Tuesday, January 1, 2019

Moth and Rust and Pulmonary Hypertension

I’m a big fan of book reviews. We publish them in each issue of BYU Studies Quarterly, and I read them in Dialogue and Journal of Mormon History. I like book reviews for three reasons. First, I love books. I want to know what’s being published, especially in the area of Mormon studies, where I work. Second, book reviews most often tell me enough about a book that I decide not to buy it and read it. Third, every now and then a review convinces me that I do want to read the book being evaluated. This is often how I narrow my reading list. Recently, I read a review that convinced me to buy the book. It is Moth and Rust: Mormon Encounters with Death, published by Signature Books and edited by Sunstone editor Stephen Carter.
Carter recruited forty-six different authors (including himself) to write about their encounters with death. This may sound morbid, but the stories, essays, and poetry in the book present fascinating views of a topic we all face up close and personal at times but usually avoid. Some of the authors raise provocative questions. I have not finished the book yet, but I’m far enough in to be hooked. This is a thought-provoking collection of reminiscences and ruminations. Carter has divided the book into five sections: Passages (thoughts on a loved one’s death), Piercing the Veil (ideas on the condition of the soul after death), Fleeting (on the death of children), A Wider View (death in other contexts), and A Single Soul (how death has affected the author personally). My purpose here is not to review the book. My purpose is to tell you about my mother, because Moth and Rust has made me think more deeply about the only person I have ever seen pass from mortality to the great beyond.
When I was a teenager, Mom told me she wouldn’t make it to sixty. She suffered from fibromyalgia and felt so awful that she couldn’t imagine living to old age. This was before anyone knew what fibromyalgia was. Her doctor couldn’t find a cause for her pain, so he told her it was all in her head. That was helpful. But she knew it wasn’t in her head. It was in her chest and arms. I also knew it wasn’t in her head. My bedroom was across the hall from my parents’ bedroom, and I remember hearing her crying in the night because she hurt so much. She never knew I was listening until I was older and mentioned it to her. She also had a damaged mitral valve in her heart from the rheumatic fever she contracted when I was eighteen months old. Her health issues were not life-threatening, but they were life-hampering and made her miserable. In her fifties, she added peripheral neuropathy to her list of ailments. This made her feet ache and limited her mobility. I know something about this one, because I inherited it from her. Later, after she had passed the sixty-year mark she thought she’d never reach, she was diagnosed with hypoglycemia, which eventually morphed into diabetes. She took so many medications (some to counter the side-effects of other medications) that we joked with her that when she died the EPA would have to dispose of her body.
In Mom’s late seventies, she needed bypass surgery, but she didn’t seem to recover as we expected. She seemed to tire easily and huff and puff with minor physical exertion. After a couple of years, just after she turned eighty, she was diagnosed with pulmonary arterial hypertension (high blood pressure in the pulmonary artery). Finally, after all the merely annoying health issues, this one was fatal.
She dealt with it like she had everything else to this point. You need to understand one thing about my mom. She was an angel. She wasn’t perfect, but she came awfully close. She was served faithfully in the Church, loved her family in quiet but impressive ways, and even worked consistently on her genealogy. She made a decision early on that no matter how awful she felt, she would try to be pleasant. This wasn’t something that just came naturally, and I’m sure it was tremendously difficult, but she succeeded marvelously. This was a conscious decision, and she wrote about it in her personal history. No matter how much she hurt, when you talked with her on the phone or even in person, you would never know anything was wrong. The only time I remember her complaining was when she broke her ankle and had to be confined to a wheelchair for a few weeks. All she said was “This is so hard.” This was near the end, and her oxygen needs were significant, so the broken ankle was a difficult complication in an already unraveling life.
She lasted almost four years from the fatal diagnosis. We watched as her oxygen setting went from two liters to four to six to eight to ten and finally to twelve. Since the oxygen concentrator could produce only ten liters, they combined two machines and ran them together. She also took a medication that cost $15,000 a month. Yes, that’s not a misprint. Fortunately, her insurance and a charity paid for almost all of it. And my dad took such good care of her. It almost killed him near the end. He was exhausted from not sleeping. He’s a worrier, and he would lie awake listening to her breathe, wondering at each breath if it would be her last.
But her last breath came in the hospital, and it will trouble me till the day when I take my last breath. At the end, her oxygen concentrators could not satisfy the needs of her ossifying lungs. She needed fifteen liters, and even the combined concentrators could not supply enough oxygen. In the hospital, she had a stroke, which rendered her unable to speak. But she held on long enough for her family to gather. She did not have a big family. She was able to have only two children, and my sister’s only child died of cancer at age eight. But finally, after my daughter and her two-year-old son—my mom’s only great-grandchild at the time—had arrived from Houston, Mom agreed to have the oxygen mask removed.
The pulmonologist told us they would give her morphine to make her comfortable and Ativan to relax her. Then they would take away her supplemental oxygen. They assured us that she would go to sleep and peacefully slip away. It didn’t happen that way. It was a difficult struggle. My dad and I held her hands and tried to calm her as she fought for breath. The stroke took from her the control of her facial muscles, and the pain distorted her face into a mask of agony that we had never seen before. After she was gone, my dad looked at her and said, “That’s not what I married.” I understood. She had always managed to be pleasant, to deal with the pain without letting anyone know how much discomfort she felt. But even the morticians were unable to restore the peaceful countenance we had always known, and I still feel bad about that.
My mom’s death will haunt me with questions until somewhere on the other side of the veil someone can give me answers that are unavailable here in mortality. I didn’t cry when she died. She did, after all, live almost twenty-four years longer than she told me she would, so I considered all those extra years an unexpected and blessed bonus. But the manner of her death was also very disturbing. If anyone deserved to slip away peacefully, it was my mom. The way she died was so incompatible with the way she lived. A revelation given to Joseph Smith states, “Those that die in me shall not taste of death, for it shall be sweet unto them” (D&C 42:46). Since my mother’s death, I have had to consider this statement a platitude rather than a blanket truth. And since this is the only death I have ever witnessed, it definitely colors my view of the transition from mortality to whatever awaits us. I can only hope that the place Mom has gone to is worth the price she paid to be admitted.