Today we’d like to introduce you to Carolyn Rowley.
Carolyn, let’s start with your story. We’d love to hear how you got started and how the journey has been so far.
At the age of two, my mother and father were given the news that their daughter was diagnosed with Sickle Cell Disease. As my parents retell the story, I was two years old in my bedroom while they were in the living room watching television. I was crying asking to go to the bathroom. My mother responded ‘you know how to get and walk to the bathroom’. I kept crying and through my tears stating ‘I can’t walk’. They ran into the bedroom and I was balled up in a fetal position like a steel rod unable to move. My mother took me to the bathroom and my father whisked me off to the nearest hospital. This was 1963 where newborn screening for sickle cell hadn’t even been thought of. The emergency room physicians were not familiar with sickle cell but had a suspicion and asked my dad to take me to the hospital in Long Beach. It was there, a month later, where my parents received the news.
At the age of five, I dedicated my life to Christ and to service. All I ever truly wanted to be was a prayer missionary – a person who spent their life in intercessory prayer for others, for the world. Meanwhile, throughout elementary school and high school, I had several bouts of sickle cell pain episodes. Though they [the pain episodes} didn’t define me, it did wreak havoc on me emotionally. When I was pain-free, I was happy and had friends and known as ‘bones’ and was the humorous one at school. When I was in the hospital, I was all alone in the hospital, no visitors (you see had a younger sister born in 1963 so my mother had to tend to her and my father worked evenings at GM). I still have a book that my dad gave me and that I colored with markers. I still have the numerous get well cards that the teachers made my classmates write to me which is somewhat bittersweet. On the one hand, I loved the cards and seeing my friend’s name in writing yet, on the other hand, I was the sick one and they didn’t know what I had. Of course, the first few days back at school were rough (where they still my friends, sometimes they treated me as if I was contagious, and let’s not mention the tons of school work I had to catch up on).
Then came high school. Not in and out of the hospital as much, but enough that the pain episodes themselves were dreaded and led to thoughts of suicide and feeling depressed. Then there were the days I was pain-free and full of joy and comic relief. However, it was those times of pain that around eleventh or twelfth grade that I had a day of reckoning with my God. Enough of the highs and lows. About death and life. I distinctly remember a conversation with God that went something like this: Lord, the pain is too much to bear and I want to die, however, I want to live if you deem it so, therefore, if I get through this next pain episode you will have to equip me with the tools to live my best life in spite of the pain. You will have to equip me to find joy and peace in the middle of this pain and chaos; the pain which is worse than any human will ever endure and the chaos where the doctors and nurses are not knowledgeable and can be cruel. I’m alive today and can say that pivotal moment, that “Are You There God, It’s Me Margaret’ moment changed my life. I wanted to live my best life with joy and peace and believe I have.
I went to Loyola Marymount University and obtained my B.A. in Psychology and M.A. in Counseling Psychology. Dr. William Parham, one of my professors while at LMU in the graduate program, recommended SIU-C (Southern Illinois University at Carbondale) as that was his alma mater and he thought I was a perfect candidate. My intention was to obtain an MD and specialize in Hematology and a PhD in Clinical Psychology. Though I soared academically, I almost lost my life navigating through the medical community. They were so backward and punitive – I was punished for being an articulate and educated black woman who had command of medical terminology when making suggestions on how best to treat and manage my condition. I was physically abused by nurses, sexually harassed by doctors, and in the beginning banned from hospitals in close proximity. They wanted me to travel over two hours to St. Louis, driving myself while in excruciating pain. My rescuer and mentor, Dr. Thomas Mitchell, came to my rescue. If it wasn’t for him, I would be dead and definitely would have not finished my graduate studies in product Carbondale. Initially, they wanted me to take a series of tests to prove I wasn’t a drug -addict. Not. I was not going to do this. Second, Dr. Mitchell found only one doctor that believed me and would take care of me the way I wanted and deserved to be treated. Lesson learned – never say never. At the time, I said I would never return to Carbondale, Illinois if my life depended on it. However, a couple of decades later, through Cayenne Wellness Center, my nurse educator and I did a series of provider in-service training both in California and around the U.S. One of our stops – St. Louis and Carbondale, Illinois at the same hospital that had once banned me from seeking care.
