Learning to accept a plan you don’t understand.
by Marcie Nootenboom
My hand shook as I held the phone. I tried to stand, but collapsed on the chair as my whole body began to shake. I’d just been told the diagnosis that my now-deceased husband had been given many years ago was a mistake. “He didn’t have Alzheimer’s disease,” the doctor told me.
“Probable Alzheimer’s disease” was the original diagnosis given on our ninth wedding anniversary. It made sense: My husband constantly forgot things; his behavior was erratic; he couldn’t do the work he’d done for over fifteen years.
The doctor added, “He also didn’t have progressive supranuclear palsy,” a rare brain disease. This was the same physician who’d diagnosed this kind of palsy after Lee went into the nursing home. My husband would lose his balance until he couldn’t walk at all. He also lost the ability to talk and couldn’t swallow properly or feed himself. The last few years, his eyes wouldn’t focus.
Living a lie
The autopsy revealed viral encephalitis, which had affected the frontal part of Lee’s brain and ended up killing him. “Viral encephalitis can be stopped,” the doctor told me now. “It cannot be reversed, but when diagnosed, it can be stopped.”
I felt as if I’d lived with a lie for twenty-two years. Twenty-two years of doing what I could. I’d accepted the fact that my life changed forever because of my husband’s illness. I’d given him the best care I could at home. When I could no longer care for him, he entered a nursing facility.
Grief and anger
Throughout the years, I’d cried at the continued deterioration that took Lee further away from our six children and me. When he died in June 2006, my grief had been largely spent. However, the results of the autopsy brought fresh grief and fierce anger. Pain overwhelmed me.
I was angry at the doctors who’d misdiagnosed him.
I was angry with God who allowed it to happen.
I was angry with Lee for being sick.
I was angry with myself because I hadn’t asked the doctors the right questions.
The following week at Bible study, I didn’t know what to share with the others. Ironically (or was it part of God’s plan?) the study centered on anger at God. At the end of the lesson, our leader asked, “Is anyone here mad at God?”
Almost on its own, my arm rose. The tears came again. It took time for the words to come out. Finally, I told them, “My husband was misdiagnosed. He didn’t have to suffer all those years. He didn’t have to leave me and die.”
Fortunately for me, the leader asked me the right questions, including “Does God care? Is He still in control? Can God use what happened to honor Him? Can He honor you for the years of faithful loving and caring for your husband?”
The group prayed for me and with me, and I left feeling better — for a while.
I began remembering all the things I’d missed while Lee was alive. No more Saturdays searching for bells to add to our collection, no Bible studies together, no nights sharing our intimate thoughts, no family vacations — things I’d accepted after the doctors told me my husband had an incurable disease. The anger returned.
I thought about suing the doctors because of what we lost during those years, including income, but I knew it wouldn’t bring back Lee or the years we’d missed.
While Lee was sick, I studied the book of Job. Now I looked at it again. Job and his wife didn’t deserve losing all they had. Even though he didn’t understand why calamity happened to them, Job accepted it as coming from God.
Near the end of Job’s illness, God shared with him all that He had done since the beginning of time. God was and is in charge of what happens and why it happens, and Job knew and accepted it.
Fruit of caregiving
As I turned this “error” over to God, I began to see how He’d used me during my years as a caregiver.
Right after Lee first went on disability retirement, I asked God how I could supplement the disability income. God had one word for me: “write.” After that, I became serious about writing for publication, and that led to occasional speaking engagements.
One time stands out, probably because I’ve always been shy. I grew up believing I wasn’t capable of doing anything. My parents used to say, “After all, you’re just a girl.”
My husband believed otherwise. He pushed me to write, become PTA president, teach a junior high Bible school class, and share the history of antique bells from our collection with various groups. He let me know often how proud he was of me.
As Lee led family devotions, he assured me that my power came from God — not from him and not from my parents. “God loves you, Marcie. He will give you the power to succeed in what He wants for your life, including your writing.”
Because of this, when I was asked to be a part of an advocacy committee, I agreed even though I was afraid. This committee worked to get three bills passed that would help families of those with Alzheimer’s disease, or a related disorder, who were under age sixty-five. Lee had been forty-one when he went on disability retirement.
For months I spoke to various committees in the Oregon State Legislature about the needs of families like mine. I was even given a beeper so my teenage children could contact me if Lee needed help or if they needed help with him.
I shook while I spoke, often leaving the meeting with a migraine caused by the stress, but I let these people know about the unusual needs of young families with a disabled parent. Because of this, three bills passed.
One was to start an Alzheimer’s research center in Portland. The second was to fund this center, and the third provided help in the home for families with a disabled parent under age sixty-five through Oregon Project Independence.
Part of the plan
Since Lee’s death, I’ve continued to write and speak and have been blessed. I also believe that God has blessed those who’ve heard what I said and read what I’ve written.
As I look back, I realize that God used my writing and speaking to help not only others but also me as I wrote about what I went through during countless changes over those twenty-two years. While I’ll never understand fully why God allowed this to happen, I do believe God had —and still has — a plan. I’ve learned to accept the fact that He used, and will continue to use, Lee’s misdiagnosis for His good reason.
About the Author
Marcie (Marcia) Nootenboom has sold approximately 360 articles and short stories that have appeared in such publications as Aglow, The Banner, Light and Life, Power for Living, and Secret Place. She is former president of Oregon Christian Writers. Marcie lives with her husband, Richard, in Desert Hot Springs, CA.