Illustration by Ren Rader
Both of my older brothers, Caleb and Kyle, were born with cystic fibrosis, a genetic disease that mainly affects the lungs. It can also affect other organs, such as the liver in Kyle’s case. Cystic fibrosis, or CF, has resulted in Caleb receiving a double lung transplant and Kyle receiving a double lung and liver transplant, in addition to a lifetime in and out of the hospital for both. Paying for these expenses has been a huge burden on my family. The high cost of necessary healthcare has been such a hardship on my family, specifically my mother, and has drastically changed all of our life paths. This burden can be lifted off the backs of the sick and their families if Medicare for All is instituted.
My brothers’ CF wasn’t discovered until after I was born, so my mom and dad were raising three children, two of which had CF. We were a lower-middle-class family, with my dad working a factory job and my mom a part-time dental hygienist that wanted to spend most of her time taking care of her three sons. However, because of medical expenses, my Mom had to start working full time. She was fired from a few jobs because she had to constantly take time off work to take my brothers to their doctor appointments or to visit them while they stayed in the hospital. She ended up finding a dental job that paid well and allowed her to take off all the time she needed to take care of her sons. She worked there for the better part of a decade. However, the dentist began to sexually harass my mom, as well as many of the other members of the staff, a couple of years into the job. My mom had to put up with it; it wasn’t likely that she would be able to find another job that let her take that time off without taking a major pay cut. Eventually, she couldn’t take it anymore and quit.
She worked many jobs after that but was never able to get back to the wage she was making. However, as Kyle’s condition worsened, it became clear that he desperately needed a transplant and he was moved to the front of the waitlist. This meant that my Mom and Kyle would move down to Houston, four hours away from our home in Burleson, so that Kyle could be close to the hospital whenever the transplant was ready. They spent about a year and a half waiting for the transplant and for Kyle to recover. During this time my mom wasn’t able to get a full-time job because she was taking care of Kyle, taking him to doctor’s appointments just about every day. She worked some temporary jobs whenever she got the chance, but that certainly didn’t provide a stable source of income. She and Kyle were reliant on charity when they stayed in Houston. The apartment they stayed in was paid for by a Houston church. They also had to rely on fundraisers by our church in Burleson to help pay for medical expenses and day-to-day costs. Had it not been for that charity work, we may have had to go into major medical debt just to ensure that Kyle could survive.
Both of my brothers were born with these terrible diseases, and that fact alone greatly altered the lives of our family. But the fact that we were burdened with having to pay these large medical bills made things just so much worse. My Mom’s ambition in life was to be a mother; growing up she never envisioned herself working a full-time job while raising children. And if she had been able to work just part-time, then she would’ve been readily available to take my brothers to doctor’s appointments or the hospital. But, because we had such large medical bills to pay, she had to work full-time, which gave her much less time to take care of her children. The economic pressure of those bills forced her to work a job where she was sexually harassed for years until she couldn’t take it anymore. Those medical bills jeopardized my brother’s survival, and it would’ve been even worse if we were not fortunate enough to receive charity from churches in Houston and in Burleson. While CF is certainly responsible for much of the woes our family has suffered, the burden of paying for healthcare necessary to survival has greatly exacerbated our problems.
All of this is because our family had to pay an exorbitant amount of money just so my two older brothers could live. These problems aren’t unique in America; stories like mine are commonplace. The burden of paying for healthcare is inhumane and has destroyed so many lives. Our country needs Medicare for All, and we have a fighting chance of getting it if we vote during this primary season.
daisy • Feb 13, 2020 at 1:58 pm
I see what you’re trying to say … but the emphasis should’ve been how corrupt insurance companies are as well as the healthcare system. But it is a shame that many families are burdened with financial costs and having to make difficult decisions.