I completed the PhD program and was going to start the medical program when while at the University of Louisville Medical Center where I completed my Post-Doc for my Ph.D., I had a near fatal pain-episode which left me having to eventually return to California and recover over the next two years. Medical school on hold, I decided to utilize my degree and worked at Charles Drew University on breast cancer research, followed by working at UCLA on prostate cancer research. It was at that time while starting my family that I stopped to ask what I truly wanted to be doing. The answer – to open a holistic Wellness Center and restaurant. So, I began my journey. I found a location in Pasadena (corner of Fair Oaks and Green) large enough to house my Wellness Center and Restaurant. The landlord and architect allowed me one year to get the capital to occupy. Sweet. Unfortunately, I was only able to come up with enough capital to open just one of the two which meant leaving behind Fair Oaks and Green. I began Cayenne Wellness Center and Children’s Foundation and Cayenne Restaurant would have to be on hold for a while.
Fifteen years ago, my good friend asked me what I wanted for my birthday. I truly became thoughtful of this question which led me to my desire and dream at the age of 5 – to be a prayer missionary. So, in answer to her question, I decided to locate where I could complete a summer mission trip. I asked my dad who was part of a church that supported at least fifteen missions. It was decided that I would visit Dr. Mutunga in Makueni, Kenya. I responded to an immediate need – to house the original 13 children and many that were on the waiting list. My first strategic plan: Strategic Plan I: Foundation, afforded Me the vision to build the dorms, latrines and other buildings accomplished in 2009; to provide clean water accomplished in 2010; to put in solar panels accomplished in 2011; to provide food by building a green-house and chicken coop accomplished in 2012, and to put in solar irrigation accomplished over the course of two years (2014-2016). Our second strategic plan: Strategic Plan 2: Impact, has led to our desire to strategically take care of more orphans and have the orphanage be sustainable and economically self-reliant by the year 2020. Note: this campaign is on-going and we need donors to get on board and help us raise the $175,000 to be sustainable.
Dr. Rowley holds a Bachelor’s and Master’s degree in Psychology from Loyola Marymount University, a Ph.D. from Southern Illinois University at Carbondale, a nutrition certificate from Trinity College and is working on obtaining a Doctor of Naturopathic Medicine (ND) degree with a desire to pursue an MD and specialize in Hematology and open the Cayenne Restaurant: An International Vegan Cuisine.
Dr. Rowley has teaching experience from Southern Illinois University at Carbondale (SIU-C), CSU Channel Islands, Alliant University, and currently teaches at UCLA Extension. The mission of Cayenne Wellness Center – “To increase the quality of life for individuals diagnosed with sickle cell disease in California by ensuring expert, unbiased, and comprehensive care.” This mission is part of a broader vision of (1) a medical system which effectively addresses the unique needs of individuals with sickle cell disease and (2) patients who are empowered and equipped to advocate for themselves. She is a committed environmentalist and vegan and has brought an understanding of the importance of nutrition in dealing with sickle cell disease. She has served as a panel member for a number of forums for the general public and for medical professionals regarding successful living with sickle cell disease. She wrote a book with her colleague and friend Dr. Brenda Laue entitled “Creating Your Ultimate Self: The Body” a book on nutrition and movement.
Dr. Rowley was also a regular guest host on an award-winning cable show – Talk About Parenting with Shirlee Smith. In her efforts to bring about awareness about sickle cell disease, Dr. Rowley is spearheading ‘The Faces of Sickle Cell Disease: An Educational Traveling Photo Exhibit’ which encompasses photographing 500 persons with sickle cell disease across the United States. In 2007, Dr. Rowley was awarded Person of the Year for the at the NIH (National Institute of Health) / Sickle Cell Disease Association of America, Inc. 35th Annual Convention held in Washington, D.C.
As a result of travels to Kenya, Dr. Rowley desires her legacy to be a collaboration with the U.S. and Kenya to create a surveillance program, newborn screening, access to treatment, and best practices for the management and treatment of sickle cell disease.
She enjoys cooking with hopes of opening her own restaurant, featuring international vegan cuisine. She enjoys landscaping and her home won the 2011 award for Best Sustainable Landscape in California. She enjoys travel, with her favorite country being New Zealand. Most of all, she desires peace, genuine and real conversations with real people (wants to meet Dr. Eddie Glaude and the Prime Minister of New Zealand).n And of course she loves music – jazz – and has taken up lessons to play the bass (guitar and upright). On her bucket list is to sing backup, live in another country for a period of time, and perform her one-woman play on the life of Nina Simone.
