“Hey sweet friends – could you do happy hour today? I have a big favor to ask.”
I remember the very day I sent the text. I don’t know why it was so hard to do, but it was SO hard to do. Very quickly, Deanna and Gretchen each responded with such happy yes’s that I felt better about the conversation that would take place at my favorite restaurant with my two wonderful friends who I felt were so perfect for the task ahead.
Quick backstory: Two years or so ago, because of changes in Steve’s condition and the need to accommodate a lot of machinery nearby, we moved him into a hospital-type bed in our bedroom and I had a little bed beside him. After sleeping together for almost thirty years, that was a really hard day. But I took solace in the fact that he was still at home and not in a facility and that we were still together, even though our room was nothing like it had ever been. The more ALS took over Steve’s body, the more it took over our room. I eventually moved many of my things to the guest room as closets and dresser drawers began to overflow with medical supplies.
In December, we called in hospice and I knew the end was approaching quickly. That’s when I started thinking about what life would be like without him. There are a myriad of things you cannot know and cannot prepare for ahead of time, but the one thing that kept haunting me was the idea of the Very First Night. No matter how hard I tried, I could not imagine sleeping in our room with Steve’s bed empty. I also couldn’t imagine moving all his stuff out myself. It all just seemed so painful and impossible. That’s when I remembered something I had learned along the ALS road: Fix what you can fix and leave the rest alone. This, I reasoned, was something I could fix. And that brings us to my text to D & G.
They met me for happy hour on a gray spring day and I told them of my fear. And then I made my big ask. They listened and, tears streaming, said, “Absolutely. We can do this.”
On the day Steve died, Whitney made a few important calls and one of them was to Deanna and Gretchen. That phone call launched Operation De-hospitalize Bo’s Bedroom. As I sat and visited with my family and our pastors, my friends arrived and quietly – almost invisibly – began creating a beautiful space for me. I had already purchased a bed which had been waiting in storage and my friends had chosen everything else: sheets, comforter, pretty pillows and throws, a cushy reading chair, fresh flowers in vases, new towels in the bathroom (it was important for me to choose friends whose taste and style I trusted.) They worked a long time, cleaning, decorating, ministering through their gifts. When it was ready, they came and got me and I…gosh, I’m not often without words, but I’m not sure what word to use for what I felt. I looked at that beautiful spa-like retreat and I was overwhelmed by the goodness of God to me through the hands of my friends. I felt peace. I felt security. I felt like maybe creating a life on the other side of ALS was an actual possibility.
27 days later, I can say that every time I go into my bedroom – I mean every single time – I am amazed that I get to live there. It is a haven for me in a difficult world. And it is something that is my very own and I like that. The room that had represented the “us” of Steve and I went away a long time ago, there was nothing I wanted to preserve from the ALS season, so this very fresh, very new start has been one of the most life-giving things anyone has ever done for me.
If you are a friend wondering how to help someone who is in a similar situation, please feel free to send them this post and say: If this is something you’d like to happen, I will help in whatever way I can. If you are someone who is facing the loss of a spouse, feel free to send this post to a friend or two and say: If I give you the money, would you be willing to take this on for me? OR, if you’re more concerned about making the choices yourself, you could buy the things you’ll want and ask a friend to store them for you until the time is right and then with one phone call, they could come in and make all the changes so you don’t have to (I know you hate to ask. I know you feel like you’ve already used up all your favors. I know you’re so tired of being the person who needs help that you’d love to just grit your way through something as personal as this, but please trust me – your friends would love to do this for you.)
I know it’s super weird to put pictures of my bedroom on the internet – but, hey – I’m a renegade like that and these are terrible cell phone pics so it’s almost like not really seeing it at all. Here you go:
Listen, the one thing I know for sure is that I don’t speak for everyone going through sorrow. I don’t even speak for anyone except me – grief is so subjective. Some people may be yelling at their computer right now, “I could never do that! I could never let someone take over such a personal task.” I get it and I respect it. But I do think there are those who have been through a long, hard battle with a sick spouse and they would love to have a fresh, clean space to call their own but are unwilling to ask or maybe even unable to pay for it after all the other luxuries they’ve purchased like medicine and doctor bills and such. My dearest dream is that this post would be a head’s up to the armies of friends out there about creative ways to give hurting people hope on the hard days. Do with it what you will.
