I can tell it’s been too long since I updated on Steve because I’m getting lots of questions about that handsome guy. And I feel sorry for the people who ask me because my answer is usually a bit of a mixed bag of tricks and I’m sure it’s hard to know how to respond, so today I’m bringing the answers to the blog where you can read and process without having to figure out what to say back to me (though you’re always welcome to talk back in the comments!)
Steve has had a tough time bouncing back following his feeding tube surgery in March. While we’re so grateful – so, so grateful – that we went through with the procedure, it’s definitely taken a toll on his already-weak body. This decline could be part of the natural progression of the disease, but it feels at least somewhat related to the surgery. He is able to walk a few steps on his own, but uses a wheelchair for everything beyond that. He has increased his time using his breathing machine so his lungs can have a break. Leaving the house for any length of time is very draining and demanding – church is about the only thing that he tries to get out for, but that’s become a little hit and miss as well. He needs help with most things that you and I are able to easily do on our own. I do most of the helping and feeding, though we have a caregiver on Wednesdays and a dear friend who comes twice a week to feed him lunch so I can focus on work for those days (thank you, sweet Corlet! We love you!) He’s still talking, though I know he has to work very hard to be understood and I hate making him repeat things. As I watch the disease progress, all I can really say is: it’s a monster. It dismantles a person piece-by-piece and when you think it’s taken everything, it keeps grabbing for more. It’s relentless. But it’s also not winning. Because good things are happening, too.
We are happy. We really are. I don’t even quite know how to explain it, but there is a grace on this season of our lives that I never could have imagined going into it. We spend lots of time at home. All our time, really, and that’s a brand new idea for us since we’ve always kept really busy. We laugh a lot. We know who we are and why we’re here. We know who we’re not. We watch Love it or List it and make fun of Canada. Life is good and I really mean that. It’s good in the strangest way because I want to call it “effortless” even though I’m not even kidding that I’ve never worked harder in my whole life. Still…the happy part is not hard. It’s not like we have to work it up or remind each other to cheer up – the things we love are right at the front of the stage and it’s not hard to remember to be thankful. In the beginning of the diagnosis, we each went through dark days and low seasons when we would tend to get snappy with each other and frustrated with life in general. I think that’s pretty normal, given the battle we’re fighting. However, I honestly can’t remember our last day like that. And hear this well: this isn’t us. This is grace. We aren’t strong or smart enough to pull this off. I wish we were, because then I could write a book about how to be happy in hard times and people would think I’ve figured something out. But no. Do NOT be inspired by us – be impressed with Jesus. He is filling the aching places with His presence and I just know it. We have rough days and you’ll still hear about them here on the blog sometimes, but overall we are happy and more in love than we have ever been and I can only blame grace.
Are strong. They really are doing very well and I appreciate so many people asking about them and praying for them. Josiah just graduated middle school, Tessie is currently in Africa, Tori is a huge help to us here at home, Corey & Whitney are absolute ROCKS for us and Greyson lights everything up with so much joy and his over-the-top love for his grandpa (when he sees me without Steve, his very first question is “Where Papa go?” Cutest. Thing. Ever.)
Is quiet. For Father’s Day, we made a lovely space for Steve outside with a fire pit and chairs, outdoor speakers and lighting and flower pots (he loves big flower pots and has always been the one to keep them watered and growing, so we’ll see how this goes). It’s a place he can sit in the sun and have friends over to visit. It’s a place where we make s’mores and share hearts and build dreams. We’ll spend a lot of time there this summer. We’re also working on a new book, he and I, and every time I talk about it I want to cry because it feels very sacred to me. I’ll tell you more about it when it’s further developed, but for now, we’re loving the conversations as he talks and I type his thoughts into words. I have taken three out-of-town speaking gigs this summer and turned down everything else. These 24-hour excursions have given me the chance to get away for a quick road trip, have a little alone time and jump on a hotel room bed with no one there to judge me. Perfect. I also have a new book coming out from Thomas Nelson in October and I’m writing some promo stuff for that and preparing for another round of book-PR this fall.
Is that we have many more summers together around the fire and under the stars. But none of us know what’s around the next corner, do we? So we’re living this one well and we’re giving ourselves permission to be happy. Our hope is also that a watching world would see evidence of a beautiful God and that as they see His good work, they would not fear the next corner. That’s our hope and our update and we love you. So much.
Bo for Team Stern
I’m about to wreak havoc with the rules of blogging. Especially the one that says, “stay in your niche”. That’s right. My turn signal is on, and I am alerting everyone in this section of the information super highway that I am detouring out of my cul de sac for a day or so. The reasons? 1. I’m not entirely certain what my niche even is, and 2. I want to.
