Educating and inspiring parents and children who have Nystagmus
Author: Amanda Gene
Hi, welcome to my website. My name is Amanda Gene. I am a disability and mental health freelancer.
I would love to work with your company and I provide writing on a variety of topics on disability and mental health.
Feel free to contact me via email at: Amanda@amandagene.com
“I love you mom,” I said as I stood as a panicked sixteen-year-old standing in the living room. “I love you too, Amanda,” my mom said. Those were the last words that my mom said to me before she died from a sudden massive heart attack. The days and weeks to follow seemed to come in waves all in a blur. I had to work through my grief. It was a tough road, but one thing I have learned from all of it is I can enjoy and be thankful that I am able to look back at the sixteen years I had with my mother and smile. Days of fishing, dancing and cooking in the kitchen. These are the memories that I cherish the most.
It has been 15 years since my mother died, and in that time frame I have grown. My mother has missed seeing me go off to college, graduations, and many happy and sad days in-between. There are days when I wake up and I wish I could just sit down and have a cup of coffee and talk to my mom. I hope as I write this, she is looking down on me from heaven and she is smiling at the young woman I have become.
After my mother died my grandparents took over my care. They have fed, clothed, and provided treats for me. Even though my grandmother died in 2018, I am still thankful for all the help that she provided. Now it’s just my grandpa and I. He continues to provide for me while I work on my freelancing career. He has provided food, clothing, shelter and more. I am thankful that he helped me fight for the education I received at The University of West Florida. After college, my grandpa could have sent me on my way after continuously looking for employment. He hasn’t given up on me. I can’t thank him enough for helping me grow into the young woman I am today.
On the anniversary of my mother’s death I sit with my grief and I miss my mother. I also rejoice in the fact that she is with Jesus, and one day I will meet her again in Heaven. Sometimes I look back at all the things that my grandpa has provided for me and I can not express enough gratitude. Like in years past I will treat him to lunch. I am not sure yet where we will be dining, but I am sure it will be great.
Hi Everyone, today’s guest post is from Chelsea. I met her on Facebook. Please be sure to check out and follow her on social media.
What is your name (or blog/channel name)? My name is Chelsea.
Age? I’m 32 years old; I’m originally from Texas but have relocated to a new state, nearly two years ago now, as I needed a fresh start and a new environment that would allow me to thrive.
Who has inspired you for your blog or YouTube channel? : There isn’t just one person that’s inspired my writing–in fact, my own life experiences have inspired my writing. I’ve been writing for myself in a journal format since I was in elementary school because for me, doing so has always been an outlet. I was abused by numerous biological relatives for years, yet writing was the one thing I could always count on. Because when human beings would hurt me and otherwise let me down, writing has been there, as a faithful, constant friend. And the thing about writing, is that writing doesn’t abuse you; writing doesn’t invalidate your feelings; it welcomes you with open arms, 24/7, no matter what it is you are feeling, thinking or going through.
4. Besides writing or making YouTube videos what do you like to do in your spare time? Besides writing, some other things I love doing in my spare time are reading sci-fi/fantasy books, LGBTQ-themed books, books on atheism or self-help books. I also love listening to most kinds of music; though, right now, a few of my favorite artists/musicians to listen to are Zedd (who creates Electronic Dance Music or EDM for short) Kehlani who sings R&B and Billie Eilish who sings a mix of genres. While there are probably songs from every genre of music that I love, there are definitely particular music genres I’m not really a fan of as a whole; those are country, heavy metal, opera and classical. That being said, I also love being with my friends/other loved ones and learning how others express their creativity.
5. Name a bad habit that you have? A bad habit I have is biting my nails; I usually do this when I’m nervous, bored or really stressed out.
6. Name your best quality? My best quality of mine would be my brutal honesty; because people don’t ever have to worry about where they stand with me. They know that I give good advice/advice that I make sure to lead by example with. But mostly, I love my brutal honesty because it shows folks that I’m trustworthy and will always tell them the truth, even if the truth can be hard to hear.