With heaps of freshly remodeled hope,
It’s been two dozen days since Steve flew away home. Since then we’ve had a memorial, a graveside service, escaped to the beach for a week, and returned to the land that we love. Here’s what I’ve learned so far.
- I’ve never felt as much pressure to make something beautiful and right as I did Steve’s memorial service. I wanted so badly to celebrate his life well. Somewhere in the mix of planning and stressing I realized I was feeling it was my last chance to honor Steve and it occurred to me how silly that was. We will always remember and celebrate Steve. Our lives are a reflection of him and in actuality, the days and generations ahead will be a much more authentic retelling of the story of Steve than one service in a church could ever be.
- Having said that, I loved his memorial service. The music, the people who shared, the pictures of his life. All of it was beautiful and meaningful for me. I didn’t expect to love it because it is, at the heart, a really sad event – but I did love it and last night I worked up the courage to watch it for the first time and I felt so close to Steve and to the people who loved him like I did.
- Grief is physical. It’s emotional,too, but I had no idea it would wreak such havoc on my body. For me, this has manifested in the form of fairly relentless migraines and just generally feeling sort of flu-ish. I think the clinical term for what I’m feeling is “cruddy” (I actually think it’s call the Lethargy of Grief, but tomato, tomahto, you know?) I read parts of A Grief Observed while we were on our beach getaway and CS Lewis describes it as “feeling concussed,or in a slight state of drunkenness” and I would agree except a slight state of drunkenness sounds way more pleasant than the headaches I’ve been wrestling with. I ended up seeing a doctor in Portland about the whole thing and as of today, I think we’ve got it solved, but it was honestly one of the more frustrating issues to deal with immediately after losing Steve. (Also worth noting: I’m loaded up with lots of helpful remedies including essential oils so no need to email me about that. )
- Our time away at the beach was…rough. We were sad, several of us were sick and all I can really say is that nothing worked much like we had hoped. However, at the end of it all we decided we would be glad to leave that week and some of our sadness behind and return to the safety of home. Sometimes what you think will be a refuge becomes a dumping ground instead and that’s okay too. I still believe we’re better for having gone, and we look forward to happier trips in the future.
- My goal in the weeks following Steve’s death was to try to process the past four years and build some sort of plan for my future. I am, by nature, a rational thinker, so I reasoned I would be able to figure this thing out. But when I arrived at the doorstep of that pursuit, I really didn’t know where to start. Make myself cry? Not cry? Sink into sorrow? Sink into memories? Look on the bright side? I was like a cross-eyed archer just wildly shooting arrows, hoping one would hit something that should be hit and not something that shouldn’t. I turned to a few books and found some helpful ideas and some not-so-helpful ideas and my takeaway is that, much like falling in love, grief is wildly subjective. We all go into it carrying a different suitcase full of emotional triggers and layers of history that create the lens through which we see our journey of sorrow. I’m just now beginning to figure out what works for me and I wouldn’t dream of giving advice to anyone else except for this: be gentle and generous with yourself.
- I had four years to get used to the idea of losing Steve, but I look back on the moments and days following his death and see clear evidence of shock. For instance, two days after he died, I sat down and wrote this post, detailing his last day on earth. I cried while I wrote it, but it wasn’t difficult for me – it was cathartic. Just a few days later, however, I find I’m unable to go back and read it without the adrenaline and anesthesia of shock that was numbing my heart in that first week. I joked to my sister recently, “I think I like shock. What I hate is when the shock wears off.”
- Sorrow really does come in waves. I’ve read it a million times, but now I’ve lived it about a hundred times. It builds and bubbles and then hits full-force and just when I think I’ll drown in it, it begins to recede. I don’t know if it’s true for everyone, but for me the wave runs its course in about twenty minutes. It’s not that I feel happy in twenty minutes, but I do feel like I can breathe and think clearly. Knowing how the cycle works for me (at least at this moment) has helped me know what I can control and make peace with (or get help with) what I can’t. I’m infinitely grateful to the people who kept their cell phones on 24/7 and took my desperate phone calls when I felt I couldn’t surf the wave on my own. Infinitely grateful.
- People are amazing. I mean, really and truly amazing. I would tell you some of the creative, intentional ways they cared for us during this season, but I’m going to save that for another post. I have, however, been taking copious notes so that I can remember the brilliant ways we’ve been loved and served so that I can do the same thing for others when they travel through the shadowlands.
