Happy Nystagmus Awareness Day!

Nystagmus Awareness Day (2020)

Today is Nystagmus Awareness Day! Nystagmus is the eye condition that I was born with. If you have not heard of the condition know that it is a rare condition that affects, according to Nystagmus Network “1 in 1000 people have Nystagmus.”  Nystagmus is an eye condition where the eye constantly moves. This pattern can be in an a vertical, Horizontal, or circular fashion.  For me, I have circular Nystagmus.  According to the Nystagmus Network, there are two main types of Nystagmus. The first one is called Infantile Nystagmus or congenital. This is the type of Nystagmus I have. That means a person is born with it. The second type is called Acquired Nystagmus. This can affect people later in life and can have different causes or sometimes no known cause at all. Nystagmus can effect’s everyone’s life differently. It all depends on the type of Nystagmus and the severity of it.

As a young girl I had to use large print books to be able to read my schoolwork. I had a teacher of the visually impaired come in a few times a week to provide one on one support. As I got older, I found out I would never be able to drive. My large print books have been replaced by assistive technology. As a young teenager the adults around me did not know what the future had in store for me. I felt sad and I thought I had a bleak future. I thought that I was the only one who had Nystagmus. I had not met anyone else who had the condition. I had so many questions about my future. I had low confidence.  I also had a lack of peace because I did not know that there was support out there.

In 2011, I was searching through Facebook and I found the Nystagmus Network. I found out that I was not the only one who had this condition and I was not the only one who felt overwhelmed. I began to ask questions about how I could better live with Nystagmus. Now I have lots of friends, from all over the world, and I have a place where I can ask for advice and support.

I have hope too. I know that the Nystagmus Network and other medical professionals are working on finding better treatment and hopefully a cure one day.

Because of the support I have received I no longer feel like Nystagmus is a roadblock in my life. I feel at peace with the fact that I have this condition. I have learned that everyone who has Nystagmus has talents and that even though you may need to modify your career goal you can live out an amazing life. I am now working on building my career as a freelance journalist and an advocate for those who have Nystagmus.

The support I can get daily cannot be given without the help from the public.

Be sure to visit the Nystagmus Network’s site to learn more about Nystagmus and donate today.

Also, be sure to share this post to help spread awareness on this International and National Nystagmus Awareness Day. 😊

Please note: This post was not sponsored in anyway. I just love the Charity Nystagmus Network. 🙂

 

2020: More Courage, Self-control and Joy-January Edition

What can one say about January? It seemed to slowly drag by then the days and weeks would fly by. I have to say that this month has been full of lots of disappointments and a lot of lessons. First, my friend reported back that my hard drive that I sent off could not be recovered. I lost almost all of my photos, and most of my documents. I have to say that I have found the courage to continue to write despite this drawback. I have also found joy in the fact that my editor and my email had some of the documents that I really needed. When I look back at it all I didn’t really lost everything. I just have to accept the loss and move forward. For me as a writer this takes a lot of courage.

On top of that I finally got the answer that I have been waiting to hear from Vocational Rehabilitation. Before I explain the answer, I am going to give you all the details of what has been going on behind the scenes. In October during my monthly check in I mentioned that my laptop was running Windows 7 and that it was getting slow. Since in January Windows 7 would no longer be supported I wanted to find out what kind of technology assistance I would be getting.  I scheduled a meeting in November where my caseworker and I called several different companies to find out what our options were. Most of the companies agreed that my current software, ZoomText and Kurzweil, was outdated and it needed to be updated. We found out that my current laptop was probably not going to be able to hold all the software I would need and be able to run correctly. After this meeting my caseworker told me that she would ask a technology rehabilitation engineer to look at my current software and make a recommendation. On December 19th the engineer came and looked at my software and told me that he recommended a new laptop with Windows 10 and updated versions of office, ZoomText, and Kurzweil 3000. We went over my needs. He then went and spoke with my caseworker who said he had to file a report. After the holidays and a bunch of follow up questions I got an email from my caseworker with the report. The news was not what I wanted to hear. The engineer said that my current laptop just needs new ram and new software updates. I am very disappointed in this since I have concerns about my computer continuing to crash and cause me problems. I am currently waiting to hear back about some follow up questions before my case moves forward.  I have to say that I feel that I am lagging behind on my work. I am just doing the best that I can at the moment.

 

It took a lot of self-control for me not to get angry at this. I called my two best friends and told them what is going on. They both reminded me that I should have joy that I am getting the help that I need. They are right. Technology for people with low vision can be costly. Right now I am lucky to not have to pay for anything.

This month has really been a season of waiting on answers. All I know is I have to trust God with my life and remember to have courage, have self-control and find joy in all of the things that life has to offer.

2020: More Courage, Self-control, and Joy

In 2019, I worked on movement, patience, and positivity. While I was growing in those lessons God pointed out some other very important characteristics that I need to work on. Now in 2020 I’ve decided to bring these issues to light, examine them, and grow in them. My three pillars this year are: Courage, Self-Control, and Joy.

My first pillar is courage. For those of you who don’t know I often lack confidence which is a byproduct of being controlled by anxiety. I often worry about doing or saying the wrong thing and what other’s think of me. As a result, I have missed out on a lot of great opportunities. This year I have decided to build up my self-confidence which I believe starts with showing action by having courage to do things. For example, I have a phobia of going to the doctor because of previous bad experiences. When I was seventeen, for instance, I went to the Emergency Room with severe stomach and back pain. Initially, even thought I was a virgin, the doctor still believed that I was pregnant. After the pregnancy test came back negative, the doctor discovered the cause of my pain was from a kidney infection. Nevertheless, the doctor said, “I still think you’re a slut!” As a result, I have not trusted doctor very much since then.  Therefore, it’s time for me to muster some courage and make a doctor’s appointment.  In fact, the Bible commands us, “…Be strong and courageous!” (Joshua 1:9).

View this post on Instagram

Bring on 2020…

A post shared by Amanda Gene (@amandagenen) on

My second pillar is self-control. Self-control is one of the fruit of the spirit. (Galatians 5:23). For those of you who don’t know I have quite a temper. Last year, for example, my temper got the better of me when I threw my Iphone 8 on the floor and smashed the screen. This mistake will cost me $400 plus dollars to fix. Therefore, God showed me that I need to improve my self-control.   He relived to me, in his word, “A person without self-control is as defenseless as a city with broken-down walls” (Proverbs 25:28).  I am eager to learn to grow in this very important fruit of the spirit.

My last pillar is Joy. But my joy often gets robed because I tend to focus on my problems rather than their solutions. For example, last year I fell into a depression when my hard drive crashed, and I thought that all my work was lost. Then I found a spark of Joy! God gave me a potential solution when a friend offered to try and recover my data.  It is in the process of trying to be recovered as of this writing. God has shown me the recipe for Joyful living, in his word: “Always be Joyful. Keep on praying. No matter, what happens, always be thankful, for this is God’s will for you who belong to Christ Jesus” (1 Thessalonians 5:11).  I feel that if I find both earthly and spiritual joy, I will feel happier and more relaxed.

I pray that you guys will see me grow in these things, and that you will be able to benefit from me sharing my journey with you. What are some of your goals this year? Tell me down in the comments below.