Taking Control Of My Life

Posted by Ashley Somics on Mar 22nd 2018

My proudest moment is when I took control of my life so that kidney failure didn’t have the chance to. I decided to be the change while inspiring and empowering others to do the same.

A common phrase that people with chronic kidney disease hear is “but you don’t look sick.” It’s both a compliment (I guess) and also super frustrating, as if our illness isn’t valid because we are not lying in a hospital bed. For years this didn’t really bother me because I didn’t want to be known as the person who had an illness. I chose to keep that side of my story hidden from most of the people in my life. I was so afraid it would affect my ability to get hired as a teacher or even maintain a job. I was afraid of judgement and for people not seeing the real me but rather only thinking about my diagnosis of kidney failure due to Lupus.

That mentality changed after I was told by doctors I would need a second kidney transplant. I would also be starting dialysis seeing as my current transplant (donated by my mom in 1999) needed to be removed because of a cancerous mass that had formed due to anti-rejection medication. All of a sudden my life was spiraling out of control. Nobody was stepping up for me and soon I realized that if nobody knew I needed help, nobody would step forward to help.

It was on April 2, 2015 that I gained the courage to take control of my life. I created a Go Fund Me page to help share my need for a living kidney donor. After I shared it on Facebook I was blown away at the positive response. People shared and donated to my campaign and sent me well wishes. These acts of kindness and altruism not only lifted my spirits but gave me hope that everything was going to be OK.

Throughout my journey to finding a living donor, I received nothing but positivity and support. Going back on dialysis was one of the most difficult times in my life as I lost my freedom to be myself, to give to others, to be a teacher, friend, and loved one. I was a completely different person while on dialysis. As difficult as that time was though it was a huge motivator for me to GET LOUD and find myself a living kidney donor so I could get my life back.

After I got my new kidney, September 28, 2016, thanks to an amazing friend and the UCLA Paired Exchange Program, I knew I wanted to be the support that so many kidney patients needed. I saw a huge gap in the healthcare system and overall within society in terms of making progress with awareness and support. I decided to start a social movement that will hopefully soon be a nonprofit called Get Loud For Kidneys.

My mission is to inspire and empower others connected to kidney disease and donation to GET LOUD. I want kidney patients to share their struggles and need for a donor, or there success with a transplant and for donors so share why they decided to donate. I truly believe that awareness creates change and that spreading kindness can spark more compassion and altruism in this world. So that is my newfound passion and mission in life and I could not be happier or more proud of my story and the way it is unfolding.