Interview with Chelsea (Guest Post #22)

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.

  1. What is your name (or blog/channel name)? My name is Chelsea.
  2. 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.
  3. 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.

Chelsea
Photo of Chelsea. Photo provided by Chelsea. 

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)?

My website can be found at:  http://chelseamunoz.com

The Facebook page for my blog can be found at:  https://www.facebook.com/CJMBlog/

The Twitter page for my blog can be found at: https://twitter.com/cjm042715

 

 

 

Interview with DJ Hey (Guest Post #21)

Hi everyone, today’s guest post is from DJ Hey. I met her on Twitter. Be sure to check her social media accounts.

  1. What is your name (or blog/channel name)? My name is Heather Nyblade, and I’m 31 years-old.
  2. 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.
  3. 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.
  4. 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.
  5. Name your best quality? My best qualities are what the trance music community is all about, which is peace, love, unity, and respect (PLUR.)
  6. 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.
  7. What is your college major/minor? I have a high school diploma.
  8. 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.
  9. 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.
  10. 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.
  11.  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.
  12. 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.
  13. 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.
DJ Hey
Photo of DJ Hey. Photo credit goes to DJ Hey.

 

 

Interview with Matt Harris (Guest Post #20) And a GIVEAWAY!

Matt is a good friend of mine. He writes amazing poetry. Be sure to enter the giveaway and follow Matt on social media. 🙂

Let’s start with the basics…

  1. What is your name? My name is Matt Harris, and I’m a fifty-nine-year-old poet—and author of Seeing Through Blindness. I live just outside of Baltimore, MD. Before we begin, I would like first to say hello to your readers and to thank you, Amanda, for giving me this opportunity to share a little bit about myself and my work.

 

  1. What is your college major/Minor? I am currently enrolled as an English Major, with a specialization in Creative Writing, at the University of Baltimore. Several years ago, my marriage broke up; and a year later, I was diagnosed with Usher Syndrome (US). US is a genetic disease that robs a person of both eyesight and hearing. At that time, as a former drug and alcohol abuser, who had been sober for 20 years, I feared that I might fall back into that lifestyle again, because I so desperately wanted to numb the pain from my marital breakup and Usher Syndrome diagnosis. The words Go buy a six-pack, one won’t hurt kept echoing through my mind. But I knew that was a lie. I knew from my past substance abuse that this old saying applied to me: one drink was too many and ten were not enough. So, I pushed those lies aside and decided to lean on my faith in Jesus. He has kept me sober and has given me the strength and comfort that I needed to cope with the pain. And shortly thereafter, I enrolled in the University of Baltimore at age 55, with a 99% vision loss and a 60% hearing loss. If everything goes as expected, I will be graduating in the spring of 2020. I plan to write a memoir based on this experience. I hope it will make a nice bookend to my poetic memoir, Seeing Through Blindness, which tells about my experiences with blindness and drugs as a teenager and young adult.

