Book Review: Life with Nystagmus: 10 Questions Parents Ask Me by Amanda Gene Harris

About the Book:

Title: Life with Nystagmus: 10 Questions Parents Ask Me
Author: Amanda Gene Harris
Page Length: Less than 50 pages
Format: I read this book on Kindle

My Thoughts

Amanda Gene Harris is a talented author who offers practical advice to parents navigating life with Nystagmus. Her book, Life with Nystagmus: 10 Questions Parents Ask Me, is a fantastic resource for parents, educators, children, and anyone seeking to understand this condition. Drawing from her personal experiences as an adult living with Nystagmus, Harris answers key questions and provides actionable tips that can help readers better understand and navigate the challenges associated with this visual impairment.

As someone who has Nystagmus, along with Glaucoma and Cornea issues, I found this book particularly insightful and relatable. It’s a resource I wish I had growing up and one I would recommend to any parent raising a child with Nystagmus or a similar condition. The book addresses a variety of topics, including educational accommodations, social development, and employment opportunities for adults with Nystagmus. What makes this book truly stand out is Harris’ practical, empathetic approach, which reflects her own journey and the lessons she’s learned along the way.

At less than fifty pages, this book is concise and easy to read in an afternoon. However, its impact lasts far longer, as it equips readers with a wealth of knowledge and encouragement. Whether you’re a parent of a child with Nystagmus or simply want to learn more about the condition, I highly recommend Life with Nystagmus: 10 Questions Parents Ask Me.

Interview with the Author

This book holds a special place in my heart because it was written by my friend and fellow visually impaired author, Amanda Gene Harris.

I’m always passionate about supporting and lifting up disabled authors, so I was thrilled when Amanda agreed to an interview about her book! Through our conversation, I gained even more appreciation for her dedication to educating others and sharing her experiences.

Rev. Rebecca: Can you tell us a bit about your personal journey and what inspired you to write a book specifically addressing questions about Nystagmus?

Amanda Gene Harris: My journey was a long one. It started with my mom, who realized when I was very young that I had problems seeing. Since Kindergarten, my mom had to fight the school system to get me large print. It was not until I was in fourth grade that the teachers at my elementary school started to realize that I had trouble seeing and had me evaluated by the teachers of the visually impaired. In fifth grade was when I started receiving large print on light blue paper. In seventh grade my family and I moved to Florida and that is when my large print was taken away and I was given low vision aids to help me see in the classroom. This method of improving my vision continued until I was out of high school. In college I was able to choose my own accommodations and work with the disability services to help me have access to the materials in the classroom.

I decided to write my book because I saw so many parents asking questions about Nystagmus on the Facebook support pages.  I am active on those pages too and many parents came to me asking for advice on how to help their children. This gave me the idea to write a blog post about those questions. However, one day I was talking about the blog with a friend, and he suggested authoring a book. So, I took the idea, and I started writing.

Nystagmus is a condition that many people may not be familiar with. Could you give us a brief overview of what Nystagmus is and its impact on your life?

Nystagmus is an eye condition where the eyes move continuously. For me it goes around in a circle. Some people’s eyes go side to side or up and down. Sometimes there can be a combination of these patterns. Many people who have this condition use accommodations because Nystagmus causes them to have problems seeing.

 For me, the biggest hurdle is not driving. I do not let that stop my blind husband and I from living life. We take the disability bus, Uber or sometimes get rides from family or a good friend of ours. I use a built-in screen magnifier to see the computer.

Rebecca: What do you think are the most common misconceptions or stereotypes about Nystagmus, and how do you address these in your book?

Amanda: Big sigh, that people with Nystagmus cannot work. I have seen so many parents talk about their own worries about having their children get a job when they are older. I struggled to find a job in my own community. So, the best solution, for me, was to do self-employment. I wrote quite a long chapter in my book about the various kinds of discrimination people have faced when it comes to having Nystagmus and how people of society respond. The best way to combat this is to educate others on Nystagmus and to have a positive attitude.

Rebecca: Your book aims to provide practical tips for individuals with Nystagmus. Could you share a couple of these tips that have personally helped you on your journey?

Amanda: The biggest tip I could offer is to have open communication with your child. Let them know about their condition early on and teach them how to have a positive attitude about living with it.

I found peace when I let go of the negative people in my life. Growing up I had several people not understand what it is like to live with Nystagmus. They would often say that I was lazy and that I was using it as an excuse when in fact I was just learning how to accommodate myself. I had to let those people go and live my life how I wanted it. I had to learn to find the best accommodation(s) for myself, especially with technology and how fast it is changing. One example is how when I was younger, I was using ZoomText. Now I just use the built in screen magnifier that comes with my laptop.

Rebecca: Nystagmus can sometimes lead to feelings of isolation or self-doubt. What advice do you have for individuals with Nystagmus who might be struggling with their self-esteem or confidence?

Building your self-esteem and confidence takes time so do not beat yourself up over having a setback. Set small goals, achieve them, and move on to bigger goals.

 A good example of this is I lost my first finished copy of my book, back in 2018, all because my hard drive, Henery, died of heart failure. As a writer, I had to grieve the loss of my hard drive, pick up the only print copy I had of my book, which was quite an older version, and get back to editing and writing. Since publishing my book my next goal is writing my memoir.

The educational needs of students with Nystagmus are a significant aspect of your book. Could you elaborate on some strategies or advice you offer for parents and educators to support these students effectively?

Parents, please hear me out. Have a positive attitude to help your children navigate their own journey with Nystagmus. Do not baby them either, it will only stunt their growth. Instead teach them how to have a strong voice to advocate for themselves. Remember that Nystagmus can be lived with and with a positive attitude and your guiding hand your child can have a great life.

Rebecca: Lastly, what message or key takeaway do you want readers to carry with them after reading “Life with Nystagmus: 10 Questions Parents Ask Me”?

Amanda: That Nystagmus can be lived with. It is not as bad as people say. There are a lot of worst conditions and illnesses out there. Butterflies remember to stay positive and fly high. 😊

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