Marianne Has ALS

Warning 1: This is going to be one of those super long introspective posts. If you don’t feel like reading the whole shabang skip down to the too long didn’t read (TLDR) at the bottom.

Warning 2: It is very likely that if you do read this entire post you will read something that gives you the feels. Those feels might be offense, anger, shame, love, happiness, sadness etc. It’s important to remember this is my story – my life, how I did see the world and how I evolved to how I see it now. My intent is to tell you where / why I am at this point, I hope you read this with a loving heart. Also, I won’t be offended if you don’t like it – dying kind of puts all of life’s disagreements into prospective.

The long and winding tale of Marianne’s faith, relationship with God, and the answer to the question, “Are you mad at God?”

Part 1: 0-8 Years Old

As a young child loving God was easy. Everyone you know loves God and everyone you know is a great person who loves you. The world is very black and white, people fall into two categories: good and bad. Luckily for me, all the good people were the people I knew! Sunday school set the foundations of faith and all the people in my world (family, teachers, extended family) reinforced that God is good.

Part 2: 9-18 Years Old

9-18 brought on questions, lots of why – Why do I have to wear dresses to church camp? Why do we use a specific Bible? Why don’t we have women who preach? Why did God kill everyone but Noah and his family?

Each question was answered patiently and as I got older, the questions were answered with more and more detail. I began going to Bible study and to my friend’s church on Wednesday nights. One day I felt the Holy Ghost move within me and shortly thereafter I was baptized. Faith in this phase of my life wasn’t as easy as it was before, but, it’s a new more profound faith. A faith that is known and not a taught.

But….I started noticing things, things that bothered me. And I kept having questions….

Part 3: 19 -34

During this phase my circle greatly expanded. New and more diverse people entered my social circle. I also became more observant of the actions/behaviors of those around me. I began to realize that people who I had once believed to be perfect examples of Christians did not always act in the ways I had been taught Christians should act. During this phase of my life, I became disgusted with what I perceived to be hypocrisy.

My heart did not entirely close itself to God, but I wasn’t as faithful or as close to God as I once had been.

Part 4: 35 – 42

I know this will be controversial, but, the 2016 election had a big impact on my faith. I saw people who proclaimed to be Christians vote for a man who by his own actions appeared to be the antithesis of Christianity. This event hardened my heart – and I was sad, frustrated, and angry. During this phase in my life I began to say, “I wish I could believe in God. I want to believe in God.” But 2016 proved to me that Christians were liars, Christians didn’t love, and if Christians were like this…how could the God I had been taught about be real.

Part 5: Today

When I was diagnosed with ALS, Jacob and I immediatley joked that we were going to find religon. Joking is our way of coping. Despite saying this I didn’t suddenly repair my relationship with God…I was too much of a blubbering mess.

The days following my diagnosis were filled with so much love and compassion that I very quickly felt God acting through those around me. Next, I began to pray, a lot. I have been praying on my own, with family, with Jacob, and with Jacob’s family. I feel God’s presence during these prayers, I feel God’s love, and I feel God’s comfort. Does this mean I’m not terrifed – no, I’m terrified. Does it mean that despite knowing how bad this is going to get I have a feeling it will be ok? Yes, it does.

Looking back I think that I forgot that humans aren’t perfect. You can love God, and you can / will make mistakes – and that’s kind of the point.

Are you mad at God?

No. I don’t think God gave me ALS. I don’t think that’s how God works. I do think that I was presented with an opportunity – to forever turn my back on God, to hate him for what has happened, or, to grow closer to God, to let God’s love lift me and carry me through this difficult time. I’ve chosen the latter.

TLDR: No, I’m not mad at God. And, after a long journey I’ve rediscovered my faith.