Let’s talk about writing/YouTube/Blogs…

  1. Who has inspired you the most in life and your blogging and or YouTube channel? My mother, who passed away last year, was a great inspiration for me. She grew up in Baltimore with 6 brothers and a sister. And although they lived in poverty, my mom chose to work hard and fight her way out of her circumstances. What inspired me initially about blogging, however, was that I wanted to try to get out information about my book—and to share its message of hope. I also wanted to blog about other poets’, or writers’, work as well. I think it’s important for writers to support one another, as you do, Amanda. But my blog turned into a rather eclectic assortment of topics—everything from an article about a blind man from Scripture named Bartimaeus to a friend whose rock band once opened for Led Zeppelin in Baltimore. But since starting college, I have largely neglected my blog because my studies have taken top priority. I hope to focus more on blogging after I graduate. As for YouTube, other than a few poetry recitations, I haven’t utilized my channel to its fullest potential. But after having watched some of your YouTube videos, Amanda, you have inspired me to take another look at how I could use my channel to help people and, at the same time, support other writers and promote my own work.
  2. Besides writing or making YouTube videos, what do you like to do in your spare time? I love to read. I’m a HUGE Stephan King fan, currently reading Doctor Sleep. I also love reading Scripture. In addition to reading, I like walking, going to the beach, attending plays, poetry readings, going to the movies, engaging in good conversations, and eating at restaurants. During football season, I love listening to Baltimore Ravens’ games. The team was named after one of my favorite poems: “The Raven,” by Edgar Allan Poe.
  3. What is the title of your blog or YouTube channel? My blog, along with information about my book, can be found at my website: seeingthroughblindness.com.
  4. Have you ever written a book? If so tell me about it? My latest book, as I mentioned earlier, is called Seeing Through Blindness. It tells about my battles with visual impairment, drugs, and God during my teenage years and young adult life. It speaks not only to the issues of people with disabilities but also to issues concerning addiction and marginalization in society. Since I’m a poet, I wrote the book as a narrative poem in a free-verse style. I like this style because it allowed me to use a ton of imagery to tell my story by showing it. The poetic structure also enabled me to say what needed to be said in 100 pages—instead of probably 300 pages if I had written it in prose. A show called This Is Baltimore, Too produced a documentary about my book, which aired on a local cable television channel. Here’s a link to the show if any of your readers would like to take a look at it. This Is Baltimore, Too — Seeing Through Blindness with Matt Harris
  5. Where can people buy your books?

My book is available on Amazon—in both paperback and Kindle versions.

Matt
Photo of Matt Harris.

Let’s get to know more about you and your disability…

  1. Name a bad habit that you have? I have a tendency to rock back and forth sometimes when I’m standing up. I developed this habit when my oldest daughter was a baby. Sometimes the only way for her to fall asleep was for me to stand up and rock back and forth with her in my arms.
  2. Name your best quality? I’m a good listener.
  3. If you could interview anyone living or dead who would it be and why? I would love to interview John Milton, the British poet who wrote the epic poem Paradise Lost. Milton was blind when he wrote this masterpiece in the 1600s. I would ask him how he, as a blind person, wrote and edited this voluminous piece using only seventeenth-century technology.
  4. Where do you see yourself in five years? I would hope to have published my next memoir and several more books of poetry by then. I would also hope to be traveling the country to recite my poetry at various venues.
  5. What is the name/cause of your visual impairment (or other disability that you may have)? As I mentioned earlier, I have a genetic disease called Usher Syndrome (US), which causes both blindness and deafness. At age 21, I was first diagnosed with a genetic eye disease called Retinitis Pigmentosa (RP). RP causes severe visual impairment and can lead to total blindness. At the time of my RP diagnosis, I was declared legally blind and could still hear perfectly. By age 45, I started to experience hearing loss. About 10 years later, after my hearing further deteriorated, and since RP and US are genetically related, I was tested for US, and the results came back positive.
  6. How does your visual impairment (or other disability that you may have) effect you on a daily basis? Having a dual sensory loss can be challenging. It often feels like I’m in a foreign country trying to decipher language and the lay of the land. It sometimes feels as if I’m fading away. But, fortunately, the technologies available today help me maneuver through some of the foreign territory that I face each day. Also, as I mentioned earlier, my faith in Jesus helps to anchor me in peace while I’m trying to figure out how to navigate this new world in which I find myself.
  7. What do other people feel about your visual impairment (or other disability that you may have)? I feel that my condition is very misunderstood and that people have a lot of misconceptions about it. For example, there is a misconception that blind people have bionic hearing. This myth trips me up at times when people think that about me, not realizing that I actually have a profound hearing loss. This misconception can create misunderstandings when people speak to me and then misinterpret my lack of response as rudeness. I try to dispel these misconceptions whenever I can. On the other hand, some people, even though they still might think that we have superior hearing, still insist on speaking loudly to us. Although this irritates many blind people, it actually helps me with my hearing loss. All in all, however, I do believe that for the most part people in general mean well. I think that the people I meet in my everyday travels just simply do not know how to respond to me because they haven’t been around people in my situation. These are just a few of the many obstacles I face each day. I’ll save the rest for my future memoir.
  8. 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 it be? I would say to try and develop a good sense of humor about visual impairment and smile a lot and try to put people at ease. Also, if you are losing your sight gradually, I think it’s very important to be aware of–and grieve–the emotional and psychological trauma that can occur in each stage of sight loss. These continual losses over a course of a lifetime can be harmful if not dealt with properly.
  9. Where can other people find you on Social media (Please list and provide links)