Where there is music, art, beach, waterfalls, and sun, you will find Dr. Rowley enjoying a few of her favorite things. Her faith is what has sustained her, makes her whole, and daily orders her steps.
Great, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
A smooth road is doing absolutely nothing. Of course, there have been struggles because I am compelled to participate in life and ALL that it has to offer.
Sickle Cell Disease – Persons diagnosed with Sickle Cell Disease are born into pain and as a result, we are warriors for life. The term Sickle Cell Warriors – coined by Tosin Ola-Weissmann – describes us to a ‘t’. Struggles with joy and peace in the midst of pain and chaos. Medical professionals believing you to be a drug-addict and therefore rarely receiving adequate pain management. And for some, access to care is a huge problem, even now. I am texted and telephoned daily to assist the sickle cell community and their families to speak to doctors to please increase their pain meds, to please not discharge them prematurely from the hospital, to please run more test to rule out PE (pulmonary embolism) or acute chest syndrome (number one reason for mortality).
Struggles with obtaining funds for both the MACHAO Orphanage Foundation and for Cayenne Wellness Center in an effort to keep our programs running. For Cayenne Wellness Center we have five Sickle Cell Disease Support Groups throughout CA, we have our life-saving Annual Sickle Cell Disease Educational Seminar held every September (this year September 17 – 19, 2020 virtually. Register at www.cayennewellness.org), we provide provider inservice training to medical professionals, we have five Community Health Workers throughout CA whose job is to find out what are the barriers that keep patients from keeping their appointments, taking their medications. A CHWs role provides a complement to good primary care. The relationship between a community health worker and patient is a lot different from the relationship with doctors and nurses; we have what’s known as the Sickle Cell Disease Client Assistance Program enables us to support care coordination services for persons living with Sickle Cell Disease such as rental assistance, assistance with utilities, and the like. And this is just a few of the services we provide.
For MACHAO Orphanage Foundation, we need funding to keep our children in school. Currently, we are in need of $6,000 to pay for tuition for 43 children to return to school this Fall, 2020 which begins September 1. Without the funds, the children will sit out another term, and this time not due to COVID-19. We need $175,000 for our sustainability program, and we need each of our 43 children to adopted through our Love-A-Child program. For $1,200/year or $100/mo one can adopt a child and make sure their child gets an education, food, hygiene, and medical.
Personally, I won the battle with cancer. I was diagnosed with breast cancer and of course, knew that it would not define me. I recall getting a biopsy two days before taking our annual trek to MACHAO for our three week Mission Service trip. After returning in August and completing Sickle Cell Disease Awareness month in September, I knew I needed to deal with and face the diagnosis. I decided to have a prayer team pray for me and to fight this holistically. And though what I was doing was working, it had wreaked havoc meaning the cancer was exacerbating my sickle cell. The biopsy in July revealed that the size of the tumor was 10cm, in March of the following year upon removal during surgery it had shrunk to 2 cm – this was with no radiation or chemotherapy. This was with my mind, prayer, and nutrition and the belief that I had been completely healed.
What has been rocky is now smooth. I embrace joy and peace in my world and attract nothing less. I pray daily, practice deep breathing, I am all things natural – I only eat what you can pick from a tree or pluck from the ground – a pick it and pluck it diet (aka plant-based diet). I only wear cotton or linen clothes. I do not own a t.v. I work hard (over 75 to 80 hours a week) and relax mindfully. I’m a saver and not a consumer. I plan to live till my destiny.
Cayenne Wellness Center and The MACHAO Orphanage Foundation – what should we know? What do you do best? What sets you apart from the competition?
I am the Founder, CEO and Executive Director at both Cayenne Wellness Center and The MACHAO Orphanage Foundation. Cayenne Wellness Center and Children’s Foundation, our legal name, describes two companies. The Children’s Foundation is MACHAO.
