I’ve come to dread the question, “How’s Steve?” It used to be easier to answer – when there were up’s and down’s, good days and bad. Now, it seems like all the days are difficult and all the nights are long. This stretch of road requires a lot of endurance, and the determination to count the moments as they come without measuring one next to the other. So the question is tough to answer, but I know everyone cares about how he’s doing and wants an update, so for this one I went straight to the horse’s mouth.
Steve talked, I typed (word-for-word – I promise!) He was exhausted at the end of this..but here are his words to you:
Hello family and friends,
I was listening to Chris Tomlin’s song, “God of Angel Armies” this morning and there was such a presence in the room. It made me well aware that Jesus has some assigned angels that have gone before me in my battle with ALS. I’ve had some tough weeks lately but I’m also aware that I’m not alone. While there are times my family and friends can’t be with me, Someone is always with me.
Thank you for all your prayers and your faith. I am in God’s hands and I can’t think of a better place to be. Last January, I remember wondering if I would see this year’s US Open. It starts tomorrow, so I have a pretty good chance and I’m excited about that (please imagine Steve smile/smirking here.) One thing that is happening to me that I’d love to share with you is that I keep falling in love with Bo Stern over and over again. (Another smile – he’s just trying to fluster the scribe here.) There are some earthly treasures that carry more weight than others, and Bo does it with honesty and faith and grace.
Keep praying and keep faithfully asking God for His will to be done in my life and through my life…as we should pray that for everyone, always. I sure do love you.
Your friend and warrior in Christ,
P.S. I think Ricky Fowler has a great shot at winning the US Open, if you wanted to know who I’m pulling for.
My husband is miserable tonight and exhausted by the myriad of ways his body is betraying him. Turns out, a lot of things go wrong when muscles die.
I camp out in a chair near his wheelchair while he watches old movies. He doesn’t watch them because he loves them so much, but because he needs a way to get out of his own head. There’s not much I can do to help, but I want to be close. I don’t like movies much, but I really like him, so I read and research and pin stuff on Pinterest that I’ll probably never look at again. That’s how I stay out of my head.
But back to my point. As I mentioned, Steve is so tired and so, so uncomfortable tonight. My parents came over and we tried to pray for him, but I could only cry. I couldn’t say any words. I’m so tired of watching him suffer with no way to help him. Not that prayer doesn’t help….it does. I believe in prayer, but have you ever landed in a place so confounding and painful that you can only pray out tears and groans and sighs? That’s me tonight. I’m so thankful for parents who are just as lost for answers, but are able to find the words we need. My dad started his prayer for his dear son (the “in-law” part is just semantics) with these words, “Father, we have no might in this battle…” And that’s all I remember, but it’s exactly how I’ll probably start every prayer for the rest of my life. My parents prayed, Steve and I cried, and then I walked them out to their car. When I came back in, Steve caught my eye and mouthed the words, “Hello, beautiful.” They were silent and ragged, but they were dearer to me than any of the million times he’s said them in the past thirty years. They were an offering. A diamond ring. A party dress. A sweet caress. Just two words, poured out like water on dry ground, from dry ground.
This night was hard, but I’ll tell you what: I will never forget it. Not as long as I live.
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,