The Hard Road Beneath Sparkling Water

In the heat of the late morning, we crossed Utah on I-80, and on this straight stretch across the salt flats, watched the shimmering pool of a mirage on the roadway ahead of us, a false promise of coolness and quenched thirst.

How real it looks! There are reflections of land and sky. With a little imagination, you could visualize children flocking to splash in the puddles, or fishermen floating on boats, casting their lines.

Moving my sister to safety in the group home turned out to be a mirage. We all saw the possibilities, the companionship, the fresh air, the exercise, the nurturing -- we saw them as if we could have held them in our hands and passed them around for everyone to look at and rejoice.

My sister's road was quite different. Though she had been moving towards acceptance of her new home, the discovery of the lump in her breast and subsequent visit to the doctor proved too much. Jan stopped eating or drinking completely, refusing to cooperate, and had to be taken to the hospital for rehydration. People think "developmentally disabled" means "stupid," which Jan is definitely NOT. She knows that a lump in the breast means "breast cancer" and she knows that a surgeon means "operation." She's had the input of television as her entertainment for the past 30 years. I suspect that she dealt with the terror in the only way she knew -- to withdraw: maybe the Terror will pass me by.

In the hospital, re-hydrated, she seemed to rally again, even eating some breakfast. But by midnight, she'd retreated into her shadow world even more deeply (more safely) and could not be roused. They took her to the Intensive Care Unit and put her on a ventilator because her breathing was so shallow.

It wasn't supposed to be like this. She was supposed to get used to the new place, and be taken out to hear new and wonderful things, go to the store with people, the fair, concerts and places where she could exercise a little. Get three square meals a day and put some flesh back on her starved frame. In our mirage, I'd get to shop for things for her for Christmas, silly, useless, nice things that our mother would not have tolerated. Pretty clothes. Soft, soft flannel sheets and a girly comforter to keep her warm. I'd visit her as often as I could afford to go back east, without our mother diving in to keep us apart, able to hug her and hold her and shower kisses on her.

Yesterday I cried for our mirage almost all day.

This morning, her doctor called me from the hospital, and told me she was perkier today, and that they thought she could be taken off the ventilator. "She's probably had a small heart attack," the doctor said, "but she seems to be improving." I made sure the doctor knew that Jan hadn't had any physical exercise at all for nearly two years -- except for moving from her chair to the kitchen table (about 10 steps) or to the bathroom (about the same). Her system is unprepared for Life.

I don't know if she'll survive this. I pray that she will, and that our mirage will someday be a reality.

About two hours after the doctor called me, Jan's caseworker sent me an email. Jan was off the ventilator, and having had the tube removed from her throat, was once again vocal and let the entire ICU nursing staff know that she had fired them for incompetence.

Everyone who knows Jan gave a hearty cheer.