This week. Wow. It’s been a doozy. My days have been full with the usual things, like caring for Steve, and some new things, like my neck seems to have called in sick for work. I woke up one morning unable to turn my head and that issue followed me throughout three days of frustration and discouragement.
My low point was Monday and it was L O W. All day, I fought hard to keep a rising tide of tears behind a flimsy emotional barricade, knowing if I started I wouldn’t be able to start. I sent a prayer SOS to two of my friends, who immediately texted: “We want to come see you.” To which I responded, “No, you don’t. I’m a mess. Trust me. I’ll just cry and I don’t want Steve to hear me cry.” I felt it was the right response, but I sat down feeling more alone and lonely than I have in a long time…maybe ever. I tried everything on my stupid neck. Ice. Heat. Icy hot. Tylenol. Advil. TylenolANDAdvil. Nothing made a dent in the pain and nothing could touch my despair.
Just when I thought I would drown in the day, I got a text from Whitney saying she and some friends of ours had booked a massage for me the next night – and it was someone willing to come to my house, so I wouldn’t have to find alternate care for Steve. Right after that, my doorbell rang and I found my two friends – the friends I had expressly forbidden from coming over – standing on my porch, holding flowers and dinner and saying, “Don’t be mad! Don’t be mad! We won’t make you talk!” The warning wasn’t necessary, I couldn’t have been less mad at that moment. They stormed the gates, fed my poor, starving son, rubbed my neck, cleaned my kitchen and listened to my heart. They did it without demands or expectations and they did it even though I told them not to. They are brave and I ended the night so glad they had come and SO sorry that my friends had to be brave in order to bless me.
My neck is feeling better – the PT tells me it’s a “repetitive motion injury”. It’s my first official caregiving injury, which is remarkable because I don’t know a single ALS wife who hasn’t had them. All other negative physical manifestations from caregiving are – in my case – Twinkie related. But, truly, things are looking up.
What I’ve learned this week is that I still want to do this myself. I want to manage my pain, handle my grief and care for my husband without needing help. I mean, I’m thankful the help is there, on the outskirts – but it’s still hard for me to actually NEED it and to welcome it right into the middle of my chaotic kitchen and the murky mess of my life. I’m trying so hard to change. To embrace these incredible relationships and to fall into the solace they provide, even when it hurts my pride and invades my silly barricades.
If I could offer one piece of advice to those in crisis, it would be: Welcome the help of friends. And for those not in crisis: you always have something to bring to the battle and you might be the only one who knows what that is. Keep trying. For those of us who are in a fight for our peace and sanity, we simply do not know the answer to “How can I help?” We need a little help with it. I’m so sorry we make you afraid to give it, but try to give it anyway.
With hope and gratitude for friends who don’t quit,
Bo
Dear sweet, almost-here Grandbaby,
I can’t stop thinking about you this morning. Lots of times when I think about you, I imagine your tiny feet and hands and nose, but today I’m dreaming bigger than that. I’m dreaming about your big name – Phineas Brave – and thinking how badly our world needs you.
We are reeling this week because a young white man went into a black church in Charleston and opened fire. Nine beautiful lives were ended by his hatred. Countless family members are today planning funerals instead of summer vacations. It’s tragic beyond words.
And yet…words.
Words are everywhere.
Everyone is talking about why and how and What In The World is Happening Here? and I want to scream: the very same thing that has always happened is happening here!
I was born into the racial violence of the 60’s. You are being born into the racial violence of the new millennium and the best thing you can do for your world is to refuse to rename it anything other than that. Refuse to get caught in the spin that this is isolated or that gunman was mentally ill or this was an attack against Christians and not an attack against black people.
Refuse to let the world tell you this can’t change or that we’ve come as far as we’ll ever come to bridging the racial divide, or that being born into a middle class white family in Bend is the very same thing as being born black in Baltimore. You don’t have a responsibility to defend all people because you’re white. You have a responsibility because you’re human and because the God we serve demands it. And, wow Finn, I hate framing any part of your future relationship with God in terms of demands, but there’s no softer way to say it and still stay true to the Biblical mandate – God demands that we stand with the poor and oppressed. But Christians have been treating it as optional for way too long.
