Hello everyone! This post is going to be a little different. I don’t have any big health updates or huge prayer requests. Many people ask me how I am and how I am really doing. That is a hard question for me to answer. I usually reply, “I’m fine” to keep it simple. Recently, I’ve begun to reflect on why it is so hard to answer that question.

I started this blog to post group updates to save time. Then I caught a glimpse of the dark chronic illness world, on social media, and decided to also use this blog to bring some hope to others who are struggling with chronic health problems. As I’ve shared my health struggles and some of the fallout from my diagnosis, I’ve tried to keep it in a somewhat positive light. While sincere, that is only part of my story.

Here’s my honest answer for, “how are you? These are some of my late night thoughts that loop in my head.

There is a heavy grief I carry around with me: the grief of the diagnosis, the grief of brain surgery, and the grief of exile. The hope of life being “normal” followed by the disappointment of a failed brain surgery, more complications, and then a second brain surgery with its continuing fallout. The grief has been hitting me hard. I’m sad for the life I lost and the future that will never be, I’m angry over that loss and I’m angry that I feel so off kilter. 

After my first surgery, I started therapy to talk through the trauma of the diagnosis and surgery. I learned that when someone is faced with a heavy medical diagnosis they go through the same stages of grief they would if someone died. Denial, anger, bargaining, depression, and acceptance.

1. Denial That gut wrenching feeling of shock. Not being able to wrap your head around it. Pretending it’s not there or not that bad and trying to convince yourself there’s an easy fix or maybe pretend it doesn’t exist.
2. Anger: I felt a little angry in the beginning, but I think I was in shock until I was wheeled into the operating room. Initially I felt like the rug had been pulled out from under me. But I’ve been feeling the anger more. I was told I would return to college and work after four months. I’m still waiting. It’s been four years and the path back is still not clear. So many “whys?” “Why is this going on so long?” When I had my second surgery the question was, “why do I have to go through this again?” “When do I get my life back?” I felt and still do feel anger at the medical establishment for how slowly things move and things getting missed. I am frustrated with the slow healing and my body that seems to have a will separate from my own. Wrestling with God’s timing being so different from my own. Deep in the late nights when my insomnia won’t let me sleep, all the questions, fears, and doubts come to a boiling point and I feel like I’m about to be crushed under the weight of it all. Why has this gone on so long? Where is the healing? Why are there so many unanswered prayers?
3. Bargaining I’ve definitely had my fair share of “I’ll do anything” and countless prayers of pleading “what ifs?” or “if only.” I could do so much more if I wasn’t sick.
4. Depression This one is a little tricky for me. This was my initial diagnosis when the doctors didn’t know what was happening so just threw that label on me. This one is harder for me to acknowledge, but come on, I’ve had two brain surgeries, it’s there.
5. Acceptance There are times when I feel like I’ve accepted this whole thing and I feel a sense of peace. This is my life now and I am establishing how to cope and live with it. I see all the blessings in my life and how the Lord has carried me through all these trials.

Something I’ve learned about grieving is that you don’t always go through the stages in order. Or you can work through one stage and feel like you have moved past it only to cycle through them all again. You will run through the cycle multiple times. 

Before my second surgery and before I knew the first one failed, my therapist told me that I hadn’t allowed myself to lament. That I needed to let myself feel the grief. She encouraged me to do what King David did and call to mind all the good things and the ways God has been good to me. The prophet Jeremiah also did this in the book of Lamentations 3:19-23,

 “I remember my afflictions and my wondering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet, this I call to mind and therefore I have hope: Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.

It’s hard for me to admit the struggle and the internal battle because I don’t want to drown in negativity and bitterness. That would be a pretty easy ocean to drift in. There are times where my faith is tested and times where I feel so weary that I feel I have nothing left in me. There’s a part of me I recognize as sometimes fronting it, that denial stage, and I just want everything to be what it was and “normal.” Then there are the moments of anger, when I feel the world moving on without me. 

