An Open Letter to the GOP: You Are Sentencing Me to Death

Raul Carranza. (Courtesy of Raul Carranza)Raul Carranza. (Courtesy of the author)Dear GOP,

I am the one you are about to kill. I am the one whose life you are about to destroy. Your obsession with dismantling our health care system by repealing and replacing Obamacare with your draconian abomination of a bill known as the American Health Care Act is the greatest existential threat I have ever faced.

I have a rare genetic mutation that presents itself as muscular dystrophy. I was 2 years old when the doctors diagnosed me and told my parents that I would be lucky to live past my teens. I’m 27 now and I have been able to live a full life — thanks in part to the fact that my mom crossed the border to have me in order for me to be born a US citizen, just like my sister was. Now, that fact may make you angry, but think about this: My mom believed in America so much — that I would have a better life here than I would in Mexico — that when she went into labor, instead of going to the nearest hospital, she drove to the border crossing in San Ysidro and got in line with hundreds of other cars. I am lucky that she did, because it is thanks to programs like Medicaid (it goes by Medi-Cal in California) that I have not only survived but thrived. I wasn’t always on Medicaid. My dad had a good job and we were able to afford Anthem/Blue Cross, but the older I got, the sicker I became. Hospital visits piled up, and I hit my lifetime limit well before high school.

My health took a sharp decline in middle school after I started having trouble swallowing. It wasn’t long before I lost the ability to eat and weighed under 80 pounds. I needed a feeding tube and was lucky to survive the surgery to put it in. I was also lucky to have Medicaid. The program not only covered the surgery and hospital stay but also the formula and after-care supplies — and it still does.

Not more than two years after my surgery, I was using a breathing machine full-time. My doctor didn’t like my use of it because the machine was meant for sleep apnea, not to be used 24 hours a day. He wanted to put in a breathing tube because it was safer than wearing a mask all day, but I was 13 and I saw that breathing tube as the beginning of the end. One day, my family was in the kitchen, picking out which big screen TV they would get me for my birthday. This fact may make you feel like your brains will explode — if I was on Medicaid, what business did my parents have buying me gifts? — but I was a kid and I wanted a big screen TV. Having Medicaid meant that our family wasn’t drowning in medical bills and they could afford birthday presents. But while they flipped through the catalog, the tube connected to my mask came undone.

My brother, who has the same disability, found me unconscious, blue, and with my eyes rolled into the back of my head. That is when the doctors finally put in the breathing tube. My pulmonologist was mad at my parents for not making the decision for me to have it put in earlier. They had it out in the hallway. Yet, giving me that autonomy allowed me to learn to take care of myself. I knew then that my decisions could mean the difference between life and death, so I needed to know my body better than anyone and make the right choices.

I spent two weeks in the hospital after the surgery and celebrated my 14th birthday in the playroom at Children’s Hospital. My dad couldn’t bring my birthday present. Instead, he found an Etch-a-Sketch and drew a big rectangle. I didn’t get it. He shook it and wrote “BIG SCREEN TV.”

Once again, Medicaid paid for the hospital stay and surgery. It paid for my new breathing machines — one for my bedside and another for my wheelchair. It paid for rechargeable batteries that lasted eight hours. It paid for the supplies necessary to avoid infections and respiratory issues. Most importantly, it paid for nurses to help take care of me.

Adjusting wasn’t easy, but I did. I was able to rely on Medicaid not just as a safety net, but as a springboard.

It was thanks to Medicaid that I was able to enroll in community college. It was thanks to Medicaid that I was able to transfer to a four-year college and live in the dorms with my peers, independent of my family. It was thanks to Medicaid that I was able to get my bachelor’s degree in political science from one of the best universities in the country. And it’s thanks to Medicaid that I’m starting law school in August.

I tell you this not to brag, but because I feel like I have to justify my life. I even hesitated to tell you that I got a TV for my 14th birthday. It’s been 13 years since then and I still feel guilty about it. That’s what’s so screwed up: I have internalized your propaganda. I feel like I have to convince you that I deserve to live when it shouldn’t matter if I have a degree or not.

People with disabilities deserve to live.

Too often, we use numbers and statistics to illustrate how inhumane your bill is. I am here to tell you that I am not a statistic. I have a name. I am Raul Carranza and I live in San Diego, California. And, should you vote for this bill, you are sentencing me to death.

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