On Connection

I woke up this morning and could not will myself to rise out of bed. It’s often difficult for me, balancing daily demands, navigating fluctuating MS symptoms, and staying meaningfully connected to others. I've been more active than usual as of late with the early stages of rehearsals for a show that I'm acting in, and a week-long family visit, and a commitment to more regular exercise—be it on the basement treadmill shrouded in shadows or the sunny trails of the Happy Jack Recreational Area in Wyoming’s unseasonably warm transition from winter to spring. 

The activity nourishes my soul, but saps my body of energy, pushing me into a pas de deux of give and take with the warring components within my psyche. The ambitious, visionary, excitable part of me wants to go, go, go! The weary side—the side that's constantly recalibrating, establishing clever workarounds to circumvent the neurological deficits wrought by twelve years of life with MS—forces a hard stop. They war and tug with one another incessantly, like the opposing forces of the Greeks and Trojans from the ten-year struggle of The Iliad, agency winning one day, idleness the next. 

Such oscillation of energy levels makes it difficult to maintain regular social interaction, a fact that periodically weighs on me. Research undertaken by health institutions from the CDC to the World Health Organization confirms that people live longer, healthier lives when they hold a sense of connection, belonging, and support from others. As covered in the recent issue of InforMS, the quarterly publication from the Rocky Mountain MS Center, Kerri Chechovic writes in her article The Power and Complexity of Social Connection in Life with MS that multiple sclerosis “heightens the need for support and understanding while at the same time creating barriers to accessing it.”

Simply stated, I am not reliable. I can’t be counted on to consistently show up to social events day in and day out. As such, I have observed the invitations to friendly group gatherings dwindle, replaced instead with a limited corps of family and close friends who proffer open invitations laced with grace and leniency, who understand that I may or may not have the resources to engage at any given moment. As appreciative as I am, however, the gratitude that I hold for the latter is paralleled with the degree of mourning that I have experienced over the loss of the former. I recognize that meaningful connection cannot happen without intention. As Kelsey Morrow highlights in her article Support as Connection, “it takes initiative. It takes communication. And sometimes, it takes courage.” Courage to embrace vulnerability. Courage to reach out. Courage to evolve, even when we crave constancy and still waters.

But we all must adapt to change in this life. As the Ancient Greek philosopher Heraclitis posited with his ideas of universal flux, "the only constant is change." Whether seismic or microscopic, we are always moving from one state of being to another. 

This timeless truth was supported in the InforMS article Finding Purpose Through Connection: Adapting to the Changes MS Brings by Peter Broderick, emphasizing the power of engaging in meaningful work, advocacy, and personal interests, while allowing for flexibility and grace in these endeavors. “Adaptation doesn’t have to diminish the value of these pursuits. Instead, it reflects resilience and creativity, and what we do to adapt to new realities can show us exactly how important these pursuits are to us.” 

My family matters to me. The theatre matters to me. Engaging in self-care matters to me. And fostering empathy and compassion for others matters to me—even if the means of cultivation must undergo a metamorphosis, even if the execution must shift from quantity to quality.

And, sometimes, change can creep up on us in the most pleasantly surprising ways. Take, for example, my feelings towards the colors of MS advocacy: shocking green and hunter’s orange. The colors make me think of neon lights and construction, nothing calm or empowering about it. It’s quite possible that my aversion to these particular hues negatively colored the ways that I viewed—and resisted—advocacy work. I had no interest in sporting the ribbon of MS Advocacy or branding my life in the colors of multiple sclerosis.

Fortunately, according to Broderick, “advocacy is flexible. It can be tailored to a person’s energy, interests, comfort level, and schedule.” For me, opening up about my lived experience with MS serves as advocacy in the form of storytelling, establishing new avenues for connection in a way that furthers the wider comprehension of multiple sclerosis.

So this morning, as I remained wrapped under the covers, I chose to write a column rather than take to the streets in a grandstand of loud coloration. Over the years, I have found that some of the most restorative support and connection comes from activities like creating art and engaging in rituals that reinforce my identity. I powered on the essential oil infuser placed beside my bedside, lit within from an electric green power light, its facade a constellation of pinpricked lights that slowly cycle through a prismatic rainbow of hues. Unintentionally, I halted the color wheel when the orb emanated a sparkle of tangerine spliced with a sliver of lime. Doing so, I welcomed the shades of MS—quite literally—in a new light, and set to composing a meaningful entry of connection.

In whatever form it takes, “connection—to others, to communities, to meaningful roles, to valued activities—remains a powerful source of strength and resilience,” says Broderick. “Connection isn’t defined by MS. It’s shaped by the way we continue to grow, contribute, and stay engaged with the world around us.”

Life with MS has necessitated adaptation, but accepting its requisite evolution to changing environments and circumstances does not diminish my need for purpose and community. Deeply engaging with people and interests makes life rich and fulfilling, counterbalancing the challenges of multiple sclerosis by offering moments of compassion and curiosity, and securing pathways to creativity and meaningful memories. In this, I stay connected. In this, I stay alive and vibrant and grateful.