Say More: At Last She Writes It

No. 31 | February 2025

Not all good

by Blakelee Ellis

It was July 2, 2000 and I was dying.

It sounds so melodramatic, but it’s true. I was 12 years old, unconscious and laying on my death bed. Doctors told my parents I would not survive the night. My parents called my extended family and they rushed to Primary Children’s Hospital to say their goodbyes. I remember sitting near the window of my hospital room watching the 4th of July fireworks across the Salt Lake Valley. My aunts, uncles and cousins came charging in with tears streaming down their faces. I greeted my family with all the joy I could muster. I was blissfully unaware of my dire circumstances and kept assuring everyone that I would be out of the hospital in just a few days. “I’m fine,” I kept saying to everyone, not understanding what everyone was so upset about. My mom says that after everyone had left, my dad sat by my hospital bed holding my hand with giant alligator tears trailing down his cheeks. He was an emergency medicine physician and understood completely how bleak the situation was.

I was diagnosed with acute, idiopathic pancreatitis. My pancreas, which is the organ that produces digestive enzymes and hormones, was severely inflamed without any known cause. A doctor once told me to think of my pancreas as a beehive. Normally, a beehive is calm while the bees fly in and out going about their business. But when someone pokes a beehive, the bees attack and all hell breaks loose. The working theory was that my common bile duct (the duct that connects the pancreas and the stomach) was blocked. As my pancreas produced enzymes, rather than traveling to the stomach to help digest food, they had no where to go and began to digest my pancreas. My pancreas was literally digesting itself. Again, it sounds melodramatic, but it’s true. The process was causing so much damage to my pancreas that fluid began to build up and my lungs began to fill with fluid. My pancreas was the beehive and all hell was breaking loose. This was a vicious cycle of enzymes, inflammation, fluid, more enzymes, more inflammation, more fluid and it was killing me. No matter what the doctors did, they could not get the beehive to calm down. Doctors continued to check the level of my digestive enzymes in hopes that the numbers would stop rising. Every hour I had bloodwork done. Every hour the nurses would come in with the results for my dad to see. Every hour he would cry.

My mom had called several friends in the ward to let them know that my prognosis was not good. Word traveled to the Bishop and he called a special ward fast. It was late in the evening, but those that were able joined together at the ward house. They came together as a community, to mourn for my family, to exercise their faith and ask for a miracle. They had a brief meeting where they discussed my circumstance, said a prayer as a ward and began their fast. They met 24 hours later to get an update on my condition and break the fast together.

The very hour that my ward broke their fast, my numbers stopped rising. The doctors had never seen anything like it. It could only be described as a miracle.

Then the hard work of healing began. I had surgery and a total of a month spent in the hospital. When I was discharged I was 5’6” tall and weighed 85 pounds. I was not allowed to eat solid food for 3 months and had an N.J. (nasal-jejunum) tube for 6 months to receive all the nutrients my body needed to survive. When I was finally cleared to eat solid food I was on a non-fat diet for another 6 months. After almost a year from my initial diagnosis, I was cleared to live my life as a normal teenager. On the way home, I asked my mom to drive me to my favorite fast food restaurant, Scott’s, and I ordered a HUGE double cheeseburger and fries to celebrate my return to normalcy.

I don’t know whether or not God actually saved me. I don’t know if I’m alive because of a miracle. But I do know that I met Jesus while I was laying there in that hospital bed. In all my agony, I found a Christ that could succor me, that would hear me and hold me while I cried. My belief in Jesus was born in that hospital bed while I healed and learned to live again.

My parents told me that I was spared for a purpose. “God kept you alive,” they said, “so surely God has something important for you to do in this world.” It bolstered my parents’ faith in a just God, a God of miracles. For me, it cemented the idea that God has a plan for each and every one of us. For my ward members, it served as evidence of modern day miracles and for years members of my ward would talk about the miracle of me being saved, sometimes even from the pulpit.

It is June 18th, 2023 and my 6 year old nephew, Lucas, is diagnosed with leukemia.

We rally together as a family. We plan child care and a meal rotation schedule. My father-in-law plans a dedicated family fast. My nephew is mentioned by name in every prayer. Everyone seems to have a plan of action, a way to gain God’s good favor to save our sweet boy. I play along, but deep down inside, I don’t know anything anymore. I don’t know about miracles from God. I don’t now if God even intervenes in our lives the way I was taught my entire life. I know that my own prayers to God change me, but I don’t know that my prayers on another person’s behalf actually “work.” I don’t know that fasting and praying for Lucas will actually help his little body survive chemotherapy and fight the leukemia. I don’t understand the workings of the universe, why one child is saved while another dies. I refuse to believe that an almighty God would let one child die for a “purpose.” The God I’ve encountered in my life is a God of divine justice. A justice that never causes suffering, only alleviates it. God gives us what we need, not what we deserve. I believe that God is wholly good and so no bad thing can come from God. So these platitudes we spout, where “everything has a purpose,” and “it’s all a part of God’s plan,” are no help to anyone. No suffering comes from God. It is a product of the world we live in. It is what comes with living in a mortal world in a body of flesh and bones. So, I decide that maybe God is not involved at all.

After 23 years, I still don’t understand why I survived my illness. I’m no closer to knowing my purpose than I was when I laid in that hospital bed.

