without the mercy of
your eyes your
voice your
ways(o very most my shinning love)

how more than dark i am,
no song(no
silence ever told;it has no name–

e.e. cummings

There is a nurse at CHLA who has known Jordan for several years now. Her name is Barbara, and she is one of those beautiful souls who give and give and give to their patients, to the point that you wonder when/if they have a life of their own. We love Barbara. She provides great guidance, loving care and apt tactical support, wrangling doctors and specialists. It was no surprise to us that she was the first to arrive on the scene this morning after we put out a plea for advice.

Barbara stood next to Jordan’s bed with us, admiring her and wondering where to go from here. Together, we discussed the conflicting opinions of the doctors and tried to take stock of the challenge. Finally, it was Barbara who made the most sense out of what we were trying to understand. She said, “Jordan never does anything conventionally. She’s giving us a unique challenge. The trouble is, even when she’s not well she lulls us into believing she is healthy.”

She’s exactly right on both counts. Jordan is never conventional. Why should her illness break the mold? And we are so accustomed to her strength, vitality and ebullient charisma that the warning signs of illness are often overshadowed. We are lulled by her personality, which for the moment is absent without leave.

While there has been progress in the last 24 hours, there is no real diagnosis. She made some visual responses today. When one doctor asked her to wave, she cautiously raised her left hand. She could not raise the right. But at least she responded.

It’s difficult to celebrate the progress because she seems far, far away. Though I realize this will sound harsh, the body in the hospital bed is more a zombie than it is Jordan. We can’t help feeling that she’s trying to break free–she’s trying to push the body snatcher away–but she can’t. There is a look of resignation in her eyes, the same look you may have seen in Alzheimer’s or stroke patients. It is a look of suppression. It is a look of wanting, a sense that underneath the surface they are screaming to you, but the body won’t let it out. It is heartbreaking.

While she sleeps, we are lulled. We look over to see her resting and we take comfort. When they try to examine her, we are amused by her stubborn resistance, her repeated attempts to pull the covers back over her body. That’s her strength. That’s what we’ve come to love and respect. But then she wakes. And the saddness of her eyes breaks us from our false sense of confidence.

Of particular concern is the length of her absence. She’s never had these symptoms for this long before. We keep waiting for her to turn a corner (and we sense that she keeps trying to turn that corner) but it hasn’t come. We hope she’s merely traversing an abnormally long city block and that she’ll head back once the skyscrapers clear.