By Genoa Barrow | OBSERVER Senior Staff Writer
When Celeste-June Taylor learned she’d no longer be treated by her childhood doctor, she burst into tears. She wasn’t throwing a tantrum, but coming to the realization that her care was about to undergo a drastic change.
“I literally cried when my pediatrician told me, ‘You’re 18 now, it’s time to go to the adult floor,’” recalled the Sacramento State student.
Transitioning from childhood into adulthood can be rocky in most circumstances, but when you’re living with sickle cell disease, it can literally be more painful. Taylor, 34, remembers feeling as if she were on her own.
“The treatment from being a [pediatric] sickle cell patient is a [180-degree] difference,” she said. “We don’t get the bedside manner. We get treated as drug addicts.”
Sickle cell patients often are accused of faking or exaggerating their pain to obtain prescription drugs.
“If we’re crying, we’re doing too much,” she said. “If you’re not crying, you’re not doing enough. It’s like a double-edged sword.”
Taylor has been turned away by emergency room staff when doubled over in pain, even though she was able to tell them exactly which medication has helped her in the past. She once overheard a doctor saying, “Oh, she’s back again” in reference to her frequent visits.
Taylor deals with chronic pain daily. Recent cold weather worsened it, but she manages at home. She described a crisis as feeling as if she has been “run over by a car 20 million times.” Thankfully, March marked four years since Taylor’s last episode of that magnitude.
Four is a significant number in Taylor’s sickle cell journey. She was that age when her family learned she had the disease.
Originally from St. Louis, Taylor has lived in Sacramento since infancy. She was, as older people would say, a “sickly child.”
“When I was a baby, [my parents] knew something was wrong,” she shared. “I was always moaning and groaning in my sleep and I just didn’t look comfortable.”
Neither of her parents knew they carried the trait and that they’d passed it to one of their four older sons and the disease to their daughter. At one point doctors told them Taylor was simply experiencing growing pains. They were later told she had the trait. It wasn’t until a life-threatening crisis at 4 that they were told she in fact had sickle cell.
Taylor credits a lack of major incidents to medication and monthly transfusions.
“It took quite a long time to find this regimen, but I get a blood exchange once a month,” she said. “I go to the clinic and I’m there basically all day. They take out 800 milliliters of my blood and then I get three units of blood back. We started that in 2019 and that’s what’s been helping me.”
Far Beyond Expectations
At age 10, Taylor was told by a doctor that she wouldn’t live beyond 18.
“That was scary. I’m not gonna lie.”
The prediction was a lot to process, but Taylor’s mother and father were a calming force and offered their own parental prognosis.
“My parents talked to me and told me, ‘They don’t have the last word, God does. That’s not something that you should worry about. You don’t need to have that on your heart.’ They said, ‘Doctors are doctors and science is science, but there are miracles every day.’”
Years later, while attending Rio Cazadero, a continuation high school in the Elk Grove Unified School District, a program staffer added similar words of upliftment. Taylor said she was kicked out of Monterey Trails High School her junior year for “being sick all the time” and not having enough credits to graduate. The staffer, a woman named Beverly, worked for the Regional Occupational Program and took Taylor under her wing upon learning they both had sickle cell.
“And she was in her 70s,” Taylor recalled. “She said, ‘Don’t you listen to those doctors. You will make it if you want to make it.’ She said, ‘I’m still here. I’m still going’ and that right there, when I talked to her and told my parents, I was like, ‘They got me messed up.’”
Taylor is in her second semester at Sacramento State, working toward a bachelor’s degree. She previously earned an associate degree from Sacramento City College.
“It took me 10 years, but I did it.”
She originally planned to become a nurse who could empathize with sickle cell patients, having been in their shoes. Her goal to be a compassionate advocate remains the same even after shifting gears to focus on social work. Recent class discussions centered on medical racism have been an eye-opener.
“Just the things that people say and hear, like, ‘Black people don’t have as bad of pain as white people.’ How? Says who?” Taylor said. “The crazy part is, they’re still teaching this today.”
Taylor wants to see change in the medical profession and more support groups for those living with sickle cell. She’s thankful for UC Davis Medical Center nurse practitioner Natalie Merilus.
“She is for the people. I have Natalie’s cell phone number and I can call her and say, ‘I need help’ and she’s on it.”
Speaking up and advocating for yourself is crucial, Taylor said.
“You know your body more,” she said. “You’re the one dealing with this on a daily basis and going through things that doctors don’t see. I had to do it. I said, ‘I know you really want me on this hydroxyurea but, one, it’s not helping and, two, it’s making my hair fall out and I’m not having all that. I’m not doing any side effects. We have to try something else.’ And that’s what we did. That’s the one thing that’s gotten me to where I am.”
Taylor is featured as a “sickle cell warrior” in a new video for a “Neglected No More” campaign produced by Networking California for Sickle Cell Care, Sickle Cell Disease Foundation and the Center for Inherited Blood Disorders. She’s sharing her story and the realities of living with sickle cell to encourage others.
“I hope people walk away knowing that, one, God always has the last say and, two, that no matter what, I’m gonna be me. And it’s OK to be you and to always know that you’re stronger. You have the power.”
This article is part of a series that highlights sickle cell’s impact on the African American community and how medical professionals are working to remove barriers to care and ensure that patients get the treatment they deserve.