Living in the Gaps: Survival Through Illness and Poverty

A personal journey through health battles and financial ruin in a country whose flaws run far deeper than any president

The summer before my sophomore year in college, my health took a dive. I began experiencing dizzy spells accompanied by sharp pains in my abdomen and lower back. Gradually the symptoms became worse, to the point that if I didn’t immediately sit down, I’d pass out from the pain.

My body took days to recover each time I’d experience a rapid onset of symptoms. This caused me to miss work at my summer job, and I needed that job. I worked my way through college in addition to academic scholarship, and student loans.

I went to doctors, took tests, nothing seemed wrong. A specialist who suspected an issue with my gallbladder issued a strict dairy-elimination diet, to see if my symptoms lessened. It was torturous, because I love dairy (especially cheese) more than most people love life.

About a month into the gallbladder theory, I went for my annual women+ exam (trans men & gender queers need this, too.) Not long after, I got a call from my GYN’s office explaining that my results were abnormal and I’d need a biopsy. The word biopsy choked my words and replaced them with audible tears. I remember the nurse explaining it wasn’t necessarily cause for concern, that I was young and healthy, and everything was going to be okay. I stopped crying, but I didn’t stop being afraid of what could be.

Later that day, my dad brought me a pint of Cherry Garcia and we joked that at least I could eat ice cream again.

The biopsy results returned a diagnosis of pre-cancerous lesions growing on my cervix. I didn’t really know what my cervix was—I knew I had one and that was about it. In simple terms, the cervix is the narrow bottom of the uterus that keeps babies from falling out of vaginas, among other things.

It is also the part of women+ bodies that is often damaged from extremely violent sexual assaults, and why some SA survivors have difficulty or cannot reproduce, particularly those who were child survivors. I mention the grim topic of the lifelong physical impact from sexual violence, because it receives very little medical attention and sexual violence is increasing globally.

One of many examples of underfunded health concerns that are most often viewed as solely a “women’s issue.” Look how long it took for breast cancer to get U.S. national public education and PSAs, more funding—and America loves tits. The women those tits are attached to? Nnnot so much. We care even less about cervixes.

My GYN was also a surgeon, allowing for quick surgical treatment, which was pure luck. I was told that only 3% of patients who underwent my treatment plan would see recurrence within a 15 year timespan.

Two weeks after surgery, I started my sophomore year in college with medical debt, and took out my first student loan. It’s important to note, because not all of us begin adulthood with even remotely similar circumstances. These differences shape our lives in more ways than most care to admit.

My surgery was a success, for 6 years.

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When symptoms started again, I was at the end of a year serving in AmeriCorps, working with the National Coalition for the Homeless at Atlanta’s notorious Peachtree and Pine shelter. I encourage you to read The Taking of Peachtree-Pine and the Dawning of Cop City.

When you volunteer for national service, you receive a very small stipend, food stamps and Medicaid coverage. I called up my GYN surgeon and tried to book an appointment. She told me she didn’t accept Medicaid because it was, “too hard to get reimbursed and my staff don’t want to deal with the paperwork.”

I still have the notebook where I wrote down her answer. In that moment I felt so small and embarrassed about being poor. Ashamed that I didn’t have the $150 for a cancer screening, or gas+lunch money for a friend to drive me from Atlanta to Marietta. I sat in my room and cried so hard that Jon (my roomate at the time and the reason I write here) checked on me.

I spent days trying to find an appointment with a Medicaid-accepting GYN before insurance ran out. I called AmeriCorps, asking if there was any way I could extend the insurance or other options I wasn’t aware of—the answer was sorry you’re fucked.

Then I got a call back from a women’s clinic an hour west of the city. They understood the predicament of my situation and squeezed me in. The clinic didn’t charge me a copay and when my results arrived with the bill, the charges waived. The nurse wrote a sweet note that made a terrible situation feel a smidge better.

My results were abnormal and a biopsy was the next step. By that point my insurance was over. I wasn’t eligible for Georgia Medicaid outside of AmeriCorps service—only those pregnant, with children in poverty, or the disabled. Something a lot of people don’t understand is that to be eligible for cancer-specific assistance, you have to be a certain stage. It doesn’t matter how poor you are or your medical history, you are on your own if you don't meet requirements.

After a couple of months I found a job with good health coverage. My same GYN did a biopsy in the fall and I had surgery that winter. There was significant lesion and benign tumor growth. My doctor classified it as stage 0 cervical cancer, because of rapid proliferation (the growth of abnormal cells) but no evidence of infiltration in deeper tissue. One mass, next to my bladder, remains to this day because I’ve never been able to afford a specialist with the skill to remove it.

During the course of recovery and a year of follow-up treatments, I was still living in debilitating pain, and working a job in ed-tech that required long hours and regular travel. It was clear something was still very wrong inside my body. I pushed my doctor for exploratory surgery and was diagnosed with endometriosis, which I wouldn’t wish even on Dick Cheney.

