The hardest question I’m asked right now – the very hardest question – is “How are you?”
It’s not hard because my life is bad. It’s hard because I’m just feeling...so many things. The range of emotions I feel on any given day swings wildly from calm and grateful to confused and frustrated. My family is blessed to be together on this road, but we are weary. Steve is weary. His body is used up and his spirit is struggling to stay comfortable in such ill-fitting skin. It’s almost like the inner Steve is growing as rapidly as the outer man is failing and like a baby outgrows the womb, the real Steve is ready to breathe the fresh air of real life. The process is the most beautiful and brutal thing I’ve ever witnessed.
This photo will always be precious to me because I know when it was taken. I know those smiles are as real as the tears that fell just moments earlier. I know that dancing happened immediately after. This picture is for me, a little preview of heaven.
We talk often and openly of heaven. In fact, we talk about it in ways that might make other people uncomfortable, but heaven is not a cheap consolation prize to us – it’s the best case scenario. We talk about the people he can’t wait to see (his dad, my grandpa, Wendell Smith). I talk about what the libraries must be like and how it must look right now, all decorated for Christmas, and he talks about the golf courses. Yesterday, as I was pouring yet another carton of vanilla formula through his feeding tube and realizing it’s been nearly 10 months since he’s tasted any food, we talked about how fun it will be to get breakfast in heaven. We are not afraid of heaven.
Our home is almost constantly filled with people. Hospice nurses, health aides, social workers. The caregivers who work for us and take such amazing care of Steve so that I have some breaks. Friends and family coming to say deep words. People dropping off dinners and groceries and flowers. I look forward to the day when my house is quiet and private again and I can be the one taking the casseroles and flowers to people I love, but until then I know for certain that we would be lost without this unbroken stream of support and sympathy. Just so lost.
Our kids are exactly as you might imagine. Tired. Heartbroken. Hopeful. Strong. They surround their dad like sentinels, marching as far and as long with him on this road through the Shadowlands as they can, knowing the path will eventually narrow and there will only be room for one. Until then, we march. And we write. And take photos. And say the words we need to say to honor the life of the man we love the most.
If you’ve read this far, you might be thinking, “She’s processing all of this so well.” False. I have never felt more weak, more inadequate or more overwhelmed. Steve’s needs are immense. The more care he needs, the fewer people there are who are able to give it. And though we are surrounded by such a brilliant army on this battlefield, I realize that everyone can opt in and out of the fight except for me. I don’t want to opt out, but there are moments when I am certain I will break beneath the weight of responsibility and the sorrow always bubbling like a pot of stew on the back burner. I am learning both how strong and how weak I am. I am learning to receive help from those who can give it and make no apologies for the fact that I need it. I am learning to listen to the voices of those who have gone before me on this road without being defined or confined by them. I am learning, now more than ever, to lean hard on the grace of Jesus.
So, that’s a little update from our world. I hope it breathes hope, because we really do feel that so much of the time. And the fact that we feel it any of the time during this fierce fight is nothing less than a Christmas miracle. Jesus, Emmanuel, came to our sad and broken world to bring endless, eternal hope. This is why our weary world rejoices. This is why we’re still able to dance in the kitchen. His love brings comfort and joy, and we are drinking it in this season and always.
Oh, how we love you,
Bo for Team Stern
We are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. 2 Corinthians 4:9
Life is funny, you know? It’s funny in ways that make me laugh and cry and hope and hurt. It’s just funny. For several Christmases we have navigated the murky waters of this ALS storm. We have been treading water as we try to absorb the beautiful moments while anticipating a difficult future.
This year is different. This year, the difficult future has invaded our present. Steve’s condition has rapidly declined over the past couple of weeks and he will be placed on hospice this week. We are grateful for the resources and support hospice provides. We are grateful for our kids and our friends and our home (which currently feels more hospital than house.) We really are grateful, but we are also weary and heartbroken. And while I’ve sometimes been able to wrap those emotions into hopeful words, right now I feel surrounded by a sacred sort of silence. It’s not bad. It’s just quiet here in my heart, where so many memories and dreams are swirling.
I am taking a leave of absence from my job for the month of December, so I can focus on Steve and my family during this important holiday season. I will write when I feel it and I won’t when I don’t. Today, I don’t. But I do have something wonderful for you and it is this update from my friend, Michaela. Remember her baby, Florence, who is Steve’s comrade on the neuromuscular disease battlefield? Well, Michaela’s baby, Teddy (Theodore Brave!), is here and you should read this for a beautiful start to advent.
I hope your season is unfolding with grace and I am thankful for so many of the notes I’ve received to let me know you haven’t forgotten us and are still praying. We do not sorrow as those without hope. Especially at Christmas.
Because of Jesus,
Stephenie is my amazing assistant and friend. Today she’s getting married to her very own Steven.
This is the day that youth pastors live for. We live for those rare moments when we watch God’s purpose stretch beyond the realm of potential and actually become reality. This day is possible because you said yes to His purposes before you could see them or feel them. I’ve seen you wait and pray and plan and build. I’ve seen you frustrated and lonely and faithful. You’ve walked this season well and today? We celebrate!
I know you, more than most, understand the truth about what a wedding is and isn’t. We’re not celebrating because this is the first day of a perfect life or because marriage somehow makes a person more worthy. We celebrate because love – strong, sturdy love – is the stuff of God. Real love defies the gravity of humanity’s sin and self-focus; it will be pressed by those things, but it doesn’t sink with them. In a culture of flash-in-the-pan success and one-night-stand romance, real love hunkers down for the long haul. It understands that the wedding is pretty but the lifetime is where all the power lies. Real love multiplies our ability to care and give and serve. And when wispy, human love digs deep roots into the limitless love of God, that’s when we become both bigger and smaller than we ever dreamed we could be. That’s when we discover that better and worse and richer and poorer and sickness and health are two sides of the same coin – a coin God can use to make us rich, no matter which face is showing. We find that our hearts are expanded beyond the breaking point and into the breakthrough point. It doesn’t take long to realize that marriage is the laboratory where God does His best work on us, in us and through us…and also that sleeping together is just way better than sleeping alone.
