btw – that’s a stupid bar to set for any fundraiser.) Critics complain that the challenge is really about feeding our American narcism and does nothing for ALS awareness or funding. They assert that people should just quietly donate their money and move on with their lives.
I get that they’re cranky, but I think maybe they don’t realize what it’s like to face this insidious disease and then realize that it’s nearly invisible to the rest of the world. As I watch my husband become entombed inside his own body, I feel desperate for people to understand that this sort of inhumane condition exists. But for some reason, while everyone acknowledges it’s one of the worst fates imaginable, funding for research and patient care is nearly nil. I recently mentioned to a doctor that my husband has ALS and she first looked confused and then said, “Oh, that’s Lou Gehrig’s Disease, right?” Right. Why does she -a doctor of medicine – still only know it by Lou Gehrigs Disease? Because we humans need to associate things with people. It’s easier that way. That’s why the celebrity faces and personal challenges happening in the ice bucket challenge are so effective at bringing in money. And if someone gets to look good while plunking their $50 in the ALS tip jar, I have zero problem with that.
Because here’s the deal: We are in for the fight of our lives with this monster, and the very LAST thing I want is for people to give quietly, anonymously, and then slink away. Raise the roof! Raise a ruckus! Call all sorts of attention to yourself! I will be happy for you and every Facebook like you receive, as you nudge ALS an inch or two closer to the collective public consciousness.
So, fear not, dear reader, this too shall pass and your Facebook newsfeed will go back to cat videos and kids singing Let It Go. Until that happens, here’s a little reminder about what it’s like to live with ALS and why this level of awareness is like gold to families like mine.
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A Mile in ALS Shoes
People ask me often what it’s like to live with ALS. It’s a brave question because the answers are not very pleasant. But it’s also such a worthy question because understanding how this disease impacts those who suffer from it creates empathy which is so valuable; it carries us into another person’s world and allows us to understand what they’re feeling and how they’re hurting. As I watch my strong husband struggle with things that used to be easy and automatic, I sometimes wish that everyone could see life from his perspective.
If you would like to experience just a tiny corner of an ALS life, I have a list of Empathetic Experiences for you. These are things you can do to walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.
- Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
- Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.
- Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.
- Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
- Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.
- Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
- Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
- Go to bed and stay in one position for as long as you possibly can, moving nothing.
- Strap weights to your ankles and climb a flight of stairs, taking two at a time. That’s the kind of strength it takes for someone with ALS to tackle the stairs on a good day.
- Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.
And to my friends living with ALS: please give us more ideas and help us move into your world for a bit. We want to help make your lives rich and full and I’m not sure we can do that without at least a basic understanding of what you are facing. I think I speak for many when I say: you are superheroes and we are in awe.
With unending hope for a million-mile cure,
Bo
P.S. If you want to literally walk a mile and help fund research for a cure, sign up to join Team Stern on September 6 for the Walk to Defeat ALS. Lots more on that to come!
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Kim Fears - Bo- Please know that I am passing this blog on to my mom who is struggling with some of these things. Since Dad’s ALS diagnosis she’s had those bad days and often felt guilty after her short answers to people. I’m pretty sure you’ve heard this from many different people but you are really a great inspiration. I pray that God gives me 1/8 of your grace every day. I’m reading Ruthless right now and have Beautiful Battlefields on the way. Thank you for sharing your life!
Kim Fears
Joyce Strong - Thank you Bo for opening up and putting your thoughts into words so I don’t absentmindedly put an extra weight on friends. I have a close friend who lives in Pasco WA. She had breast cancer in “07. It came back a year ago. Recently she learned it has progressed further. I spoke to her, then, immediately sent her my copy of Beautiful Battlefields. She said it’s been extremely helpful. Thanks for leading my friend to a closer walk with Jesus!
Rachel - You wrote my words! I SO relate to the six points that you make. In my case, it can be the pregnancy announcements, scan photos, baby photos, that I rejoice with my friends for and cry for my empty womb, all at the same time. There are definitely times (and places!) for talking about it and not talking about it. With a more long term battle, it can feel like it’s old news to keep sharing about it. I also live with MS. I like the normality of being able to share with my friends as before. I never want them to feel that they can’t share their struggles and battles, never want them to stay silent because they consider my battles worse. Generally, I’m tired of answers. Hence the title of my blog! Questions seem more appropriate to my journey of discovery and the process of fighting the battle. Thanks so much for this article. I’ll share it on Twitter and on my facebook page.
Debbie - Thank you for these suggestions. With two friends battling cancer right now, they’re very meaningful to me. You have great insight.
Tammy A - From one soldier to another: I love you dearly forever.
Debbie - Thank you so much Bo. Just what this mom’s weary heart needed. Life can be so hard but God is so good.
tea - Thank you for putting in to words exactly how I feel as well, regarding the battle I’m in (disabled husband). I am amazed and inspired by how eloquently you were able to communicate what it’s like. In my journey I often think of Job’s friends and thank the Lord for allowing me to know that Job had friends who probably had good intentions…but they were actually making it worse for Job. I thank the Lord for reminding me over and over again that He is the one who sticks closer than a brother! Proverbs 18:24
Lynn - Everyone of your points is spot on! I had the exact feelings. # 6 was an especially hard one and there have actually been some broken hearts over the situation at the time. I think of you and the other “girls” so often. March on through this battle knowing that so many love you!
Nikki - Thank you for re-posting this. My family has currently had our little world turned upside down. #1 resonates quite strongly with me at the moment. I don’t feel myself anymore and wish I could just be happy for all my friends and family that aren’t suffering like we are, but instead I feel insane jealousy. It hurts to hear them complain and stress over the simplest things. If only they knew the stress I carry on my shoulders. It hurts to see others living the life I used to have.
Dee - Thank you for writing this. As a fellow sojourner in this deep-water battle, it brought clarity and understanding as to why we feel the way we do. We lost our precious granddaughter recently and it has been devastatingly hard. I had to stop FB because all our friends post pics of their grandkids; went to a baby shower and had to leave when I felt the grace was up – cried all the way home. You put it so beautifully that it is my heartache, no one’s fault and that I just need room to breathe. I am now praying for you and your family daily, and standing with you in your battle. God bless.
Emily Reynolds - Thank you so much for sharing this. Whether through our many years in ministry and the battles we couldn’t always share or our adoption journey and the heartache of raising a child with special needs that aren’t visible to most people this echoes some of the struggles I have felt as a mom, wife and friend. #6 is especially true right now. Thanks.