Finding Power in One’s Own Story: A Conversation with Quàna Madison

Editor’s note: The 2025 North American Pain School took place June 22-27, 2025, in Montebello, QC, Canada, where four NAPSters also took part in the NAPS Science Communicators Program. This initiative helps the next generation of pain researchers and clinicians excel at communicating their own research and that of others to diverse audiences. As part of the program, participants interviewed visiting faculty and patient partners. Below is an interview with NAPS Patient Partner Quàna Madison, conducted by Shirin Sadighparvar, one of this year’s Science Communicators.

Quàna Madison is a 2025 NAPS Patient Partner who lives with multiple painful conditions. She has transformed her lived experience of pain into art, healing and advocacy efforts, with a goal not only of helping others who have pain, but also of working with physicians, researchers and advocates to bring about meaningful change.

In this interview, she speaks with NAPS Science Communicator Shirin Sadighparvar, a graduate student at McGill University, Montreal, Canada, to discuss her pain experiences, what it means to be an “artist philanthropist,” what she thinks pain researchers should know about the lived experience of pain, and much more. What follows is an edited transcript of their conversation.

Let’s start with your story, from being a PhD student to surviving multiple traumas and transforming your life through art, mindfulness, and advocacy. It’s extraordinary. I’d love for you to share how your lived experiences have shaped your healing work.

The healing work I do today is entirely shaped by the different experiences I’ve gone through – traumas, complications, and barriers. Listening to others’ stories with similar experiences has also been a major influence.

When I was going through my worst moments of pain – moments that led to suicidal ideation – I had to ask myself: If I’m going to stay in this body, how can I live a meaningful life? I needed to process not only what had happened but also what I continue to live with. I had to find power in my story, a way to help make changes, collaborate, and work with others. Sharing my experiences allows me to humanize complex issues and find meaning through that.

A lot of the philosophies that influence me come from many different cultures, especially the idea of inter-beingness – our deep interconnectedness. So, how can I use my experience to connect with others, support healing, validate experiences, and work with doctors, community members, researchers, and advocates to bring about collective change? Even if that change takes a generation, I find purpose in contributing to it.

Let’s continue with your near-death experience during surgery. You’ve described it as spiritually transformative. What stays with you most from that moment, and how has it changed your sense of purpose?

What stays with me is the feeling that we are not alone. Spiritually, and even in our communities, we are not alone. When we focus on communal power and relationships, that’s profound. That’s sacred.

When we feel alone, we should ask: How can I reconnect? That’s why cultivating belonging and authentic community is so essential. Without that, we don’t have much.

And to answer how the experience changed me, it gave me a whole new direction in life. During the out-of-body experience, I saw what I describe as light beings. Whatever one might believe, they told me I had to go back. I didn’t want to. I said, “This feels good here, I want to stay.” But they insisted: “You have commitments, you have things to do. And you’re not alone. We’ll be with you.”

I took that message seriously. I knew I needed to honor that calling. I felt led to use the arts as a pathway to support well-being, and that evolved into supporting well-being wherever I’m called.

There’s a quote from the Buddha that I love: “Thousands of candles can be lit from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.” I used to stare at that quote when I was immobile and in pain. It reminds me: Let my light shine and use it to light others’ candles. That’s how we add more light to the world, not just in formal settings, but in everyday life.

You embrace the title “artist philanthropist.” What does that mean to you, both practically and personally?

Personally, I believe every artist has their own reason for creating. For me, it’s about giving. I want to be a philanthropist in spirit; how can I give through my art?

Yes, I need income to support myself; that’s the practical side. But philosophically, I want my artwork to make an impact. I often write meditations or messages that accompany my pieces, especially in public, corporate, or medical spaces. These messages offer deeper reflections meant to support healing and inner wisdom.

Philanthropy comes in many forms. I admire those who use their abundance to empower communities. I might not have a lot of money, but I ask: What gifts do I have to give?

Sometimes I do workshops for recovery communities, or women and trans women transitioning out of the justice system and in the process of establishing themselves in the local community. I try to validate and affirm them: You have worth. Yes, your past is part of you, but it doesn’t define you. Everyone deserves to be seen, valued, and nourished.

That’s exactly what it feels like: You’re nourishing people’s souls.

