I was born in 1962 to Raphael and Muriel Whittaker. The fourth of five children born to my parents, I was raised in the sunny island of Jamaica, and migrated to Atlanta, Georgia in 1980. I was the first girl born to my parents after three boys, so my mother gave me all the names she had been saving up for a daughter. I was diagnosed with sickle cell disease (SS) at eleven months old. Although I exhibited signs of jaundice from birth, the doctors did not properly diagnose my disease until my parents took me to the doctor because I was having an uncontrolled fever and crying more than usual for an eleven month old. I am the only one of my siblings to be born with the disease. Both my parents have the sickle trait, as do one brother and my little sister.
My parents were firm believers in a good education because they knew that knowledge opens the door to so many things. They ensured that each of their children received a good basic and rounded education, regardless of what other challenges each faced. It was as a child that I learned the value and empowerment of knowledge and determination. Those basic values were instilled at such at early age that I can remember one particular occasion where I went cried and begged my parents to send me to school, undaunted by the fact that I was not feeling in the best of health. That very same day, during the lunch hour, I was hit in the head by a stray stone thrown from the playground. The teachers wanted to call my parents right away, but I begged them not to, because I feared my parents would take me home and keep me out of school for several days until I was completely well. At that time being in school helped to lift my spirits and take my mind off being more physically challenged than my peers. I was determined not to miss school, so I agreed to sit quietly in class if the teachers and my parents would only allow me to continue to attend school.
I was blessed to have had the expert and compassionate care of Drs. Elaine Reid and Graham Serjeant. To them both I owe a depth of gratitude for the care they provided me while I was growing up. But then, I have been blessed from the time I was born. When I was diagnosed with sickle cell disease the doctors did not expect me to live past my sixth birthday. In fact, I was initially diagnosed as having leukemia, and it was not until further testing was done that they came up with the diagnosis of sickle cell disease. Despite the gloomy predictions from the doctors, the good Lord is the author of my life and had other plans for me. So, He has always placed me in the care of the very best doctors in the area of sickle cell disease and research. Dr. Reid, watched over me the only two times I was hospitalized as a child. The first of those two times I was not expected to live due to the seriousness of the infection. I was very young then and do not remember much about that hospitalization, but I do remember being placed in an oxygen tent and the grim expressions of the medical staff and my parents. I survived then as I am surviving now. Dr. Serjeant cared for me through adolescence into adulthood, and it was he who first taught me to protect my legs from insect bites and injuries in an effort to minimize leg ulcers.
When I was migrating from Jamaica, Dr. Serjeant sent me with his blessings to Dr. Jim Eckman and his team of dedicated professionals at what is now known as the Georgia Comprehensive Sickle Cell Center at Grady Memorial Hospital in Atlanta, Georgia. When I first attended the clinic, the Center was little more than a 2 room clinic, rotating the floor space with several other clinics. However it was staffed by three of the most dedicated health care professionals in the persons of Dr. Eckman and his assistants, the late Mrs. Phyllis Benjamin, R.N., and Mrs. Joanne Beasley, R.N. Today, the Center is the premier institution for sickle cell care worldwide, operates 24 hours a day year round, and has it own dedicated floor space at Grady to host its clinic and provide short term treatment facilities for its patients. Dr. Eckman made sure I had continuity of care when I temporarily left Atlanta for travel and further study. He made sure I had contact names and numbers or sickle cell care providers for the various destinations to which I traveled.
Dr. Doris Wethers (now retired) and her team of caring and compassionate staff at St. Lukes-Roosevelt hospital cared for me during my three year sojourn in New York city. Finally, Dr. Douglas Collins in Atlanta, Georgia must now endure my many protestations each time he recommends a hospitalization or procedure that I am not comfortable with (never mind the fact that his recommendation may be actually what I need at the time).
I attended the well-respected Spelman College, from which I graduated with a double major in three and a half instead of the usual four years. At Spelman I majored in Political Science and Economics with a minor in International Relations and graduated magna cum laude. Life at Spelman was challenging and fun. I was blessed again to have professors who inspired and challenged me to reach for the stars and further instilled in me the truism that knowledge is power. For the most part, I managed to stay out of trouble with sickle cell disease at Spelman. Although there were stressful times, what with the pressure of exams and the like. I viewed that type of stress as positive challenges and managed never to have a serious pain episode for which I had to be hospitalized. I tried my best to take care of myself by hydrating myself constantly and following the healthy practices that I had learned early in life, and which practices were reinforced by the staff at the Sickle Cell Center.
I had several leg ulcers, and one bout with what was suspected to be osteomyelitis while I was at Spelman. I remember my mother waking me up early one morning and asking why I was moaning. I told her that I was not moaning, but at that point I immediately felt the pain in my ankle. This was the first time I was given a mild narcotic medication (Tylenol 3) to help control the pain. I could not do my usual activities that summer, which included working at a summer job. However, I refused to allow the summer to be an entire loss and decided to take a course in calligraphy. I am still able to write calligraphy today and sometimes get requests from family members to do a special piece for them. While at Spelman I also took the opportunity to again take piano lessons, which I took as a child. Playing music, particularly the piano at that time, often helped to relax me and reduce my stress.