I read a quote recently from C.S. Lewis,

“I sat with my anger long enough, until she told me her real name was grief.“

That was the lightbulb moment where I realized that this restlessness that I can’t quite put my finger on is grief. Grief over my diagnosis, multiple brain surgeries, endless recovery, all the fall out in my close relationships and grieving the life I lost to this illness. 

But I’ve also learned the Bible is a book of suffering. Oftentimes, we tend to focus more on the victory we have in Christ and the celebration and neglect the parts of suffering. Jesus himself was described as a man of sorrows acquainted with the deepest of grief. He cried out on the cross in his final moment,

“My God, My God, why have you forsaken me?” (Mark 15:35)

I’ve begun to try and model some of my journal entries like David’s laments in the book of Psalms. To bring my troubles and anguish to God. All of it. The hurt, the anger and sorrow, and then to write about what I know to be true of the Lord’s character. The tender mercies in my life. I’m definitely struggling. Adjusting my view on how my life would go and changing my expectations.  My schedule stays the same each week. Four days of physical therapy plus any additional scans or appointments. Then the rest of the week I am at home resting and managing my symptoms as they come and physically recovering from my PT workouts. I can feel pretty isolated and cut off from the “rest of the world.” I feel lonely and I struggle with wanting to do more, but still being limited by my symptoms. Sometimes, everything just feels monotonous, even my prayers. It’s hard to admit that. 

I realized I can’t keep waiting for some big shift or change to happen in my life. I feel like I’m always waiting for something barely in the distance that I can’t quite see that will change my life. I guess I’m starting to work towards the “acceptance” part. So, perhaps that is a prayer request.

Recently, I went to a concert and did my usual concert preparations by googling all the artists and listening to their music. I found a song that hit so close to my heart that I had to pause it and breathe. It beautifully and hauntingly articulates the sorrow and grief of loss. The struggle of believing, but lamenting the loss. The song is called, “Nowhere to Be Found,” by Australian Christian singer/songwriter Nathan Tasker. After the concert we were able to meet Nathan Tasker and talk with him about his song and the impact its made on me and my family.  

I took a fall with no safety net
I felt my face hit the ground
After a second to catch my breath
I felt you kick me when I was down

Losing a loved one is hard enough
Three pushed it over the edge
So I carried the footprints of my daughter and son
To the place where they say you live

But you were nowhere to be found
Nowhere to be found

When the long line of dinners came to an end
We made a meal of our own
Out of cold habit we both bowed our heads
And felt the silence of our home

Where you were nowhere to be found
Nowhere to be found
Nowhere to be found

Am I not shouting loud enough?
Is there more than the top of my lungs?
Oh I used to feel your love
Where has it gone?
Nowhere to be found

Now I look at the world like a crystal ball
Usually from the outside in
I see people I love get the life that I lost
And I try to be happy for them
But it feels like a town unacquainted with grief
Protected like a child in the womb
Oh but looking for you hanging around on those streets
Is like looking in your tomb

Where you were nowhere to be found
Nowhere to be found
Nowhere to be found
Nowhere

This song says everything I can’t. The parts of my grief that I am still processing and don’t have the words to describe. The doubts of where is God in all of this? The pain of watching those you love move on while you feel stuck and hollow. I love the part of feeling like you’re in a town acquainted with grief and the comparison of how looking for Jesus there is like looking in His tomb, where He was nowhere to be found.

There’s still an empty tomb and there’s still joy and new mercies that come in the morning. That is the pattern of lament. You address God, issue a complaint, a request, and then an expression of praise or trust in Him. We pour out our hearts – all our grief, anger, and sadness- to our God who listens and cares. We turn to him in our sorrow and then conclude with the hope of what we know is true of Him and His character. Lament turns us towards God while our grief and sorrow tries to pull us away. But, we know that God loves us and this life and its troubles are not the end for us.

Your Sister in Christ,
Shae