Maimah Karmo is a breast-cancer survivor and the founder of the Tigerlily Foundation, an organization that educates, empowers and advocates for young women affected by breast cancer. The idea was born after her second chemotherapy treatment, and when she appeared on The Oprah Winfrey Show to tell her story, Oprah’s advice was emphatic: Maimah must write a book.
So Maimah did. *Fearless: Awakening to My Life’s Purpose Through Breast Cancer* (Brown Books, October 2012) is about her transformation, and how she learned that a challenge can be a gift.
*Fearless *is a stunning account of Maimah’s upbringing in Liberia—which was uprooted when she was 15 years old, and her family was forced to flee to the U.S.—to living the American Dream, watching it all fall apart with a breast cancer diagnosis, and ultimately, bouncing back.
Today, Maimah has made her mark in the world of breast cancer, and her work has been celebrated everywhere from The Oprah Winfrey Show to *Redbook Magazine* to Good Morning America. Dedicated to changing the breast cancer landscape, Maimah’s goal is to create a legacy of a world free of breast cancer. Below is a Q&A with Maimah…
Tell us about your book.
Fearless is the story that my heart has carried around for many years, but that I had to live out to this point, in order for me to share with others. It is me, being me, out in the open, authentically, freely, uninhibitedly, unabashedly and for the first time – proudly and unashamed or afraid to show all of me. It starts with my life in my native country of Liberia, fleeing to America, as a refugee at 15, building my life, then watching it all fall apart after being diagnosed with breast cancer. Initially angry, hurt and scared as I watched my life fall apart, I grew to see that there was a blessing, a hidden gift in the experience; through it all, I re-discovered my strength, myself, and my purpose.
What inspired you to write Fearless?
When you face your mortality in any way, it puts you at a crossroads – you either become a victim of the thing or a victor of it.
You also have the opportunity, if you survive, to start over, re-create yourself and your life, because you realize that you’re the artist and at your desire, you can draw anything you want on that canvas. My breast cancer diagnosis devastated me, but even more so, I know that many other things had to fall apart at once, for me to be pushed to the point where I begged God to show me my purpose, because I had nowhere to look but up. I had fallen so far so fast.
After my surgery, my fiancé walked away, unable to cope with my diagnosis. As my hair fell out and I lost my eyebrows, eyelashes, I felt parts of myself falling away. As I saw my career came to a standstill, I had to move in with my mother and give up my home, saw the way some of my friends now looked at me and watched my body become weak and frail, I learned that so much of what I had prioritized in life was unimportant. I had, first of all put other people, my career and material things first, and me and my passion last. I realized that so much of my life was a façade. Most of all, I realized that if I died, I would not have given a fraction of what I wanted to the world, and no one would really know me and the big, crazy love that I’d kept hidden so deeply inside, lest I be judged by others in some way for being too open with my heart.
Losing “everything” that wasn’t important showed me that I had everything to lose by not showing up. I began to live my life by giving all that I had away – my time, my love, my passion – to help others, through my organization, Tigerlily Foundation, and as I gave, God gave me more in return than I ever imagined. He gave me time with my daughter, blessed me with the ability to service others through my “work”, which isn’t really work to me, he gave me joy, faith, quadrupled all that I lost, and most of all, he gave me passion, and he restored me to the person I had been seeking all along. I also learned that life is not about wanting to take for oneself and garnering things, but about the moments we can commune with, affect and empower others.
What was it like experiencing your transition to life in the U.S. as a refugee?
It was very challenging. When we fled to the U.S. in my teens, it was very difficult for me. I dressed differently, spoke differently and had behaved differently than the other kids. I was painfully shy and bookish and wasn’t trying to be like anyone else, nor did I care to belong to any particular group or clique. I just liked people in general. I got picked on a lot, ostracized, and bullied in high school. I think then was when I got to start seeing a glimpse of how I would be in the future. When the kids teased me, tried to trip me, took my lunch or sat around me a the table making fun of my accent, or just ignored me, I had the option of accepting their behavior as a rejection of me personally; yet, I didn’t.
I always remembered my storybook friend Anne Frank in the attic and wondered what she would do, and I made up my mind to live my life the way I wanted. I knew who I was and how I wanted to be and that was that. When we came to the U.S. the final time, in 1989, it was hard as well, but I had finished high school, so I was free of the trappings of being stuck with kids my own age, who had this incessant need to “fit in”. I got a job and was able to be around people much older than I was; which is where I was more comfortable anyway. Most of my friends were 10 to 20 years my senior, but I could relate to them, and I felt free to be myself and to explore various ideas of who I wanted to be. They gave me books to read, music to listen to, invited me to different events and allowed me to sit with their other friends at parties and I became privy to interesting conversations on topics I couldn’t begin to speak about with my friends. I had always felt like a much older person in the body of a child, now I could free my mind and explore.
