What I'm Thankful for in the Midst of My Rare Kidney Disease
I have a disease that is commonly referred to as focal segmental glomerulsclorosis (FSGS). It’s a kidney disease, a horrible one. In 2013 it changed my life forever. From December of that same year I would have no kidney function and would require frequent dialysis for the rest of my life. I’d never been in the hospital or even had a blood test. It’s strange how quickly a life can turn upside down.
You may think I’d be living in a deep depressive state. It’s true that for the past three years I’ve struggled with my mental health. I’m willing to admit that because for a long time, I struggled by myself and didn’t know how to talk to anybody about this strange, rare disease I had. I think when it’s a rare disease, you are thrown into an even deeper hole of people seemingly having no investment in researching your condition at the level they would with a more common disease, and that can be really sad.
Surprisingly, despite every bad thing about my circumstance, I am quite grateful. Here are the reasons why.
If it wasn’t for the fairly modern invention of peritoneal dialysis, I would not be alive today to write this. It astounds me that before the late 1980’s, it was a death sentence to have what has afflicted me for over three years now. I do hope that kidney medicine advances substantially, though, as this is the only option for me to once again have a healthy life. It will take the invention of some kind of artificial kidney that can be implanted into me like a kidney transplant is so that the biological impacts of scarring cannot affect the new organ. At the moment they are developing medicine more and more, and for this I am grateful. 3-D printed biologically grown kidneys are of no help to me. Though, I need an artificial or robotic technology that will do the job of a working kidney. In the future when this is finally possible, I will be forever grateful.
Family is something that will always be important to me. Especially because of how much I rely on them in daily life. I am able to achieve many things I probably would not be able to because of my family. Why would I not be grateful for them? As my family grows, so does the amount of kind people who I know genuinely care for me. Wherever I go and however successful I am while I live and thrive on this planet, I hope my family will always be there sticking by me like they always have done in the hardest times of my life.
There is nothing better than knowing exactly what you want to do in life. For me, this has, for a long time now, been writing. I once wanted to be a doctor, a fireman, an astronaut and a zoologist, so my career prospects were quite varied. Much like any job in life though, there has to be some iota of talent that presides inside a person for them to do well. It seems that I’ve always enjoyed writing, which gives me a certain special kind of confidence that makes me determined that I will become a great writer of amazing things. I have never been that big headed or sure of myself. This is why when I look at things I have written, it cheers me up to see that this is stuff I would want to read myself. It’s always good to be your own biggest fan, it improves your personal outlook of life substantially.
When I would sit in silence in a dark, cold hospital room on a hard bed poised upright, I needed hope. It was the most important thing I could muster up inside my confused mind to even comprehend what was going on in my life. Hope would allow me to begin to think of the future again on the darkest of days. When I was lying there in pain thinking about whether I should “end it,” there was hope.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741. Head here for a list of crisis centers around the world
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