When I was 25, my brain was falling out of my skull and my head was dislocating from my spine. I didn’t even know that could happen to a human body, and I certainly never thought it could happen to me.
I’ve had Ehlers-Danlos Syndrome my whole life, but when I started working for Minnesota’s Math Corps in 2011, I had no idea how severe my health had become. One day at work, my ankle suddenly gave out from underneath me and dislocated. All of the connective tissues in my body and autonomic nervous system were under attack and something was making it more severe. I was unable to walk and no one knew why. Soon, I was unable to work and had to leave my job, but I was determined to figure out what was happening to my body.
Without the capability to work and afford health care, I applied for disability and promptly received a rejection letter saying that I was too young and too well-educated to truly be disabled. Luckily, that same year, the Affordable Care Act (ACA) was enacted in Minnesota, which meant that people under 26 could be covered under their parents’ health insurance.
Because I was 25, I was able to go back on my mother’s insurance. Now, I could afford a new and better doctor, who finally figured out what was going on with me. He diagnosed me with a rare condition called Chiari Malformation. The ligaments in my spine could not fully support my spine and parts of my brain were literally falling through a hole in my skull.
Neurosurgeons were terrified to perform surgery on me. Stitching up my body was like stitching up butter. There was only one neurosurgeon who was willing to take this on, and he was on the other side of the country. Flights and lodging were hundreds of dollars, and my surgery cost tens of thousands. There was no way I could afford that out of pocket. But because of my mother’s health insurance, I could.
When I arrived to meet with my neurosurgeon, he said, “I don’t know how you’re alive right now. We need to do surgery immediately.”. After the surgery , I was able to walk again. Without the ACA, I would not be walking today, and I would likely not be alive.
In the spring of 2017, the Congressional Republicans began ramping up their efforts to repeal the ACA. I went to visit the office of representative Erik Paulsen to express my concern. Characteristic of Paulsen, he was not available to meet with a constituent, so I met with his staffer instead and shared my story. I asked how the GOP’s replacement of the ACA was going to protect me. His staffer exclaimed that Erik Paulsen is a Republican and Republicans voted for him, so he’s going to represent the red and not the blue. Myself and everyone else in the room gasped. I fired back with a truth that still stands today: “We live in a purple district.”
Just a few months later on May 4, 2017, Erik Paulsen voted to repeal the ACA.
1 in 4 Americans lives with disabilities and chronic health conditions, and over 250,000 Minnesotans in this district live with pre-existing conditions. So even though my condition may be rare, people having their lives turned upside-down by health problems is not. A Congressional representative is elected to represent an entire district, and health care impacts all of us in this district.
I am a Minnesota native. I am a wife. I am a mother to a 10-month-old beautiful baby girl who, no matter what condition arises, deserves a bright future in this state we all call home. I am a constituent of representative Erik Paulsen, and I can confidently say that he prioritizes political power over people, and that will remain true so long as he remains in office.