Steve and I love you and Steven more than we could ever say and we wish you both the most amazing day and remarkable life. May the beauty that brought you to this moment lead you every step forward.
Because of the One Who Loves and Loves and Loves,
This morning my Facebook newsfeed was filled with updates from people going through such difficult, heartbreaking situations. I spent thirty minutes, writing, rewriting, adjusting and writing again. It was very difficult to think of the appropriate thing to say to my friend who is fighting brain cancer or my friend whose child is in constant pain or my friend who just lost her beloved father to ALS.
I’m so frustrated by this because I really thought that one of the few benefits of our crisis would be knowing what to say to others in theirs. But I find myself at a loss so often. That’s when I land in the write-and-erase gridlock which leads to paralysis which leads to no response at all. It’s ironic really, that some sweet sister fighting a fierce battle may be sitting at home thinking none of her friends care enough to respond when, in fact, many of them care too much to risk a wrong response. I’m sure many people who assumed I hadn’t thought at all about their struggle, would be surprised to learn how much I thought and agonized before clicking out of that little box without pushing “post.”
I’m sharing this today so that others will know they’re not alone in this fear of saying the wrong thing at the wrong time. I am a writer and I often feel like I’m in the word weeds. But I’m tired of letting fear silence my compassion, and so I’m learning. I really hope I’m learning. And while I don’t have an easy formula, here are the guidelines I’m using when responding to people in pain:
1. The closer you are to the person and the situation, the more latitude you have to speak freely. If you are not a close, personal friend of the one in crisis, keep your comments brief and encouraging. Don’t offer advice unless it’s specifically been requested. If you feel you have something important to share like a miracle cure or medical advice or a specialist they should contact, try going through someone who is closer to the person than you are, or send a private message. (And when you offer advice, always add permission for them to contact you for more information OR to disregard the suggestion entirely.)
2. Avoid comparing your situation to theirs, even if your situations seem identical on paper. Honestly, I think it’s wise to avoid talking about ourselves at all in these moments…just focus on encouraging the other person.
3. I don’t think you can go wrong with, “I cannot imagine what you are going through. I am so sorry.”
4. Say something. Because I really do think an imperfect something is better than well-intended nothing. People put stuff out on social media because – well, I guess I don’t know all the reasons people do anything – but I assume they put updates out there because they want to know they’re not alone. They hope that people will care and pray. That’s all we need to do: care, pray & love. We don’t need to have all the answers or write the words that heal all their wounds. The comments we say and send to people are, more than anything, a way of telling them: I see you, I acknowledge your pain, and I’m here. We just need to be present. And we can all do that, even though the words we wrap around it may feel risky and awkward – we can all be present.
I think one of the most dangerous consequences of any fierce fight, is the way it shrinks our vision to primarily the soil of our own battlefield. Sometimes I feel that if I’m not careful, I’ll get stuck inside an ALS bucket, where our issues are the issues. It’s like living inside your own, personal 24-hour news cycle and all the stories are about medical stuff and caregiving stuff and insurance stuff and sorrow stuff. And it can happen with any fight we face. I’ve known people who can’t last six sentences in conversation without mentioning the ex spouse who did them wrong. I totally get why this happens, but I firmly believe I need to work to get rid of the dumb bucket rather than justifying its existence.
This is a challenge in blogging. Writing helps me process what I’m experiencing and connect some of the emotional dots. It also creates camaraderie between those going through similar situations. I don’t think writing about our war is wrong; I just want to be so careful that I don’t become confined or defined by it. While people often tell me that what they’re going through is nothing compared to what we’re going through – I actively and aggressively resist that idea. The minute I begin thinking that I’ve drawn the worst hand available, I am just one short hop away from life in that bucket, where I am all that matters. And…ew.
This morning, I read an article about the girls who were abducted in Nigeria. And I read this strong piece from Sarah Bessey about the issue of sexualized violence. Then I read a letter from the child we sponsor in Indonesia so she can attend school, and had so much fun writing her back and sending her some Christmas money. My coffee money for one week is her Christmas. Her entire Christmas. I mean, l this is a child – a real child with hopes and dreams and gifts an fears – who cannot attend school without the help of strangers. These are global issues. Moral issues. Issues embedded into the fabric of our society that rampage and ravage tender hearts and innocent lives. We cannot support every cause or defend every victim, but I cannot live in a world where the only victim is me. My life is hard, yes. I’ve written about a million words on the nature of a villain like ALS, and I’ll write more. But as I’ve also been processing burnout, I’m seeing that one of the best ways to stay clearheaded in crisis is to realize there’s a world beyond your war.
I cannot escape the battlefield of ALS. It is the ground on which I live and fight. But I will resist until my dying breath the natural tendency to build walls around my battlefield, that shut up our hearts and our compassion and our righteous outrage toward social injustices on the global stage. This is not just right, it’s good. It’s good for my heart and my outlook. It’s good for my family and our army. It’s good for my future and it’s good for the world that God so loves.
Feeling stuck in a bucket today? Push your vision out beyond your playing field and gain some quick perspective. And then do something. Pray, send money, send a note, send hope. Make a move in someone else’s war and see how it changes the landscape of your own.