When One of You Becomes the Caretaker

“In sickness and in health” applies to young couples, too.

When one of you becomes the caretaker

by

photo courtesy of Evgenij Yulkin

filed under Couples, True Stories

On Valentine’s Day 2017, Seth got down on one knee at Rockefeller Plaza and asked me to marry him. Four days later—with my new engagement ring tucked into a hotel drawer for safe keeping—I flew off a ski jump and broke my back.

The accident was terrifying for obvious reasons, but also some not-so-obvious reasons. Neither of us had ever considered being in a mixed-ability relationship. Instead of coming together to discuss the prospect of a future that might involve caretaking, we pulled apart to deal with things in our own ways. For me, physical therapy provided an outlet for my need to take back control. But Seth didn’t have such a concrete goal or benchmark. Overwhelmed by fear and helplessness, and aghast at the horror and bureaucracy of hospital life, spiraled into avoidant depression. While I worked to prove to him my resilience, he questioned whether or not “we” were a good idea.

When couples plan out their lives, they dream of big careers, beautiful homes, adventurous travel, maybe children. “In sickness and health” is written right into the contract, but our eyes gloss over that part as we rush into the dancing and cake eating. But statistically, getting sick or injured is as certain as death and taxes. It’s not a question of if, but when. For us, and for several other couples I interviewed, adjusting to life with and after an illness or injury was scary, but it also provided the opportunity for a deeper connection.

Katie and Russell

Katie, 41, was diagnosed with multiple sclerosis 11 years ago. Her husband of three months, Russell, 48, had never heard of MS before they met. He did some research, but mostly he just fell in love: “In terms of when she does get sick or when the symptoms worsen, my studying up isn’t going to change anything. I’m in it for the long haul.”

So far, Russell’s biggest act of caretaking has been bringing Katie onto his Rhode Island healthcare policy. That solved some problems, but caused others. “At first, my new doctors wanted to switch my meds to some new drugs with scary side effects,” says Katie. She was used to making these types of decisions, but this was her first time weighing outcomes with a partner who also had a stake in her well-being.

Though Katie ultimately chose to go back on her old meds, they are merely the lesser of two evils. The couple is on the alert for side effects, including cancer: “There’s a chance I’d have to go off the meds immediately and onto one of the others, and those are hardcore drugs. One kills off everything and jump-starts your immune system so it comes back more functional. But it destroys your kidneys and your thyroid.” This decision-making process was a steep learning curve for Russell. His greater understanding of the daily experience of living with MS has strengthened his respect for Katie: “Whatever physical difficulty she has may make life more challenging, but she’ll still be the same person. She’ll kick ass no matter what.”

Katie’s condition will worsen over time, but for now, the newlyweds are simply enjoying the opportunities for closeness that caretaking affords: “I give Katie a lot of massages. It makes her feel good, and I get to touch her.”

Alison and William

After getting sick at age 13 with transverse myelitis—a rare neurological condition in which the spinal cord becomes inflamed—Alison was treated, but her condition subsequently evolved into a form of MS. A decade later, her MRI scans still yield inconsistent results. Alison continues to experience flare-ups that are typical of MS—exhaustion, muscle fatigue, balance issues—but without an official diagnosis, she is not eligible for standard treatment. Rather than providing care, western medicine has disappointed Alison, who likens her frustrations to those written about in Johanna Hedva’s “Sick Woman Theory”: “If I have a new symptom, or one that’s serious, I’ll go to the neurologist. They’ll do all the tests, refer me to an expert, then say nothing’s wrong.”

After four years of observing Alison‘s flare-ups despite the absence of an official diagnosis, her boyfriend William is nudging her to revisit the idea of seeking treatment: “I’d really like for Alison to get into an experimental study on MS,” he says. At first, Alison dismissed his suggestion, but the vehemence of her resistance made her realize how much this logistical step triggered ingrained survival techniques, developed over years of frustration with western medicine. Together, they are now looking into other treatment options, including holistic approaches such as chiropractic.

In learning to support one another, Alison and William frequently came up against their own conditioning about what illness looks like, and what kind of care is helpful: “One thing that’s tricky with fatigue illnesses is that they look a lot like depression,” says Alison. Initially, her episodes would lead William to try to match her mood, triggering his own depression. This lead to ugly fights, resentment, and–eventually–the awareness necessary to default to self-care in those moments. “My coping mechanism is long walks. When she’s having a flair up, Alison will ask me to run errands. It improves my mood and makes me feel useful.” In this way, caretaking was the catalyst for greater insight into their interpersonal dynamic: “I’ve realized that if I’m explicit with William in what I need/want in terms of caretaking, it helps avoid the chase and retreat dynamic.”