My prayers are different. Less verbal and more contemplative. I believe that prayer is a way for me to connect with God. It’s a way to access the divine presence that is constantly available. I just have to breathe, focus and open my heart. Prayer can change me, but in the lonely places of my soul is a belief I keep hidden: I no longer believe that prayer changes outcomes. I cannot fast for another, not even for someone I love so much. The ritual is empty for me now.

Time moves on. There is so much heartache for Lucas. So much medicine, so many procedures, so many hospital stays, so much isolation. He survives and somehow manages to thrive. Cancer becomes the family’s new normal and suddenly, he has made it through a year. He is in maintenance phase, which means less intense treatment, but he is not out of the woods yet. His treatment will take another whole year before the doctors will claim he is in remission and cancer free. We hold our breath. We are optimistic. Everyone believes in miracles. I hold on tight.

It is January 6th, 2025 and Lucas has relapsed. The cancer is back.

There are cancer cells in his central nervous system. He will receive even more aggressive chemotherapy and radiation to his brain. 50% survival rate. The toss of a coin.

I’m folding laundry when Lucas’ mom sends out a text on the family message chain:

Today I heard the absolute scariest words from the doctors, “I want you to understand that this is scary, it is risky and he could die from this. We are goin into it with a lot of hope and the plan to cure him completely. There’s just a lot we don’t know.”

The reality of his death has been skirted around, but never been explicitly named or brought up. It’s knocks the wind out of me. This feels hopeless.

My sister-in-law immediately responds:

We have been praying for you guys with all the faith we have and have put you on the temple roll.

My husband comes upstairs to help me fold laundry and finds me hiding in the corner, crying. If I’m honest, sobbing and hyperventilating is a more accurate description.

I think he knew the relapse is why I was crying. Of course, the very clear danger of Lucas’ death was affecting me. It’s not the entire story, though. I was grieving my lost certainty in God’s “plan.” When my sister-in-law got news of my nephew’s relapse, she knew what to do. She believed that if they prayed hard enough, long enough, with enough faith, perhaps the outcome would be different. Not only that, she had put his name on a list for strangers to pray for him. She had a very tangible plan because she believes that God has a plan. I, in stark contrast, felt completely hopeless. Because I don’t believe there is a plan. When is no plan and there is no meaningful way to help.

I haven’t described my faith journey as a “faith crisis” for a few years. Not since the beginning of my deconstruction. In that moment, I was in complete crisis.

All I kept thinking was,

We are alone. We are at the mercy of the universe and whatever disaster it throws our way.

He hugged me and tried to piece together the words I was saying through my melt down.

“She has a plan. She has things she can do. They are praying for him. They put his name on the temple roll.”

He was confused,

“and…..that’s a bad thing? You don’t want anyone praying for him?”

“Of course not,” I reply.

“I just wish I still thought those things made a difference. Then I would have something immediate I could do for them. I miss that. I miss that certainty.”

He slowly nods and after a pause he says,

“You always say that your faith journey has been a good thing. That it has led to so much growth and different understanding and greater love. But……maybe it’s not all good?”

What do you do when you don’t believe God influences outcomes anymore? What do you do when you don’t believe God takes notes of your faith and decides you have enough to stop a tragedy from happening? Where do you go?

Yes, God manifests their love and presence and prayer is a way to access all that goodness. But is love enough? Is it enough to know that I can access God’s love and so can others? What good does that do? How does that help me help them?

Yes, prayer can be a way for me to align myself with God, but I don’t just want to align myself with God. I want to believe that the prayers I’m saying actually make a damn difference in the world. I’m afraid it all makes no difference at all. It’s a horrible realization when the prospect is so bleak.

So, what do I do with that information? How do I make prayers meaningful when I no longer believe that they have the same kind of purpose? I guess it means that it’s up to me with all my human flaws, to come up with a plan and try to make a difference. It’s a terrifying prospect.

I send Lucas’s mom this message:

Hiya, sister. My heart is broken for you and your family. I wish so desperately there was something I could do for you.

These are the moments when my faith deconstruction is the hardest because I don’t know if prayer works. I don’t know how involved God is in the tiny details of things. I’m struggling believing that God orchestrates things like cancer in your sweet boy or tragedy for anyone. I have a hard time believing in a God that saves one child from cancer, but lets another die. I think it’s just the natural consequences of having a mortal body in a mortal world. I believe that God is goodness and wholeness. I believe that you praying is an opportunity for you to open your mind and heart to the peace that is available from God’s never ending presence. But I don’t know how praying for someone else works, if it even works. So you won’t hear my saying that I’m praying for you or that I’m putting your name on the temple roll. I believe that me witnessing your pain, being with you through it, mourning with you might just be better than prayer. So this is my promise to you that I’m here to be with you in the tough moments.

I am sending all the love and good energy I have inside my body to you and your family. I’ve had unexplainable things happen in my life, things that I can only believe are glimpses of the divine and God’s hand in my life. So, somehow maybe miracles happen. I’m hoping and dreaming for miracles for you all.

You can handle anything that comes your way. I know you can. It’s gonna hurt like hell, probably in new and unexpected ways. In ways that you never thought you could hurt that much and physically survive, but you can.

Please remember, I am at your beck and call. Whatever you need. I’m weeping with you. I’m here. I love you all so much.

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