Community//

Carlos Quesada: “Get yourself out of your bubble”

Put yourself in other people’s shoes. Get yourself out of your bubble. Understand how and what we do, and the decisions we make in life, affect others. Pretty quickly, you will start understanding why taking care of the environment is the right thing to do, why supporting the less privileged is the right thing to […]

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Put yourself in other people’s shoes. Get yourself out of your bubble. Understand how and what we do, and the decisions we make in life, affect others. Pretty quickly, you will start understanding why taking care of the environment is the right thing to do, why supporting the less privileged is the right thing to do. How can you possibly judge or understand other cultures, races, sexual orientations if you purposely distance yourself from all of them? Why should you do it? Because it is the only thing you will take with you to the grave; how you have changed other people’s lives and the place we live on.


I had the pleasure of interviewing Carlos Quesada CEO of the Epilepsy Foundation of Northern California.


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

I was born and raised in Zaragoza, Spain. I am the middle child of three boys; I was fortunate to grow up in a very loving and close family environment but in very modest conditions. My father did not set foot in a school until he was nine years old, and he had to quit school at age 14 to work and support his handicap mother. Because of all the struggles he had during childhood, education was always our principal responsibility even at a very young age. My father was able to send my brothers and me to private school thanks to partial scholarships; it was a great sacrifice financially for my parents, but education was the most important thing for them.

After struggling with direction in my college days at Business School in Spain, I had the opportunity to move to the United States to further my education. While there, I found my passion in the creative field of Photography, which ignited my dreams and opened the door to a successful business career.

Life has presented many challenges to me that have surprised me. In the early 1990s, I left Europe to seek adventure and creativity for myself. This initial journey led me to operate one of the most sophisticated and complicated companies in the Midwest. The adventure that started with my passion for photography led me to GENESYS, a Systems Integrator in Kansas City, Missouri. In the beginning, I took photographs of their custom material handling equipment, and from there opportunities presented themselves. I developed and managed their Safety and Health program in a millwrights and ironworkers environment. I achieved a one-year injury-free setting in the company with the help of our Union Shop and Field Group. Later I was given the opportunity to develop the Human Resources Department.

When the IT guy quit, it opened a new world for me to connect the information management world with the real operations of a company. I developed new tools in this area using various software types, creating databases that today manage over $80,000,000 worth of engineering, manufacturing, and installation projects. These databases served companies such as Owens Corning, General Motors, Mercedes, Boeing, Caterpillar, Toyota, BMW, VW, FedEx, Phillips, and Nissan, all blue-chip companies that recognized our organizational skills and systems.

​My successful career took me to Executive Vice-President in the company. This journey ended in 2013, when I lost my late wife to cancer. That event forced me to start a new path away from my life in Missouri. My purpose was recovery from the grief experienced at her loss, and so I journeyed throughout the Northwest into Alaska. That trip ended seven months later in Maui where I lived for four years and met my new partner and wife, moving to Bay Area California in 2017 where I began a new career in the non-for profit world.

Life has thrown many challenges in my path, and I have accepted them. More than that, I have accomplished much more than I could ever have imagined for myself. I know the key to success is to stay focused on the goal, to have vision and confidence. I learned how necessary it is to continually profit from both mistakes and successes, whether in the business world or personal life. Both worlds connect at all times.

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?

Professionally:

– Dave Ramsey’s “Good to Great.” The basic concept to strive to become a better organization and never be complacent was key on developing my career as a manager and a leader in my company — and it all applies to non-for profit as well.

– Dave Crenshaw’s “The Myth of Multitasking: How “Doing it all” gets nothing done.” What if you can increase 5% productivity in all your employees in one single step? Kill multitasking and you just did, actually is more like 30% productivity increase, not in all cases and job descriptions but most.

– Richard Bach’s “Jonathan Livingston Seagull.” My father gave me this book when I was very young. I have read it many times, and each time I do, I learn something from it. It is all about going against the current and never be afraid to be different. It also teaches about the true meaning of leadership.

Personally:

– J.R.R. Tolkien’s “Lord of the Rings.” The ability to create a whole imaginary world with such detail blew my mind as a teenager and inspired me to be creative and free my mind. And also, one of the best satires about our world’s good and evil ever created.

