What would I have done if, as a spotty, self-conscious, fourteen-year-old, a brain tumor had been discovered hiding just below my braids?
I’ve no idea, but my friend Grace doesn’t have to imagine.
When pain paints over every inch of our lives, how do we carry on? How do we believe and trust God in our darkest moments?
Grace’s story is honest and vulnerable. Not written from a pain-free happily ever after, it’s the real deal. She is one of the most beautiful, creative, and strong people I know and I’m thrilled you get to meet her.
“He gives power to the faint, and to him who has no might he increases strength.” — Isaiah 40:29
September 28th is a tough day. It marks the start of a clock that runs without rest. Its passing this year stood as a reminder that it has been 6 years since my first of five brain surgeries. In those 6 years, each and every single day has been touched in part or in full by headaches and prayers without number that have come and gone seemingly unanswered.
For the majority of my life, I have felt a compulsion to hide away the details of my story. Even those who know me well may only know that I’ve had a handful of brain surgeries, and not much else. For so much of my life I have felt shame surrounding the topic. I am by nature a private person and somehow I felt that holding back my story was “in the best interest of everyone.” Or, if not an honestly benevolent motivation, then at least the easiest route.
I’m not sure why I feel this need to hide from the world in this corner of my life. Why, when I was 14 and doctors first found the brain tumor, I left school for two weeks without telling even my closest friends where I was. Why, when I had my first brain surgery in 2011, I left the University of Kansas where I was attending college without even telling my roommates what was going on. Why, even now I still feel the need to pretend I’m not having a headache every day. To hide away my pain.
But not too long ago, I felt God’s calling to act in faith even before I feel ready to do so, which for me means telling my story and believing beauty and hope will come of it.
Thirteen years ago, a tumor was discovered in my brainstem. I have had five brain surgeries since then, all of which took place over three years. The last four of which took place over an eleven-month span, with surgery number five less than four months before my wedding day.
Surgery one, in 2011, was to remove part of the tumor that had been growing, causing my left eye to be in constant double vision and my hand writing to change drastically over several months as my brain struggled to communicate to my hands.
Surgery two, at the end of 2012, was to remove a chiari malformation (a condition caused by my tumor pushing part of my brain into the spinal canal) by removing the small parts of my brain being misplaced as well as parts of the skull that were constricting that area. Due to the trauma of these first two surgeries, I developed hydrocephalus – a condition in which cerebral spinal fluid pressure cannot be properly regulated in and around the brain.
Surgery three, in 2013, was to place a shunt in my brain behind my right ear to drain the CSF that was building up, causing the pressure in my brain to more than double that of a normal adult.
Surgery four, one month after surgery three, was to replace part of the shunt that had malfunctioned.
Surgery five, at the end of 2014, was to place a second shunt on the other side of my head as we learned that the location of my tumor caused a disconnect between my left and ride sides, and so the first shunt had only been draining the left half of my brain.
Every single day since my first brain surgery I have had intense headaches for a major part of the day, if not the whole day. That’s exactly 2,205 days straight of headaches, many of which just blended from one day to the next without relief.
Recently, one of my oldest friends, Sarah, called me out of the blue and asked if she could pray with me daily for 60 days specifically for my healing. She had no idea that six years ago my cousin, Caroline, had asked to pray with me for 60 days for the same thing. She had no idea that my husband, Dan, and I had decided, two days before Sarah’s call, to pray together daily until our third anniversary. Three times in which people near to me felt called to pray at such lengths for the same sole purpose.
One might think that I would jump at the request to pray together in this way for healing from pain that touches everyday. But if you have long-suffered, you know that it is not a physical pain alone – it is a spiritual pain as you daily cry out to the God of miracles, yet your miracle doesn’t come, and it is also an emotional pain as you watch your suffering cause suffering in those that you love most.
By the time of Sarah’s call, I was just beginning to claw my way out of a spiritual slump. A slump in which I had not only stopped praying for my healing, but stopped praying all together. My husband, Dan, had taken up the burden of praying and believing for healing for the both of us. He came into my life right when I had just about given up all hope, right after surgery two.
Allowing him into the pain of my circumstances was one of the hardest things I’ve ever done, and he’ll tell you he had to fight every step of the way into it as I tried to keep him out. For anyone who knows Dan, you know that he has the spiritual gift of hope. You will also know that he is a man of great strength, physically and spiritually.
By the time I started truly facing the Lord again this past fall, I had seen my husband’s hope and strength growing weary from my pain. So when Sarah asked to pray with me for 60 days, it was my greatest fear staring me in the face. It was allowing someone into my pain.