That brings me joy. I know it’s not everyone’s path, but I feel comfortable there. One of my favorite Buddhist teachers, Thich Nhat Hanh, used to say: When you encounter suffering, offer it a cup of tea. Embrace it.

When I see someone suffering, I try not to judge. If I catch myself judging, I pause and reflect. I ask: How can I offer them tea – support – instead? But to do that for others, I have to practice it with myself too.

It’s not just about relieving pain, it’s about understanding why it’s there.

Exactly. It’s not just pain relief; it’s about finding peace and meaning. Pain affects your physical, emotional, mental, spiritual, and communal body. Healing means tending to all those layers.

And it creates opportunities to listen to people’s stories, to understand what led them there.

Yes. Everyone is a story in evolution. The question becomes: What new story do you want to live into from where you are today? Because we don’t know what tomorrow holds, but today we can support your next chapter.

After losing your academic path and facing serious health challenges, how did you find the strength to begin the journey into expressive arts and healing?

That was hard. Losing academia was heartbreaking, because so much of my identity was tied to it. But eventually, I realized: I am more than what I do. I am not defined by my job. We’re not just economic units of production.

If we define ourselves that way, we end up seeing others that way, too. When I left academia, I felt like I was no longer “valuable.” But I began to reconnect with my inherent value, just for existing. That shifted everything.

I came to think of it as “inner peace gardening.” Your identity is the soil. Maybe you’ve been growing corn, and you think, “I’m a corn farmer.” But if you can’t grow corn anymore, that doesn’t mean your soil is worthless. You can grow something else. Learn what your soil needs and nourish it.

Now, I’m doing things I never imagined, and I love my life more than ever. Difficult experiences can burn things away so we can rise again. I’m not who I was, but I carry that past within a new life cycle.

So much growth through the ups and downs.

That’s life. Especially in the world today, with all that’s going on, compassion and community are essential. When we dehumanize others, things spiral out of control. But if we reconnect, see each other’s value, we can heal.

Since we’re here at NAPS and you live with multiple chronic illnesses, what’s one thing people often misunderstand about living with invisible pain?

People often think of pain as one thing, but it’s not; it’s often multiple pains happening at once. I used to sing in an a cappella choir, so I think of it like that: Different voices, sopranos, altos, all layered together. Some days the pain is in harmony, like they’re all calling out in unison. Other days, it’s dissonant, five or six distinct voices of pain coming from different parts of the body.

The pain shifts constantly. And that complexity gets missed, especially in research where things are structured for clarity and simplicity. That model makes sense for scientific rigor, but when you try to apply it to real, complex lives, there’s often a disconnect.

There’s also missed knowledge when we don’t listen to people’s stories. Stories can reveal mechanisms or patterns that a researcher might otherwise overlook. That’s why it’s important to deeply understand how pain shows up in someone’s daily life.

What advice would you give to researchers about making space for stories that don’t fit traditional career models or timelines?

Embrace the non-traditional stories. There’s so much richness and insight in them, and when we ignore that, we create systemic barriers. Most people’s lives don’t follow neat, linear paths. That should always be part of our framework when designing studies or asking research questions.

Whose voices are missing? Whose perspectives could shift the way you understand your topic? Even in exploratory research phases, diversify the stories you consider. That openness can bring completely new insights.

So, it’s okay to be brave and take on those challenges. It opens up new perspectives.

Exactly. And a lot of people on non-traditional paths want to support researchers. When you show that you see them and want to listen, it gives them hope, too. It can be a two-way collaboration. Researchers can ask: How can we help advocate for and support what you’re doing?

You’ve worked with communities facing systemic barriers – LGBTQ+, BIPOC [Black, Indigenous, People of Color], and recovery populations, who are people healing from addiction or systemic trauma. What have you learned about building safety and trust in those spaces?

First, you have to go beyond just knowing terms like “trauma-informed” or “healing-centered.” Ask: What does it actually look like when someone doesn’t feel safe? How does that show up? And what can you do to support them?

It takes time to build trust. Let people get to know you and take time to learn about their needs. Go in with an open mind and a commitment to keep learning.

I often think of it in terms of parenting or caregiving. Imagine a four- or five-year-old child: What would make them feel safe? Being seen, having their needs acknowledged, and knowing someone genuinely cares.

Language matters too. Sometimes we talk about “populations” in ways that unintentionally create distance. Consider when to shift your language to center people as human beings, not as data points.