– Ken Follett’s “Pillars of the Earth.” History put in perspective learned how some things go farther than one single lifetime, and unfortunately, how much history repeats itself.

– Dominique Lapierre’s “The City of Joy.” The true meaning of unconditional love.

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

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”- Mark Twain

In November 2012, I lost my late wife, Susan, to cancer. She was my companion and best friend for eighteen years. She was the most influential person in my life, and her loss was the hardest phase of my life but also the most enriching. After losing her, my life became frozen in time; I felt like I had no direction or purpose. I had included the above quote from Mark Twain in my email signature for many years, as a reminder to myself that unless I sail away from the safe harbor, I was never going to overcome that time in my life.

Five months after losing her, I quit my job as Executive Vice-President (a 14-year long career that took me from sweeping floors to Senior management). I sold my house and all its content and traveled, by myself, to Alaska where I stayed for six months; Just me, my camera, and a mind wide open. That trip was the beginning of a new amazing phase of my life that continues today.

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. Can you tell us a bit about what you and your organization are trying to address?

When I decided to refocus my energy and career in the non-for-profit world, I started searching for an aspect of our society that could use my knowledge and experience. I did not know where I would fit in, but I knew I wanted to help make a difference. A few years before I moved to California, I went on a mission trip with a group of doctors from John Hopkins to Haiti. I found their passion for helping the most unfortunate very enriching, so it was not a surprise that I ended up being involved in a neurological disorder like epilepsy.

One of the critical aspects of what we are trying to address as an organization is the extreme ignorance surrounding epilepsy, its causes, and the challenges of living with seizures. 26 is the number. Think of a busy street outside the COVID19 days, how long do you think it will take you to count 26 people? Not long, right? One in every 26 people is diagnosed with epilepsy in our country. It affects all ages, all races, all gender, all income levels, across the board, 1 in every 26 will be diagnosed with epilepsy. The first time I heard this statistic, I honestly could not believe it. I asked myself, if that statistic is accurate, I should have come across many people living with epilepsy, right? It only took a couple of days to learn family members, friends, friends of friends, parents, children of people I have known all my adult life were living with epilepsy. That was it. That was what intrigued me and sparked a passion for sharing the Epilepsy Foundation of Northern California’s mission. Of course, once you start digging into the substantial effects that living with seizures have on our society, the number of goals and the impact I could have in our community was limitless.

The Mission of the Epilepsy Foundation of Northern California is simply to make sure those suffering from seizures are in the hands of qualified physicians and be a support mechanism to all those leaving the doctor’s office with a new difficult journey ahead of them because of epilepsy. Epilepsy is the fourth most common neurological disorder in the United States after migraines, strokes, and Alzheimer’s. Its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis, and Parkinson’s disease combined. Despite how common the condition is, and the significant advances in diagnosis and treatment, epilepsy is among the least understood of the primary chronic conditions and receives a fraction of the financial support.

Many of us have ideas, dreams, and passions, but never manifest it. We just don’t get up and do it. But you did. Was there an “Aha Moment” that made you decide that you were actually going to step up and do it? What was that final trigger?

There are a few moments in my life when I experienced the “Aha Moment” you describe. The first one was during my college years in Spain. I was lost, and I felt pressured by the disappointment I was becoming to my parents by not excelling at Business School. My whole life, I had been a follower. Behind my brother’s path, my parent’s opinion on who I should become, my high school friends’ paths, etc. The following was not taking me anywhere, and I knew it. One day I came across a fascinating sport, canyoning. I have never seen anything like that. I had always had a passion for mountain sports, mountaineering, skiing, back country skiing, mountain biking, wall climbing. Still, I had never seen a sport that would take you inside some of the most fascinating natural spaces you can imagine. I knew I had to try it, so one of my best friends and I decided to sign up for a canoeing class. Last-minute, my friend backed out, and I saw myself facing a decision that was not easy for me: starting a new adventure in my life that was my own for the first time. I did not know anybody, I had never done anything like that, and it was my own, it was my thing. That simple decision opened my mind and my dreams. I gained the confidence I needed to start new adventures as I saw myself reflected on new people, different from what I was used to or raised around.