Hanna and Pierce

A common concern with caretaking relationships is that the daily business of sickness becomes all-consuming. Love will dry up in service of endless bureaucracy, medication regimens, and down days. But in the case of Hanna and Pierce, it was the logistics of caretaking that led to deeper love and commitment. When Pierce, a tree surgeon, accidentally cut his back-up line and fell 30 feet, Hanna immediately stepped up. His severe injuries required constant nursing, but without health insurance, he was discharged from the hospital within 24 hours. They’d been together less than a year, but Hanna became his primary caretaker, on top of working a full-time job: “There was no option but to do this for the person I loved.”

Far from being a burden, taking care of Pierce was rewarding for Hanna. By comparison, her job felt like an inconvenience. Their community rallied in support: “We had two tours of moms coming through,” says Pierce, “and Hanna’s coworkers even organized a meal train.” Nursing and being nursed required developing radical empathy and vulnerability, which have been enormously beneficial: “The relationship solidified. Communication was easier, and we shared feelings more.” Pierce is now healed, though his dangerous job remains a source of anxiety for both.

Cameron and Jonas

Diagnosed with Scheuermann’s disease as a child, Cameron, 33, has always known she needed surgery: The disease, which manifests in childhood, causes vertebrae to grow unevenly, and curvature of the spine, resulting in lifelong pain. She always thought of the very expensive surgery as a last resort. But when pregnancy caused a serious uptick in her chronic pain, Cameron was recommended to a surgeon who was willing to operate at a discounted rate. According to her husband Jonas, the surgery—which had always seemed abstract—became a reality overnight. “It kind of came up in conversation, then happened very quickly over six months.”

As new parents and freelance actors, Cameron and Jonas were already overstretched, and the surgery seemed like one more thing to manage, but it actually put everything else in perspective. “The moment before surgery, the anesthesiologist and my surgeon said, ‘You could absolutely die’” Cameron recalls. “So many things that might have mattered before the surgery didn’t matter anymore.”

After surgery, in addition to taking care of Cameron, Jonas took on the responsibilities of solo parenting while continuing to work full-time. Cameron’s recuperation had setbacks. There were issues with her pain medication, the site became infected, and then the bone wasn’t fusing. Eventually she landed back in the hospital for a second surgery, and what had seemed overwhelming, suddenly transformed: “Her second surgery really saved and invigorated our marriage,” Jonas says. “I recognized her strengths, but also learned to advocate for her, which made me feel more competent.”

Cameron and Jonas have since developed a greater appreciation for one another. The “tsunami”—as Jonas called it—facilitated a shift in their everyday dynamic from high stress to going with the flow: “I feel more than ever that we are very lucky to have each other,” says Cameron.

Recovery is still ongoing, and the stresses of normal life have returned. There are financial pressures, new jobs, parenting challenges. Jonas recently had a car accident, for which he is in physical therapy. But the magic is still there, thanks to a greater awareness for the contribution each makes to the other: “He’s my friend, my lover. He helped set up a life around me that was safe and secure and consistent. He really does his part.”

For Seth and I, it was his admission of wanting to leave that heralded our turning point. Once he got his fears and doubts out in the open, we were able to see where they were coming from—his feeling of helplessness. So he got involved with my physical therapy, almost becoming like a coach, which gave him a sense of more control and me a sense of partnership in my recovery. It took several months, but I got back on my feet and am now fully healed, and the experience brought us closer.

In all of these examples, caretaking moved the relationship to the next level. And that makes sense. We often hear that individuals never fully know their true strength until hit with a life-altering challenge. The same is true of relationships: some will crumble under the weight of an illness or accident, but by choosing to dig deep and stay the course, many will flourish with a new sense of strength and appreciation.  

Lucy Gillespie is a playwright, screenwriter, and creator of the cult hit series UNICORNLAND. Lucy’s plays have been produced in NYC and LA. She is an alum of the Obie-award winning Youngblood PlaywrightsGroup, and has held residencies at Byrdcliffe Arts Colony and MacDowell Colony.

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