It’s about listening to people’s stories. Whether you’re working with a local community or a larger group, how are you showing up to hear and understand their stories? That’s where trust begins.

And if you make a mistake, which we all do, own it. I’ve certainly had moments where I said something that landed wrong. Taking responsibility, learning from it, and continuing from a place of compassion is key.

How do you stay grounded while doing advocacy work, especially when it involves holding space for others’ pain or revisiting trauma?

I practice well-being through multiple lenses. For my physical body, mindfulness helps me tune in moment by moment. For my emotional body, I ask, “What am I feeling?” and find ways to express that, whether through art, conversations, or therapy.

Mentally, I check in with my thoughts and boundaries. Spiritually, I ask what nourishes that inner part of me. And communally, I lean on my support systems, friends, family, community, especially when I need grounding.

I’m a pain researcher who studies neurons, circuits, and molecules. What do you wish people like me understood better about the daily experience of pain, especially for underrepresented groups?

Even if you’re not working directly with communities, you can still hold one or two personal stories in mind, stories of people you hope your work will help. Keep a photo or a quote nearby. Let it remind you why you do this, especially when experiments are frustrating. Those stories can ground your work.

Also, try to learn about systemic barriers people face. For example, I’ve had pain specialists tell me I didn’t feel pain because I’m Black. That’s a myth with real consequences.

But I’ve also had doctors who weren’t from my background but took time to learn about these disparities. One asked if social determinants might be affecting me, and that shifted our treatment conversation. Those are the kinds of thoughtful approaches that make a huge difference.

And a lot of medical research has been based primarily on male subjects. That can create major blind spots, especially in women’s health. There are missed opportunities for discovery when we overlook those differences.

Let’s switch gears a bit. What does joy look like in your life today, not as performance, but as a real, lived practice?

Joy is savoring life. After my near-death experience, I had two more life-threatening events last summer: a surgical complication and sepsis. I’m deeply grateful for the care that saved me.

That experience made me slow down. Now I savor the little things, like lying in bed and appreciating that I’m here. At lunch today, someone teased me for eating slowly. I said, “Yes, because I want to be present. I want to savor this.”

Connection also brings me joy. One of the best parts of this pain school is meeting people – staff, faculty, even families by the pool. That sense of human connection is a gift. If you only had one day left to live, how would you spend it? Why not live that way every day?

What are you still learning about yourself through your art, teaching, and community work?

I’m learning that I love being a lifelong learner. The more I engage, the more curious I become.

And I’m learning that I can have a real impact by using the gifts I already have. We sometimes underestimate how much we can do. It’s not about having power or status. It’s about showing up with what we’ve got.

One of my professors once told me about women in Uganda who stopped a violent conflict, not because they were politicians, but because they cared. They used their voices and their presence. That story stays with me.

So, I ask: How can I keep evolving? Where is my calling taking me next? Everyone can have impact, not just through their work, but through their humanity. We’re all sharing space. We’re all connected.

You work with organizations like the National Pain Advocacy Center. What’s one systemic change in pain care or research you’d like to see in your lifetime?

More research on hyperalgesia. I have it, and so do others I know, and we need better understanding and management strategies.

Also, we need frameworks that help patients “learn up” – instead of just simplifying everything, we should empower people to understand complex terms and concepts. That can improve outcomes.

When I was in a doctoral program, I learned how to read research papers. That helped me advocate for myself. I once emailed a research oncologist whose paper I read, and he later became my doctor. That changed my treatment path.

Another doctor told me that early ovary removal increases heart disease risk. That research informed how I take care of my heart today. If I hadn’t been able to access and understand that research, my health might have suffered.

So yes, simplify information, but also give people the tools to learn up. Encourage more collaborations between clinicians and patient partners.

If you could speak to the Quàna who had just left her PhD in 2017, what would you say?

I’d say: Have hope. You’re still on the right path. Everything happening now won’t stop you from finding the fulfillment you were seeking when you started your PhD.

Life can take wild, unexpected turns, and that’s okay. Embrace it. You might end up in a better place than you ever imagined.

I don’t want to go through that painful path again, but I don’t regret it. I’m grateful for where I am. And if I live to be 100, I’ve still got decades ahead to keep evolving. Embrace the unknown. You are valuable. You are not defined by a title.

So beautifully said. Thank you so much for your time. This was a truly wonderful conversation.

My pleasure.