The second “Aha Moment” came at the darkest hours of my life. After my late wife’s passing, I knew my place was to become a strong column on her family, show strength and resilience, and always look forward with hope. I did that, but I did it for all except for myself. That drove me to a deep depression that almost costs me everything.

It was a Wednesday, in the morning. I drove the 25 minutes that took me to my office; I cried all the way to work, a deep, dark sadness that surrounded everything. When I got to the office, I stared at my computer screen for what seemed an eternity incapable of reacting to my emails or the long list of tasks lining up in front of me after my latest promotion. I could not be there! I told my assistant I needed to go home. On my way home, sadness became anger; I was so angry at myself that it seemed to me as a complete failure to move on with my life. I was mad at how disappointed Sue would be at me for not moving forward, that is not what she wanted for me. So, I put my problem-solving skills to work. I knew I needed to find an answer. I had read books about grieve, reached out to close friends, but nothing made sense to me. I had to get to the solution, and I knew I had to get myself in the right surroundings to find the answer.

At that time in my life, I had completed three trail marathons, and my time in the trails was purifying and mind-clearing, so I knew that should be the place to find answers. I changed my clothes and got into the trail with the commitment that I would not stop running until one single step to recovery was presented to me. I never thought I would find not just the first step but the whole answer. After a couple of hours of running and crying and thinking and breathing, I figured it out. It was time to start a new life; it was time to leave all behind and dedicate all my energy and time to overcome grief, and my long life dream to drive to Alaska from Kansas City, MO, was the answer. I went home; I put the house on the market and the next day I gave my notice. The very next weekend I listed the whole contents of the house on Craigslist, only keeping the unreplaceable items we’d collected over the years.

Two weeks later, I left Kansas City with my little travel trailer behind me on a six months journey that saved my life. During my amazing journey, I found the power to change and the power to fear. It taught me more about myself than anything else I have ever experienced, but that is another different story.

Can you tell us a story about a particular individual who was impacted or helped by your cause?

The epilepsy journey is complicated and made up of many puzzle pieces you must constantly rearrange to achieve seizure freedom or at least to learn to cope with the challenges you face every day. As I said before, ignorance about epilepsy and seizures, where they come from, how they affect us, and how our community deals with them is a critical part of our daily work. One of the most powerful tools we have to fight ignorance and the stigma associated with this neurological disorder is media and in particular cinema. I remember the effect “Rainman” had on me and my understanding of autism. One single movie has the power of changing society forever, which brings me to Miles Levin. Miles is a young cinematographer living with refractory epilepsy, which means his seizures are not under control no matter what medications he is prescribed. He has been part of our summer camp for children living with epilepsy for many years, Camp Coelho, named after senator Tony Coelho. Every year Miles would make a short movie from camp, the highlight of our Gala Fundraiser year after year. Miles came to us needing help with an idea. He had written a short movie telling the story of a boy living with epilepsy and his fear of attending prom, as the strobe lights would surely trigger seizures. The idea was fascinating, so we jumped in immediately, helping him fundraising most of the money needed to produce the film. He cast two Disney professional actors, hired an LA-based production company and the rest is history, “Under the Lights” will be shown at many Film Festivals around the country, once we go back to some level of normality. It was a privilege to watch the movie before most people, it was just Miles and I at a theater, and the impact that had on me still resides every day as I start my workday. I know the movie meant the world to him.

I know the question was, “tell us a story about a particular individual who was impacted or helped by your cause.” Miles came to my mind, but honestly, it was me who was most impacted by this particular endeavor. I have no doubt it will affect the hundreds of thousands of people who will watch the movie, hopefully changing them forever.

Secondly, each year the Epilepsy Foundation of Northern California hosts a summer camp for children living with Epilepsy and, it is by far the most enjoyed program offered by the Foundation. For so many children who are living with Epilepsy, this is the first time they meet another person living with the disease. It has a significant effect on each camper’s confidence and their understanding of living with Epilepsy. And for the parents, well, for many, it is the first time their child with the disease is able to spend an extended period of time away from them, enabling them to be able to take six days off and have a short vacation, knowing their kid is in good hands. I am fortunate to be part of camp every year, and we require all employees to spend a minimum of a couple of days at camp, not as much to help but to learn and enjoy.

