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Lucinda Koza: “You have the power to shape our future”

I imagine a Conscious Empathy movement: where complete strangers agree to meet virtually (or in-person), and are matched with someone who is demographically very different to them — ethnicity, socio-economic background, gender identity, and so on. These people go through a list of questions, from sharing a typical day in their life to their deepest fears. Then, […]

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I imagine a Conscious Empathy movement: where complete strangers agree to meet virtually (or in-person), and are matched with someone who is demographically very different to them — ethnicity, socio-economic background, gender identity, and so on. These people go through a list of questions, from sharing a typical day in their life to their deepest fears. Then, the two people switch roles. Both people share, which increases the likelihood of forming a bond, and both people feel heard. I believe that, in order for positive change to occur, it starts with the heart and it starts with empathy. If we could all shed our armor and be vulnerable with each other, and also be willing to look within ourselves and consider that we might need to grow and learn and change — there’s no limit to what we can achieve together as a community.


As part of my series about people who stepped up to make a difference during the COVID19 Pandemic, I had the pleasure of interviewing Lucinda Koza. In late 2018, Lucinda’s father suffered a debilitating stroke which caused him significant brain damage. Lucinda then became her father’s sole caregiver. The isolation and lack of resources she experienced reached a frightening peak during the COVID-19 pandemic, causing Lucinda to become determined to find solutions for both herself and other family caregivers. Lucinda found a partner in Golden Volunteer, an organization that helped her create a mutual aid platform for caregivers. On this platform, someone could post a need, ranging from supplies like bleach or PPE to asking someone to perform a wellness check on her father if she couldn’t reach him. In response, someone could reply on the platform with an offer to check on her father or share extra masks. This was the first time since Lucinda became a full-time family caregiver that she experienced kindness and community. It also became the first working piece of I Ally, a web and mobile app she has since created to provide young family caregivers like herself with the resources and advocacy they need.


Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit. Can you tell us a bit about how and where you grew up?

I grew up in Columbia, South Carolina. My father was in the South Carolina legislature for 13 years, and we lived in the district that he represented. Before I was born, he worked with the United Citizens’ Party to fight for African American candidates to be allowed to run for office. In the legislature, my dad was the only man to vote ‘yes’ to allow women to attend The Citadel. I loved growing up in the south; my dad taught me to love the state despite its flaws, and he believed in fighting for what was right where it was most needed.

Is there a particular book that made a significant impact on you? Can you share a story or explain why it resonated with you so much?

I went to the SC Governor’s School for the Arts where I encountered The Right to Speak by Patsy Rodenburg. Rodenburg believes everyone has the right to use their voice freely and without fear, and that it can be the most powerful and pure method of expression, communication, and of provoking empathy. In a society where so many are told to be quiet, it becomes rebellious to use your voice. This made a huge difference in my life. Growing up as a woman in the south, where there are still echoes of “be seen but not heard” or “don’t intimidate the boys by being too smart,” this book helped me begin to see myself as someone who had the right to share my opinion.

Do you have a favorite “Life Lesson Quote”? Do you have a story about how that was relevant in your life or your work?

Talent is distributed equally. Opportunity is not. There is a quote by Stephen Jay Gould: “I am, somehow, less interested in the weight and convolutions of Einstein’s brain than in the near certainty that people of equal talent have lived and died in cotton fields and sweatshops.” This quote made me realize the importance of action. Without taking action, people will continue to live and die at a disadvantage, never having told their story. The only way we can see a systemic, societal change in our lifetime is through organized, community allyship. Someone has to reach out their hand and bring someone new to the table, to give an opportunity to an unlikely candidate, to provide a platform for people to tell their stories.

Ok, thank you for all that. Now let’s move to the main focus of our interview. You are currently leading a social impact organization that has stepped up during the COVID-19 Pandemic. Can you tell us a bit about what you and your organization are trying to address?

Absolutely. After my father had a stroke in late 2018 and I became his sole caregiver, I was completely on my own. I was so young, and I had no idea what I was doing. I had to take over his finances at a point in my life when I was just trying to figure out my own. I lost a good job because I couldn’t leave my father alone. I had to make decisions about his care and his life, and the whole time I was devastated and overwhelmed, desperate for someone to tell me what to do. No one ever did.

