We are serving a life sentence. But we are not dead yet. And as long as my heart is still beating—even if it is beating out of rhythm due to lupus myocarditis—I will be scratching tally marks on the wall.
So, I am locked inside. The warden is my immune system. The crime? Simply existing. In a traditional detention center, you know the rules. Don't fight. Don't run. Do your time. In the Lupus Detention House, the rules change by the hour. lupus detention house
Yesterday, I was granted "yard time"—I went for a 20-minute walk in the sun. Today, because of photosensitivity, the sun is the enemy. The fluorescent lights in the grocery store trigger a migraine. The meal they serve (a delicious, healthy salad) contains alfalfa sprouts, which can trigger a flare. We are serving a life sentence
I have learned the power of "Spoon Theory" to explain my daily energy ration. I have learned that "no" is a complete sentence when the warden demands too much. I have learned to find a strange, defiant peace in the quiet days. So, I am locked inside
Then there is Prednisone. Prednisone is the violent guard. It breaks up the fight, yes, but it also trashes the cell. It makes my face moon-shaped. It makes my bones brittle. It gives me the energy of a cornered animal at 3:00 AM, followed by the crash of a hostage negotiator who failed.
When you look healthy on the outside, but your kidneys are staging a revolt on the inside, people don't see a prisoner. They see someone who "doesn't look sick." They see a lazy person who cancels plans. They see a flake.
