This job, the simple job of pretending we feel all right while hugging our spouses and kissing the tops of our children’s heads; of negotiating new doctors and treatment plans and insurance coverage and basically having to BEG for the basic care we deserve while burned-out advocates, as they occasionally must, slip away to their own pain-free worlds; leaving us as alone and helpless as the day we were born, already carrying this gene, already feeling the pain and screaming, screaming for it to stop. I know I’m not done with this battle. Because of my family, and that is the only reason. But I feel like I’m done fighting. Not even just for a “cure,” goddess forbid. But COMFORT. Security. A solid pain relief plan for when this monster rips apart my skull and twists my soul into a knot and won’t let go and won’t let go and WON’T LET GO WON’T EVER LET GO.