Caring for our brothers and sisters of every skin color is a core value of God Himself and we should be willing to do, pay or say whatever it takes to make sure that every life is given the value and safety it deserves. In order to do that, we’re going to have to stop looking away and start asking painful questions. We’re going to need to be willing to leave the cheap seats and move right into the messy middle, where statistics tell the story of what it’s really like to be black in America. We’re going to need to insist that we can do better than this. We can fly better flags than those that keep old wounds festering. We can build better schools in at-risk neighborhoods. We can choose to admit that this is not an African-American problem, it’s an American problem and it’s our job to work towards healing and a whole new level of harmony.
Oh, darling Finn. I’m hopeful today because of you. Because you will come with those incredible little fingers and toes, but you will come bearing the Imago Dei – the image of the God of Justice tattooed on your DNA. You will come brave and ready to love your world into life. You must. Because I’m increasingly convinced that the divides that have prevented my generation from meaningful forward motion, will keep us stuck in this spinning, re-labeling madness until we die. The only hope for a future of reconciliation is the now-being-raised army of compassionate, courageous culture-makers with names like Greyson, Clara, Ivy, Hattie, Gracie, Laila, Whalen, Ole, Penny, Bear…and Phineas.
Be brave, little ones. Our future needs you.
With hope,
Granbo
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,
Steve
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.
With hope,
Bo
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.
With hope,
Bo
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Melisa Sween - Thanks Bo for the reminder of not accepting help. I am getting better but it has taken me 33 yrs and still I often refuse it. I think for me accepting the help I feel like I am not staying strong or in control and I might totally collapse and I can’t do that. I know I had a hard time accepting compliments too. I had a tendency to say “oh well it wasn’t really me or I had help etc” and my friend and supervisor said when I dismiss peoples compliments I was disregarding them and soon people would stop giving compliments. He said just say Thank you! Over the years it has gotten easier :-). Thanks for sharing your heart! My prayers will continue.
Nat Gitnes - I feel ya’, sister! My family is in crisis and God is teaching me, not only to accept help from friends, but also to ask for it….so stinkin’ hard. I told a friend today that I felt like if I started crying my strength would ooze out with the tears. What if it did? Am I afraid that God’s strength couldn’t carry me? Hmmmm?
Heather - Bo – you, right along with Steve, continue to be in my prayers daily and sometimes multi-daily. I was driving to the church office this morning at 7, thinking perhaps you guys still had another hour of rest before your West coast sun rose, praying it would be a peaceful day where you would find strength … You have been on my heart more than usual and i will continue to lift you guys up. Thank you for sharing so openly. We love you guys here in Nebraska!
Tammy - Sweet Bo, look at the help that is offered as an answer to your prayers, because it will make life easier and less stressful for you and allow to enjoy the time with Steve rather than wrestle your way through it. Think how you want to look back at this time; is it “I was such a brave trooper” or “I remember when Steve and I had this special time together”? Let God’s Angels make your load lighter, lovely lady.
Jewl - May my stopping into your site here tonight add just a bit more blessing to the major gift you received of good friends dropping onto your doorstep and a much appreciated massage. “Lord, ease the muscle strains in both your children there.”
Christine Duncan - Bo, over here in Hamilton, Ontario, Canada lifting you and your family up to the One who hears every cry. Following your journey has been such an inspiration to someone like me… I live with chronic depression {Dysthymic Disorder} (of the lifelong variety) and my disorder likes to try to make me a victim.
And then I read one of your brave posts.
And I shrug the victim mentality off.
And I wait out the misfiring wonky transmitters behaviour in my brain and body… and I cling to Him.
You don’t know me from a hole in the wall but know this.
Every post is another post where God uses you to touch the rest of us. Hang in there. The Life Preserver’s got you.
Rhonda - Bo, I don’t know you personally, but know people who do! Your posts inspire me every time I read them. I am currently struggling with a severe lupus flare. Your strength in the face of a seemingly impossible situation gives me strength and hope as well…..Thank you for continuing to share and inspire. All of God’s blessings to you and your family !
Ginny Mayo - I lost you for a while don’t know how. But God brought you to my mind & I found you! (I am Duane Cole’s favorite auntie).
You are one amazing lady.
Shalom
Auntie Ginny