I began to notice other young family caregivers in the waiting rooms and hallways of hospitals and rehab centers where I sat. I started to see them desperately asking questions and seeking advice in the online forums I visited.

It was then I started to realize the scope of the problem that young family caregivers were facing. Taking on the care of a loved one while completely by yourself puts you at risk for anxiety, depression, burnout, financial ruin, and worse. For young people especially, there’s a risk of complete life derailment— how do you re-enter the workforce or get your mental and physical health back on track, when you are in the crucial years of building your career experience?

I knew that if there were some way to connect us all, we could be there for each other — then we wouldn’t be isolated, and the chances of recovery would be much greater. When the pandemic became a firm reality in the United States, it was almost as if I could feel all the other family caregivers collectively panic. Now, there would be isolation, and we would be potentially cut off from the coping mechanisms we use to effectively care for our family members, as well as ourselves. There would be a shortage of cleaning supplies and toilet paper and a rise in food insecurity. If you had a job before, you would probably lose it now. Add this stress to the fact that the person you care for is a member of the vulnerable population, requiring extra vigilance and protection against the coronavirus.

Anxiety about health, anxiety about caregiving, and anxiety about the future started to reach an unimaginable crescendo. This is when I created what would become the first working piece of I Ally, the holistic support app for family caregivers. I Ally is a nationwide mutual aid platform for caregivers. Anyone can post a need or ask for help, and any volunteer could respond with an offer to help. It could be simple like needing grocery delivery, or it could be more complex, like me asking a fellow caregiver to perform a wellness check on my father.

As I continued to build the prototype for I Ally, I knew that access to Telehealth was paramount. This would be for the patient/parent to see a provider without being exposed, as well as an opportunity for the caregiver to receive mental healthcare. I partnered with Doxy.me to host our own native Telehealth solution as well as many providers including therapists, psychologists, speech-language pathologists, physical therapists, dieticians, yoga instructors, and more. I partnered with Backpack Health to provide caregivers a way to store all their medical paperwork as well as their parent’s in one mobile place, putting them in charge of their documents. I’ve also found financial educators and legal providers willing to share their resources and expertise for the I Ally app. My mission is to empower the family caregiver with resources and access to help that make them feel like they are in charge, rather than a victim.

In your opinion, what does it mean to be a hero?

A hero will do what they know is the right thing to do, whether it’s hard, scary, lonely, unattractive, or unpopular. They do the same thing if no one is watching or if everyone is watching. They stand for something, and they stick by that even when it’s not convenient; they answer to their own inner compass and are guided by it.

In your opinion or experience, what are “5 characteristics of a hero? Please share a story or example for each.

  1. Selfless curiosity. The first time I met two-time Pulitzer Prize-winning playwright Lynn Nottage, one of my best friends was working for her. Watching her play ‘Ruined’, about women in war-torn Africa, had been one of the most transformative experiences of my life. When I met her, I was ready to gush about her play, but she didn’t even give me time to praise her — because she was genuinely interested in who I was and what I had to say. She asked me so many questions and made me feel like I was special. It made me realize, she doesn’t need to talk about herself! She has the capability to be fascinated by people and situations that have nothing to do with her, because they’re part of the human experience, as we all are, together.
  2. Willpower. I was going to say fearlessness, but it’s not that. We all feel fear, and we can’t control what we feel. It’s feeling the fear but doing it anyway. Even if you’re terrified of something and feel like you cannot do it, you remember that your higher self would want you to do this, and you remember that you can do it, and you want to do it because you know it’s right. It’s also having faith in yourself that even though something seems scary in the short term, it’s something you can accomplish. That’s when you use willpower to push through that momentary fear.
  3. Empathy. Empathy is a crucial trait for a hero. Empathy is the ability to feel someone else’s pain. Empathy is knowing we are all connected and that we all feel the same feelings. This is why art is so important — we recognize our own humanity in the stories of others. There’s a John Steinbeck quote, ‘You can only understand people if you feel them in yourself.’ I love this because when you take away superficial attributes that make someone else seem different, you find that the basis of their experience is something you have experienced, too. If we all did that work, there would be no hate, indifference, or violence.
  4. Presence. Bringing your full self to every moment. That way, you are grounded in your truth and able to make a snap-decision without being gaslit or dissuaded. You are able to act swiftly based upon your principles and your knowledge of who you are. When I was on the phone with my father and he said he didn’t know where he was, the world was asking something of me. I made a snap decision to take responsibility for saving his life. It was a defining moment.
  5. Accountability. Willing to be ‘on-the-hook.’ Willing to be the one who is talking loudly, who stands up and says ‘this is not right’ — knowing they will take the punishment or consequences. Standing up for those who aren’t able to or don’t have the opportunity to stand up for themselves. The simplest form of this is when a kid stands up for another kid who is getting bullied on the playground.

