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Hope Precarious
Chronic illness changed my understanding and experience of hope. What if it’s more about trust than anything else?
More than 30 years of my life have been lived without chronic illness, and before my health status changed, I didn’t think very deeply about hope. Even through life’s darkest moments, the writer in me just saw “hope” as a four-letter word that felt fantastic and grandiose, like the best fairy tales. After all, its very definition is what the best stories are made of: expectation, desire, trust.
In the past few years though, hope has become more than just a little word. Before my diagnosis, there was no crystal ball to tell me how my relationship to hope would change — and how it would help me see that it’s both journey and an active choice.
All the time
Before trigeminal neuralgia (TN), I had a simplistic understanding of pain, forget about constant pain. How could I understand that pain could be relentless, intense, and without end? Though I lived with skull-crushing migraines since adolescence, they weren’t constant. There were days and weeks of relief, which was enough contrast to allow me to view pain as two poles: either you are in pain or you aren’t.
That either-or dynamic is what most people are raised on. We believe that pain is finite, that it will eventually dissolve and our relief…