I mostly hang out on Facebook. Here’s a link to my Home Page: Matt’s Facebook page

Let’s talk about the holidays…

  1. What holidays do you celebrate during the winter season?

I celebrate Christmas and New Year’s.

  1. What is one of your favorite memories of the holiday? I liked when my daughters opened their presents on Christmas Day when they were little. They would get so excited. I also enjoyed the warmth and the scent of seasoned oak logs that crackled in our wood stove that we always burned on Christmas Day. These were very fond memories.
  2. Best gift you ever received?

The Gift of Eternal life through Jesus Christ my Lord!

  1. What does the holidays mean to you?

In recent years, the holidays have become a time of reflection for me. But, of course, they also represent a time of giving. And with that thought in mind, I would like to conclude by giving a free copy of my book, Seeing Through Blindness, to the first five readers who comment on your blog using a quotation from your article. (Unfortunately, I can only send copies in the United States.) Just PM the location to Amanda to where you would like me to send the book.* Thanks again, Amanda, for inviting me to your blog. Happy Holidays!

_____________________________________________

*Amanda’s email is: Amanda@amandagene.com

If you would like to be interviewed on my blog please email me at: Amanda@amandagene.com

Interview with Charli (Guest interview #19)

Charli and I met on Twitter, and we are now good friends. Be sure to check her out on social media.  🙂

  1. What is your name? Charli Dee, but everyone just calls me Charli!
  2. Who has inspired you the most in life and your blogging and or YouTube channel? My family!  My blog is all about sharing my experiences to inspire others. Those who are familiar with my blog might notice that I mention my family quite often in my posts, and the reason for that is my experiences with them are often my inspiration!
  3. Besides writing or making YouTube videos, what do you like to do in your spare time? I love spending time with family! We love watching movies and tv shows together! It’s always so much fun! Some activities are just more fun when you are doing them with others! I also love reading. It’s one of my go to activities when I want alone time. It’s so relaxing to me.

4. Name a bad habit that you have? I can be pretty stubborn, and tend to learn things the hard way!

5. Name your best quality? I’d like to think I’m caring and compassionate. I tend to let others be the judge of this though.

6. If you could interview anyone living or dead who would it be and why? Oh this is a tricky one! I’ve been asked this before, and my answer always changes because there are a number of people I would like to meet! If I had to pick one though, it would probably be Mariah Carey. I’ve been a fan of hers since I was a little girl, so it would be great to meet her!

7. What is the title of your blog or YouTube channel? The name of my Blog is Life With Charli.

8. When and why did you start your blog or YouTube channel? I started my blog in March of 2019. I’ve always loved writing, and had been considering starting a blog for a long time before I finally set one up. I just never had the time. I finally made time in 2019! I wanted to use my love of writing to help inspire others, and that is the focus of my blog!

9. Where do you see yourself in five years? I would like to think that, over the next five years, my blog will have really grown into a very successful one. I hope to have a number of collaborations under my belt by then with other bloggers and companies. So far my blog has been getting a lot of great feedback, so I’m very excited to keep the momentum going and seeing what the future holds.

10. What is the name/cause of your visual impairment (or other disability that you may have)? I have a genetic disorder called Turner Syndrome. It is  when a girl is born with one of her X chromosomes fully or partially missing (boys generally have an X and a Y chromosome, while girls generally have two X chromosomes. I’m sure most people know this already though). The condition can lead to a lot of different complications, including learning disability.

11. How does your visual impairment (or other disability that you may have) effect you on a daily basis? The type of learning disability I have affects my processing speed. I usually take a long time to complete tasks that would take others just a few minutes. I often need help from others, or for others to understand that I might take a while to finish whatever assignments are asked of me.

