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
Anitra C. Goode says
Keep thriving my sister!
Britton D Beasley says
So proud of you for your fight and the legacy you continue to build. 💜🧡🦋
EGH says
Loved your story. Thanks for sharing. I love butterflies and you are one of its beauties. Praises to our GOD!🦋
Kierre Bjorn says
You are exemplary of thriving! Thank you for the way you continue to push Hope into tbt lives of so many others who have invisible illnesses 🙌🏾🫶🏾🌱.
Mechelle Gurley says
I LOVE this!! I would like to be a Lupus thriver! I was diagnosed in 2000 with Lupus and Guillian-barre syndrome . I was paralyzed for a month. They said I wouldn’t walk again But GOD! I am a survivor but I am tired of surviving I want to THRIVE!
Nesha Henderson says
I know you don’t know me but I’m so very proud of you! Proud of your courageous efforts and spirit! I pray that you continue to heal and thrive
Jessica says
Beautiful!
denise lloyd says
so inspiring. It is your mindset that has elevated you to where you are today! You go, Woman! Thank you for sharing. Your life is purposeful and fulfilling! Continue to be the thriving inspiration for others!
Charlisa Herriott says
You are a CHAMPION!!! Walk in your HEALING!!🙌🏾💙
Sandra Murphy says
Thank you for standing up and sharing your story!!!
Mary C Patterson says
I am a 69 yrs young Lupas thriver also since 2007@ Fantastic story. Thrive on my sista, thrive on! Blessings!
Lisa says
Thank you for such a beautiful story. Thank you for your courage, faith and strength. Your story is such an inspiration. I also love butterflies🦋
Melinda Shrewsbury says
You are the true definition of a thriver. Your willingness to support so many and your positive attitude inspires me daily. Continue to share your story!
Shelia gorham says
This beautiful written and expressed in such a personal and inspiring manner . Thank you Keva for sharing and all the work you are doing in the Lupus community. You are a blessing ❤️
Nina says
Your story and work are very inspirational to all who live with invisible illnesses.
Shayla says
Thank you for sharing! We are so proud of you❤️
QuaWanna Bannarbie says
Such an inspiring story. Last year, a dear friend of mine died of complications with lupus. She was so strong throughout her life. It is a battle to thrive in life while living with lupus. I know you are definitely battle-tested. Thank you for sharing your story.
Clarissa Abernathy says
WOW what a great testimony. God Bless YOU and all the people that have lupus .
Elmerette Irby says
You’re such as inspiration to me and others. Thank you for your encouragement and dedication to life. God has got you and your purpose has been divinely defined by HIM. Love you, Elmerette
DJ Chloe says
Beautiful both inside & out! Continued blessings to you & all of the communities that you work to inspire & impact!!
Carol Rivera says
Continue fighting the good fight with lots of grace, and always hopeful. You are indeed an inspiring warrior, and I KNOW you will ALWAYS overcome any obstacles that comes your way.
~Philippians 4:13
Rivera