I recently spoke to a group of 800 women on a topic I’ve never tackled before: shame. As I spoke, I felt goose bumpy with the certainty that it was landing in the hearts of those sweet women. Shame is a thing with us, you know? I don’t think I’ve ever gotten so much tearful feedback after any message. Im sure men deal with shame as well, but I think it’s uniquely debilitating for women. I shared five areas where I feel we need to shatter shame in our lives (you can hear the message in the media archives from February at www.westsidechurch.org) but the one that has been most significant for me in the past few years is appearance.
We live in a culture obsessed – and I do not use that word lightly- with appearance. Specifically, size and shape. Maintaining my weight was very easy for me for forty years. After that, it got more difficult and I was consumed with career and family and didn’t pay enough attention as unwanted lbs were finding a home on my person. I mean, I knew it was happening but I didn’t think it would be a problem to lose them (clearly the mindset of someone who hadn’t ever had to before). In the three years after Steve’s diagnosis, I put on another ten pounds without even really realizing. I was mostly thankful that my weight gain coincided with the flowy shirt trend.
As Steve’s condition declined, I realized how out of shape I was and it began to wear on me. I knew my family needed a healthy mom more than ever, but adding a fitness routine into a life that already seemed too hard and too busy seemed impossible. The problem, though, is that I couldn’t ignore it. My weight and unhealthy lifestyle became an area of shame that wrapped around my heart like a tourniquet, cutting off the flow of a healthy self image. I researched gazillions of diets and fitness plans, even considering some very extreme and unhealthy options “just to drop the weight – then I’ll maintain it through good habits.” No matter how much I planned or how strong my intentions were, I was absolutely paralyzed. I couldn’t even make myself get out a take a walk (something I’ve always loved.) And the more stuck I became, the more obsessed I became about my body. I hated the way I looked and compared myself to other women at Starbucks and wished I could find a magic pill to erase the eight years of doing nothing so I could feel good about myself again.
And here’s an embarrassing confession: I often watched videos of myself speaking, hoping I didn’t look as overweight as I felt. I was always disappointed and felt like a failure again but no amount of self-loathing could get me to move.
My breakthrough moment came in the strangest way. I don’t remember what led to it, but one day in my devotions, I asked God an important question: what’s stopping me? Why can’t I do this? The answer was clear and immediate: fear and shame. I really haven’t dealt with a lot of shame in my life, so I had to start figuring out what it was and where it came from. Because, doesn’t it seem like shame should motivate change? It seemed that way to me, but it was clearly doing the opposite in my life. (And I get that many people struggle with much greater levels of weight and that my problem may seem insignificant to those who have fought the weight loss battle their whole lives, but my point here is:shame weighs the same on all of us.)
My realization was this: I have never once laid awake at night, thinking about a friend who is struggling with weight like, “how could she let herself get there? Doesn’t she know how her clear lack of discipline is impacting her credibility as a speaker and a believer and a human?” I mean, I never would think that about anyone else because I don’t see my friends as just bodies with no souls. I see my friends as talent and character and goodness and strength – wrapped up in a temporary flesh-and-blood container.
When a man uses pornography, he separates the woman’s appearance out from all the things that make her her. He feasts on one part and discards the rest like yesterday’s trash. It’s called objectification and I hate it. But I was doing the very same thing to myself. Focusing on one part as the main thing – even dressing that obsession up in some virtuous language, but still caught in a shame cycle that felt endless. Suddenly, the lights were going on inside my brain: I realized I was afraid to start trying to get fit because I was afraid I would fail. And thinking there was no way out was easier than thinking “I can fix this any time I want – I just don’t want to yet.” The key for breaking the spin was this big, big idea: I am loved either way, so I can’t fail.
Seriously, that’s the simple truth that set me free to begin a journey toward what I believe is my best level of physical health and strength in my whole life: I’m loved either way.
Once I disconnected the idea of getting healthy and strong from the idea of getting skinny, everything changed. Shame had no more strings to pull. Love is always, always a better motivator. Always. So I let love for my family and for Jesus and their love for me become the focal point of my fitness goals. I switched my diet to primarily Paleo, downloaded the Nike Training Club app and I was on my way. Six months later, I’ve discovered a part of me that I never knew existed. I love trail running. I love setting goals and beating them. I love feeling strong enough for the challenges ahead. I also lost the weight, but that is an outcome, not the goal (I banned myself from the scales for the first two months – and now I only weigh myself every couple of weeks because otherwise, I feel the subtle shifting of my focus and I hate it. Shame lurks behind those dumb numbers on the scale.)