What do I do? Everything. Seeking donors and donor retention. Human Resources. Social Media and Marketing. Administrative duties. Grant writing. Program development, event specialist… I do it all. We are in need of funding to hire a Development Manager in charge of writing grants and sustaining our programs (for both Cayenne Wellness Center and The MACHAO Orphanage Foundation. We are in need of funding to hire a Director for Cayenne Wellness Center and Children’s Foundation, a Program Manager and Program Assistant for MACHAO. I envision this and so it will be. I desire to leave a legacy and mentor stellar folks to do the job with one thing – the person MUST have a passion for the lives of persons diagnosed with Sickle Cell Disease and for my children, the orphaned children in Makueni, Kenya. Until such persons surface, I will continue to carry out what God has groomed me to become.
What I am most proud of? Having been in business for 20 years for Cayenne Wellness Center and 15 years for MACHAO. Believe me, particularly for MACHAO, this has not been easy. Many times crying out for help and direction and am I the one to do this? Also, that the sickle cell community TRULY knows that Dr. Rowley loves and cares for them, each and every one of them. I attend funerals, graduations, baby showers. I am me, chiseled to be the best me, as a result of my interactions with each and every person and family member.
What sets me apart? There is no other like me. I love hard and work harder. I am them. I am peace and health. What sets me apart? When you meet me, I am movement and you and I will engage in a dance. I am love and you and I will engage in an embrace with a hug (pre COVID-19), our eyes and an elbow bump. You’ll know with me that I do not judge you, lest I be judged.
What sets me apart? That my life will truly never be complete until ALL persons diagnosed with sickle cell disease finally have dignity and are treated humanely as if their life matters. I have just begun. The revolution is on its way. I intend for us all to unite across the U.S. demanding evidenced-based management and treatment of our disease; demanding that providers obtain CMW/CEU units in Sickle Cell Disease to keep their license to practice; that the government forward the money to CBOs like Cayenne Wellness Center to continue to provide services and resources to our community; that we get the continued media that we deserve; that lives are spared from premature deaths due to lack of provider knowledge; that providers cease their punitive practices towards us by holding pain medication from us because ‘you’ve already had too much’. Stop the insensitive dialogue with doctors who say ‘you can’t be in that much pain’. Pain meds are withheld if you cry and scream too loud and they are withheld if you are stoic.
What sets me apart? I will not stop until everything mentioned above becomes our past. Where our present is living pain-free, healthy (both emotionally and physically), living by design. Actually, I don’t know what sets me apart. I’m living my life for eternity and in the end, I don’t want it to be for naught.
What moment in your career do you look back most fondly on?
Every year we remain open. For Cayenne Wellness Center – Our Annual Sickle Cell Disease Educational Seminar. For The MACHAO Orphanage Foundation – Having accomplished our first strategic plan over the course of over ten years. Personally, raising a daughter and running my husband’s company Gilderfluke and Company, Inc. I am the VP and CFO since we’ve been married – 23 years. Writing a book with my friend Brenda. Writing a play on the life of Nina Simone. Writing several treatments for movie ideas. Traveling to Europe (Greece, Italy, France twice, England twice, New Zealand, Dubai, and Kenya every year for 15 years). My love for the arts – music and fine arts. The numerous people I’ve met – President of Liberia Ellen Johnson Sirleaf, Nina Simone, yet more importantly, my children at MACHAO and all the families in the sickle cell community.
- For MACHAO – Our sustainability campaign. We need $175,000
- For MACHAO – Our Love-A-Child program. We need 40 more families to adopt a child at $1,200/year for at least 10 years
- For Cayenne Wellness Center – Our Sickle Cell Disease Support Groups. We need $7,200/year for all five groups.
- For Cayenne Wellness Center – Our Annual Sickle Cell Disease Educational Seminar. We need $150,000 to put on this life-saving event
- For Cayenne Wellness Center – Our Community Health Workers (CHWs). We need $166,400 to keep 5 full time CHWs employed
- For Cayenne Wellness Center – Our Development Manager. We need $62,400 for a Development Manager.
- For Cayenne Wellness Center – Our Sickle Cell Disease Adult Comprehensive Brochure. We need $60,00 to provide evidence-based information to patients and providers on how to live well with Sickle Cell.
- Website: www.cayennewellness.org www.machaoorphanage.org
- Phone: 818-840-9484
- Email: firstname.lastname@example.org email@example.com
- Instagram: cayennewellness machaoorphanage
- Facebook: cayennewellness machaoorphanage
- Twitter: cayennewellness machaoorphanage