12. What do other people feel about your visual impairment (or other disability that you may have)? People usually believe that I don’t have a disability at all, because my disability is invisible. It’s not very easy to tell that I’m a person with a disability when first meeting me. However, after getting to know me, the signs are there. Since people usually assume that I don’t have a disability, proving that I do in order to get the help I sometimes need is often very difficult.

13. 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 it be? I have had so much doubt placed on my disability status that sometimes I start to have doubts myself. However, in the end, I know myself and my limitations enough to recognize that my struggles are very real. To those who also have invisible disabilities, I would say your disability is valid. Your struggles are valid. Don’t doubt yourself, and advocate for yourself until someone listens.

14. Where can other people find you on Social media (Please list and provide links) I can be found on Twitter, Facebook, Instagram, Pinterest, and Bloglovin. Feel free to reach out to me on all or some of these platforms and say hello! Links to my social media pages are below:

Twitter: https://mobile.twitter.com/charlidee_1

Facebook: https://m.facebook.com/charlidee1/

Instagram: https://www.instagram.com/charlidee_1/

Pinterest: https://www.pinterest.com/charlidee1/

Bloglovin: https://www.bloglovin.com/@charlidee8

 

Interview with Alex (Guest Blog Post #17)

This guest post comes from my friend Alex on Twitter. She has an amazing blog and is active on Twitter. Be sure to check out her content. 🙂

  1. What is your name? Hi, my name is Alex.
  2. Who has inspired you the most in life and your blogging and or YouTube channel?  No one particularly inspired me to start blogging, I just started so I could write about what I’m passionate about or what I’m thinking.
  3. Besides writing or making YouTube videos, what do you like to do in your spare time? I love to do photography. I also love to go on adventures with family and friends.
  4. Name a bad habit that you have? Procrastination is a bad habit I haven’t been able to break yet.
  5. Name your best quality? My best quality would probably have to be compassion, I guess.
  6. If you could interview anyone living or dead who would that be and why? If would love to interview my favorite YouTuber Molly Burke. I find her channel inspirational and I love that she talks about the good sides and the bad of living with disabilities.
  7. What is your college major/minor? I’m majoring in Psychology
  8. What is the title of your blog or YouTube channel, and when did you start blogging? The title of my blog is ‘A. P. Livolsi’s Blog’, and I started my blog a few months ago.
  9. What is the name/cause of your visual impairment (or other disability that you may have)? I was born legally blind and I have other physical disabilities.
  10. How does your visual impairment (or other disability that you have) effect you on a daily basis?  Honestly, when people ask me how my disability affects day to day activities I am not quite sure how to answer. I just do what able-bodied people do. Get up, eat, get ready for the day, go to school, and do homework. I use a White Cane as a mobility device to help me get around. If I can’t see something or I need directions I just ask. I feel like a normal person, despite having disabilities.
  11. How do other people feel about your visual impairment (or other disability that you may have)? Family members and close friends really don’t care about my disabilities. It’s just a part of who I am. Occasionally someone at school or out when I’m walking will stop to ask respectful questions about my vision. The thing that annoys me is when people ask questions and don’t bother to listen to my answers. They just pity me for being legally blind. I don’t like being pitted because of it. I love myself the way I am and I wouldn’t change it.
  12. If you had to give one piece of advice to others about having a visual impairment (or other disability) what would that be? My advice to a person who, not just have disabilities, but are dealing with any issue that is not easily solved is to keep going. I see life like a book. One chapter may really suck, but the new chapter might be ten times better. You never know what can happen.
  13. Where can other people find you on social media? (please list and provide links):People can find me via Twitter @alexpl20me  and Via Instagram alex_blindphotographer    Alex’s  blog https://aplivolsiblogonline.wordpress.com

If If you would like to be interviewed as a guest on my blog feel free to email me at: Amanda@amandagene.com

Interview with Northwick the bear who has Nystagmus (Guest Blog Post #16)

Hi Northwick,

My name is Amanda. I live in The United States in a state called Florida. I like you and your friend, Frank, who you live with, I also have wobbly eyes due to Nystagmus.

