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Sarcoidosis has taught me a few things. It has made me entirely and completely aware that life is fleeting and fragile and in need of significant care. Life is meant to be nurtured. It is meant to be treasured in ways far greater than gold.

Life can really only be lived in one way because to live is so vastly different than to exist. Life is meant to be raw, to stripe us bare of our defenses. We cannot experience the deepest loves and greatest joys when we are guarded, as this keeps us separated from the intensity of these emotions which places us apart from others even in the smallest of ways.

To truly live is to embrace being vulnerable. It is to accept this as strength rather than weakness. We cannot live with passion unless we make room for utter and complete powerlessness. My disease has taught me that what I always thought of as strength, things like power and determination and grit, can actually make us weaker in the long run. Real strength comes from letting go, letting go of self protection and laying ourselves bare to unrefined emotion. We cannot know a true love for life any other way. It must be complete and it must be without reservation.

This is not easy though, to lay ourselves bare, because we also know that life can be cold and cruel and filled with very dark sorrow. But, my disease has actually taught me, although still a bit uncomfortably, that this is actually the point. In order to know life, to understand it, to embrace it fully, we must live on the edge of despair. We must allow for the possibility of great loss. The reward for navigating utter tragedy in the depths of grief, is to know that you have lived. It is to know that you understand the brilliance of life’s bounty in a way that can only be described as perfection because it means you have understood love as it is meant to be.

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