Many of those kids came back home from camp having experienced some type of normalcy, feeling part of a community, actually saying that they feel lucky to have Epilepsy because if it were not for it, they would not have such great friends. This is an actual statement from one of our kids from camp:

“There are many things I have accomplished in my 13 years of life. My biggest accomplishment, however, is learning to deal with my seizures. Seizures are big things in my brain and I have to take medicine everyday. 1 in 26 people have Epilepsy and that makes me special even though it can be scary sometimes. In conclusion, I think that my Epilepsy makes me a stronger person.”

I do not doubt that camp has changed many of these kids’ perspectives on Epilepsy, and I am so proud to be able to be part of that process.

Are there three things that the community can do to help you in your great work?

There are not just three things, and it would be almost impossible to choose just three. Epilepsy affects our community in such diverse ways. Here are just a few highlights.

Number one by far: “Learn about epilepsy and seizures.” Take the seizure first aid training class offered by the Epilepsy Foundation chapter near you. Most offices offer the class free of charge and online or in-person options are regularly available. Knowledge is the most significant tool against stigma, ignorance, bullying, and empowers you to support those living with seizures. Some of our kids who come to camp, they said they made their first friend in their time at camp at age 14. If his / her classmates, teachers, and counselors could better understand what a seizure is and where it comes from, they would not be as afraid of a seizure. They would not make fun of it. Instead, they would feel compassion and would be driven to support them and make them feel less isolated. Once you learn, teach it to others. Don’t be afraid to speak about it; it is so common. Every school, every midsize company, every sports organization, has at least one person affected by epilepsy, guaranteed.

We know so little about the brain and its complexity. For the big majority of people living with epilepsy, we don’t know what causes seizures. We need to increase the funding for research exponentially. Even when the progress on drugs and devices have made great strides in the last decade. But there is still a long way to go to be able to say we’ve found a solution. We need more medications with fewer side effects. Technology that can decipher the mysteries of our brains, and for that, we need funding.

While we wait for the long, painstaking process of new solutions, we need to keep supporting those who have not found answers, and we also need funding to allow them to keep exploring. We need to develop and expand programs for job placement, education scholarships, school support, parent support, housing, transportation so they can keep their jobs and stop their isolation.

In California, if you are diagnosed with epilepsy, you immediately lose your driving license. In many occasions that causes the individual to lose their job, lose your health insurance and subsequentially their ability to buy the expensive antiseizure medication they so desperately need. Those people did not do anything wrong. Their brain started to misbehave, and suddenly their lives are in total disarray. As a society, we need to acknowledge the cycle and provide support to them and all others living with disabilities. We are moving in the wrong direction as a society where the survival of the fittest is predominant; we need to change that. Another important thing we can do to help our community is to support legislation that gives hope to the unfortunate ones. Get involved; ask the questions to your lawmakers; are they going in the right direction, and do they even understand the reality of our community?

How do you define “Leadership”? Can you explain what you mean or give an example?

For me, there is only one definition of leadership: “expect from others only what you expect of yourself, lead by example, lead by example, lead by example.” Do you want people to follow you? Give them a reason to do so. Do you want your team to be productive? Respect your time, respect their time, respect their potential by always give your best. I was fortunate to start from the bottom before working my way to the top, so there are very few tasks I have not done myself in my career, so I will never ask anything I would not do myself. And for those who said as CEO you should not do certain tasks… I don’t agree, some time to do small uncomfortable tasks reminds you of what you are asking your team to do and brings us down from our C-Level Pedestal for a little bit. An example, I helped to give a towel bath to one of the boys with learning disabilities at camp after too many days without a shower, I sure gain the respect of the nurses after doing that. (Smile)

What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.

“You are more capable than you think you are.” I used to lack confidence in almost all aspects of my life. My wife, Sue, was the first one to help me realize my potential. I remember her telling me the first day I started my job as a photographer and graphic designer at GENESYS, “you will run this company one day.” It sounded so crazy, but after 14 years, it became real. We create our limits in our minds; guess what, with a little imagination, you can change those limits.