I know this is the most random post ever, but that’s how I’m thinking right now and I can’t seem to jolt myself out of it. In conclusion, I want to say that I am well. I feel secure and loved. My memories of my life with Steve are a warm blanket around my heart, rather than a painful reminder of what I’ve lost and that’s a relief to me because I wasn’t sure which direction that would go. Our home feels safe and peaceful and it’s really strange to be able to come and go as I please. Not bad strange and not good strange, just strange. I am taking a month or so off of work and I can already tell I’ll be really ready to get back into the swing of things. My kids are also well and I am so proud of them.
So, that’s the update. Thank you for caring, loving, calling, texting, facebooking and just generally being the most awesome army in the history of war. I love you.
Steve Stern was born in Detroit, Michigan on April 22, 1962, into a family of great faith and global reach. Before his first birthday, he was on a plane headed for Abraka, Nigeria, where he would spend the formative years of his childhood. Steve loved his life in Africa and would later relish telling his children stories of strange pets, swimming in rivers on hot days and living through the Biafran war. His family moved back to Detroit in 1970 and eventually on to Danville, Illinois, where Steve attended Danville High School graduating in 1980. In 1981 he packed up his Saab and moved to Portland, Oregon to attend Portland Bible College. There he met and married his wife, Bo. They honeymooned in Central Oregon and quickly began dreaming of the day they might make a life there. That day came in 1995 and Bend, Oregon has been home ever since.
Steve had many brilliant achievements in his life. He was a great golfer and businessman, a successful pastor – but he always believed that his best accomplishment was his family. He was unspeakably proud of Corey and Whitney Parnell, Victoria, Tess and Josiah Stern and he loved being Papa to his grandsons, Greyson and Phineas.
In 2011, Steve was diagnosed with Amytrophic Lateral Sclerosis. That’s when he became a hero. He battled the treacherous disease with bravery, humor and determination. He stayed fiercely in love with God and committed to being a faithful and loyal friend, dad and husband, even in the midst of his suffering. He used all his minutes and muscles on the people he loved most and continued to develop new, important relationships up until his last breath on July 18, 2015.
Steve is survived by his wife and children, his mother, Eleanor Stern, one sister, Susan David and brothers Philip and Jonathan Stern. He was greatly anticipating the prospect of heaven – especially seeing his dad, Paul Stern, who preceded him in death.
The impact of Steve Stern’s life, faith and love cannot be contained by words on a page, but it is reflected in his family and the many who were blessed to call him friend. His19,445 days on this earth were a gift that he opened and lived out with joy.
A celebration of life will be held on July 24th at 1:00 at Westside Church. In lieu of flowers, the family suggests donations to help with medical and funeral expenses.
Our goodbye had been coming so long. In fact, it seemed we had already said it so many times and in so many ways. With tears and words and recently, as words became more and more difficult for you, with raised eyebrows and tiny hand movements. Our language was second nature to us and so much of our communication revolved around this impending goodbye – but I was still surprised when it really, finally came.
The week had been a constant struggle to keep your oxygen levels up. The caregivers and I would check your pulse ox a million times each day, exchanging high fives with any number in the 90’s and worried glances when it dipped to dangerous levels. The shrill start-up alarm on the O2 machine became a comfort to me, knowing it was doing its job, helping you breathe, keeping you here. We tried – Crystal, Holly and I – to keep the concern out of our voices, but I know you knew. You’ve always known everything before I knew it.
On Friday night, we pulled the couches and cushy chairs into the room so we could be with you. We watched Hitch, because we needed an easy laugh. During the movie, you were awake, asleep, awake, asleep, until finally you asked to be taken to bed. Joe helped me transfer your fragile, failing body out of your chair and into bed. You asked me to adjust your head once or twice and I waited for more instructions because, let’s be honest, there were always more instructions. You, sweet man, are wonderful and kind , but you are a very, very particular patient and we both know I never got out of the night-time routine with less than eight head adjustments. So I waited. But you said nothing. I asked, “Are you good now, hon?” Nothing. “Do you need anything?” Nothing. I stroked your cheek and rubbed your arm, “Do you want me to read you a Psalm?” No response. So I asked Joe to bring me a chair and I sat by your bed and prayed and thought and read and slept off and on. I don’t know what I thought might happen, but I knew I didn’t want to miss it, couldn’t miss it.
After a long time, I fell into my bed beside yours, so thankful we weren’t in a hospital. I was so glad to be near you and near our family, surrounded by the sights and sounds that have defined our life together.
