Chronic Pain

The Ripple Effect: How Staying Present Can Transform Advocacy

Still from Peaceful Warrior. Dan sits atop an old beat up car looking pensive. His mentor, Socrates, looks on with his had down.

In a pivotal scene from one of my favorite movies, "Peaceful Warrior," a dialogue unfolds on a bridge that has profoundly influenced my approach to advocacy. Dan, consumed by the hustle of life's demands, is suddenly plunged into the river by his mentor, Socrates. It's an unexpected, jolting act that empties Dan's mind of all but the present moment. This scene metaphorically mirrors the journey many of us embark on in the realms of disability advocacy and the pursuit of diversity, equity, and inclusion (DEI).

As a disability advocate and someone who navigates the complexities of living with chronic pain and a visual impairment along with Cerebral Palsy, I've found that embracing the present is not just beneficial but essential. The advocacy road is long, often met with setbacks and a slow pace of change that can wear down even the most resilient spirits. Yet, it's in these moments, when we're fully present, that we find the strength to persist.

The bridge scene from "Peaceful Warrior" serves as a powerful reminder of this. When Dan is thrust into the river, all distractions are stripped away, leaving him utterly immersed in the "now." This is the essence of mindfulness — a state of being entirely engaged with the present experience, devoid of external distractions. For advocates, this focus can be transformative, enabling us to navigate adversity and continue our work with renewed vigor.

Incorporating mindfulness into our advocacy efforts, especially within DEI initiatives, can act as a catalyst for systemic change. It allows us to approach challenges with clarity, ensuring our actions and words are guided by a deep understanding of the issues at hand. Moreover, it helps us to maintain our resilience, a necessary trait for navigating the demanding path of advocacy.

As we push for more inclusive and equitable workplaces, the principle of staying present guides us. It reminds us that every moment is an opportunity to effect change, to challenge biases, and to advocate for those whose voices are often marginalized. This focus not only sustains us but also amplifies the impact of our efforts, creating ripples that extend far beyond the immediate.

In embracing the present, we also open ourselves to learning and growth. We become more attuned to the experiences of those we advocate for, fostering a deeper empathy and understanding. This, in turn, enriches our advocacy, making it more effective and impactful.

As we continue to champion the causes close to our hearts, let's remember the lesson from that bridge — the power of presence. It's a tool that can help us navigate the ebbs and flows of advocacy, keeping us anchored in our mission and resilient in the face of challenges.

The Unseen Battle: Chronic Pain and the Performance of Wellness

Ryan and Rachael smile in front of a Matchbox 20 Concert Poster at Jiffy Lube Live on July 27, 2023

Last night, I attended a Matchbox 20 concert at Jiffy Lube Live, an event that had been on my calendar since before the pandemic. The anticipation was high, but so was my pain. A sudden flare of chronic pain, the severity of which I hadn’t experienced in months, hit me just hours before the show. The unpredictability of disability and chronic pain is a constant reminder that it's always with us, even during our most anticipated moments.

As Brijana Prooker beautifully articulated in her POPSUGAR essay, living with an invisible illness often involves a performance of wellness. We mask our pain with smiles, energetic demeanors, and a relentless positivity that hides our suffering. We do this to make others comfortable, to fit into societal expectations of health and normalcy. But at what cost?

For years, I too performed wellness. I hid my pain behind an energetic bubbly persona, concealing my struggle from the world. But as Brijana points out, this performance can lead to further harm. "While I may have succeeded in looking healthy, it had only made me sicker," she writes. The energy we expend to appear "well" can exacerbate our conditions, leading to more pain, more fatigue, and a deeper sense of isolation.

The pressure to appear healthy extends to our social interactions. We extend visits beyond our limits, pushing through the pain to avoid disappointing others. We hide our needs, our pain, and our limitations, often at great personal cost. As Brijana explains, a casual hangout can cost us "days, possibly weeks in bed — and so many spoons, we'd have to wait until next month for them to replenish."

But it's time to break free from this cycle. It's time to prioritize our health over societal expectations and other people's comfort. It's time to make our invisible disabilities visible, to share our experiences openly and honestly. It's time to stop performing wellness and start living our truth.

As we near the end of Disability Pride Month, let's remember that our worth isn't determined by our appearance or wellness. Our worth lies in our resilience, our strength, and our ability to navigate a world that often overlooks us. Our worth lies in our authenticity, in our courage to share our stories, and in our determination to advocate for a more inclusive and understanding world.

I Spent Years Trying to Hide My Chronic Illness For Others' Comfort. No More.