- Essqulena Brown, 46, began having lupus symptoms in 2012.
- Within the first year she sold her car and home, but still ended up with $320,000 in bills.
This as-told-to essay is based on a conversation with Essqulena Brown. It has been edited for length and clarity.
My 2012 started off as an exciting year. I was promoted and bought a new car. But I also started having strange fevers that left me exhausted. Doctors would write me a prescription for antibiotics or iron pills, but they couldn't tell me what was making me so sick.
During the summer, I went on a trip to Florida with my husband and brothers. Our first stop was the pool. Within a matter of hours, I was covered in a red rash. When my fever spiked to 103.5, my husband brought me to the emergency room. The doctor wanted to keep me there, but my husband knew I had to get home to Mississippi.
I don't remember anything from the 17-hour drive. When I came to, I was in a hospital room with no recollection of how I got there. Two weeks later, I was discharged with a new set of prescriptions, and still no answers. I started using an office chair to scoot to the bathroom or around the house because I could barely walk.
The day after my birthday, I was hospitalized for 4 months
August 8 was my 35th birthday. I had rented a suite at a Mississippi Braves game to celebrate with my twin brother. I just wanted to get through the party and then go back to the hospital the next day.
I was so weak that my sister-in-law came to dress me. My family borrowed a wheelchair for me. At the party, I felt like a zombie. I made a toast with my brother, but I couldn't eat anything or play with my nieces.
The next day I went to the hospital. I didn't get out until Christmas. I remember lying in the intensive care unit, where I stayed for 87 days. I heard a doctor tell my husband, "We're doing all we can, but it doesn't look good." That doctor didn't know what a fighter I was.
I was diagnosed with lupus and started intensive chemo
Finally, in early December, doctors gave me an answer: I had lupus. The next day, I started chemotherapy, which suppressed my immune system and put my lupus into remission.
I needed chemo to save my life, but it came at a high price: nearly $100,000. During the four months that I'd been in the hospital, my husband sold our new car and then our home. I always earned more than him, and without my income, we simply couldn't pay everyday bills, let alone my medical expenses. When I was finally discharged on Christmas Eve, we no longer had a home to return to, so we went to my mother-in-law's house.
I was forced to move to the delta, where medical care has failed
At that point, we had $320,000 in medical bills. I had no insurance and no income. The next spring, I was finally approved for disability and Medicaid. That covered some of the cost, and the hospital wrote off a bit more. In the end, I was responsible for roughly $190,000.
With that debt, we couldn't afford another house in Jackson, where we were living. Instead, we had to move to the Mississippi Delta, where my mother had left us a home.
When it comes to natural resources, the delta is rich. We grow the corn, soy, and cotton that this country was built on. But financially, it's the poorest region in the poorest state. Up to 40% of people live below the poverty line. And we've been completely abandoned by the medical infrastructure in this country.
I can name five local hospitals that have closed or offer very limited services. This month, a friend broke his leg. I could see the bone. But an ambulance wouldn't even come. Instead, he was loaded into a friend's SUV and driven to a hospital. That hospital couldn't even treat him, so they sent him to Jackson, another 90 minutes away.
I'll be paying medical debt forever
When I think about what's happened to me and my community, I'm hurt, I'm angry, I'm upset, and I'm disappointed all in one. The worst part is there are solutions, like Medicaid expansion, that would help women like me. I started advocating for that as part of the Mississippi Black Women's Roundtable.
I know I'll have medical bills till I die. I pay $50 a month, which makes little difference toward $190,000 in debt. To fight lupus, you have to have endurance. I'm tapping into that same strength and endurance to fight the violence of denying access to medical care to a whole region of people.