* Editor’s note: Erika Zak had been writing an op-ed for The Washington Post about her struggles with the health-care system when she died on Aug. 23. Her husband, Scott Powers, working with Post editors, completed her draft, a letter to their daughter, by drawing on her social media accounts and other writing. She was 39.
Remember when you were tiny and everything was thrilling and radiant? When you stared in wonderment at whatever new thing you just discovered? You felt as though you were the first one to see it — almost as though you invented it. It all felt like magic. And it was.
I had so many of those beautiful moments growing up. I have always wondered why, as I got older, it became a struggle to be brave and speak up the way I did when I was young. My voice became small; at times, nearly a whisper. Of course there were moments when everything felt magical again — like when I met Daddy and fell in love or made something beautiful through art. The biggest swell of magic came when I “met” you, sweet Loïe.
Daddy and I wanted a baby, and although we hadn’t been trying long, it felt like an eternity. One day I said to myself, “This has to be it. I know she’s in there.” I took a pregnancy test, and took another one just to be sure. I gave Daddy a little pouch with the tests inside. He opened it and looked up beaming. We danced a little jig in our tiny apartment.
Even before I realized you were growing inside of me, I began to feel a sea change. My voice grew more powerful. My body felt strong in ways I can’t explain. It felt as though I was fighting for something. And so you arrived perfect, pink and magical. We named you after an American dancer in Paris from long ago; a whirling dervish with a spinning technicolor skirt: brave, liberated and determined.
Three months later, I was holding you when the doctor called to say I had Stage 4 cancer. A tumor in my colon and more on my liver. On the day of my first chemo, I Instagrammed a photo of myself all hooked up and wrote: “Here we go magic.” I should have written: “Here we go poison.”
Soon days ran into each other. I told myself not to complain, joined support groups and raised funds to find a cure. But after seemingly knocking cancer down, it came back. I surpassed 70 rounds of chemo. New friends from those groups died. My daddy died. You — my baby — grew up and learned to talk and walk. I wanted nothing more than to give up and let everyone have their lives back. I cried out for the magic to come back.
Then, during what the doctor presented as a routine procedure, my liver was destroyed. With a large hole left in it, blood and bile no longer flowed properly, and I needed two drains protruding from my abdomen just to stay alive. Mommy’s skin turned yellow, it was hard to eat normally, I started to bleed more, and I saw my once-strong body slowly break down a little more each day. Still, every so often, we found some magic: I started an immunotherapy drug, and it worked.
As my cancer vanished, it became obvious I needed a whole new liver. It was my only chance. I fought to stay alive, but the world made it harder. A large insurance company initially denied a transplant, saying my case was not “promising.” They told me I had tumors where they didn’t exist, said I failed chemo when I hadn’t, argued that my liver failure was due to the immunotherapy drug that was actually saving my life.
With few options, I told my story to the media. After the insurance company approved my care, you, me and Daddy quickly moved across the country to wait for a liver. I told myself: “Get sicker to get better.” But just when I got to the top of the waiting list, after a year in Cleveland, the bureaucratic organ-sharing system knocked me down again. The message seemed to be that I wasn’t sick enough or that my history of cancer excluded me from a fair review. When I pointed out that they set up a new review policy that failed patients including me, they simply dug in their heels and did nothing.
And so my voice grew even louder despite my body getting weaker. A stream of magic and hope trickled in. People cared. The media cared. They covered my story about the broken transplant system.
I was vindicated knowing I could make some small difference for someone else. And also that maybe, after all the suffering, I deserved that new liver I thought was never meant for me.
Loïe, the day I was diagnosed five years ago, I wrote you a message telling you that I would fight for you and Daddy; that I wanted to be around to tell you this story has a happy ending. I am fighting with all I have, but if this story ends early, know this — I am with you always; even if you can no longer see my face or feel my hands through your hair. I am with you when you feel a warm breeze upon your sweet face. I am with you when you see a beautiful shade of light ocean blue. I am with you on that first day of spring when the flowers bloom and everything feels new and just right.
But even when you can’t find those things — and some days you won’t be able to — just know that I am here. I am protecting you, guiding you and sending you all the love I saved up my whole life just for you.
I’ve read about people who are almost at the end, who will try anything because it’s all they have left. I understand them now. I would do anything. Just make it appear; give me some magic back. Give me one last chance so I can start anew.
— Erika Zak died during liver transplant surgery at the Cleveland Clinic in Ohio. Scott and Loïe Powers live in Portland, Oregon.