Profoundly Changed
Moving forward with love…
FIGHTING THE BATTLE: BARGAINING WITH GOD IN ANTICIPATORY GRIEF
After the four surgeries over Thanksgiving, his body was very weak from the surgeries and the eight days in the hospital with limited movement. He was frustrated about missing the activities of the Christmas holidays, his favorite, but fought hard to walk again and returned to work in January.
Then, in February, he began to feel lethargic again. We thought it was because he was removed from the steroids as they had run their six month course. Yet, his doctors in Cleveland felt he needed to be seen again for further testing. He was admitted on March 9, 2020. The kidney biopsy confirmed that he had amyloidosis as the disease had now spread to the kidneys. On March 17, Ohio’s governor ordered that all hospitals could not have visitors. Administration allowed me to stay through March 21 as I explained that I had not been out of the hospital since March 9 and therefore was not bringing in any new germs. Yet, the medical teams powers were stripped by the politicians at that time, and I had to leave him. (I don’t want to bring in politics. Ohio’s governor is Republican, and Kentucky’s is Democrat. Both made poor decisions that cost us time.)
He was released from Cleveland Clinic on March 31, 2020, to Frazier Rehab. We were so excited, because Frazier was allowing at least one visitor. We would be allowed to see one another. Yet, on that same day, Kentucky’s governor overpowered the medical team and removed that privilege. That was a difficult day for both of us. No one, except possibly the medical team seeing the mental anguish daily, can know how not having your loved ones to support you affects physical healing. Yet, Bob fought on. On April 21, the day before his birthday, I was allowed to visit because I was being trained how to help him in and out of the car, into the wheelchair, and all the equipment to help him walk again. We were so excited! We practiced again on his birthday, then he got to come home on April 23. We were again back at home with meds and a bright outlook.
In July, he was having balancing problems and stomach issues. We went back to Nortons, who sent us back to Cleveland to their Amyloidosis center. By this time, I could at least be with him as the one visitor. He had test after test, but couldn’t find the cause of the Amyloidosis. Hence, it was determined that it must be the HS. We were again sent home with a different set of meds. We remained hopeful that we could get the HS under control, which would then control the Amyloidosis. The distressing awareness that both diseases were incurable didn’t phase our hopefulness. We were sure we were going to win this fight.
Yet, both of us were quietly concerned. In hindsight, I can see the signs of anticipatory loss and anticipatory grief that we were both displaying as the Amyloidosis continued to spread and affect his peripheral nerves and gastrointestinal system.
Fighting for the Same Life, in Different Ways
From March until October 2020, Bob and I were both living with anticipatory grief. We knew his kidneys were failing. We knew a transplant wasn’t an option because of the amyloidosis. And we knew what the doctors were telling us about the time we might have left together.
But knowing and accepting are two very different things. I was determined to find another answer. Another treatment. Another doctor. Another possibility. I prayed, pleaded, and bargained with God. Surely there was something more we could do.
Bob was fighting, too. But he was also coming to terms with something I couldn’t bear to acknowledge. He told me, “God may choose to save me on the other side of Heaven.” I was mad!
I was angry with God, but I was even angrier with Bob. How could he seem so accepting of something I was fighting so desperately to prevent? Why wasn’t he fighting harder?
He would tell me, “I’m living in this body. It’s failing me.” At the time, I heard those words through my own fear of losing him. I wanted him to keep fighting because I couldn’t imagine a life without him.
What I understand now is that he was fighting. He was fighting as hard as he could. But he was the one living inside a body that was failing, and he knew its limitations in ways I never could.
Bob was a deeply Godly man. His faith was not simply something he professed; it was something he lived. Even as his body failed him, he trusted God with what came next. I wish I could say that I understood his peace at the time. I didn’t.
I was his wife. I loved him. I wanted more years, more ordinary days, more of the life we had built together. I wasn’t ready for Heaven to become the answer to our prayers.
Looking back, I realize that we were both fighting for the same precious life, but we were fighting in different ways. He was fighting to live while preparing himself for the possibility of dying. I was fighting against the possibility of losing him at all.
And perhaps one of the hardest lessons of anticipatory grief was learning that accepting the possibility of death didn’t mean Bob had stopped fighting for life.
I was blessed to be his wife. And I am still learning from the faith, courage, and love with which he lived his final months.
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