On another note, financially, it was very hard for my family. My mother was ill and I had my brothers to help out with. So, before my father came to meet us in the U.S., I would help my mother to cook and clean, help make her food and take care of her. I would take the bus with her to doctor appointments and keep her company. Once my father came with my brothers, I would wake up in the morning, make my brothers breakfast, make sure they got dressed and cleaned up and off to school. Then, I would help them with homework and dinner in the evenings. Because we only had a two bedroom apartment, my mother and father had one room; my brothers and cousin shared another; my other cousin slept on the living room floor and I slept on the couch – for many years. People from the church would bring us food. It was surreal, because just months before, we’d had everything. My parents had taught us that what mattered was our hearts and who we were inside, so I think that for me, the experience made me stronger and more resilient. Both of my parents had worked hard to become successful and always told me that I would do the same. I just didn’t expect to start doing it at 15, but that was that, so I made it work.
How do you think your experiences as a refugee can help move ideas and attitudes in our society forward?
I think that Americans take so many blessings for granted. Things like clean, unpolluted running water, lights, order, clean streets, hundreds of cable stations, gadgets, and most importantly freedom. People die in other countries every day that would have lived off the food that is thrown away daily. People in other countries use the same water to drink and cook, that they bathe in. In some countries, you get killed for speaking the truth or disrespecting authority. Women are disrespected and abused. When you come to live in America, especially for me, as a child, I realized that there was a whole world, here, open to me, if I wanted it. I felt like a kid in a candy store, not knowing where to go or what to do first. I could go where I wanted, do what I wanted, say what I wanted and not have to worry about my parents, or I being hurt, or killed because of it. Most of all, as challenging as the debate is with healthcare, there is so much more access to care here than in other countries. In Liberia, I remember walking down the street – almost any street in Monrovia, and seeing people with missing arms, legs, teeth, eyes or mangled torsos; there were so many handicapped people and children – and they couldn’t afford to get the healthcare they needed. They lived like that and begged for a living. That was how they lived. Many were too poor to get an education; and in the U.S., education can be subsidized. I know that there are issues with people living in socio-economic areas where there is less access to healthcare and education, but generally, people in many parts of the world have a fraction of these opportunities and some never do.
You founded the Tigerlily Foundation. Tell us about that.
In 2006, I was diagnosed with aggressive breast cancer. I was 32 years old and had a 3-year old daughter. When I had initially gone to the doctor, I had been told I was too young to have breast cancer. She performed an aspiration, which was unsuccessful, but she insisted that I come back in six months, during which time the lump doubled in size. I began experiencing overwhelming fatigue and night sweats. When I went back, she insisted on a re-aspiration. I pushed for a biopsy. I was diagnosed the next day, then found out I had aggressive breast cancer. While undergoing my second round of chemotherapy, I would ask why this was happening to me; I was so afraid of the future. I learned that approximately 11,000 young women get diagnosed and approximately 1,100 of those women die because they are misdiagnosed. I thought of how many other young women were going through what I was experiencing. Then, I stopped asking why and began thinking how, and then what could I do to make a difference, instead of looking to someone else to make a change. I prayed about it and the next day, the vision for Tigerlily Foundation was born, with a mission to educate, advocate for, empower and provide hands-on support to young women – before, during and after breast cancer. What started as a promise and a dream is now a nationwide organization reaching thousands. Tigerlily Foundation provides education and empowerment to young women and their families, we educate healthcare practitioners, provide peer support to newly diagnosed young women, send young women in treatment breast cancer buddy bags, meals, pay their bills, and provide support to young women living with Stage 4 breast cancer.
I founded the organization while working a full-time job, and as a single mother. I did it because if it were not for the grace of God and a mother who taught me to do my breast exams at thirteen, I wouldn’t be here. I’m humbled to do this work, because I believe that when one is blessed with life, in some way, we must be of service to others. There is really no excuse to not give back or find the time to help others. There is so much we each can do to impact someone else’s life. I founded Tigerlily because I promised God that I would create something that would make a difference in the landscape of young women and breast cancer, and I promised my daughter that I would live – and I meant not just physically, but be truly alive, thereby giving her a legacy that would never die – hopefully an example of the importance of creating the life you want, pursuing your dreams, embracing life, loving the moment and walking along a path because you believe in something deeply, even if you can’t clearly see the way ahead.