On Saturday, you woke up early and Joe again helped with the transfer from bed to chair. You seemed awake and alert. You told me you loved me so many times and in so many ways as I moved around you to do the morning routine and I treasure each and every one of those, but I could also tell that you were miserable. Joe sat with you and visited (he’s a really great brother-in-law, isn’t he?) while I took a little time to read and write a blog post. Every time I checked on you, it seemed you were less aware. Less there. Holly was the caregiver for the day and she arrived at 10, but much of the morning work had already been done, so she said to you, “What do you need this morning, Steve?” Your eyes closed and opened, but no answer came out. I began asking you questions, but no response. You were there and breathing, but you were also somewhere else entirely. After a few minutes, you looked at me and I knew you were back. It was unsettling, but I still didn’t imagine you were two hours from heaven.
I had been struggling with a fierce headache all morning which I had begun to believe might be sinus-related, so I wanted to run to the store and grab something I could take for it. And I know, our house was filled with every possible medication, and yet…no sinus stuff. All week, you had wanted me to be near you and seemed panicky when I wasn’t, so I checked to make sure you were good with me going to the store. You nodded yes, eyes glassy and staring at the tv. “Who’s winning?” I asked, because you will always talk about golf and the British Open is one of your favorites (but choosing a favorite golf tournament for you is like choosing a favorite child). I asked again and you just shook your head and said, “I don’t know.” And it sounds crazy, but that’s when I knew we were closer than I had thought. Just like you knew you were really sick when your golf swing suffered, I knew you were really leaving me when golf no longer mattered.
I went to the store with my sister, but my heart was pounding the whole time. Heavy tension hung over us, so we moved fast and talked little. It wasn’t that I was afraid you would die while I was gone, mostly I was afraid you would need me.
We were home in a matter of minutes and I went straight to your chair to check on you. I put my hand on your hand and you looked up at me, trying to see through the cob webs of your impending transition and you mouthed your trademark line, “Hello, beautiful.” And by the way, thank you for that. Thank you for being so consistent with that for so long. You built something in me with that line. You built my belief system about who I am to you. Really, sir, so many thank yous.
Corey and Whitney had stopped by to visit and so I hugged the babies and sent Tori on a burger run. I was snuggling baby Finn when Holly yelled my name and her voice told me all I needed to know. I ran to you and knew. “How are you Steve?” I yelled at you and you just shook your head, gasping for air as the color drained from your skin. The pulse oximeter was attached to your finger and we watched as it dropped from 75 to 69 to 64 and down. And I could feel heaven arriving. It was pressing in on us as you struggled for breath and I struggled for breath and somewhere in my breaking heart I heard the words, “Help him home.” So I leaned in close and told you how proud we were of you. How you had fought so valiantly and well. I told you how brave and strong you were and how excited Jesus was to meet you and hold you and give you a good meal. I told you we would be fine, our kids would be strong and would stay soft. I didn’t tell you how desperately I would miss you because I didn’t want you to fight any harder or longer than you already had. I felt like a midwife. Soon, all the family surrounded me and began encouraging you, too. We prayed and stroked your hands and feet and sobbed and told you all we felt you needed to know about the life you had lived and the life that was waiting just beyond this moment. Your breathing was so shallow, but you were still with us so I relinquished my spot by your face so that our kids could step in close and say soft, secret words to you as you made your journey home. Your dearest friend, Riley, arrived with five minutes to spare and when I told you, “Riley is here,” I saw your eyebrows move. It always mattered to you when Riley came.
The whole thing felt both utterly chaotic and completely in order. There were moments when it would hit me that all a the details had come together to make this as beautiful as it could be. Our people were there. The sun was shining. We were as ready as we would ever be.
We turned off the British Open and turned on a worship playlist. As the sounds and songs of heaven filled the room, we said we’d see you so, so soon. At 12:52, with Beauty For Ashes playing in the background, you flew away home. And that’s when I fell at your feet and cried all my tears. So many tears. Pouring and gasping and pouring and gasping out an offering of gratitude to Jesus for the gift of you. I imagine I was pouring out my love at your feet at the exact moment you were pouring out your love at His. I heard things happening around me, others crying and praying, but I mostly heard the sound of my Good Shepherd. I saw His smile and heard His voice saying, “Thank you, Bo, I’ll take it from here.” And all the pieces of my life came together and apart all at once in one afternoon.
