And, of course, Koehler is part of the support system whose “love and patience have carried me through days when my own reserves were not enough,” Simon shared in her statement. While she takes medication to deal with the stiffness, the cumulative effect of the disease is more than just seeing overstuffed furniture as the enemy.

“It can bring anxiety, depression, exhaustion, and apathy,” Simon noted. “You can find yourself lying there like a starfish drying in the sun, arms pointing in all directions, while nothing inside is telling you to get up, read, watch, write, sing, call someone, or do much of anything at all.”

It’s not sadness or laziness that she’s experiencing, Simon shared; rather, “It is as though the part of the brain that sends out invitations to participate in life has temporarily misplaced the guest list.”

While some days she’s “so tired, I can’t get the day moving,” during others, noted Simon, “I am still writing, singing, imagining, laughing, worrying, remembering, and occasionally getting trapped in an overstuffed chair.”