This is when lifetime limits and pre-existing conditions almost killed me and my brother

by Rylin Rodgers

Rylin's daughter wrote this essay for college applications. Although Graham-Cassidy has been defeated and the Affordable Care Act continues to protect families' health care, the Rodgers' family story makes clear how important health care is--and reminds us that sharing our stories can help change legislators' hearts and minds, and help us WIN for women and families.

Describe an early memory. What did it mean to you then? What does it mean to you now? (250-650 words)

The nearest Stride Rite looked a bit like a toy store, with a rainbow carpet and wooden shelves adorned with shoes in every color and style. I was so excited about getting new shoes; the ones I settled on were gray and purple. My brother picked out black shoes, though he didn’t share my appreciation for sparkles or lights, and our mom paid before we were on our way.

It’s a happy memory for me; I got fabulous shoes that fit over my AFOs and in which I could walk. However, I also recall the scene a few hours earlier that led us to the magical Stride Rite store. We had stopped to get the mail on the way to a doctor’s appointment, and Mom opened a plain white envelope with no return address to find several hundred dollars in cash. It made her cry, but when I asked what was wrong she said she was just happy. Happy because she could eat, and pay for parking outside of the Children’s Hospital, and buy her children shoes that allowed them to learn to walk. 

This is medically induced poverty. This is the reality of paying for health care, of keeping complex kids alive. This is my childhood. This is when I was uninsurable; this is when I was on the waitlist for a Medicaid Waiver; this is when my parents gave up everything they could to pay for what I needed; this is when people left money in our mailbox and on our windshield and under our door. This is when lifetime limits and pre-existing conditions almost killed me and my brother because of cost-prohibitive medical needs, nearly killed my parents because they didn’t always get to eat.

When you Google my name, you can find an article about this part of my childhood: “The Rodgers: Medical Debt Changed Their Lives.” And it did. When I was little I didn’t understand debt or poverty or health care financing. Now I understand the tears my mother shed over the kindness of someone who we can never thank. I understand my illness and its implications for my health and my future finances. I understand what it did to my family: my parents had college degrees, full-time jobs, stellar health insurance and a home they owned when my brother was born; none of that made a difference when they had two children with millions of dollars in medical bills. None of those things will save me if I lose coverage.

Our family celebrates the anniversary of the ACA. It was the beginning of a new life for us. Dinner out, designated grocery budgets and better wheelchairs--an end to medical bills greater than our annual income. We still pay, of course; we pay premiums and deductibles and expenses not covered by my primary or secondary insurance. But the ACA leveled the playing field; it gave families like mine a chance.

That early memory of kindness and beautiful shoes reminds me of the generosity of people. It reminds me of the joy in my childhood beyond the serious illness and medically induced poverty. It reminds me of my gratitude for my parents' sacrifices. It reminds me of hope for a better future. It reminds me of love.