7. If you could interview anyone living or dead who would that be and why? : If I could interview anyone dead or alive, I’d choose the Obama Family; I’d choose these folks because I love many of the things they stand for, and they seem very down-to-earth. It would be interesting to be able to pick their brains and to get to know them as the fellow human beings that they are.
8. What is your college major/minor? My current major in college is sociology. I chose this as my major because I’m passionate about helping people heal. I’m also a firm believer that if everyone in the world were in therapy, the world as a whole would be a much different place. In my younger days, one of the colleges I attended was Austin Community College.
9. Why did you choose the title of your blog or YouTube channel? : The tagline of my blog is: my life living with multiple disabilities/navigating through trauma. : I started blogging publicly a little over two years ago now. Someone who’d come across an article I’d written and liked it, was the one who’d suggested I start blogging publicly. This person got in contact with me and told me that they thought the things I have to say are valuable and given that this person was involved in a charity that was geared towards educating sighted people about how blind/visually impaired folks live/function independently, I knew that taking their advice would be wise. And as they say, the rest is history…or is that HERstory, since I’m a woman; hahahaha.
10. Where do you see yourself in five years? It’s near impossible for me to think about where I see myself in five years because my disabilities and chronic health conditions have changed my life in ways I never would’ve thought were possible. The main way in which these things have changed my life, is through causing me to slow down and listen to whatever my body is telling me at any given time. Like most people, I too allowed society to influence the way I viewed how my life should look to others. I forced myself to go to college as a young adult, simply because I didn’t think I had any other choices. But it’s only been within these last couple years that I’ve learned that taking care of myself is, and should be, my top priority. And so quite frankly, living with these chronic/life-threatening health conditions has helped me see that for me/my body, taking things an hour at a time or most times one day at a time, is the best way to operate. Because my body does not, and will not, meet what I think is an unrealistic and harmful standard, that society tries to force onto people, anyway. So if I’m here on this earth in five years, that in itself will be a gift.
12. What is the name/cause of your visual impairment (Or other disabilities that you may have)? : I was born with Retinopathy of Prematurity (ROP); I was born at 26 weeks and weighed two pounds, three ounces. I had to be given too much oxygen at birth, just to be kept alive…and that’s what ultimately made me become blind. I had some usable eyesight up until I was 18…but then I became totally blind. Just to clarify though, when I say I used to have usable eyesight, I don’t mean that I could see good enough not to use a white cane. What I do mean, is that I could see out of the corner of each eye, where my nose meets each eye. So I’d have to literally put things close to my eyes to somewhat see them. But honestly, it’s bittersweet for me to tell people that I used to have some eyesight because then they want a full explanation about what I could/couldn’t see…and that becomes so draining. So I’ve found it’s much easier for me to just say I’ve been totally blind for years…but had a bit of vision as a child. I find that that explanation is sufficient enough for the majority of folks. My Cerebral Palsy was also something I was born with, that was due to my bio mom’s drug/alcohol use while I was in her womb. I was also born with Hydrocephalus which was also due to my bio mom’s drug/alcohol use when I was in her womb.
13. How do your visual impairment (or other disabilities that you may have) effect you on a daily basis? My disabilities/chronic health conditions affect me on a daily basis by isolating me, for one thing. This past fall semester for example, I’d initially planned to go back to school, after having taken off in the summertime. But then it turned out that health issues came up in the fall that were shunt-related…and so I had to take off from school. And when I’m not able to go to school and feel like a productive member of society, that can be very isolating. But what truly helps me through dark times like this, is the fact that I use an iPhone and a Mac computer, both of which have speech output software built-in to them which speaks aloud what is visually on the computer’s or phone’s screen. And having access to these things makes my life much fuller and brighter than it would be without these things, that’s for sure. Because both my Mac as well as my iPhone, allow me to engage with the world through Facebook, Twitter and other forms of social media. Both of these devices literally give me the world, when I sometimes don’t feel like the world has me.
