I should dust. The fan in my room spins repeatedly in a circle filling the room with a quiet breeze. It’s a nice feeling as my body slowly begins to wake up covered in sweat from a routine restless sleep, but I don’t want to get up. My thoughts are already racing and I can’t seem to break my staring contest with the fan.
I can hear her already. She’s in the kitchen banging pots and pans, a little louder than usual. Maybe it’s a “good day.” Maybe she has the energy to eat more than a bite of fruit for breakfast today. I just need five more minutes of quiet. I’m not ready to step outside and bear the reality that more than likely today is a “bad day.”
On the week of my college graduation, my mother sat my family down and told us she had cancer. For someone who prepares for the worst-case scenario at all times, I’d missed the signs and the news took me by surprise. I’d expected to enter a new and unknown time in my life but I’d figure the biggest challenge ahead was job and apartment hunting — not the possibility of navigating this world without my mother.
Oddly enough, knowing what I know now I realize this was only the beginning of my mother’s health journey — and the start of my understanding about health disparities in this country.
Learning I lived in a healthcare desert
After a year of treatment and the removal of her thyroid, we thought we were finally seeing light at the end of the tunnel. The doctors assured us we shouldn’t worry; my mom was lucky — she had “the good cancer,” the kind that was easily treatable. But this “good cancer” required us to drive four hours every two weeks for appointments, simply because we lived in Southwest Kansas, a region where specialized healthcare is scarce.
My mother’s experience underscores a larger issue of health equity, where how much you make or where you happen to live often dictates the quality of care you receive. According to the U.S. Department of Health and Human Services, nearly 20% of rural Americans live in areas with a shortage of healthcare professionals. My family felt the weight of this social and economic burden acutely. My mother had to quit her job, while my father, after 20 years, was forced to change jobs to manage the mounting bills, all while tapping into his retirement savings to ensure my mother received the best care possible.
On December 19, my mother was declared cancer-free — a perfect Christmas gift. But our joy was short-lived. Within days, she lost her eyesight in her right eye, followed by debilitating migraines, nerve pain, a loss of appetite, and significant weight loss, all without explanation. After a costly two-week hospital stay, doctors speculated it was an autoimmune disease attacking her nervous system. But where did it begin? And most importantly what was its next target?
Countless tests, a referral to the Mayo Clinic, and still no answers. My mother, a woman who had always been active and engaged, now struggled to complete even the simplest tasks without taking breaks. The doctors informed us that while answers were sought, my mother’s body would have “good days” and “bad days.” On the good days, she was fortunate to manage her pain; on the bad days, she was confined to her bed, barely able to summon the energy for a glass of water.
The mental toll on our families
I never anticipated that my family would change so dramatically. My mother’s health struggles on top of the economic burden put a mental toll on my entire family. The joyful days of family dinners, filled with laughter and playful teasing about the week’s silly moments, have been replaced by somber meetings focused on care logistics, travel, and medical plans. Our once-charming mother-daughter outings now involve long drives — four to eight hours — to appointments, often steeped in silence as we brace ourselves for the uncertainty that lies ahead or think about the bills that might rack up.
No one prepares you for the anticipatory grief that accompanies a loved one’s debilitating illness. My mind is consumed with thoughts of the future, yet I find it hard to summon the energy to get through each day. While my mother experiences fleeting “good days,” the disease has transformed her from the optimistic, spirited person I once knew into someone fraught with anxiety and pessimism, always waiting for the next setback.
The guilt of wanting to embrace life weighs heavily on me. Before my mother’s diagnosis, I had dreams of moving to Washington D.C., and diving into my early twenties with passion and purpose, ready to change the world. Now, those plans feel like a distant fantasy amidst the reality of our new normal.
And of course, resources for affordable mental health services for families struggling with healthcare issues are scarce.
We need systemic changes
My mother’s journey is a testament to the critical need for systemic changes in healthcare—changes that ensure everyone, regardless of where they live or how much they make, receives timely and effective care.
But not everyone has equal access to healthcare resources, information, and support. Factors such as race, income, and education level create barriers that can make health issues worse and harder to heal. For instance, a report from the CDC shows that Black and Hispanic Americans are 60% more likely to have diabetes than their white counterparts, often due to systemic barriers that limit access to preventive care and healthy food options.
To address the systemic health disparities evident in my mother’s experience and many others, we must invest in comprehensive health equity solutions that target accessibility, education, and community support in underserved rural areas like Southwest Kansas.
This should include expanding telehealth services. This would help people connect with healthcare professionals more easily, but we must ensure that insurance covers these services. My dad stayed at a job longer than he needed to pay costly insurance fees, I’m willing to bet he’s not the only one. A telehealth service would have saved us hundreds of dollars.
Mobile health clinics could bring preventive care, screenings, and education right into our communities, tackling chronic issues like diabetes and hypertension head-on. Training local community health workers is another important step; they can bridge the gap between healthcare providers and families, offering personalized support and guidance.
And we need more bilingual folks in the medical field. My family had the added cost of traveling with someone who could translate the news for my mom and dad. A translator isn’t always guaranteed and understanding updates and medical changes are crucial for my mother’s health. We want to make sure she’s making informed decisions about her care.
Furthermore, having resources to learn about nutrition and disease management, especially available in Spanish, would have been so helpful. My sisters and I were oftentimes left to scowl the internet for answers to our questions.
It’s clear that to address the urgent need for healthcare access and affordability, especially for rural, immigrant families like mine, we must advocate for comprehensive policies like healthcare for all and the expansion of Medicaid. Many families in similar situations as mine simply can’t afford hospital visits, which worsens health disparities.
My mother has at times contemplated whether or not her pain was worth the costly hospital bill. Or we’ve had to reschedule critical doctor appointments because my sisters or I could not travel with her or supply her with the necessary funds to travel. No one should be in that position.
In the quiet moments of reflection, I grapple with the reality that health equity is not just an abstract concept; it’s a personal fight for families like mine. As I face each day, I’m reminded that the struggle for health equity is about more than statistics — it’s about the lives behind the numbers, like my mother’s, and the hope for a future where everyone has the opportunity to be healthy — the opportunity for every day to be a “good day.”