I love concerts, the planning and anticipation. Going to events is different for me now. I have to time it and plan for days of rest before and after the event. At a concert, I am trying to be fully present in the moment, but at the same time tuned into my symptoms and trying to manage them, so I can be there. I have polaroid sunglasses that my physical therapist recommended I wear, even indoors, to help with overstimulation. Often, I have to leave and find a quiet place to take a break. 

Isla and my mom are my music buddies. We always share new music and talk through everything about the songs. One of our favorite bands is We Are Messengers. We’ve seen them in concert several times and love them. Their songs were on my playlist I listened to in the hospital after my first brain surgery. 

They came to Oregon back in October, so Isla and did some dog sitting to get tickets. 

The week before the concert was when the first MRI came back with the findings of a fluid collection. I was scheduled for a neurosurgery appointment, but still had to wait a few weeks. I was already feeling very sick at that point and could tell my physical symptoms were getting worse. 

I was disappointed that I felt so sad and heavy during this concert that we had all been waiting for. I don’t go to many big events like that, so it was a big deal. A lot of planning of symptom management and coping went into this. My doctor says it’s good for me to have an event or something to look forward to that will help keep my mind occupied. 

 I was so upset that to have this MRI  hanging over me the whole night. I always have this feeling of wanting to be fully present and not miss anything, but I feel like I’m always able to be fully in the moment. I think that comes from losing and missing out on so much because of my illness. 

It was an amazing concert and we had so much fun. There were a few times I had to sit down and close my eyes. I popped an instant ice bag on the back of my neck to help calm some symptoms that helped. They played one of my favorite songs, Come What May.  But standing up and singing “come what may” while you’re waiting on an appointment with a neurosurgeon to discuss a collection of fluid in your brain, was easily the scariest moment I have ever experienced in worship. 

I couldn’t sing it and I felt so angry. Angry with my life, for the life I lost, the life I have with this illness and how unclear and scary the future seemed. This is not the life I ever imagined for myself and there’s times I resent it. I resent my illness and the struggles it brings both physically and in relationships to with people who are close to me. It’s so isolating. 

I wrestled with God so much during that song. I think I was angry with Him too for how heavy everything felt and how I can never see a stopping point for this pain and struggle. Angry with how abandoned I felt. I was also angry at myself for not wanting to sing the phrase “come what may”. It was just too real and too scary. I kept thinking to myself can I do that sing that with sincerity and I am dreading my future. 

I remember pleading with God that I wanted nothing more coming my way and begging for a break and for some relief. To let things be calm for a little while so l could feel like I wasn’t constantly barely keeping my head above the water, about to go under any moment. 

I remember during this song feeling a heavy foreboding feeling sinking into me and I just knew something was wrong. Something was wrong with my body. I knew then the MRI scan was something more serious than I wanted it to be and that something was coming. In the middle of the song, I felt an overwhelming panic and despair, I dropped into my seat and wept. My mom and sister sat with me and we prayed together. 

On the way home we talked about the concert and that moment. I explained how that was one of my favorite songs, and my thoughts in that moment. It’s easy to sing songs like that when you feel far removed from trials, but it’s different when hardships they feel like they’re about to drop on you at any moment and crush you. 

Isla in the back seat quietly says, “it doesn’t change the meaning of the song. The truth is still the same.” She’s right of course, but I have struggled with that song ever since that night. It honestly made me feel angry and restless. I didn’t want to be confronted and think about the possibilities and questions it brought up. The big one was if my faith strong enough to be able to proudly and fiercely say to God, “come what may” knowing that I was probably up against another brain surgery and brutal recovery. 

I think I was feeling guilty for my faith feeling worn and lacking. I know that God is perfect in His love and would be faithful to me, but it all felt like too much. I didn’t want any more pain and suffering. I want my life before all of this illness back. 

A few weeks after that concert, is when I found out that the fluid collection is caused by a leak in my dura (the inside lining of your brain) and is still actively leaking and slightly growing. There’s scar tissue, and decreased CSF flow, which could be caused by the scaring or the fluid, possibly both. This is why I feel so sick and have developing mobility issues. I’m using a cane now. 

I heard “Come What May” on the radio a few days ago, right before we left home to fly to Colorado for surgery. My family was in the car, so we listened to it. 

This time though I heard it differently. The part of the song that I heard the loudest was “you’re still my rock, my hope remains, I rest in the arms of Jesus. Come what may.” The truth of that sank deep. 

He’s my rock in this time of suffering. There is nothing I can do to change this situation. I can’t stop the need for brain surgery or cure this incurable condition, and the changes and new symptoms, God does not change. God’s love and faithfulness to me has nothing to do with any of my abilities or lack of, it has nothing to do with my fears and the endless questions of what if’s. My hope is in Him and Him alone. He is the same on the mountain tops as he is in the valleys. 

We are now for CO for me to have my revision brain surgery TOMORROW. The surgery is to remove the fluid, scar tissue, and part of it is exploratory to see exactly where the leak is and what is going on and causing the blockage. 

Please pray for me.  Pray for my family. It’s not my first brain surgery, so we know in some ways what to expect, which is terrifying, but there is still so much unknown. I feel scared and dread for what’s coming, but also hopeful that this will be that last surgery and bring some physical healing and improve my quality of life. 

So, while this is not at all what I would have chosen for my life and I’m scared, and don’t know what the future holds. I can say that God is still good to me. I see his tender mercies and His love for me. 

Sometimes sorrow is the door to peace

Sometimes heartache is the gift I need

You’re faithful, faithful

In all things

In every high, in every low

On mountaintops, down broken roads

You’re still my rock, my hope remains

I’ll rest in the arms of Jesus

Come what may “

Thank you all for your continued support and faithful love and prayers.

Shae