Turning Pain and Tragedy into Advocacy
For Mia Robinson, every day is planned around chronic pain. “How I move in life is dictated by my chronic illness,” she shares. But she has turned the challenge of pain into a positive: “I use it as fuel when I’m advocating.”
Mia, 38, is a Black woman born and raised in Atlanta, Georgia. She has a form of sickle cell disease called sickle cell hemoglobin C disease (also called hemoglobin SC disease or HbSC). According to institutions involved with learning about this disease, HbSC is a milder form of sickle cell disease. But according to Mia,“I think it’s just more silent.”
In the average body, a protein called hemoglobin helps transport oxygen to various places in the body and returns with carbon dioxide. Picture an old-fashioned milkman using red blood cells as their truck, traveling through the bloodstream. Those red blood cells are usually shaped like discs, making it easier for them to travel through the body. For people with sickle cell disease like Mia, a mutation causes their red blood cells to be shaped more like crescents. Because of their shape, these cells can bunch up in the bloodstream, limiting blood flow. On top of that, they aren’t able to carry enough oxygen where it needs to go.
All of this can cause incredible pain attacks, often called crises, that can require trips to the hospital or emergency room.
Mia counts herself lucky. “I would have hospital admissions every several years, unlike my peers with sickle cell—they may have to go every several months.” As she grew older, though, that changed.
TRAGEDY EXACERBATES HEALTH PROBLEMS
Shortly after turning 16, Mia was diagnosed with avascular necrosis (AVN) in her hips. AVN occurs when the blood supply to the bone is cut off; it is fairly common for those with sickle cell disease. Mia’s left hip deteriorated more quickly after she broke her right leg. Still, it wasn’t until a little over a decade later that Mia got her hips replaced.
When Mia was 20, her sister, Toya, died an hour after giving birth. Mia suddenly found herself helping her own mother raise her niece Devyn. Mia believes some of her sister’s symptoms, including darker and swollen legs, were ignored. Toya had preeclampsia, toxemia, and gestational diabetes, and staff members realized too late they had not given Toya a medication to avoid complications from preeclampsia. “When they noticed this, they immediately administered the meds. However, I believe this made things worse,” Mia says. “My sister had a seizure right after asking to hold her baby girl. They told her to wait, but she went into cardiac arrest and passed away. She never got to see her baby girl or even hold her.”
According to a 2021 study funded by the National Institutes of Health, Black mothers and birthing parents are nearly four times more likely to die during pregnancy or shortly thereafter than their white counterparts. “It should not matter what one looks like,” Mia says. “We are all human—no matter the race, gender, religion, sexual orientation, or socioeconomic status. We all deserve fair treatment.”
Facing so much grief on top of physical pain, Mia turned to emotional eating to cope. “I was against therapy at the time,” she says. “I didn’t really wanna talk about my dead sister the whole time.”
She wondered: “Why did God take the healthy one and leave the sickly one here?” The additional weight she put on during this difficult period worsened the deterioration in her hips. She had to have both hips replaced at the age of 27.
Mia also developed a neurological disorder, idiopathic intracranial hypertension. Pressure had built up in her brain due to swelling around her optic nerve, causing increased pain and bulging eyes. She underwent regular spinal taps to relieve the pressure before having surgery on her optic nerve.
A NEW CALLING
Mia co-founded the nonprofit Sickle Cell Awareness 365 or SCA 365 in 2014 with Jennifer Callwood. Best friends for many years, they had even been featured in a piece about Camp New Hope, a camp for children with sickle cell, in The Atlanta Constitution back in 1993.
Years before founding the nonprofit, given the economic factors she was facing, Mia had to leave college to work a government job. But she felt like she was missing her calling. In 2016, she was able to leave her job to put her health first. After spending time resting and tending to her family’s needs, she focused her energy on anything and everything related to sickle cell. “It’s really God’s reason for giving me sickle cell. I have to make sickle cell pay rent,” Mia shares, laughing. Sickle cell isn’t the ideal roommate, but making it contribute to the household income by turning activism into a job is a great move for Mia. “I get to do what I love and make my health the first priority.”
Through her work with SCA 365, Mia works on fundraising, events, and supporting other sickle cell warriors in the Atlanta area, often partnering with other local organizations. Mia now serves as the creative arts instructor for Camp New Hope, and also is an ambassador for Sick Cells, an organization that gives a voice to those living with sickle cell.
GRIEVING, LEARNING, AND MOVING FORWARD WITH NEW PURPOSE
Eliminating the stress from her prior job has paid off. As Mia lost weight, her neurological condition improved. She lost and has kept off about 70 pounds since then, making peace with her history of emotional eating. “The physical transformation was a lot quicker than the mental one,” Mia says.
In the past, Mia has been accused of seeking pain medication for fun or to “feel the high.” Because she doesn’t look sick, people call into question how ill she actually is. As with many people with invisible illnesses, she still struggles to find providers and hospitals that she can trust. Mia’s pain levels vary throughout the day, ranging from manageable to extreme pain that sends her to the hospital.
Mia also returned to school, finishing her bachelor’s degree of sociology in December 2021. Unfortunately, her graduation experience was bittersweet: Jennifer passed away the next day. “She tried to prepare me for that,” Mia says. “As morbid as it is, we would joke about [death].” Mia once told Jennifer to give her a day or so to adjust before popping in to haunt her. “She didn’t do that!” Mia says, laughing again.
“Her spirit was heavy with me that day [that she passed], and I needed it,” Mia recalls. “It keeps me going, knowing that she’s there.”
Mia isn’t a stranger to loss. She says, “I’ve lost so many more people because I’m in the advocacy realm. Anytime someone transitions [to death], I draw on their spirit to keep me going.”
True to honoring those who are gone, Mia points out connections between losses in the sickle cell community and losses on a larger scale. “I see a lot of positives happening right now with COVID-19 because we’re talking about health disparities now,” she says. There are also more options for virtual connections and care.
Mia advises advocates and potential volunteers to “try different communities and see which ones they’d work well with.”
She’s also quick to point out that the connections each person makes in their community are vital and how important it is to develop friendships with people who understand. From persevering through her health problems, to graduating college, to eventually founding a nonprofit that helps people all over the country, Mia has used her passion and skills to uplift both the sickle cell community and herself. As her friend Phillip Okwo says, “It takes a village to raise a child. And it takes a tribe to sustain a warrior.”