I do this work because young women are needlessly losing their lives to a disease that many of them are not even aware of. Breast cancer floored me, but I made a decision to pick myself up and be even better than before – and I want other young women who are diagnosed to know that they have somewhere to turn, for support, love, empowerment and services. I want them to know that they can survive and thrive. I want young women who have not been diagnosed to know that they have a right to life and that they need to exercise their personal power and become their own best advocates. I will do whatever it takes to ensure that every young woman is aware of the issue of young women and breast cancer and I’ve dedicated my life to ensure that this happens. It is important to be living examples to our children. When my daughter was six, she woke me up one morning and asked me what she could do to “help the women too”. She asked me if she could have a fundraiser. The week she started first grade, she began planning, along with several of her friends to have her first fundraiser. In December of this year, she is holding a 100 person event at a local hotel. At six years old, she already knew she could make a difference. Imagine what the world would be like if little children grew up all wanting their lives to matter and wanting to give more than to get. That would be a wonderful thing. I hope to give this gift to others through my work.
You’ve connected with some amazing, inspirational women along your journey. What have you learned from them?
I have learned, as one of them said, “to eat life with a big spoon”. Life is so short, and we are so powerful. The women who make a difference don’t live scared – they show up and say what’s on their minds. They are passionate, purposeful, have faith and an amazing personal strength that comes from a sense of knowing oneself. They live with their heads held high and are never victims of this or that, but tend to see life with the glass half full, learning from mistakes, living with grace and knowing that their actions reverberate on a larger scale.
What was connecting with Oprah like? (Everyone always wants to know!)
She was amazing. She is a wonderful host – compassionate, kind and warm. You almost forget she is there, you feel like you’ve known her forever and that you’ve sat on that couch before with her in her living room. She has a way of focusing on each person and making them feel special. She was amazing. I love her even more after meeting her. She is 100% the real deal and is doing so much to help so many.
What’s the one thing you’d want someone recently diagnosed with breast cancer to know immediately?
That being diagnosed with breast cancer is not a death sentence; and that you are not alone. Those two things are the most fearful feelings. There are so many women, more than 250,000 diagnosed annually, who survive and thrive after breast cancer. That means that you have thousands of other women who have walked the path before you and who can support, empower and inspire you. What shifted me was the knowledge that I was in charge, not breast cancer or anything else. Breast cancer sucks, but the reality of life is that we all have to go sometime – from breast cancer or something else. What breast cancer did for me was put my life in perspective. It gave me a wake-up call, and helped me to see that I was and we are all here temporarily. So I needed to own my life and find my purpose, so that I would live the rest of my life with meaning. With this in mind, I focused my energy and fears into making my life count – that is what we all want at the end of the day to make a difference, love a lot and life like there is no tomorrow. What was interesting is that helping others healed me in so many ways. It taught me compassion and gave me more wonderful friends than I could have imagined.
Has writing Fearless changed you in anyway? Please elaborate.
Yes, it freed me and helped me to heal. So many times, we live our lives hiding a part of who we are, and afraid to show the world all of ourselves. Writing this book allowed me to really see myself in entirety for the first time and stop and take a look at things that I needed to see, to face and to heal from. It also helped me to really appreciate myself so much more. Often times, we just go about our lives, not really seeing what we do and how we matter. I have often been hard on myself, as a child and then coming here as a refugee, I always had this drive to succeed, that never allowed me to just sit back and see what I had accomplished. Writing this book allowed me to love the little girl and woman I was and in many ways, have compassion for her and reflect that love and compassion onto myself, and others; it will allow me to give my daughter the gift of taking it easy on herself and hopefully, enable her and other young women to have more self love and resolve, knowing that our life is in the journey and not to be so much lived focused on the destination. I also think that particularly as it pertains to bullying or insecurity, we can be our own worst critics. Writing Fearless allowed me to delve deeper into myself and I came out of it with more self love, confidence and freedom. I know now, that “this is me”, and I love who I am. It allowed me to heal from a broken relationship that was emotionally not healthy for me, and it helped me to learn many new truths about myself, most of all, as I mentioned earlier, to practice self love and care first, as the basis for any healthy relationship.
Finally, where can we find your book?
You can purchase it on Amazon or if you would like an autographed copy, visit my website at www.maimahkarmo.com