Ways to Endure, Part 4

As we drove to Tennessee for a wedding in June 2013, after Pat’s fourth surgery, a rest stop offered Pat a chance to display her superhero persona.

In September 2011, a month after our daughter Emma’s wedding, Pat decided to reach out to Gretchen Oswald, a genetic counselor at Johns Hopkins University’s Institute of Genetic Medicine and co-founder of the Loeys-Dietz Syndrome Foundation. Pat knew that Loeys-Dietz syndrome (LDS) was a connective tissue disorder similar to Marfan syndrome but with certain key distinctions. She knew it was the root cause of her three open-heart surgeries over the last three years. But during that time, she’d met too many doctors who, after reading her medical chart, either asked her to explain LDS to them or stepped out of the room so they could quickly research it on their phones or in their medical reference books.

We usually gave those doctors a pass – LDS had been identified only six years earlier. But Pat wanted to speak with doctors who could give her a better understanding of the disease and a better plan for treating it going forward. She wanted to meet Dr. Harry “Hal” Dietz, a professor of genetic medicine at Johns Hopkins and a leading authority on Marfan and Loeys-Dietz syndromes.[1] Gretchen responded to Pat’s email by inviting her to schedule appointments in conjunction with the first Loeys-Dietz Syndrome Foundation conference, to be held in June. Having never met another person with this condition, Pat jumped at the offer, and Gretchen scheduled appointments with doctors who specialized in the treatment of genetic diseases such as Loeys-Dietz.

For me, a new school year had begun at Cedar Rapids Washington High School. I dove into it – getting to know a new group of students, building communities in my U.S. Humanities and AP Lang and Comp classes, meeting after school with the new staff of the Washington Literary Press. My traditional “song of the day” for the first day of classes was Joe Cocker’s version of “I Get By with a Little Help from My Friends.” My students and I had a tacit understanding: Despite the valiant efforts of my fellow teachers, high school could be a, well, perhaps not an institutional hell but at least an institutional purgatory, a place of temporary misery.[2] And yet, if we all helped and supported each other, we could get through it. In my personal life, over the past three years. I’d learned the value of that help.

My days were long – I usually left home by 6:30 in the morning for the thirty-mile commute and arrived home by 5:30 – but for me, teaching was important work. Maybe I was able to persuade some students to write more effective arguments. Maybe I showed some students ways to become better at listening to the ideas and opinions of others, or I helped some discover that beneath Hawthorne’s verbose and convoluted literary style was a timeless story that hooked our interest and empathy, or I encouraged some to become more comfortable with being different, unique, themselves.

It was my eighth year of teaching, and Pat was used to the long hours, although since she no longer worked equally long hours, I was missed at home more than before. I did my best to leave school at a decent hour, but I also felt it was better to get most of my after-school grading and lesson-planning done at school rather than bringing it home with me. I was striving to be completely present, whether at school or at home

We hosted our usual elaborate dinner at Thanksgiving, Pat’s favorite holiday of the year by far. She had an endearing habit of inviting all manner of folks for dinner, resulting in a curious but always congenial gathering of family, friends, and holiday orphans. But we didn’t have thirty guests that year (the most we ever stuffed into our cozy 900-square-foot house for Thanksgiving dinner) and everyone helped out by bringing dishes. Pat still had a weight restriction, so we wouldn’t let her lift the bird into or out of the oven. 

Two weeks later, the Washington Literary Press held PAM Slam, its biggest event of the year. I loved that the students conceived of the event – a Poetry slam with Art exhibit plus Musical performances – in order to raise funds needed to publish a full-color edition of their end-of-year literary and arts journal, Fingerprints. I loved that every one of the fifteen staffers pitched in to make the event a success. I loved that the student body turned out to support us – always close to 200 paid admissions. I loved that the administration supported the students’ right to free expression, recognizing the purpose of the profanity heard in some poems was more to express emphasis or catharsis than to offend or disrespect. I loved that PAM Slam had become a school tradition.[3]

We spent a quiet Christmas with Emma and Zach and Jesse. Even though they were adults, we carried on certain family traditions. After we each opened one gift on Christmas Eve, Pat and I waited till everyone had gone to bed before bringing out the majority of the presents and filling the stockings, “from Santa.” We all enjoyed the frisson of waking up to a pile of brightly wrapped packages under the tree, sipping coffee and waiting for Pat’s cinnamon rolls (made the day before) to finish baking.

In February, the results of Pat’s follow-up appointment with Dr. Farivar after her latest surgery gave us cause for cautious optimism. The CT scans showed no change since before the surgery in a number of areas of concern: a short dissection of the aortic root, dissection flaps in the thoracic aorta, and aneurysmal dilations of the aorta and arteries. This stability was a good sign, but she was not out of the woods, not in the clear. By then, Pat and I knew she’d never be out of those woods, but we were determined to enjoy the life we shared, and to ignore, without ever completely forgetting about, the cardiothoracic clock faintly ticking in the background.

