Living with ALS - Surrendering at a New Level

Originally published on October 31 in Shelly's journal: www.caringbridge.org/visit/shellyhoover/journal

ALS is Relentless - ALS is Winning

All my life, hard work and perseverance paid off. If I put my mind to something it would eventually happen. The path was filled with bumps and detours, but I reached my goals all the same. I've been approaching ALS with the same conviction. Deal with the losses as they come, stay positive, embrace dependence on others and durable medical equipment. I'll beat this thing if I stay the course. I'm doing my best to stay the course -- but ALS is winning. It is RELENTLESS.

Shelly Hoover

The slow progression in my hips and legs over the last 24 months has reached a tipping point. I struggle to stand with braces. I can't move at all without fear of stumbling. Turning in bed is a major struggle. Showering is a serious slip-and-fall hazard. I can't wait to roll into my shower -- construction begins in a few weeks. I just received a lift that will transfer me and a machine that will cough for me. I have a device on order that will speak for me.

I'm sad because I feel my plan is not working and ALS is winning. I think about my loss of mobility over the last two years and it's not hard to project what the next two years will bring. Will my arms will be gone too? Will I be able to swallow, speak, or breathe? What will I be able to offer as a wife, mother, grandmother or friend? Scares me, yet I refuse to live in fear. 

Negating Fear with a Promise from God

If you've read any of my journal entries you know how I negate every fear with a promise from God. That strategy works until I reach a new level of grief and fear. The impending loss of my ability to transfer is a biggie. This week I was sad awaiting the delivery of my new lift. The ladies in the attic were telling me, "You know if you get that lift, it's the beginning of the end. You won't be able to take care of yourself and all your fears of dependence and isolation will come true." Truth is, I wasted all day Wednesday feeling sorry for myself as I waited for my lift to be delivered. It didn't come. Did I waste a day fearing something that didn't happen? Yes I did. Then I smiled because I re-learned the bigger lesson that It's ridiculous to waste a single minute worrying about something that may not happen.

No Reason to Fear ALS - I am Blessed

Shelly & Steve Hoover

When I find sadness and fear have overshadowed joy and gratitude I know I'm not walking in faith. Faith and fear cannot co-exist. 1st John chapter 4 says that God is Love. There is no fear in love and perfect love drive out all fear. So I surrender at a deeper level knowing that God has a plan for me and Jesus knows my suffering. I have no reason to fear.

Shelly, Brynnlee and Archer.

I return to gratitude. My husband loves me sacrificially. I have supportive parents. I'm proud of my children and their spouses and thankful we have close relationships. My grandchildren are healthy and bring our family great joy. I am surrounded by loving and supportive friends and community -- beyond belief. I am blessed. I get excellent coordinated care at the Forbes Norris ALS Clinic.The VA continues to provide for my every need even before I have the need. I have the best of circumstances surrounding the worst of diagnosis.

I share my struggle not for pity but to encourage you to live your best life. Don't live in condemnation, sadness or fear. Find forgiveness and freedom.

I'm Forgiven and Free and surrendering at a new level.

Shelly lives in Lincoln, CA with her husband of 28 years, Steve, where she most enjoys spending time with family and friends They have two children, David and Lacey, and two grandchildren, Brynnlee and Archer. She was diagnosed in May of 2013, and continues to work on an educational research project studying, though the eyes of students, how teachers develop positive relationships with students. She will be going to ALS-TDI to enter the Precission Medicine Program in December.

"The hidden gift in a terminal diagnosis is the ability to see past drama and pain and to live in forgiveness and joy. I am forgiven and free." - Shelly Hoover.