When the dust had settled and everyone had taken some time with you, I gathered us all together around you to pray. Corey said a brilliant, beautiful prayer, though I don’t remember any of the words, and then we began to sing
Bless the Lord, O my soul,
O my soul
Worship His holy name
Sing like never before
O my soul
I’ll Worship His holy name
And you know how your family sings, so you know it was beyond beautiful. Evan had rushed Josiah home from camp so there were like a half dozen amazing worship leaders in your home going choir. I hope heaven heard it, even though I know the choirs there are probably pretty great too.
So, here I am on day four. Still standing. Still have a headache. Wondering how I’ll do this without you. The past four years have been consuming, discouraging, exhausting, unnerving and beautiful. You became the very center of my life, my attention, my purpose, my to-do list and my heart. Now my time is free, but my heart is not. It’s odd, leaving the house whenever I want to. It’s strangely wonderful and at the same time dark and disorienting.
My facebook is slammed with messages of hope and strength. People love you, sir. I mean – they love you. Your life made such a mark on your world. And we miss you desperately. I’m not too proud to say I am unspeakably sad for me – but I can’t muster up even one minute of sadness for you. I watched your life. I watched you struggle to breathe and move. I watched you sacrifice all your dignity on the altar of ALS and I am so happy for your new life that sometimes I’m breathless with the thought of what you must be doing and feeling and tasting.
So, that is the story of the day you were born. Really, truly born into life. That I was a witness to the miracle is my dearest, sweetest treasure.
I will always, always love you.
Until we meet again,
Dear friends: This blog post breaks all the rules. It’s too long. Too unedited. Too personal. But I needed to write it – to get it out, to get it on paper, as a part of the process. I share it because I think Steve would want me to. I think – in fact, I know – that he would want you to know about this 19,445th day in his life. He would want you to know how God showed up to lead him home…and he would want you to know He loves you.
You are here.
That’s the sign I’d like to see right now, on the big map of our lives. But there’s no red arrow to be found. All I know for sure is, we are where we are. Steve has taken a swift, significant downturn this week. I’ve only left our house in small, measured doses of time – to take Josiah to the church for camp, to pick up something our caregiver needed, to run a quick errand – and each time I walk out the door I feel like a deep sea diver, coming up for air. I don’t realize how dark the deep sea is until I see the light of day and remember Oh, that’s right – sun! But I also value my place underwater. In spite of all my misgivings and inadequacies as a caregiver, I can finally say: I know what I’m doing down here. I feel more at home than I’ve ever felt and for the first time I’m starting to wonder how I’ll adjust to life on land.
My sister and brother-in-law have moved into our guest room this week, to help me with a million things. Having them here has been so wonderful for both me and the kids that it makes me realize I probably waited too long to ask for help. I probably always wait too long.
I have learned to take comfort in the craziest things: The glub-glub whirring of the oxygen machine, the color of the pink cocktail of meds that I put through Steve’s tube to help him feel better, the smell of coffee brewing after a long night spent mostly in a chair by his bed. Most of all, I take comfort in the faces of our kids when they walk through the door. Kids coming home. Life. Hope. Legacy. Living, breathing pieces of Steve. They keep me both grounded and going.
I know you want to know how Steve is doing, how he is feeling. I don’t feel comfortable telling his story to the world right now. Maybe someday, but not now. I will say this: His words are measured and sacred and, more often than not, they are about the goodness of God or his love for one of us. No joke, we are tired. I mean – bone-weary, soul-deep exhausted. Him, me and our team. Steve is weary from sickness, the rest of us from stress, sorrow and the physical requirements of caring for someone so fragile. This disease is merciless…but God. He is rich in mercy and abundant in grace that is stronger than the grave. Our home is full of it. So full, in fact, that every time I lay down and close my eyes I get butterflies in my stomach because I can feel the Holy Spirit breathing so close to me. I’ve never been more convinced that He is near to the brokenhearted, pouring out new strength every. Single. Morning. And I’ve never been more grateful.
You guys, this life? Is short and hard. But it is beautiful. I don’t have to say that as a condition of my faith, I have to say it because it’s my only certain reality right now. God is good. His love is the wonder of our world. His companionship has been flawless. We are held and we are His.
Bo for Team Stern
P.S. Thank you so much for your notes, prayers, gift cards, meals. We are beyond grateful and all the way to astounded. Not having to worry about cooking and cleaning has been a great blessing these past few days. If you’d like to be included on the email updates Whitney sends out to let our army know when we need help, you can send your email address to firstname.lastname@example.org. We love you.