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How I'm Finding Beauty in the Unknowns of My Illness

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Why do I find the unknowns of the universe so beautiful, but the unknowns in myself so ugly? I can look into the sky and see stars and galaxies I can’t even imagine, but when I look at myself I just see tragedy. I see the needle mark left on the crook of my elbow, the bags under my eyes from sleepless nights, the pain on my face from another day with disease.

I am a mystery. They have no words for what is wrong with me. There’s no medical textbook with a glossary that includes my picture.


I’ve been shipped from doctor to doctor, state to state, treatment center to treatment center. I know the exhausted look on nurses’ face when they see me in the exam room again. The look says, “I’m tired of you. I’m tired of your problems. I’m tired of looking for answers we can’t find. Give it up.”

And maybe they’re right. Maybe I should give up, give in. Wallow in a disease I can’t even name. Maybe I should believe I’m confusing and tiring.

But, you tell me, will we ever stop looking into the depths of the ocean? Will we ever stop searching into the sea of stars? Because I hate to be the one to say it, but I am much more interesting than the blue ocean water, or a starry night sky.

And I know I don’t make any sense. I know doctors are baffled, and nurses are irritated. But I also know I am sick, that something is wrong. And even if I never find out exactly what it is, I will never stop searching.

If I can find the unknown creatures in the rainforest to be interesting and wonderful, then I should be able to think the unknown parts of my body are interesting and wonderful too.

And maybe the answers don’t matter so much. Maybe the names and labels aren’t as important. Maybe there is a lot of beauty to be found in the questions.

Surely, there are a lot of smiles to be shared with nurses and techs and patients. There’s plenty of laughter when my mother races me down a museum hallway in a wheelchair. And I can do all of those things without having a single answer.

Maybe learning to swallow uncertainty, to lay down in bed with fear, to embrace struggle, is the most important thing. Even more important than the knowing. Maybe learning to live in the unknown, to be present in the questions, will be the most beautiful thing I can do.

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Thinkstock photo via den-belitsky.

Originally published: September 25, 2017
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