If it’s true that into every life a little rain must fall, we had come to realize it never rained on Pat’s life without pouring. Those CT scans also showed areas of emphysema in both lungs, which explained the shortness of breath Pat had been experiencing. In addition, Pat revisited with Farivar the problem with her voice, reduced to a hoarse whisper since the second surgery. This dysphonia could be traced to pharyngeal nerve damage that occurred during that surgery. More recently, she’d been having trouble swallowing. Far too often, Pat would suddenly stop eating in the middle of dinner because food was stuck halfway down her esophagus. This dysphagia could also be explained by the nerve damage. When she participated in a swallow study at the University of Iowa Hospital’s Otolaryngology Clinic in May, it showed not only the muscle walls of the esophagus not working properly but an abnormally narrow spot restricting flow.

To give you a sense of the inner demons Pat was battling at that time, among her double-digit array of prescription drugs was alprazolam (Xanax) for anxiety and insomnia, clonazepam (Klonopin) for panic disorder, fluoxetine (Prozac) for depression, and hydrocodone (Vicodin) for pain. Pat hated having to use these drugs, and was always trying to reduce the dosages or completely remove the drugs from her regimen. When she was young, her mother had struggled with drug addiction, and memories of that experience haunted Pat. I understood her fears and tried to reassure her: “You are not your mother, and the alternative to taking alprazolam and hydrocodone is getting worn down by sleepless nights and constant post-surgical pain.”

In June, Pat embarked on her pilgrimage to Baltimore, home to the widely acclaimed Johns Hopkins Hospital and School of Medicine. At the Loeys-Dietz Syndrome Foundation conference, she became an embodiment of hope to many younger LDS patients and their families. As a 59-year-old woman, Pat offered to fellow attendees the possibility of outliving the current life expectancy of 37 years. Her medical history also challenged the theory that pregnancy and childbirth were risky if not impossible for women with LDS because of the chance of aortic aneurysms and uterine ruptures.

Pat’s initial exam was performed by Dr. Mark Lindsay, a geneticist at Johns Hopkins. His clinical notes suggest the meeting commenced with an upbeat and optimistic attitude: “Today, we had the pleasure of evaluating Ms. Patricia Duer.” By page 3, the notes take on a more serious tone: “The next concern going further up the aorta is Ms. Duer’s dilated aortic arch.” Although Lindsay indicated its current dilation of 4 cm didn’t normally call for surgery, Pat’s LDS diagnosis altered that calculation. After consulting with Dr. Duke Cameron, they agreed an aortic arch measuring 5 cm could signal the need to replace it. Although this indicated another surgery was in Pat’s future, and we knew there was nothing she could do to keep that aortic arch from dilating further, the specificity of this plan was reassuring.

Let’s spend a moment with that consulting physician, Duke Cameron. According to his Johns Hopkins Medicine website page, “He is internationally recognized for his contributions to cardiac surgery, particularly aortic surgery for Marfan syndrome, Loeys-Dietz syndrome and other connective tissue disorders.” But we had a hard time getting past his name, joking that he surely removed his Stetson hat and cowboy boots before going into surgery. We soon realized how badly we’d misread his character. Duke Cameron was the least macho cardiothoracic surgeon we ever met. During Pat’s next two surgeries, we came to rely on his accessibility, kindness, and quiet confidence.

The following month, I got a chance to participate in Tony Hoagland’s Five Powers of Poetry Seminar[4] in Santa Fe, New Mexico. An old friend of mine and Pat’s from our undergraduate days at the University of Iowa, Tony had gone on to become an exceptional poet and teacher. He’d created this week-long seminar to help high school and college teachers develop new strategies for bringing poetry and poetry writing into the classroom. I spent a wonderful week with Tony, his wife Kathleen, and a dozen other teacher-writers in that city of art, culture, and history. Although Tony was dealing with serious health issues of his own, he only wanted to hear about Pat. He was always that generous and selfless. As we discussed and wrote poems that week, I thought a lot about her. This is one poem that emerged from those thoughts.

Together

We’ve unharnessed the horse of abstraction.

It whinnied a moment, then galloped off

to a fresh meadow of oats.

Now we are left with the wagon –

four wooden wheels careening down

the long hill of our lives.

At times we veer off the winding trail,

but the wagon somehow finds it again.

We had a hand brake,

but it’s been rendered worthless by overuse.

All the plans we’d made are

neatly packed in the bed of the wagon,

but as we pick up speed

on this steep rocky trail

items go flying out the back –

to-do lists, itineraries, agendas, pension plans.

This makes us lighter, less encumbered,

but we don’t know if that helps.

Meanwhile, the bottom of the hill approaches

more swiftly than ever.

Hang on tight! I shout,

and we do, we do.

Even as we went “careening down the long hill of our lives,” our children continued to forge their own paths, to our great pleasure. Sierra and his longtime girlfriend and flatmate, Tina, announced to us their decision to get married. So, we began to make plans to travel to New York City in November for their wedding.

Footnotes:

[1] In 2005, Drs. Hal Dietz and Bart Loeys had identified and characterized Loeys–Dietz syndrome.

[2] For more on this, check out the TikToks of my former colleague Joe Sloma, for example, “would that i weren’t so bored” @squirehaligast.

[3] Here’s one example of a student performance, and the popularity of the event, from PAM Slam 2012.

[4] The five powers are image, diction, voice, structure, and implication.