If heroism is rooted in doing something difficult, scary, or even self-sacrificing, what do you think drives some people — ordinary people — to become heroes?

I don’t remember who said this quote, but bravery isn’t supposed to feel good in the moment. It’s about facing your fears and standing up for your beliefs. I think what drives people to become heroes is the sense that the risk of doing the scary thing pales in comparison to the risk of not doing the scary thing. There’s a feeling of being accountable to yourself. You won’t be able to live with yourself if you don’t do what you know is right. That’s a feeling anyone can have — it just might not come into play until their ‘defining moment.’

What was the specific catalyst for you or your organization to take heroic action? At what point did you personally decide that heroic action needed to be taken?

Just before COVID-19 reached the United States, we were in the midst of planning my father’s move from his apartment in South Carolina to our home in New Jersey. Then, it seemed like the pandemic swept in so suddenly. Knowing my father has a weakened immune system and is vulnerable, I decided he should stay exactly where he was to avoid exposure. I had to stay in New Jersey. My father cannot use technology, and my biggest fear was that I wouldn’t be able to get in touch with him. Maybe his phone would stop working, or he would forget how to use it, and he would run out of food. Or, he would get sick and not know what to do about it. I had to establish some way of being able to know he was okay. I wondered if there was a way, other than calling 911, I could contact someone in South Carolina and ask them to perform a wellness check on my dad. I did some research, and the organization Golden Volunteer was creating mutual aid platforms for the pandemic — where someone could recruit volunteers to perform various tasks. I contacted them to ask if I could use the platform to create my own mutual aid platform for caregivers. Not only did they say yes, but they also helped me create a branded mutual aid platform for I Ally. Caregivers could post a need or ask, from needing supplies or needing to know how they could get coronavirus testing in their area or needing help with grocery delivery, and another caregiver or two (or three!) could respond with an offer to help. This way, instead of waiting for someone or something else to solve our problem, we were doing it ourselves. We could depend on each other.

Who are your heroes, or who do you see as heroes today?

The healthcare workers who are the only ones who haven’t been able to isolate — the nurses and doctors who, rather than sit back and disappear, have gone into overdrive during the pandemic. They’ve launched themselves into possibly the most intense time of their careers. I’m sure they had moments of being terrified, but this was their defining moment.

Those who go beyond ‘thoughts and prayers’ and take action are my heroes. Taking action can be as simple as bringing food over to your neighbor’s house when you know they are dealing with a crisis or grief. Taking action can be just showing up and sitting with your friend so they aren’t alone. In real moments of crisis, those who do something for someone else are heroes.

Let’s talk a bit about what is happening in the world today. What specifically frightened or frightens you most about the pandemic?

I’m frightened we won’t find solutions quickly enough. I’m frightened there will be a resurgence after some states and countries start reopening. What frightens me most of all is that I don’t know what the future looks like. Of course, there was no way to know that anyway; but now, the pure uncertainty is hard to grapple with.

Despite that, what gives you hope for the future? Can you explain why?

I really feel that everyone has undergone a massive collective introspection. Life, as we knew it completely, changed in what felt like an instant, and there isn’t a single person who did not feel the effects. Some people felt it differently than others — they got sick, their family members got sick, they started taking care of people who were sick…or they lost their job, their business or they haven’t been able to see their family in months. We are all, in a way, alone with our thoughts, yet keenly aware of others’ struggles at the same time. When we see someone, even a stranger, we look into each other’s eyes and it’s different. Our looks say, ‘how are you dealing with this?’ Our looks are empathetic, inquisitive, and genuine. I hope that we come out of this with an incredibly strong bond. I hope that we come out of this more grateful for each other and make space for each other in our lives.

