As Woody Allen says, "I am at two with nature."
I am more grateful than ever for life, and life with Bonnie -- and I am deeply tired from the seemingly endless haul.
Bonnie is recovering again, ever so slowly, from the latest onset of Graft vs. Host Disease ... and the side effects of Prednisone. She is unsinkable through it all. She will post how life looks through her eyes.
In posting here I aim to explore the strange phenomena of feeling at two with the universe: Deeply Grateful / Tired Depressed.
By illuminating the "care providers’ blues" I hope to come to catharsis and that other care providers may take heart by our candor.
Around Thanksgiving, 19 years ago Bonnie and I stood before the brick hearth in my family’s home and exchanged marriage vows. I was asked to take Bonnie’s hand and I suddenly saw the essential Bonnie Bonnie's eyes and the plateaus of her cheeks lit up, as if from within. "The Greeks bequeathed to us one of the most beautiful words in our language—the word ‘enthusiasm’—en theos—a god within." Louis Pasteur
I got how fortunate I was to be marrying the woman in the peach and gold silk. I glimpsed a being, who fathoms a mysterious thing Christians call "Grace". I come from a different tradition that steers by adherence to the law and "works". Living with Bonnie I am frequently surprised by how different Grace is as a way to be in the world.
19 years later, on Thanksgiving night, I picked Bonnie up off of a wet concrete step where she had collapsed.
We were headed out; Bonnie was wearing her "party clothes" for the first time in a couple of years. We went across the street to share Thanksgiving with others on the Divinity School campus who had not gone "home" for the holiday. Without warning Bonnie could not lift her leg up to mount the single step: She went down like a Chinese dragon-kite in the wet night.
Prednisone is protecting Bonnie and allowing her to rebuild her stomach and intestines from the assault of her second bout of Graft vs. Host Disease. AND Prednisone is again laying waste to her muscles and bones.
It is a race against time to get off of the Prednisone soon enough to avoid having to go through another round of rehabilitation. Her hands are quaking again. I pray that she retains enough strength and coordination to walk.
Bonnie has a strategy to exercise by living fully. She stays up most of the day and cooks with a new passion, and works in her office. She walks to church and does her school work. Only the good Lord and Bonnie know why she needs yet another diploma. But Bonnie is doing things that she loves and that force her to use her muscles. The doctor says if all goes well Bonnie will able to step down her doses of Prednisone, 10 mg every two weeks, and be off of it in 14 weeks. And he quietly acknowledges that Prednisone will cause all of the side effects we know too well until she is off of it.
Bonnie is amazing, but even her mystical reserves seem to be depleting. The chemotherapy has damaged her hearing. It is hard for her to hear people speak. Not good for a rhetorician. The TV must be very LOUD for her to make out the dialog. Hearing aids have been prescribed by her audiologist. I am researching digital vs. analog and the human interface issues.
Bonnie is also losing her sight to cataracts, which are a known side effect of successful bone marrow transplants. Ah, the cost of success. Further, the Prednisone compounds her eyesight problems: It causes the lenses in her eyes to swell with fluid
The combination of her new cataracts and the distorted lenses blurs and distorts her vision. She is becoming increasingly light sensitive. She has a hard time reading books or text on her computer screen.
Today we got Bonnie new glasses which we hope will correct her vision to 20/50. She was happy with the improvement, though she can no longer drive at night.
Two years ago I looked around the Dana Farber Cancer Institute waiting room and saw about 60 people. We noticed aloud that Bonnie was the healthiest-looking person in the waiting area. Then it was hard to guess if she was the patient or a patient’s advocate.
Now, two years later, we both notice silently that Bonnie is the person in the Dana Farber waiting room who looks most frail, as if burned by a nuclear blast from the inside out. Her beautiful peachy skin is dry, ruddy and flaking. Her once thick hair is thin and dry. It sticks up, Einstein-like. She has gained back only 20 of the 70 pounds she lost. Her eyes are clouded, even when the plateaus of her cheeks and eyes are lit from within.
"Some people say the blues ain’t bad. It is the worst old feeling I have ever had… I believe I am sinking down." Robert Johnson, Crossroads.
And we give thanks for Life.
/Daniel for BanD
Daniel----This is an awesome mirror of all I know about caregiving and this disease. What a gift to us all as we face life and death. Betsy
Posted by: Betsy Hall | December 08, 2007 at 09:22 PM