Like A Bird On The Wire

Entry 1     9:27 a.m.

Jenny is breathing, seemingly more strongly and regularly than yesterday. I am spending time, a lot of time, looking at pictures of our family in younger days. I wish there were a better word than bittersweet to describe the taste in my mouth, the pain in my heart.

I miss her gentle loving hug upon waking, an embrace I haven't felt in years. I miss the way she would look at me tenderly as I held our babies, or soothe me in my sorrow.

I am living my life truly like a bird on the wire these days, and with all the precariousness that implies. I love Jenny fiercely, deeply, truly. I see things that we would want to talk about and we never will again. Things to laugh about bitterly-like the terrible idea of making Brent Jones permanent superintendent.  Instead, there is a vacuum. No shared experience, no one to confirm the reality we shared through it all. I have never yearned for someone so grievously, never felt so alone in all of my days.

Entry 2    12:27 p.m.

I remember seeing pictures of Karen Ann Quinlan in a persistent vegetative state. She was the totem of the right-to-die movement in the 1980s. Seeing Jenny evokes Quinlan's image. It's a stark change from the beautiful vibrant woman of memory. I was up with the nurse evaluating the pressure sores, the unavoidable wounds that are spackled in places on her body. We turn her regularly, put her on the most comfortable bedding, and still she has them. More will accrue the longer she lingers here with us.

She has lost any remnant of body fat, so absent now she looks like she is a mockery of a 12 year old girl. Her eyes are fixed, like those of a dime store doll, lids allowing just a slitted portion of iris to be seen. Edema has each lower leg, ankle and foot easily two times larger than normal. 

Meanwhile, her circulation is so poor, she is purple and blotchy all over. Her arms are across her chest, stuck there like they are held fast by springs. 

Her mouth is dry, no saliva present and her tongue is covered with off white bumps that resemble fish eggs.  Her eyes are regularly encrusted with a dry mucuosy substance, her lips with a white crust. 

Her pallor is that of the grave. Breathing once rattling, now is more desperate, and her jaw drops each time she draws a breath, looking like a fish out of water. The nurse says this change, accompanied by the loss of her distal pulse, usually means death is near. I can't stop sobbing, can't keep my jaw from dropping as I draw each ragged breath.

Entry 3     1:49 p.m.

They had me hurry upstairs. She was cold to the touch, her distal pulse gone, her breathing labored. The nurse was going to turn her and thought it might kill her, and they all knew I must be there. Jane, worried about me, offered to just call me up if she died. I wasn't incensed, just determined to keep my word. So up the stairs I went. She is turned, no cessation of breath taking place during the process. The room is empty, save Jenny and I. She still lives, and I am grateful.