House | Lupus Detention

I am grateful for the guards. But I do not trust them. You might be wondering: Why stay? Why not escape?

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.

One more day survived is one more day the warden didn't win. Disclaimer: This blog post is based on personal metaphor and experience. Lupus affects everyone differently. If you are struggling with a chronic illness, please consult your rheumatologist or a mental health professional. lupus detention house

Living in the Lupus Detention House has taught me a brutal kind of grace. I have stopped fighting for the parole of "being cured." Instead, I fight for commutation —the reduction of a sentence.

For the uninitiated, Systemic Lupus Erythematosus (SLE) is an autoimmune disease. In plain English: my immune system, the very guard dog meant to protect me from intruders (viruses, bacteria, infections), has gone rogue. It can no longer tell the difference between a foreign invader and my own tissue. I am grateful for the guards

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.

There is a specific kind of exhaustion that comes from living in a detention house. Not the kind you see in movies—with orange jumpsuits and metal clanging—but the kind that lives inside your cells. I call my body the Lupus Detention House . Why not escape

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.