While at Spelman I won the prestigious Thomas Watson Fellowship. I was the only student from the Atlanta University Center, and the first in many years, to win that award in 1984. This fellowship afforded me the opportunity to travel to Venezuela in Latin America and extensively in Europe, in the quest of being a “better world citizen.” On returning from my travels in 1985 I enrolled in Columbia University School of Law in New York City. I graduated from Columbia and returned to Atlanta to work as an attorney for the federal government, where I have remained for the last thirteen years. This has afforded me the opportunity to travel, purchase a house and enjoy a few of the finer things life has to offer.
Whether I travel on business or for pleasure, I always take care to properly hydrate myself before, during and after flying and have never encountered any major sickle cell related problems due to flying. The air does sometimes become a little dry, but I counter that by breathing into a cup with a few drops of water or a few slices of lemon. A flight attendant taught me that trick while I was on one of the long flights from the U.S. to Venezuela, and the dry air had become uncomfortable to breathe.
During this life’s journey, I have had many challenges, particularly in the last seven or eight years, as I have grown older. However, I have also had God’s covering and His many blessings. Some of my challenges from sickle cell disease have included recurrent and painful leg ulcers and one aplastic crisis. The aplastic crisis racked my body with so much pain that I can only describe the pain as feeling like I had been hit by a runaway freight train. This aplastic episode was also accompanied by high fevers in excess of 105 degrees. I remember awaking from a feverish sleep to see my husband shivering with cold as he sat in the room with me where they had severely lowered the room temperature in order to try to bring my body temperature down. I also have frequent pain episodes (which thankfully I usually do not have to be hospitalized for), mild retinopathy, and frequent blood transfusions (a fairly recent development). In addition I had gall bladder disease and a heart attack before age 40. I have also had other illnesses which were not initially sickle cell related, but became secondary to sickle cell when sickle related complications developed.
Some of my biggest blessings include the fact that despite the bleak outlook and acutely shortened life expectancy predicted by doctors when I was first diagnosed with the disease, I am here to tell my story almost four decades later. I have also been blessed with a very supportive family, including a mother and father who had faith that their first daughter would survive and did everything in their power to ensure that I did. Their efforts included making sure they learned as much as they could about the disease and then passing that knowledge on to me so that I could in turn take care of myself. My parents maintained appropriate communications with my doctors while I was a child so that I could get proper and immediate treatment when necessary; ensured I had a proper diet and nutrition; and provided a comfortable, positive and stable environment in which I could grow up. My three brothers, sister and extended family and friends have also always been very supportive of me.
Today, I am married to Willie J. Ware, Jr., my caring and supportive husband, who stands guard at my bedside each time I am ill. He hovers over me like a mother hen and gets on my case about taking care of myself as much as or worse than my mother does. I am also the proud mother of the cutest and most charming three year old toddler, William, who came into our family by adoption. I am fulfilled by having the joy and comfort of knowing that I am loved and cared about by not only my husband and son, but by my extended family and friends as well.
To my fellow comrades in arm living with the disease I challenge you to the following: (1) Develop your spiritual life and ask for God’s continued blessings, because even when the doctors and everyone else give up hope, He is the only one that can bring you through the many trials that you face; (2) adopt a positive attitude and know that with God’s help you can do anything you put your mind to — believe in yourself; (3) believe that knowledge is indeed power and educate yourself as much as you can about your disease and your body and take all the steps necessary to stay healthy and positive, including maintaining proper contacts with your health care providers and a healthy diet; and (4) continue to have faith and hope that a cure to this disease will be found soon, and do whatever you can to contribute to that cause. To care givers, family and friends I say thank you and continue to keep the faith. Keep yourself and your loved ones encouraged. The more you learn about the disease the more you can help your loved ones and educate others in the fight against sickle cell disease. To health care professionals, again I say thank you. I also challenge you to continue to provide care in a compassionate fashion, treating your patients with the respect and dignity you would accord anyone who comes across your path. You never know — you could be entertaining a future lawyer, doctor or influential person. Encourage your patients to live as full and productive a life as possible.
To my mother who still encourages me and gets on my case about taking care of myself and to my father (now deceased) I give my love and thanks for providing me with the best care possible and instilling a positive attitude in me at an early age. Your early efforts have allowed me to be me and to live a fulfilling life. I thank my brothers Richard, Paul, and Michael, and my sister Allison for your love, prayers and continued support over the years.
To my husband Willie and my son William, I give my undying love and thanks for completing my life and loving me the way you do. I pledge my love to you both and my intention to do everything I can, with God’s help, to stay around for another forty decades to share my life with you. I also thank my many friends and well-wishers who have all encouraged me along the way. Finally, I thank my heavenly Father for your many blessings and for allowing me the opportunity to be a blessing to others.
