By Courtney Lund
I didn’t think I’d graduate. Of course, I hoped I would, like every other eager teen that ships off to college. But things happen. Really big things that can, you know, change your life, forever.
When I was nineteen, a sophomore at UC Santa Barbara, I was given some news. Not just any news, but big news. My parents called me on a normal Thursday afternoon and told me that my only brother, Gavin, at four months old, was dying. He had been diagnosed with a rare terminal illness, called Aicardi-Goutierres Syndrome (AGS), with forty known cases in the world. It took two and a half months to even get a diagnosis.
“We’re putting him in Hospice care,” Mom said. “The doctors have given him a year to live.”
I remembered the conversation like I remembered a lot of unfortunate events that have happened, like being stung by a bee, getting my period for the first time and so on. But this was different. This was a punch in the face; worse, it was like being kicked off the planet.
A week later I found myself back where I started: home. I was now a college dropout with a terminally ill brother, and a family that was falling apart because of it. Ambiguous chaos was what the whole scene looked like. There I had been two weeks earlier, trying to figure out ordinary existential questions like, what was my place in the world? What career path should I take? But this – this threw me. Now, I found myself cradling a sick baby, picking up empty bottles of morphine from the counter, opening sympathy cards, and finding Tupperware full of food in the fridge that people had dropped off. I performed a sprint to answer the question that tormented me: how was I going to love a dying baby? How could anyone truly? Love, the most deepest, sacred act, that we do out of faith, was going to be stripped from me in under a year.
Gavin’s disease was scary in those early days. It would show up for weeks at a time, causing high fevers, jitters and an upset stomach. AGS triggered brain calcifications, causing permanent brain damage, in which Gavin would shriek uncontrollably, turn a pasty gray, and ogle his eyes in distant directions. Mom called these episodes, visits from the Monster.
As time went on, I eventually returned to college and even graduated. Gavin was taken off Hospice on his first birthday. And next month, he will be seven years old. Although he is physically handicapped, meaning, he cannot eat on his own, walk, talk, crawl or ask when he has to pee. He is a pleasure. He is inspiring.
Though it was not initially easy, I have learned to love him in the deepest way, much deeper than I have ever loved myself. He has inspired my boyfriend to go back to school to become a Physical Therapist. He has brought our family, my two other sisters, my mom and dad, and me closer together. And above all, he has moved me to the core, to live unapologetically and passionately. In two weeks I will be finishing up my three-year stint at an MFA program, where I have written my first book, Monster Love, which is a moving account of my journey with Gavin. In two weeks I will be walking across the stage with a new confidence, one much different than I had four years ago. A belief that one story can change the world, because, ultimately, that’s all that ever has.