I wanted to tackle this topic on the blog because I feel passionate about women feeling loved and whole. Many have asked me recently what I’ve done to lose weight and it’s important to me that they know this all started with a heart change. Sometimes we underestimate how much change a spiritual adjustment can have on our physical bodies, but I like to think I’m living proof of that. I do recommend healthy eating. I do recommend working out. Those two things offer so many physical and emotional benefits. But we can diet and exercise til our bodies are tiny and tired, and still feel inadequate and unloved and ashamed. And an obsession with being skinny is no healthier than an obsession with being overweight. We cant make it through the grocery aisle without being bombarded by younger, more beautiful, more fit women and comparison always breeds shame, unless we’ve done the core work first. Spiritual Pilates: “I am loved at any size and any shape, I am the right age at the right time, I am not a failure because I’ve grown older. I am the right me.” Once that powerful mindset is in place, I believe just about anything is possible.
You are loved,
PS: I have a pinterest board of some of my favorite things that have helped make the journey to better fitness a wonderful one – it’s called Strong is the New Skinny and you can access it by clicking the Pinterest button up in the right corner,
I am discovering the power of one little word. It’s a conjunction and if like me, you were raised on a steady diet of Schoolhouse Rock, you will now have that song stuck in your head indefinitely. Sorry about that. But you’ll also remember that a conjunction is the little word that connects two phrases or thoughts and makes them one. However is unique In that it usually joins two opposing ideas. When we see however in a sentence – and certainly when I see it in my life – it signals a change or a turn. Is the change good or bad? I think that depends on which side of the conjunction we choose to set up camp.
It may seem odd, but so much of my peace, joy and sanity in life right now hinges on how I view the howevers I face. Last week’s vacation is a great example.
We were able to get away to our favorite spot on the Oregon coast, however the wheelchair van broke down on the way home.
True story. Accurate sentence. But what actually happened is that it broke down just two miles out of town so we could go back easily. My brother-in-law was able to come with a trailer and pick it up. We had enough room in our other vehicles to get everyone home that day. The delay enabled us to spend a sweet afternoon with my sister, Lila, which also enabled Steve to rest before tackling the rest of the trip home. The however wasn’t a good one and I’m not pretending I’m glad for a car repair – but many good things found their way into the equation and all of us felt it. We felt grace on that whole however situation.
So the sentence is better written (and better lived):
Our wheelchair van broke down on the way back from vacation, however all the details worked out and we made it home just fine.
Here are others:
Our family had to deal with the reality of Steve’s condition while we were away, however we made the most beautiful memories and we all became stronger and grew closer through it.
It is very difficult navigating a wheelchair on a sandy beach, however it was the most we’ve laughed in a long, long time.
For so many years, I lived on the wrong side of the word. I squashed every happy with a sad. Eventually, that evolved into including even the possibility of sad. My schedule is good today, however something will probably go wrong at work. This constant slant toward the negative produces anxiety, frustration and, if left unchecked, bitterness. So much changed for me when I began to let Jesus steer me toward a new perspective.
It may sound like a fancy way of saying, “look on the bright side”, but it’s bigger than that. Though both sides of each situation are true, one side is the stronger truth because it’s redemptive truth.
My flesh and my heart may fail, however God is the strength of my life and my portion forever.
They took Him down and buried Him in a tomb, however God raised Jesus from the dead.
Do you see how redemption follows and swallows the despair in those sentences? Both sides are true, but they are not equal truth because – and this is the kicker – the despair is temporary and the rescue is permanent. Isn’t that the coolest thing? It is. Because sometimes in the darkest nights of life, finding the upside can feel like looking for the Mona Lisa at a garage sale. But when we can’t see a single speck of redemption, salvation enables us to push our vision out beyond the horizon of our timeline and peer into the promises of a world with no howevers.
My husband has ALS, however his life is hidden with Christ who stole death’s sting, bought Steve’s freedom and dries every tear.
That’s the right side of however for me. I’m trying to learn to live there.
P.S.: Portland friends: I’ll be in your lovely city this Sunday speaking at Horizon Church. I’d love to see you there at 8:15, 9:30 or 11:15!
I haven’t written much lately, which is sort of like not eating for me. Writing is my inhale/exhale. It’s my therapy, my sanity, my way of tunneling through the weights of life that inevitably pile up and block the light. I don’t know why I haven’t been writing, really. Likely reasons lurk in the back forty of my subconscious, the the loudest and most obvious being that I don’t really want to unpack all that’s happening and look it in the eyeballs.
