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For years I had a print of “The Lady of Shalott” above my bed. It is one of my favorite paintings. The story it tells is based on Lady Elaine, the Lily Maid of Astolat. She fell in love with Lancelot, who didn’t know of her feelings. When she realized he would never love her in return, she mourned for eleven days before dying of a broken heart.

After her death, her father placed her body in a boat and surrounded her with lilies. He sent the boat down the river, where the waterway would pass by Lancelot’s home. When the boat ran aground at the bend, people came out of the castle to see it. Only then did he realize what had happened.

Her story is about heartbreak and regret. But just as much, it is about expectations. Elaine fantasized about Lancelot so much and loved him so intensely that she expected that he had to know. He didn’t.  His ignorance destroyed her and he never even knew it.

I find the harder aspects of my illness come from expectations. I expect to wake up in a functioning body. I expect to not be in pain all day. I expect my brain to work at the speed it used to. I expect people to accommodate me. I expect to be treated fairly. I expect to be independent. I expect to live the life I want. I expect that someday, I won’t always be in pain and I won’t need dozens of medications and I won’t be afraid to eat something outside of my home.  I expect these things.  I want them so badly it seems like it could manifest through the sheer force of my will.

I would be disappointed a lot less if I didn’t have these expectations. But not having them feels like surrender.

I have always loved Elaine’s story. I never thought I would also deeply mourn the loss of something I never even had.