My Partner Helped Me Survive A Mystery Disease. I Had No Idea What He Was Secretly Dealing With.
The author with Andy in 2000, the year they began dating.
“Honey, I think there are two doctors sitting here for a reason,” my partner, Andy, said.
I looked at the three people filling the cramped, brightly lit space around my hospital bed. The somber, mustached physician who was in charge of my case had pulled a chair up close on my right. Andy had folded his 6-foot frame into a seat to my left, and a young blond resident sat cross-legged at the foot of the bed.
“All right,” I said, “I’ll have the CT,” and began to cry. The doctors hurried off to order the scan.
Andy rubbed my shoulder. I wondered why he was so calm. Why he wasn’t angry with me.
I’d been admitted to the hospital the night before with a fever of 104 degrees. My temperature had returned to normal the next morning, only to spike again this evening. As it climbed, I’d also become aware of a strange sensation on the right side of my chest, as if my lung were being slowly squeezed like a balloon, then released.
With my history of pulmonary embolism, and with the cause of the fever still undetermined (it was 2014, long before COVID), my somber doctor wanted a chest CT. I refused. If I didn’t have the scan, they couldn’t find another blood clot.
That was the clearest reasoning my overheated brain could manage.
But Andy had all of his faculties, plus an air of assurance that surprised me under the circumstances.
“If they find a problem, they’ll be able to deal with it right away,” he reminded me.
He had never been so cool-headed during my previous medical crises.
Andy describes himself as a hypochondriac. Though he has never been clinically diagnosed with what is now called illness anxiety disorder, we both suspect he suffers from some form of it. A fleeting pain in his belly was likely the first sign of diverticulitis. An oddly shaped mole on his forearm was probably melanoma until a doctor said it wasn’t. It didn’t matter that he’d never had a serious illness ― “It’ll be my turn one day,” he often said.
Eight years before the fevers, when I was undergoing treatment for thyroid cancer, Andy was so frightened that he often lost his temper. He cursed when I forgot to tell him about appointments. He sometimes stiffened when I wanted him to hold me.
Sixteen months after the cancer, when I was admitted with multiple blood clots in both lungs, he went numb and was especially quiet around medical personnel. The only time he showed strong emotion was when he began sobbing at the too-familiar sight of me in my cotton gown.
Andy began to worry enough for two: Something dire could strike either of us without warning. This universal truth, typically absorbed in one’s 60s, came to Andy on the cusp of middle age.
Clinging to my last shred of denial, I still saw Andy as the always-healthy one, but together, we inflamed each other’s fears for my well-being. It was too easy, since we’re both highly anxious people by nature.
Now I was in the hospital with mysterious fevers, and Andy did not appear to be afraid. I was surprised, though relieved that I didn’t have to take on his anxiety along with my own.
Though he didn’t seem scared, he was concerned. Andy saw that I had a potentially serious symptom and that I was being unreasonable. After all we’d been through with my health, I couldn’t refuse him. In our everyday life, we were equals, making choices together. Now, I let him lead me.
I had the CT, and I got my wish: It revealed no clot, no explanation for the strange sensation. No diagnosis, no problem. The tightening in my chest went away. But just hours after the scan, my fever shot up to 106, and I was transferred to the ICU. For two nights, the ICU team worked to bring my temperature down. It always abated by morning.
Andy lost his temper when he called the hospital to check in and learned that I was in the ICU. He was my primary emergency contact. No one had thought to phone him.
By the time he entered my room, he was again calm, stopping blue-scrub-clad nurses as they hurried past, asking questions but never in a panicked or angry tone: “What was her highest temperature?” “What was her heart rate?”
I wondered what had happened to Andy’s intense anxiety around illness. Maybe after all this time, he’d learned to manage his fears. Whatever the case, it made things easier for me, and I could only think that it made things easier for him.
My symptoms met the criteria for sepsis — a life-threatening condition — yet the source of my infection remained unknown. Blood tests ruled out autoimmune disorders, HIV, Epstein-Barr.
The author with Andy on vacation in NYC's Central Park, 2014. "Six months after this photo was taken, I was admitted to an ICU in Vermont with dangerously high fevers" she writes.