For 39 months now, I’ve been connecting the dots and forcing myself to come to healthy conclusions, and I think maybe I’m as adjusted to this new normal as Im ever going to be. And by adjusted, I mean I can stay upright and functional while desperately longing for the old normal. I don’t know if deeper levels of “acceptance” are possible and I would probably question the credibility of any counselor who tried to suggest otherwise.
We, my husband, my family and I, are living in this weird, mostly-silent coexistence with ALS, which is a little like trying to do your grocery shopping while handcuffed to a serial killer. As long as he doesn’t impede your immediate progress, you’re just glad to be able to get something marked off the to do list. It’s not impossible, but it’s also sort of exhausting, and there is literally no moment when you don’t fondly remember the sweet, unshackled life you once lived.
We’ve come to the Oregon coast this week; running for refuge to the place we’ve vacationed for years. The shoreline of the pacific ocean is vast and largely unknown to us, but this stretch of it is our sand and these are our waves. We’ve travelled every inch of this tiny hamlet, eaten at every restaurant, and over time watched bookstores become wine shops become art galleries become bait and tackle shops and back to bookstores again. Oregon coastal towns are not hip or fancy, but this one fits us like a glove. We needed to bring Steve here. We needed to be here together again…to feel the sand in our toes and the wind in our hair and to maybe for a minute fill our lungs with the fresh air of life-as-it-once-was.
And we have. We have come and we have had some beautifully refreshing moments, but also some so poignant and painful I’m not even sure I have a compartment to put them in. More than any other time, I have had to fight to stay in the present, corralling my fears about the future and questions about vacations to come into a fenced-off place in my heart where they won’t run roughshod over the here-and-now. This is harder than it’s ever been because the future is closer than it’s ever been.
But we are here and this is now. Today, we live. And we trust the God who guards our days to fill each one with hope. Because hope does not disappoint. It is a daily, sometimes hourly, decision for me to say, “into Your hands I commit my hope and heart and husband. Into Your hands, I even commit these handcuffs, and I won’t use them as a reason to stop living or dreaming or loving well.”
That’s what I’m learning on my pre-summer vacation.
I’ve been studying a message on being wholehearted and it has me thinking about my own core values and how wholeheartedly I live them. Here’s my problem, though:
- I long to see the world; and I long for the comforts of home.
- I long for greater levels of organization and planning in my life; and I long for spontaneity and creative chaos.
- I long to write books; and I long for life with no deadlines.
- I long for a spotless house; and I long to binge watch The Good Wife.
- I long for credibility and I long for anonymity.
- I long to slim down and I long to carb up.
- I long to work hard and spend my last breath telling the story of those affected by ALS and I long to never say those three dumb letters again.
I am a murky stew of dueling desires. And the older I get, the more I suspect that in the end, the way we feed or deny the longings in our lives will make all the difference in the mark we leave on our world and the happiness we enjoying while leaving it.
But it’s hard. It’s hard to know what deserves my focus at any given time. I have a grid I like to run things through and it’s this: Am I doing the right thing at the right time for the right reason? It tends to weed out a lot of silliness for me, but it’s only a grid – a tool for helping decide how to invest the minutes in my day. It’s still up to me to choose and choosing requires muscle and discipline and a level of grownupness I don’t think I’ve yet attained. Maybe I never will. Because this idea about being wholehearted is big and it defies common logic or dispassionate maturity. I’m discovering that sometimes, believe it or not, a little time in the world of The Good Wife is the very thing that fuels me to go back to my life as an ALS wife. Traveling the world is sweet because it reminds me home is sweeter. A well-placed carb helps fuel a River Trail run and the River Trail run inspires creative thinking that leads to more-organized systems.
The thing is, this minute-by-minute decision-making about right things and right reasons? It’s not a science. And it’s not even theology. It’s a messy, mixed-up art. It’s finger-painting for grownups. It’s starts with the question, “At the end of my life, how do I want my picture to look?” Then we go about the business of sticking chubby fingers into puddles of color, letting a design take shape that may or may not, but probably, definitely won’t look exactly like our beginning vision. Sometimes it turns out differently because our fingers can only do what fingers can do, sometimes life dumps a color onto the page we weren’t expecting and we have to choose whether we crumple the picture or ask the Great Artist of Romans 8:28 to incorporate that spill into the grand design. It’s hard. It’s work. It’s fun. It’s life.
The conclusion of the matter is this: if there’s one area in which I want to be truly, deeply wholehearted, it’s in trusting God with the minutes and months and miracles that fill the page and staying closely connected to His voice as He lets me pretend to be an artist too. He makes everything beautiful.