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
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.
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?
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!
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.
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.”
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.
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 !
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