What has inspired you the most about the behavior of people during the pandemic, and what behaviors do you find most disappointing?

There are two behaviors that people have seemed to fall into as a response to the pandemic. One is those who have made themselves even more available. Their response is to figure out what they can offer, and they extend themselves and put themselves out there as a resource. They feel that we need each other more than ever, and so they’ve figured out their way of safely responding — whether it’s volunteering or donating their time and resources. The other behavior seems to be shutting down and disappearing, which, while understandable, is disappointing. The behavior that’s been the most disappointing, however, is those who have ignored safety precautions like wearing a mask or social distancing. It shows they are not thinking of others who are more vulnerable. They’re not even thinking of the future of our society. The reason those precautions are in place is to flatten the curve — for everyone, for our country, and for the world.

Has this crisis caused you to reassess your view of the world or of society? We would love to hear what you mean.

Yes. I’ve realized that changes are made by those who are willing to stick their neck out and give voice to their ideas. Changes truly don’t come from the top down — they are built from the bottom up. It’s up to us to band together and listen to each other. If we are given advice from experts and authorities, it’s up to us to actually follow that advice. It’s up to us to help each other and it’s up to us to flatten the curve. So many people are complacent, and complacency is the enemy! Our society is truly shaped by how complacent and silent or active and vocal its citizens choose to be.

What permanent societal changes would you like to see come out of this crisis?

The deluge of companies and organizations that have given loan and/or mortgage payment relief, who have built grants and scholarships and given loans to businesses and free resources to social impact organizations — I never want that to stop! There are always people in need and people at a disadvantage. The willingness so many have had to listen to those people and consider providing actual funds and resources is astounding. I hope this environment of having the bravery to ask for help and having the bravery to offer help never goes away!

More specifically, I hope the relaxation of regulations surrounding Telehealth not only remains but motivates a movement toward the democratization of healthcare and access to healthcare. As a caregiver, you don’t have time to go see a doctor yourself, and you likely don’t view your own care as a top priority. Telehealth gives caregivers access to see a doctor or therapist with so much more flexibility. In addition, the parent or patient that is being cared for benefits greatly from Telehealth as well, especially if they have limited mobility, and want to limit exposure during the pandemic. I hope we continue to make access to care easier for the caregiver and patient, because it’s not only the right thing to do, having more empowered and educated citizens benefits our healthcare system at large.

If you could tell other young people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?

You have the power to shape our future. No one is going to save us but us! We have many disadvantages when it comes to the economy, unemployment, and more, but we also have unending grit, talent, innovation, and dedication. Step up, speak up, and do it yourself because no one else is going to do it for you.

You are a person of great influence. If you could start a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂

I imagine a Conscious Empathy movement: where complete strangers agree to meet virtually (or in-person), and are matched with someone who is demographically very different to them — ethnicity, socio-economic background, gender identity, and so on. These people go through a list of questions, from sharing a typical day in their life to their deepest fears. Then, the two people switch roles. Both people share, which increases the likelihood of forming a bond, and both people feel heard. I believe that, in order for positive change to occur, it starts with the heart and it starts with empathy. If we could all shed our armor and be vulnerable with each other, and also be willing to look within ourselves and consider that we might need to grow and learn and change — there’s no limit to what we can achieve together as a community.

Is there a person in the world, or in the US, with whom you would like to have a private breakfast or lunch, and why? He or she might just see this, especially if we tag them. 🙂

Melinda Gates. She is constantly thinking about the future of society as a whole and what she can do preemptively. She is a thought leader, she’s unafraid, and she follows through. She’s the opposite of small-minded. She can, and does, actually make things happen that improve the human experience.

How can our readers follow you online?

Instagram: https://instagram.com/lucindarogerskoza

Twitter: https://twitter.com/gotitdonegal

Facebook: https://facebook.com/iallyinc

This was very meaningful, thank you so much. We wish you only continued success on your great work!


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