14. What do other people feel about your visual impairment (or other disability that you may have)? What others think about my disabilities/chronic illnesses varies from person-to-person. But to be honest, I don’t care what folks think, for the most part. I used to care deeply about how others saw me and I even felt at one time this deep need to be accepted by society. But to be honest, the more I live as my confident, unapologetic and authentic self, the more I’m truly accepted by others.
15. If you had to give one piece of advice to other about having a visual impairment (or other disability that you may have) what would that be? If I could give advice to others living with disabilities/chronic health conditions, I would first encourage them to be unapologetic about who they are. And then the advice I’d give them, would be to tell them to love on themselves more…and don’t pay anyone any mind who tries to tell you not to do you. Because ultimately, each individual is responsible for his or herself…and only each individual knows what would make him, her or them, happy.
16. Where can other people find you on social media? (Please list and provide the links)?
When I get anxious or depressed, I put on songs that are encouraging and empowering. Here are five suggestions from my personal playlist. I hope you like them.
One Republic-I Lived
I like this song because it reminds me to keep going and to enjoy life. Even though life is full of successes and pit falls its more important to keep going and to choose to keep going. That life is worth it.
Imagine Dragons-Whatever it takes
I love to play this song while I work on my writing. It reminds me to keep writing even when I don’t feel like it. It reminds me that when you work hard and you don’t let negative words or actions get in your way you can keep chasing your dreams.
Aly&AJ- I’m Walking on Sunshine
Okay, this song probably tells my age, but I don’t care. I love to turn this song up on full blast when I am in a sad mood. This song reminds me that life is good and that positive sunny days and events come again. This song also reminds me to count my blessings. Whenever there is a negative there is always a positive somewhere.
Orinoco Flow by Enya
I was first introduced to this song by a friend of mine when my grandma was battling Alzheimer’s disease. This song helped me work through my grief of losing my grandma. One thing that I was worried about was not being able to show my grandma that I would be okay even after her passing. This song reminded me not to give up on achieving that goal. Now I know my grandma is able to look down at me and smile with pride at all I have and will continue to achieve. This is one of the songs that I have on my bedtime playlist. I love this song because it reminds me to close my eyes and just dream about the world around me.
Love And The Outcome-You Got This
I recently found this song. I am currently going through some rough spots in my life, and I believe that God put this song in front of me for a reason. I love this song’s message. The message is simple. Remember to take some deep breaths, which I need to do more often, and have faith that God is going to take care of all things.
What are some of your favorite songs that you like to play when your stressed or upset? Tell me in the comments below.
Valentine’s Day doesn’t really mean a lot for me. That’s because I have not been in a serious relationship, and my parents didn’t really make a big deal out of the day. As I think back to all of the Valentine’s Days, I had with my parents one particular comes to mind. I had come home from school, and we had this tall entertainment center. I happened to look up and saw a NSYNC board game. “What’s that?” I asked as I pointed. “I told you she would find her gift,” my step-dad said. My mother sighed. “Just give it to her early.” she said. My step-dad reached up and got the game for me. I put my backpack down and bolted for my room.
I was so obsessed with the band. I had all of their CD’s, a few posters around my room, and I finally had the board game that I had been asking for. I quickly took off the lid. I looked at the many pieces and quickly tried to read the instructions on how to play the game. Come to find out you needed three or four players to play the game. This made my heart sink as I am an only child. So, I got down on the floor and started to play the game by myself.
The next day my parents gave me some candy. Even though I had found one of my gifts early I still enjoyed the game.
I had another gift from my step-dad. He knew that I loved my Tony Hawk Pro Skater video game. So, since I was getting so good at the game he went and he made me a custom park for me. I remember enjoying the game, and playing it for hours.
What has been one of your favorite Valentine’s Day gifts or memories? Tell me in the comments below.
