Congenital Glaucoma

“Congenital Glaucoma,” said the doctors to my parents as they held their newborn baby.

The year was 1996, and my brother had just been born with opaque, milky blue eyes.  Glaucoma. An eye disease usually associated with the elderly, but in my brother’s case, congenital. From birth. A condition that affects only one in every ten thousand infants. A surprise of the worst kind.

The surgeries began immediately. So many, and so often, that they quickly became a blur — over forty before he reached the age of two. I was four years old when my brother was born, and the surgeries are my earliest memories. I remember them in flashes, as if they were scenes from a movie I saw long ago.

Morning drives down the freeway to La Jolla, my dad gripping the steering wheel tightly, face devoid of any emotion. My mom sitting in the passenger seat, holding back tears. The tense elevator ride to the operating room on the fifth floor of the Shiley Eye Center. Harsh fluorescent lighting and the smell of band-aids and gauze. Nurses putting wristbands on my newborn brother, wheeling him through large swinging doors into the cold operating room. The heartrending grief of my mom as she watched her baby being carried away from her. Crying. Waiting. Seeing my baby brother lying in a hospital bed, still asleep from the anesthesia, with large plastic eye patches and medical tape obscuring his face.

The perpetual surgeries left my brother’s eyes sensitive to light, and for years we kept the windows of our apartment covered with heavy blankets. The darkness consumed our lives entirely, and the apartment became a dungeon of grief. How my parents made it through those years, I’ll never know. They had only been in the United States for a few years and spoke very little English, making their already terrifying ordeal even worse. How I made it through those years, I’ll never know. I didn’t fully understand what was happening. I only understood the constant, devastating sadness.

As the years passed, the situation improved somewhat. The doctors were able to save some vision in my brother’s right eye, and the surgeries began to slow down. My parent’s English improved, and the visits to the surgery room were replaced by visits to support programs for parents of children with disabilities. They provided some semblance of hope, I guess.

But the shock and the grief never went away for my family. Instead, as I entered my teenage years, they grew into something far worse: a complete lack of emotion. We built walls around ourselves, walls so high that we stopped showing any emotion for fear of appearing vulnerable. Walls to protect us from the harsh realities of congenital glaucoma: that my brother will always be legally blind, that he’ll never drive, that it will be difficult for him to ever be truly independent in life, and that what little vision he has he will probably lose one day.

Later, therapists would tell me that what I went through as a child and teenager is called “emotional abandonment.” The result of exposure to a prolonged lack of emotion. It’s the reason why, as an adult, it took me years of therapy and soul-searching to fully understand what had happened to my family, to understand what happened to me, to understand why I’ve had to fight so hard for my self-confidence and inner peace. To figure out why it felt like the walls were caving in around me when I closed the door to my room at night. To understand why I have such a hard time enjoying myself, why I feel so guilty every time I drive my car, or ride my bike, or see a beautiful sunset. Why I feel so guilty every time I do something that I know my brother can’t.

I’m not sure what any of us are supposed to have learned from this experience. We’ve found no closure, because there is no closure. It’s an ongoing pain that can never be resolved, only accepted as a fact of our lives that is woven into the fabric of our realities. There’s only one thing I’ve really learned for certain:

Don’t ever take your eyesight for granted.

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