March 2003 is a time I will always remember. I walked into my bedroom ready to lay down when the phone loudly rang. I answered and heard, “Hello, this is the doctor’s office, may we speak to Keva?”
“This is she. How can I help you?”
The doctor had received all my test results. The reason I was experiencing severe fatigue (feeling like an 18-wheeler had run me over), sudden patchy hair loss, and a fever of 102 degrees for several days was due to my positive results for Systemic Lupus Erythematosus (SLE-LUPUS). I needed to come into the office for more information on my next steps. I was numb. I had no clue what having lupus meant—let alone that they tested me for it! Did this mean I was going to die? How will it affect me? Can I tell my family and friends, or do I keep silent? So many questions, and I really did not want to know the answers. I wanted life to stay the same.
The following year, despite keeping quiet about the diagnosis, my symptoms showed up in church one day when I had a grand mal seizure due to two blood clots on the brain. I was rushed to the hospital, only to have more seizures and eventually be put into a medically induced coma in ICU. They discovered that, at twenty-seven years old, I had just experienced a stroke. When I came to, I felt bruised. All of the shaking from the multiple seizures had affected every muscle in my body. But with the help of a great medical team and God, I was able to walk out of the hospital in two weeks—no rehab needed, and no side effects from the stroke!
Many adjustments needed to be made to deal with my new normal as a Lupus thriver. I choose to use the word thriver because to live is to survive, but to thrive is to excel. I do not want to live a mediocre life; I want to excel in all that I do. I’d chosen not to talk about the diagnosis or the stroke for several years, but then I realized that this disease was heavily affecting minorities—specifically African American women ages 15-44. So, I decided to speak up, inspire, educate, and celebrate life within the invisible illness community.
Many do not understand that 1.5 million people in the United States have been diagnosed with Lupus and that 40% of adults and 66% of all children with Lupus will develop kidney complications. They do not understand that 90% of the people diagnosed are women, and it is two-to-three times more prevalent among women of color. Most people do not understand that Lupus is not contagious. It is not like cancer. It is not like AIDS. The immune system is overactive in Lupus and underactive with AIDS. Even with all of this, I believe there is still hope; the diagnosis does not have to define who you are. YOU DEFINE WHO YOU ARE! That’s why I started a lupus nonprofit, Beautiful Butterflies Inc.
Beautiful Butterflies Inc. was birthed from what could have been perceived by some as a dark place. I was given a diagnosis that has no cure, yet I chose to—and successfully do—live a productive life. Just as a caterpillar must go through a metamorphosis in order to emerge a butterfly, I too went through several dark experiences of Lupus.
While educating and inspiring others, I was blindsided once again by this cruel mystery. In 2015, almost eleven years to the day, I had another stroke. This time it was different. It was rare. When I went to brush my teeth, I couldn’t use my right side. I couldn’t comb my hair, dress myself, or walk in a straight line. Temporary paralysis. I was on blood thinners, and the doctors said a blood clot had formed on my brain and burst on its own. The neurologist said my scan looked like bird splatter on a windshield.
I had to put into practice everything I spoke into the lives of others. I now understood that my first fight was the battlefield of the mind. My fight looked and felt different. My thoughts mattered, how I spoke life to myself mattered, pressing through mattered if I wanted to live a full and productive life. The doctors said it would take six months to get back to a level of normalcy. In two months, I beat the odds and found myself getting on an airplane to go to a conference!
I trusted God, I spoke life, I believed what I spoke, and I put in the work and took what should have been a setback to propel me into a greater comeback. Not only do I have full activity of my limbs, but I have been blessed to advocate for those who feel as if they have no voice. Now at forty-eight years old, I am grateful for every trial and cocoon season of my life. Without them I would not be the beautiful butterfly that I am today!Leave a Comment