This has been a tough month for Steve – especially in the the past week. Some sort of virus, combined with his already-fragile condition made for a dicey few days for all of us. I can’t quite explain what this season is like as we live in this land filled with constant uncertainty. Friends and family wonder: should we come? And I know that simple question is loaded with more complex questions they don’t want to ask. But I have no answers – at least nothing concrete enough for airline reservations. If the question is: “How long do we have with Steve?” the only solid answer I can find is: not long enough.
As the week played out, I asked Steve how he felt inside his mind. He always says his spirit is strong, but I wondered what was percolating up in his brain. He surprised me by saying he feels he has so many thoughts that he can’t get out. I hadn’t really considered that. He can no longer type and his speech is so limited and his breathing so taxing, that he uses words very sparingly. But it turns out, he is constantly thinking and re-thinking and he needed to get some of those thoughts out. We set aside some time for him to talk and me to type. It was a laborious process as he stopped every few minutes to suction and regain his strength – he lasted an hour and was exhausted at the end, but I’m so glad we did it. Hearing what is living inside his heart was wonderful and gut wrenching and difficult, but I have a better handle on how to pray for him now and two pages of Steve-words that I will treasure forever.
For me personally, May has been my most difficult month on record. I realized in the first week that the sentences in my head were all starting out with “I need…” or “I wish…” I need a break. I wish life was easier. I need to pay bills. I wish things were like they used to be. You get the idea. I started working hard to replace the first two words of every thought with “I have” or “I’m glad that…” I have a great family and beautiful friends. I’m glad that I have the money to pay the bills. I have the best caregivers for Steve so I can have a break during the days. No joke, it’s a lot of work to make the switch and it’s not a very lot of fun. But it’s so, so worth it. It keeps me out of the ditch in a million ways and sets my heart on the things that are most important. Because the unfailing truth that guides my life and guards my sanity is this: The Lord is my shepherd; I have everything. All that I am, dream, believe, hope and need is wrapped up tightly in that one sentence which has now become my May mantra. Feel free to borrow it if your month is less marvelous than you had hoped.
I know I haven’t said it enough recently, but we really love you and are so grateful for your support and prayers and friendship. We read every comment and are thankful for every one.
True confession: Steve and I have watched every episode of American Idol this season. Every, single one. This is astounding because there are virtually no entertainment choices on which we agree. He’s sports and action movies. I’m documentaries and You’ve Got Mail. We haven’t always watched American Idol, and we’ve never watched an entire season until this year. This year, as Steve has been stuck at home, we’ve looked for ways to spend time together and AI has become our regular date night. Even when it fell on the opening night of a conference I was very involved in, the decision wasn’t even a little bit hard – no way was I going to leave Steve on AI night.
Tonight was the finale. The last show. And it was surprisingly, weirdly painful for me. I have no particular attachment to these competitors; but this show has marked a specific stretch of road for me. It opened on January 7, exactly one month after Steve went on hospice. I remember wondering if he would be here for the end of it. Each Wednesday and Thursday, it marked an escape for us from our reality. I talked incessantly through it. “I don’t like her vibrato.” “Why is he wearing a hat again?” “Is that tattoo real, do you think, because I didn’t notice it last week.” That kind of riveting, never-ending commentary. Steve doesn’t have the energy to respond much but that doesn’t stop me from talking. We were together and that’s what mattered.
So, back to tonight. The show itself was a pretty epic disappointment. I didn’t enjoy the hours of filler and a lot of it seemed sort of…desperate and maybe a little bit tired and sad. But when it was time to announce the winner, I found myself overwhelmed with emotion. The decision hung in the balance between two young, handsome, talented men. They were both worthy competitors, but when Nick’s name was called, I was so happy for him. I mean, like unreasonably happy. Tears-streaming happy. I cried as he was pounced on by his competitors’ fierce hugs while he tried to sing his new song and then I really cried when he left the stage, mid-sentence, because he just needed to find his dad for a hug. Confetti fell thick all around him, all around everyone. And you could see it in his face: this was a moment beyond his craziest dreams – the kind of moment where you know everything is about to change.
