A disease is defined by Merriam Webster as “a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms.” (Merriam Webster) I do not like this definition. This definition does not describe how a disease completely envelops your life. It can not begin to explain the hurt and terror it will cause. It does not describe the disease as the mean scary green monster I have pictured in my head so many times. I pictured it in kindergarten as my mother laid on the old red sofa begging for God to let her live. I saw it in middle school as I sat in a cold classroom with blinding fluorescent lighting waiting for my guidance counselor to give me an update on my mothers surgery. Again when I was in high school, when a doctor canceled an outpatient surgery which led to my mom having emergency surgery and a week long hospitalization. I saw it again when I got a phone call diagnosing me with the very disease that had terrorized my mothers life for years.
Growing up with a sick single mother is an experience I believe to be unique from any other. No one else could understand my need to care for her and advocate for her. No one in my classes could understand why I would want to miss class for her doctor’s appointments. It was just something I couldn’t explain, not because my friends were not smart enough to understand but because who wants to understand how truly broken our system is? Americans have so much pride about the nation they live in, it is hard to admit our failures. What I could not explain to my friends were careless doctors, the broken disability system that we constantly had to fight, the enormous hospital bills, and how deeply stressful it all was.
A typical dialysis center
The Americans with Disabilities Act protects all people on dialysis. I know this off the top of my head because when I was in high school and my mother was on dialysis it took her months to be considered disabled. My mom had to do hemodialysis at a clinic three days a week. Despite this fact it took over six months for her disability status to be confirmed and her to be covered by Medicaid and Medicare. During these six months, however, my mom’s treatments were racking up thousand dollar bills each week, so no insurance coverage was not an option. That is when I learned about COBRA. For my mom, COBRA costs $900 a month. She was a single mom who was now unable to work. If it were not for amazing charities like The American Kidney Foundation paying these bills for my mom, she would not be here today.
The thing that hurts the most about my moms illness is that it may have been preventable. If my mom could have afforded doctors appointments when I was younger her kidneys may have never failed. If someone had just referred her to a nephrologist earlier they would have educated her. If the doctors who delivered me and told my mom that she had lost function of one kidney had just followed up. If our healthcare system had just done their job. Over and over my mom was lost and ignored by professionals being paid thousands to do a job they apparently did not care about. Watching my mom suffer because of her kidney disease was one of the hardest things I have ever experienced, but watching her suffer because the system continuously failed her was the hardest.
There needs to be a change. In no world ever should someone not be able to access healthcare because they can not afford it. In no world ever should getting the healthcare you need to survive hurt your credit score. There are people online begging for money so they can go through chemo. This is not sustainable. I have spent countless hours reading, and listening about how our system is broken. The stress and pain I have felt motivated me to make a change and I hope one day I can do that.
A few months back I started showing symptoms of my moms kidney disease. I have known for a long time there was a chance I would inherit it. My mom was never technically diagnosed with a specific disease and I knew I had to figure it out. So, I turned to the one thing I felt I could always count on when I was stressed: research. I found a doctor at Wake Forest who researched the disease a doctor had once suggested we had. I joined the study and my DNA was tested. A few weeks after moving to college I got a phone call from Wake Forest. When the doctor told me he had diagnosed me I felt a rush of relief. All of these years of not knowing and feeling helpless were finally gone. This relief was quickly replaced with panic as he explained to me that there are less than ten families in the United States with this disease and there is no known cure. He explained to me there was a possible treatment and that he would refer me to a nephrologist to start it. I felt at that moment as if my world had been turned upside down. Everything I had imagined for my life could be totally gone.
I will not be another example of the system’s failure. I have the resources to go to my doctor regularly, and take my medications but I know there are other people out there in my situation who don’t. My biggest hope is that one day that will change. As a freshman in college I have a long journey ahead of me. My current goal is to get an education that will allow me to pursue this change. My dream is to be able to help people in similar situations to my mom and I. I want to be able to work with dialysis patients to make sure they are being taken care of and have all the resources they need to survive. I also want to be able to help foundations like the National Kidney Foundation who have helped so many patients in so many ways. I hope to be a public advocate for those who have no one else to advocate for them. While I am not exactly sure what my future holds for me I know that my experiences will push me towards these goals.
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