Giving Back to Change the World
Jennifer Miller
What started as a “life event” turned into a “life journey” rather quickly. I have always been active but when I started college I found my passion for running. While running I started to notice my headphones were not working on the right side. I bought a few new pairs, and the same thing kept happening, I soon realized the headphones were not the problem.
Around the same time, I noticed I was having a hard time hearing people talk when they sat on my right side. While snowboarding on a trip to Colorado, I couldn’t make it down the mountain by myself because I kept falling over.
I had an MRI and was diagnosed with an acoustic neuroma. After much thought and discussion with my parents and boyfriend, we chose the surgery route (posterior auricular approach). I took a risk in hopes my facial nerve could be saved so I could continue with my career dreams of being a television reporter.
During surgery, the surgeons found the tumor was sharing blood supply with my right facial nerve. I awoke to find I had no movement in the right side of my face. I was weak and had no balance on the right side of my body either. My right eye couldn’t blink, my mouth could not close all the way. After a week, I had a follow up appointment worst - car ride ever. I was too weak and uncoordinated to walk on my own, so I was assisted by a wheel chair. I was told that due to my facial paralysis, the cornea in my right eye was drying up and they were going to have to stitch my eye shut for a few weeks. Once my eye was stitched shut, I felt as if I had hit rock bottom. I had no idea what to do, I was in so much pain and had such horrific headaches, I honestly had no idea how to bounce back.
About five weeks after surgery, I gathered enough energy to get up and walk down the street. I walked myself down the street with an eye patch and half-shaved head. I might have looked quite odd but I felt amazing. That was the first moment in my life I felt the appreciation of being able to walk; that day, I was reminded how lucky I was.
After about a year of physical therapy and seeing a headache care specialist, I finally could try yoga. It helped restore my balance. After about two years I started running again. With time I could run a 5k, then a 10k, and I am proud to say I ran my first half-marathon in December of 2011 and in November of 2017, I finally ran a marathon!
In May of 2017 I celebrated my nine-year ANniversary and I feel great! I am proud to say I am medicine free, a new mother to a beautiful little girl, work full-time, and can workout five days a week now. Although my dreams of being a reporter faded after losing movement in the right side of my face, I found a passion for health and wellness. I decided to go back to school and received a Master’s in Health Communication, graduating Summa Cum Laude in May of 2014.
I wanted to get more involved with others being diagnosed with ANs. I did some research and that is when I learned what Acoustic Neuroma Association was and did for people like me. I got on the ANA’s Facebook page, gave a snippet of my story and told people that if they would like to talk to private message me. I must say I have met some amazing people along the way through doing that one simple post. Last year a local nursing college contacted me to come and speak with their students and that was quite scary for me as I usually only talk to people that have received the diagnosis or their families. I must say that was one of my biggest accomplishments from this journey. Seeing a group of people who are getting ready to go out into the healthcare world, it was nice to give a patient view of things. That experience also sparked me to think what is next for me?
I contacted the Acoustic Neuroma Association to learn more about their local support groups. They did not have one in Southwest Missouri, so I applied to be a support group leader and thankfully, I was offered the volunteer position. Our group meets quarterly at the Springfield library, offering share sessions for patients and their families. We also arrange guest speakers to come in and share new acoustic neuroma treatment methods, as well as coping mechanisms. It is a great way to get those of us in the community together that might not have otherwise met.
As I approach my 10-year ANniversary, I could not be more ecstatic as to where God has placed me. AN is life changing for those affected by it, but along my journey, I remind myself of one of my favorite sayings: “Be the change you wish to see in the world.”