And in that very same moment, in the magic of Nick’s victory, I suddenly knew what I hadn’t known before: the reason we’d been watching it all this time. Call me crazy, but I think I was seeing a picture of Steve’s future as he enters heaven…the winner. Microphone in hand, he’ll sing the song of the redeemed (and oh, sister mercy, my husband can sing!) as confetti falls and those who’ve gone before cheer, because they know what we cannot possibly know from our place in the cheap seats – they know that everything is about to change for Steve Stern. He’ll try to keep singing, but he’ll have to stop to find his dad in the crowd and go hug him, long and hard. And more than anything, he’ll understand what the long fight was for. What might seem like a disappointment of a finale will now be known as the doorway into life beyond his dreams. Beyond all our dreams. And from that vantage point, on that stage, he will finally and truly understand what it means to say death has no sting. None.
Nick finally pulled it together and returned to his spot on the stage in time to sing the very last line of his victory song, and the line was,
“Oh, what a beautiful life.”
Yes. Beautiful, indeed.
I don’t know exactly what drew you to this post, but I’m guessing it was bad news. Perhaps your spouse was recently given a terminal diagnosis or has been struggling with something chronically debilitating for years. Maybe you have a friend whose walking a spouse through the Shadowy Valley of illness or injury and you’ve run out of advice or encouragement. Whatever brought you, I’m glad you’re here.
Nearly every day, I receive emails or phone calls from people who are reeling from the shock of their spouse’s diagnosis or suffocating beneath the weight of responsibility they carry as they try to navigate their new role as caregiver while also hoping to hang onto their role as husband or wife. I wish I could linger over coffee with every person experiencing this – not because I have all the answers, but because I remember the first days so well, wondering if I’d survive and longing for someone who had been there to assure me that I just might. So, here’s what I would say if we could have that coffee:
1. This will be hard. Really hard. But you will survive. You absolutely will. I don’t even know you and I can already tell you’re a fighter.
2. I don’t know this for sure, but there’s a good chance that no matter how much you love your spouse, there will be days when you would like to run away. Your heart may want to push away from the seemingly never-ending shores of grief, with a longing for something new and exciting or old and familiar. You may wish with all your might for what was or you may be filled with the desperate desire for the reassurance that life will still exist when the dust settles. I don’t know the details of your longings, but hear this and hear it well: You are not bad for having them. You are normal. You are human. You are heartbroken. You are not bad.
3. You will need help. Start thinking about how to get it before you’re desperate for it. You will need medical help (caregivers – really, you will and I’ll write a separate post someday to tell you why but for now? Please trust me) and you may also need help with finances, housekeeping, grocery shopping, etc. It is not weak to need help; it’s wise and strong and a gift to those who long to step in and serve you. For my money, the most important thing you need right now is a person who will ask for and organize the help you need – a person who is not you.
4. If there’s one determination you could make right now that I think will serve you well for the rest of your battle, it’s this: I will keep my heart soft for others, for my spouse and for myself. In doing so, I will keep myself safe from the poison of bitterness. If there was one more determination you could make (bonus!), it would be: I will take every opportunity to rest or to laugh that comes my way.
5. When your loved one is on the other side of this illness, you will still have yourself. You can’t get away from yourself, so try to be fun to be with. Don’t live in regret. Don’t live in fear. Don’t live victimized. Live real. Live raw. Live healthy. Live love. You can’t go wrong if you remember to keep living.
So, I guess that’s it. I mean, it’s not – there are a million other things I would say if I could, but these are the things I most want you to know because they are the things that have saved my life in the hardest and most beautiful season I’ve ever experienced. I hope they give you hope.