After a deep dive into research studies and support groups, I found out most women go about 8-10 years with endo symptoms before getting a diagnosis and surgical treatment. The catch-22 with endo is it can only be diagnosed by surgery, and OB/GYNs, even the good ones, don’t take women’s pain seriously.

I had painful cycles since 16 and the solution then, as now, is to throw girls+ on hormone treatment, to mask the pain of tissue growing where it shouldn’t. Endo operates very similar to cancer in this regard. Lesions create their blood flow sources and can grow on their own hormone production. It is a horrible chronic illness for many.

It’s normal for periods to be uncomfortable, it is not normal for periods to be painful. Women tolerating pain is ingrained in our culture, and global misogyny. It has very real impacts on our health, careers, finances, relationships, and upward mobility.

One of the issues that complicates my specific health needs is that internal scar tissue from my cancer-related surgeries combines with the tissue endometriosis creates. Our bodies scar on the inside, just like the outside, and it can cause complications in a number of ways.

Endometriosis is known to grow very well on scar tissue. Many women who’ve had C-sections experience more endo pain because of this. Using myself as an example, endo has fused my left ovary to my abdominal wall. It feels like someone sewed my insides together in that spot. When inflammation from my cycle starts, this tissue pulls from both directions. It’s the kind of pain that steals your breath and makes you close your eyes until it passes.

This is the pain that took my love of running away years ago. I ran since childhood to clear my head and release all the pent up energy. I miss it. I miss a lot things that chronic illnesses and the cost of it have taken from me.

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In late 2015 I started treatment again, out of my savings. I was working for a grassroots homeless nonprofit I helped create and no one had benefits. In the spring of 2016, I was laid off from the nonprofit in retaliation for reporting financial fraud and physical abuse of clients. This is how I became a freelance writer, out of survival. Without stable income, I had to stop treatment. I’ve never written anything public about that experience, but I will.

In 2017, I moved to New Orleans. Louisiana is one of the few southern states to expand Medicaid coverage for poor adults without children, but I had to wait for residency requirements before considered eligible. During those months my symptoms and pain progressed to the point that I had difficulty walking my dog, or standing for more than a few minutes.

It was a relief to have Medicaid coverage, but three days before I started treatment, my dad died suddenly. He had been by my side at every surgery. Always brought me flowers in recovery. I didn’t know how I going to get through a difficult illness, poverty, and immense grief at the same time. Thank Cher for amazing therapists.

That last surgery was not a full success. One of the lasers broke in the OR, and although it was 3 hours of cleaning up my insides, nothing could be done about my rogue ovary or benign growths in more difficult places. My recovery was not as good as previous surgeries, and my surgeon was a bit shit. He did not have a gentle touch by any means and my insides felt that.

Because it’s always something in my life, a month after the surgery, I was hit head-on by a drunk driver. My incision wounds opened back up and my left shoulder was injured, which required more medical care, more expenses. The car was totaled and I lost a full time job I had lined up, that required a car. Everything I had worked toward in 2018 was erased by an asshole in his dad’s BMW.

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The pandemic blew my next surgical plans and financial stability to the wind. Half of the agencies I worked for closed within the first 3 months of lockdown. Freelancers like myself weren’t eligible for certain pandemic benefits for months after traditional W2ers. I had no safety net, no family to lean on, no partner.

I haven’t had a cancer screening in 4 years. I tried this past summer, had to borrow friend’s car and gas money to drive into New Orleans. I missed one of the clinic's 4-step check-in process (a machine was broken) and they were too overburdened with patients to see me. The nurses at my provider recently went on a one day strike over working conditions and the impact on patients.

Most of my current challenges are because I’m homeless, which I have been for a few years. I’ve bounced between friends across the Gulf Coast and Southeast while finding what work I can remotely. None of it pays enough, none of the contracts last long enough. Corporate America seems disinterested in my background. I polish other people’s resumes and help them land interviews and jobs, but that magic seems to escape my own efforts.

I don’t know where I fit in this country anymore, if at all. We recognize the moral and systemic failings, the wasted healthcare and housing money on bombs. We see that both major parties have moved further right for decades. We witness the growing number of people sleeping on the streets and in encampments. We know that it’s now legal to arrest someone just for being homeless. Homelessness isn’t a protected demographic, afterall, and it fucking needs to be.

The majority of our country aren’t one missed paycheck away from homelessness, they’re one paycheck away from being a criminal. Poverty has always been treated like a crime, but now it’s official from the Supreme Court.

I don’t know to survive in this system. It’s never worked for me.

So, no, I’m not crying in fear over Don Trump. Absolutely not.

And I won’t be wearing a performative blue bracelet with the other white women. I’ll be busy doing the collective work that I’ve been doing with Palestinians and Jews, and everyone else who still has a moral compass.

Fear about what America can do to you is something I live with every day, and have for most of my life. I’m not afraid of what could be, I’m afraid of what already is. I fear what has been allowed, and what will continue to be allowed. This is bigger than one rotted orange in a blue suit.

I am concerned for humanity.

Which kills faster—illness or US fatalism?