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:
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.
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,
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!
This is Florence Marigold.
She is two. And darling. And very sick.
This is Steve Stern.
He is 52. And wonderful. And also very sick.
Steve has ALS and Flo has SMA, which is sometimes called “Baby ALS” – and if there was ever a term (and disease) that should not exist, it’s that one.
I met Flo through her mom, Michaela’s, blog. Michaela and her husband are people of great faith, enduring an unimaginable storm. Michaela writes like the wind – her words roll over and under and through with a graceful beauty that packs a gale-force punch. I recently told Michaela that I wish Steve could meet Florence (he already loves her through her pictures and her mom’s words.) He couldn’t hold her, but he would try to sing to her. He would pray over her and tears would roll wild and he would believe for her. They are sojourners, Steve and Flo, traveling together through the worst diagnosis and held together by the best God. They each reflect Him in breathtaking ways.
I’m sharing this today for two reasons. The first one is: read Michaela’s blog. It’s just beautiful. The second one is: would you join Steve and I in praying for this family as they walk the soil of the Shadowlands and also welcome a new baby in just a few weeks? If prayer makes a difference, and I’m certain it does (I’m proof that it does!), then this is worthy place to invest.
And finally, a letter to Florence from Team Stern>>
Dear, darling Flo,
Do you know how beautiful you are? Your life pulsates hope. Our prayers for you are many and brazen. They are storm-the-gates, rescue-the-damsel sorts of prayers. And they are also beauty-from-ashes and joy-from-sorrow prayers. You are so little to take your place among the soldiers fighting a neuromuscular Goliath, but you are not overmatched. The God of David is the God of Flo.
We pray for your heart and your hands and your hope. We pray that you feel defended and loved every minute of your life. We pray that Jesus Himself visits your dreams and gives you peace and rest and joy beyond reason.
You are a miracle. Though we are far away, our feet share the same battlefield and we are joined at the heart.
With all our love,
Steve & Bo
P.S. Can you just take a second and look at the pictures of Steve and Florence? Those smiles just make me so happy and challenge me to smile, too. That’s all.
Last week was rough and it culminated in one very difficult night as I was preparing to leave town for 24 hours and dealing with everything necessary to do that while also making sure Steve has round-the-clock care. I wrote this on Friday night and I’m only sharing it today because we are -thankfully – on the other side of it and feeling so much better and stronger now. I think it’s important to tell the dark parts of the story, too.
I’m sitting here in bed tonight, listening to Steve struggle for breath, and struggle harder still for hope and it is almost more than I can take. We have each felt beaten today. This morning I complained to him about how I need a break, a bit of time away, a good night’s sleep. I regretted my words almost immediately and then I went for a run and replayed them in my head for 3.74 miles. Tonight I feel suffocated by my own inability to get this right. He feels suffocated by his own body and a sickness that is cruel beyond telling. We are a sorry pair.
I’ve written a lot about ALS, pointing to the beauty buried in the soil of this battlefield, but tonight it’s hard to see it. It’s hard even to see my hand in front of my face – everything is inky black and there is no sign of sunrise. I keep thinking of the thief on the cross, suffering the cruelest death, discovering the promise of a home in paradise, and then hanging there in the dark for three hours. I can almost see him – suspended between the end and the beginning; fighting for every breath and wondering if the promise was true. Would this death end in life? I feel like we’re living our three hours of darkness. So the truth I cling to is this: Even though the thief couldn’t see Him, Jesus was very near; just one cross away. He is surely in our dark too. He is intimately connected to our suffering and infinitely aware of all the ways we are gasping for hope and strength to keep fighting this battle.
On the beaten days, faith is all I’ve got. I’m not a single bit tempted to toss it out and go it alone. The amount of muscle and ingenuity I have to bring to this battle on my own is laughable. He is my only hope.
Since I started writing this, the medicine I put through Steve’s tube an hour ago has begun to work and his breathing sounds better. He is drifting to sleep and I am praying for rest to sink deep into his bones and into his heart and into his hope. And I’m trusting the only One who can see in the dark.
As I said, we are better now and we are thankful. If you would like to shoot a prayer up for us, we are looking for some help with Steve’s care at night and it’s not an easy spot to fill. We’d love prayer for supernatural fitting together of the pieces we need to walk this road with grace and joy.
Yesterday, I filmed some devotions to go with my new book. It was a pretty involved process since we needed lots of them and each one requires several takes. By the time I fell into bed last night, the whole experience was still buzzing around my brain to the degree that I dreamt about it. And in my dream, as soon as I was done filming a video, the tech crew would remove it from the camera and pour it into a feeding tube.
Now, I’m no dream analyst, but it would seem my work-life and my home-life are colliding.
This dueling focus between my investment in the career that I love and the man & family I adore is a battlefield for me. I have chosen to stay committed to work and writing during Steve’s illness for a variety of reasons, but the main one is: I feel certain this is the will of God for my life. I know many spouses who quit their jobs and devote themselves entirely to the care of their beloved. Others walk away from the marriage entirely (and I have to assume that’s a result of preexisting issues in the relationship and not just because of the diagnosis.) This decision to embrace both caregiving and career is the most difficult thing I’ve ever done and some days I feel my toes dangling over the edge of that great and terrible cliff called burnout. Some days I feel certain God has overestimated me. So when I want to call in sick to my life, I have to keep reminding myself of a few primary truths and they are thus:
- The call of God comes bundled up with the resources we need to accomplish that call. He equips us in the same way we equip our kids with the right backpack on the first day of school.
- I don’t have to do this perfectly to do it well. Screw ups are part of the landscape and that’s okay. In a season of life when the watching world is being so generous with their approval (i.e. we hear a lot about how inspiring we are), I am living in undeniable proximity to my own inadequacies. My dumb mistakes and obnoxious self-centeredness smack me in the face on a daily, sometimes hourly, basis. It is built-in humility. And I’m grateful because I am old enough to have seen the profound impact humility makes on those who hope to change the world.
- He will not be in debt to me. I can easily play the martyr (“I just give and give and give….”) but sometimes when it’s quiet and I’m surveying the blessings our great Creator has piled on my life, all I can do is whisper, “You’re outrageous.” His love has been lavished over me in handfuls and heaps and I will never be able to pay Him back. He will not be in debt me. Not ever.
So, I’m thankful today to serve the One who came to bring ever-increasing levels of peace into our collision-course existence. He is God at the intersection of too much and not enough, of sorrow and celebration, of beauty and ashes. He is God at the corner of Saturday work and Sabbath rest. He is. And we are His.