You’re my hero,
If you tell me your husband is hard to buy gifts for, I will have zero sympathy. I’ve honestly never experienced anything like trying to choose something appropriate for a man on hospice who can’t eat, drink or leave the house. Videos were good for awhile, but now we mostly use Netflix and apple TV, so DVDs tend to sit on a shelf and never get opened. This year, though, is a special birthday. Steve fought hard for this birthday and I didn’t want to let it slide by without presents. So, we bought ’em – we just didn’t buy them for Steve. Instead, we bought them in honor of Steve. The only guideline I gave the kids was to spend money on something or someone they felt Steve would want to bless. Last night , after reading a few of the (hundreds!) of emails that came in for him (thank you!), we gathered around him and gave him his gifts:
Corey, Whitney and Grey gave money to a young couple’s dream of becoming missionaries. Steve was a missionary kid in Africa for the first part of his life, so this is dear to his heart.
Casey supported some friends’ project to provide school supplies for needy children. We loved how this gift touched so many layers of people.
Tessie gave money to Charity Water (one of my favorite organizations out there), and in Steve’s honor helped provide clean water for 2,000 people.
Victoria researched and found an organization working to empower women in third world countries and they have a strong presence in Nigeria (where Steve grew up.) One of the things I love about Steve Stern the very most is the way he believes in women. Perfect gift.
Josiah gave money to Sparrow Clubs – an organization here in our community that provides help to children with profound medical needs, and uses public schools to do it. Man, I love Sparrow and love that Joe thought of them.
Tess’ boyfriend, David, chose to bless a friend who needed help with his tuition. Exactly the kind of thing Steve would have done because he’s just a dad like that.
As for me, I knew right away what I wanted to do. When Steve can’t sleep, he lays in bed and prays. He prays for us, for our family, for all kinds of personal things – but he has also spent long hours praying about the situation in the middle east and for the victims of ISIS. It’s deep in his heart. After researching several organizations, I gave to Samaritan’s Purse, earmarking my money to go towards displaced Kurds who have fled the violence in their region. In doing so, I felt like I was putting feet to Steve’s prayers and it was so fun. And I didn’t have to wrap it!
As we each told him what we had done his honor, it struck me that this is much like Steve’s life. Though he feels so stuck in his chair and his house all day, the effect of his faith and compassion ripple out all around him through those who know and love him. After gift-giving, we watched American Idol with him, all stuffed together in the room where he spends all his waking moments, critiquing the Idol voices and outfits and just generally making it really hard for him to hear what was happening on his show. It truly ended up being the best birthday ever.
When I was little, we would sometimes travel to the Oregon Coast on mini vacations. I both love and fear the ocean so it took me awhile to get brave enough to put my toes in it. My parents also fear the power of the crazy coastal sneaker waves and would always start to panic when the tide rolled in. Slowly it came. Wave by wave, moving closer and closer to toes…ankles…knees. That’s when it was time to move away from the water and into the safety of the house. The saddest moment of Oregon Coast vacations was high tide on the very last day. That’s when I knew: our time here is nearly done.
Sorrow is so much like the tides. It rolls in all stealthy and, little-by-little, starts to nip at your toes. In the past few months, I’ve tried hard to outrun it. I run to Home Depot or I run the River Trail and it works for awhile, but today, I feel the tide edging up into my now, pushing its way into all the moments of life. Waking. Sleeping. Hoping. Singing. Shopping. Any moment, it seems, is at risk for a sneaker wave – a gut punch of sorrow so intense I sometimes feel doubled over by it. The problem now is, the tide is too close to outrun.
ALS is also like the tides. It sneaks in slowly at first, attacking and receding, almost like it can’t make up its mind whether it wants you or not. Steadily, though, you realize: here comes high tide.
So, here we are. Four years post-diagnosis and it seems the water is nearly up to our knees. We could run, but Steve cannot, so we will stand with him on the shoreline as long as we can. We will surround him and guard him and keep him as safe as we can until the water carries him away to a new and beautiful life. We will try with everything we have to let go gracefully. We will worship. We will give thanks. We will weep. We will dream of the day when we are together again.
We will try to be brave, but more than that – we will trust. We will trust that God is real and God is good. We will trust in His sovereignty and strategy. We will sink our hearts deep in all we know as truth: that our Great Father is living in a committed, covenant relationship with Steve Stern and He will not, will not, will not leave him alone or unloved. Not now, not ever.
If we trust Him, we have everything.
And we do. We trust Him.