I hope each and every one of you have a happy Valentine’s Day!
I am in several sight loss and Nystagmus support groups. One of those groups, called the Nystagmus Network helps support people who have Nystagmus and they also fund research. Each week they get people in the group talking by bringing up a topic related to the condition. Today I’m turning the tables! Here are my top ten questions for the Nystagmus scientists and Trustee’s.
Which is better cake or a biscuit?
Which is better coffee or tea?
Have you ever thought about finding out if Non-24 is linked to Nystagmus? I see so many posts about people having a hard time sleeping. I’m one of those people!
Which season is your favorite?
What does it take to become a medical scientist to study Nystagmus? I mean besides those really awesome white coats. 😊
If you had 1,000 pounds/dollars what would you do with it?
Which is better coke or Pepsi?
What is one piece of advice you would give to new parents whose child has Nystagmus?
Which animal is better dog or cat?
When do you have the most energy: Day or night?
If you like this blog post and want to see another post like this or have a vision related topic you would like me to cover please email me at: Amanda@amandagene.com
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.
Hi everyone, today’s guest post is from DJ Hey. I met her on Twitter. Be sure to check her social media accounts.
What is your name (or blog/channel name)? My name is Heather Nyblade, and I’m 31 years-old.
Who has inspired you the most in life? My family and friends have inspired and continue to motivate me to follow my dream and live the life I deserve to live.
Who has inspired you for your blog or YouTube channel? My vision teacher I had in high school, Martha Castigilla, inspired me to start my YouTube channel and suggested making a video about how people should and shouldn’t treat the blind.
Besides writing or making YouTube videos what do you like to do in your spare time? I love doing my trance music mix called “High Energy Tunes,” which can be heard once a month on laut.fm/liftedtrancemusicradio and my official SoundCloud page. I also love performing at clubs and venues, since my goal is to travel the world by performing at the big-name events.
Name your best quality? My best qualities are what the trance music community is all about, which is peace, love, unity, and respect (PLUR.)
If you could interview anyone living or dead who would it be and why? It’d be my favorite DJ, Ferry Corsten, from the Netherlands. Because he he inspired me to pursue my own career as a DJ, specifically at the same events he and other trance artists perform at. Such as Tomorrowland in Belgium, Electric Daisy Carnival (EDC) in Las Vegas, Dreamstate in Southern California, and Luminosity in the Netherlands. After meeting him in 2013 and enjoying his set at the Intervention Pool Party, I was instantly hooked.
What is your college major/minor? I have a high school diploma.
Why did you choose the title of your blog or YouTube Channel? The title of my YouTube channel is DJHeyOfficial because DJ Hey is my DJ name, and the official part is to let people know this is my real YouTube channel.
Where do you see yourself in five years? I want to see myself performing at trance music events all over California and out of state before getting booked over in Europe.
What is the name/cause of your visual impairment (or other disabilities that you may have)? I was born three months prematurely and was diagnosed with retinopathy of prematurity )ROP), which is what caused me to be totally blind.
How does your visual impairment (or other disabilities that you may have) effect you on a daily basis? I don’t look at my blindness in a negative way, mainly because of what I mentioned earlier about coming from a loving family.
What do other people feel about your visual impairment (or other disability that you may have)? I’ve had situations where people have given me the “Oh, I feel so sorry for you because you’re blind” comment or would automatically assume it must be really hard for me to do something, just because I can’t see. But everyone I’ve met through my shows and social media have been really impressed with what I can do. This is why I’m extremely thankful for them being there to love, support, and appreciate me for who I am. Because the trance community has been all about being there for each other as a family.
If you had to give one piece of advice to others about having a visual impairment (or other disability that you may have What would that be? Don’t let it stop them from doing what they love or living the life they want to live.
14. Where can other people find you on social media? (Please list and provide the links.)
For anyone who’d like to check out my socials and follow me, they can be found at linktr.ee/DJHeyOfficial.