It was actively stepping into a hope that could end in something more painful than even the headaches – the doubt in God that comes with unanswered prayers. Despite my fear, I cautiously agreed to take on this season of directed prayer, knowing that I would be facing all of my pains head-on – physical, spiritual, and emotional.
Those 60 days transformed my view of God, which had slowly and unbeknownst to me taken on untruths through years of suffering and turning away from His presence. Lies that embedded deep in my spirit – God is cold and distant. He has left me here alone in my suffering. He is punishing me for my sins and unbelief.
I chose to dig for those lies and pull them to the surface, an agonizing and emotional process. I cried out, allowing others into the gritty details of my imperfect story so that they might share in my burden. I began to see truths again – God is near and loving. He is compassionate, ever-present, and desires my wholeness. How healing for my spirit to worship in the fullness of his loving presence again!
The morning after the 60 days of prayer with Sarah, my husband, and all the family and friends who joined in that season, I woke up with a headache. And not just a physical pain, but all the spiritual, and emotional pains that come with it. I felt my world begin to turn in on itself and a lie started to play itself on repeat in my mind – you weren’t healed because your faith is not strong enough. You still have a brain tumor, and it’s your fault.
I felt a desire to steel myself from that which I cannot bear or understand. To return to my life of pretending to the world and even myself that I am not in pain – to put my head down and walk on. My fear told me to hide. To doubt that I will ever be healed and to simply bear my pain silently. My fear told me to stop praying because God clearly doesn’t care and all prayers said up to that day had resulted in nothing but more pain.My fear told me to stop praying because God clearly doesn’t care and all prayers said up to that day… Click To Tweet
For at the height of suffering, the world feels like it’s folding in upon itself. Pain paints over every inch until there is nowhere to go that is free from it. And as we focus every ounce of mental capacity on continuing to move forward, we become most susceptible to the enemy and his lies sneak their way into our heart.
Truths that are clear in a right mind become tainted and unsure. The knowledge that God is good feels more like a mockery than a promise and the road between the head and the heart becomes impassable.
But even in the midst of the all the pains I felt on the morning of day 61, my newfound grasp on the Truth of God’s character kept me from turning inward again and returning to the steeled shell that was once second nature.
Instead, I made a new vow to reject fear and lies. I made a vow to hope. To believe that God is who He says He is.
So I pressed into the goodness of Abba’s presence and held onto two words – hold fast.
For when I am in pain, I have found that a mantra on my tongue breaks through in a way that good theology and the most thoughtful manifesto never can.
HOLD FAST.For when I am in pain, I have found that a mantra on my tongue breaks through in a way that good… Click To Tweet
These are the words that bring sanity and bridge the broken road between my head and heart. When I can’t muster the faith to speak anything else, these words remind me that when the waves rise higher I must dig deeper into that which anchors me.
These words are the connector to the truths that I doubt when my world folds in.
Hold fast, you are not forgotten. Hold fast, He is a loving Father. Hold fast, His promises are true. Hold fast, this will not be forever.
If you’re reading this, I’m bringing you into my pain not because I want to extend my suffering to you, but because I want to bring you into the promise of His goodness. I don’t just want to tell the story at the tidy end, with a bow and encouraging Bible verses thrown in. I want to tell the story at the height of its mess so that you might be a part of the beauty found and walk with me into victory.
And I want you to do the same in your story and your suffering. Because I believe that there are more of us in the world that live in the “not yet” and as a body of believers we have not done a good job at walking alongside one another, acknowledging the levels of pain and beauty that exist there.
Whatever your suffering looks like – I come against the lies that invade your heart when pain paints over your world.
You are not alone and you are not forgotten. Hold fast, good is coming.You are not alone and you are not forgotten. Hold fast. Good is coming. Click To Tweet
At 14, Grace Casey received a concussion that lead to the development of a benign brain tumor. By the time she was 21 years old the tumor had grown, and affected her vision, dexterity and balance. Over the next four years Grace underwent five brain surgeries.
Today Grace suffers from daily headaches, “but lives a normal life by the grace of her Abba Father.” Her prayer is that He would fully heal her from headaches on this side of heaven.
Grace describes herself as a “wife, a collector of experiences, a seeker of adventure, a maker of images, a dreamer of dreams, an enthusiast of people & a brewer of coffee.”
She works as a freelance graphic designer with Grace Casey Creative and with Angel Oak Creative (marketing for nonprofits) in NC. Grace lives with her husband, Dan, and their Australian Shepherd, Nēko.
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