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,