#12 My ALS Journey—Where Do You Run

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Be merciful to me, Lord, for I am in distress;
    my eyes grow weak with sorrow,
    my soul and body with grief.
My life is consumed by anguish
    and my years by groaning;
my strength fails because of my affliction,
    and my bones grow weak. Ps. 31:9-10

When I was a kid, I would ask my mom why she believed in God. She would say, “I believe, because I believe, because I believe.” That frustrated me. It didn’t answer my deepest questions and prove beyond a doubt. What I did see was my mother’s faithfulness to God throughout her life, especially with ALS. 

I love that she references Psalm 31 here. The Psalms give language to our pain. The world tries to silence our expression of feelings of hopelessness and despair. This “shushing” breeds shame and the feeling that seeking comfort is selfish. As a result, we are made to believe that even God does not want to hear from us. Nothing could be further from the truth.

Side note: She mentions her women’s Bible study group meeting at the bar at Denny’s. She thought this was very funny.

–Tricia

For a couple of years, once a month, a group of women met in the bar at Denny’s restaurant for a Bible study. One Saturday, the lesson focused on Psalms 31 with the theme, “Where Do You Run?”

Today was a rough ALS day for me, sometimes, I feel overwhelmed. I got up in the middle of the night to take care of…you know, I got on my scooter to head back in bed, I wasn’t able to successfully turn the scooter around and I kept running into the door frame. There are several spots with missing plaster and paint, this is in the middle of the night, and I am a little sleepy, so I think I have an excuse. By the time I did get back to my bed, put on my breathing mask (have I ever told you about the BiPap?), and got both legs swung into the bed, I am almost awake. I begin to realize I am getting dangerously close to being unable to get in and out of bed and take care of those nightly functions without help.

Admittedly, I sometimes let my thoughts run amok, and I get a little depressed, so where do I run when things get rough? One of the things I have always wanted to be is one of those spiritual giants with great wisdom who carry their Bible everywhere and can quote the right scripture at exactly the right time. Unfortunately, that isn’t me, I have tried, and it just doesn’t seem to work. You would think a person with my diagnosis would suddenly be filled with great spiritual insight and wisdom. I am just not feeling it. It appears as though I will never write a book like “Jesus Calling,”  see the pillar of fire, or the special cloud in the sky. What legacy is that for my grandchildren?

I have openly shared with a few people that I did not talk to God for almost a year after my diagnosis. It was not because I was angry, bitter, or disappointed. I just didn’t know what to say or what to pray. Because my faith runs deep, I knew God would not walk away from me nor me from Him. Thinking about that Bible study so many years ago, “Where do You Run,” I find it funny that now there are very few places I can actually “run.” Life is a rocky road. It gets rough. I do “run” to God, and I am “standing” on the Rock. Where do you run in the middle of the night when your scooter keeps hitting the wall?

–Susan

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