“Worry about things only when it is time to worry.” I am a worrier; I worry about everything all the time or I used to. My friend Steve Lucido taught me that there is nothing to gain from worrying about things that may or may not happen or things that are entirely out of our control. Focus your energy on the steps you can take right now, and we will see what the future brings. Don’t waste your energy on worrying about the unknown; it is a big hole that sucks all your potential.

“Sometimes, you can do what in your mind seems impossible.” For many years I was in charge of the Culture and Health aspect of the company where I worked. Our CEO was a health nut and ultrarunner. We learned quickly that the company’s productivity was affected by the mental and physical health of its employees. So, we invested a lot of time and money in empowering our teammates to live healthy lifestyles. We provided fresh fruit and vegetables every day at the shared kitchen, and this was not a California company. It was Kansas City, MO bbq capital of the US, and the deep Midwest. We would sponsor yoga classes, sports teams with employee participation, one of the largest BikeMS Kansas City teams, etc. But our most significant accomplishment in my mind was Marathon Training, in particular trail marathon training. Of a company of 240, we got 60 employees of all ages and gender to complete in a full trail marathon, 26.3 miles with 3000 feet of gained elevation through the woods of Mark Twain National Forest. Remember what I was saying about leadership? How in the world can I promote healthy lifestyles when I am not doing it myself? Well, I had to change. I lived a vegan lifestyle for many years and completed three full trail marathons. I achieved something that I believed impossible. I am not an athlete, I am a short-legged chunky Spaniard, but I did it. And on the process, I learned a valuable lesson, the most challenging part of running a marathon is not the last mile; it is the first step! The step to decide to accomplish something impossible in your mind.

“The customer IS NOT always right.” I have experienced customers taking advantage of my employees, our company, and everybody around them. You would say, “well, it is karma, they will pay sooner or later…” they are still there, still taking advantage of their suppliers and will keep on it as long as they can. Learn to say “Thanks but No Thanks” and walk away from caustic organizations. Unfortunately, they are a lot of them.

“Only change creates change.” Don’t expect change unless you change something. That is the key to progress. How do you get an organization to change, to move forward? Through change, and people hate change. So, before you do anything else or at least simultaneously, create a culture that embraces change. Work constantly to involve your team of the proposal of change and proof to them that change can create progress. Also, don’t be afraid to accept that sometimes the change was not successful and requires a couple of steps back. During my trip to Alaska, I visualized life as a hallway full of doors, kind of the Shining hallway without the creepy girls. The first step is the most important one (like running a Marathon), create motion in your life (leave Spain, leave my life at KC behind), take a few steps forward that give you access to some of the doors in the hallway. Then have the courage to open one door and look inside, if it seems ok, walk-in. Suddenly you will be in front of another hallway full of doors. Not embracing change is like going down the hallway on the tricycle and seeing those doors pass by, those were opportunities you are missing, and you will never know what you missed, and if you keep on down the hallway, the creepy girls are waiting for you. You can apply the same concept to business or anything we do in our life.

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?

Put yourself in other people’s shoes. Get yourself out of your bubble. Understand how and what we do, and the decisions we make in life, affect others. Pretty quickly, you will start understanding why taking care of the environment is the right thing to do, why supporting the less privileged is the right thing to do. How can you possibly judge or understand other cultures, races, sexual orientations if you purposely distance yourself from all of them? Why should you do it? Because it is the only thing you will take with you to the grave; how you have changed other people’s lives and the place we live on.

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

That is easy; I would like to have breakfast with Barack Obama for obvious reasons.

Lunch with John Krasinski, because he raised my heart and spirit with his Some Good News YouTube series during COVID19. He is my hero because he did it out of the goodness in his heart; it was truthful and sincere. He used his fame and connections to bring a smile to so many. It is the perfect example of the power of one. He took the first step, jumped in, and his actions touched me very deeply.

Dinner and drinks with Bono, for many reasons. One of the most prominent philanthropists in the world and still one of the coolest dudes ever. I am passionate about his music and respect his philosophies in life. The impact his actions have had in Africa and many other organizations around the world can only compare with Bill Gates, can we invite him for dessert?

How can our readers follow you online?

www.epilepsynorcal.org

Facebook — https://www.facebook.com/epilepsynorcal

Instagram — https://www.instagram.com/epilepsynorcal/

LinkedIn — https://www.linkedin.com/ company/efnc/

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

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