My doctor explained that my affliction was most likely some kind of virus, but they might never determine which one. Even as I lay in the ICU, I wanted no diagnosis, no new label added to my complex medical profile. Each day, I was protected from fear by sheer exhaustion, and each night by fever.
For Andy, the idea of not knowing was unacceptable. So was the fact that I was only getting IV fluids, ice packs and Tylenol.
He told my doctor, “We want you to treat Marcia’s condition more aggressively.”
Andy says he discussed this with me first; I have no memory of it, though I’m certain he would not have forged ahead without consulting me. I do remember being astonished that he was telling a medical professional what to do.
The doctor agreed to begin a course of antibiotics, which reassured Andy slightly (cultures would later reveal that there had been no bacterial infection).
After five nights of high fevers that disappeared by morning, my temperature stabilized, and two days after that, I went home. The only diagnosis I would ever receive was systemic inflammatory response syndrome, an acknowledgment of my body’s reaction to a still-unknown stressor. We had no answers, but I was relieved to be set free from the hospital.
I was surprised by Andy’s nervousness once I was home, given his demeanor in the hospital. “Will you please take your temperature?” he asked many times a day, and I did. It was always normal. When he remarked in an alarmed tone, “You’re still losing weight,” I began eating a box of organic pasta with cheese every day to gain some back.
It would be months before I knew the truth of what Andy actually went through during my nights of life-threatening fevers.
I sat in my home office, medical records from the hospital stay spilling across my desk. Andy stopped by the open doorway, and I asked, “What were you thinking all that time?” It had only now occurred to me that I didn’t know.
Andy looked stricken.
“I thought you would likely die,” he said.
I stopped stacking papers and stared at him.
His anxiety around illness hadn’t disappeared. Andy’s dread of disease had been exacerbated by a situation that might have terrified anyone.
He told me how frightened he’d been while my temperature climbed. When informed I was in the ICU, he panicked. He thought my fever would exceed 106. He thought this unknown invader would kill me while doctors were still scrambling to identify it.
He had shielded me from his fears when I was sick. Once I was well, it wasn’t a topic he wanted to revisit.
I’m surprised that I ever believed Andy was as calm as he seemed that week. We pride ourselves on how well we know each other. While I’m grateful to him for not overwhelming me when I was vulnerable, I feel I should have figured out the reality once I’d regained my health and could think clearly again.
I was — and am — immensely moved, not just by how he advocated for me while I was ill, but also by how difficult it must have been for him, given the intensity of his fears about disease. It demonstrated how selfless he was — and is — because despite his terror all that week, he made me and my recovery his first priority.
I believe that true love requires this type of selflessness. As we continue to make our way through this life together, I try to follow Andy’s example and give him as much as he gives me.
I’ve been with Andy for 23 years, and our love has only grown deeper over the decades. But it took a third brush with death for me to realize just how devoted he is, how tough he is, and how much he’s agonized over the prospect of losing me. This terrifying experience illustrated the power of our feelings for each other, as romantic partners and as the best of friends. And because of my nights in the ICU, I’ve begun to face the prospect of losing Andy: As he’s pointed out, one day, he might suffer a deadly disease that arrives without warning.
Back when we first started dating, I was grateful that I’d found my forever partner. Now, as cliche as it may sound, I know that love means cherishing every moment together. It’s “forever” until one of us leaves this Earth.
Next time I’m seriously ill (and it’s hardly irrational to assume that there will be a next time), I’ll be on the lookout for that telltale wildness in Andy’s eyes. And I hope that when it’s his turn to be sick, I’ll be strong enough to be his stoic advocate, his comfort, his safety in that world of endless needles and relentless light.
Marcia Trahan is the author of “Mercy: A Memoir of Medical Trauma and True Crime Obsession.” Her work has appeared in The Rumpus, CrimeReads, Catapult and numerous literary magazines. She holds a Master of Fine Arts in writing and literature from Bennington College and provides editing services for creative writers. She and Andy are living healthy lives (with fingers crossed) in South Burlington, Vermont. Learn more at marciatrahan.com.
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