For those of you who have not heard of Northwick, he is a friendly bear who lives with a family and a boy named Frank, and together they navigate the world with Nystagmus. The author who writes these stories is named John Sanders.
Thank you so much for taking the time to be interviewed by me.

1. Tell me a little bit about yourself? – Well, first of all, thank you for inviting me to appear on your blog. As you say, I’m a bear who has Nystagmus which is something a lot of people may not have heard of. Basically, Nystagmus means my eyes flicker from side to side so I don’t see very well and glasses don’t fix it. As well as not being able to see very far, I need more time to see, how much I can see changes throughout the day, sometimes everything around me looks like it’s moving and I have to turn my head to look straight ahead. My flickering eyes use up a lot of energy, so I have a big appetite. That’s what I think anyway.
2. What is the hardest thing for you and Frank to see? (For me, it was hard seeing balls in games like soccer, and being able to see my school books and worksheets) – Yes, like you say Amanda! Things that move fast like balls in games, Frank’s friends running around and it’s really annoying when people say, “look at that bird up there!” Usually I can’t see birds or planes. …
3. What is your favorite thing to see? – Grass and trees and flowers and the sea and mountains and parks. I may not see these things in as much detail as people with ordinary eyes, but I like being in the countryside and drinking in the thousand shades of green, the smells of sea and rain and plants, the sound of burbling streams, the feel of leaves and rocks and wood and water.
4. What is your favorite kind of snack to eat? – Easy question. Cakes! Especially chocolate cakes.
5. How is Frank? – Like me, Frank has ups and downs, often because of Nystagmus. But we’re both happier now that we can talk to each about seeing the world differently from most other people.
6. What is your favorite subject in school? – French. Some people say learning another language is hard. But I think they’re wrong. I listen carefully and you don’t always have to read, so that makes it easier for me than subjects like sums or geography. J’aime bien parler français!
7. Do you ever feel sad about Nystagmus? – Oh yes. Before I met Frank I thought I was the only Bear / Person in the world with Nystagmus. Now I know I’m not alone and that helps a lot. We talk a lot about what we see or don’t see and that helps both Frank and me.
8. How does Amy the Orthoptist, who you see at the eye hospital, help you and Frank see? (Dr. Douglas Reynold helps me see better. He gives me new glasses.) – Amy makes sure we have the right glasses too. She also explains things to us. Like that glasses don’t fix Nystagmus, but they help with some of the other ordinary things that are wrong with our eyes. Amy makes us feel more confident. We know we can ask her questions. Sometimes we bring questions to her that children in Frank’s school have asked him and she can give us answers.
9. What has been the funniest Halloween costume you and Frank have worn for Halloween? – Pirates! Frank had a parrot (not a real one!) on his shoulder. We both had eye patches too. That was the best part. The funny thing was that, because of the eye patches, people were more helpful than usual because they realized we couldn’t see so much.
10. If you and Frank could give any advice to children with Nystagmus what would it be? – Don’t feel sad. Find out all you can about Nystagmus and talk to other people about it. Most people are interested. And remember that some very famous people have Nystagmus, so it doesn’t stop you from being happy and successful.

 

Interview with John Sanders (Guest Blog Post #15)

Hi Everyone,

Today’s guest post is from author John Sanders. He write on all different kinds of topics including the eye condition, Nystagmus. Thank you John for being a guest. Please be sure to check out John’s social media links and his books and posts.

  1. Tell me a bit about yourself? – Born in the UK in the late 1950s, I moved around a lot as a child which was an education in itself. I worked as a translator, journalist and manager of the Nystagmus Network. Now I live in Wales and am fortunate enough not to have to do paid work anymore. That said, I still give the occasional talk about Nystagmus and volunteer with several charities. I also try to grow vegetables and fruit on an allotment which means struggling against slugs, pigeons, weeds and weather.
  2. What made you want to choose a career in journalism or writing? – No great plan. It was mostly by accident. My mum saw a job ad which didn’t involve driving. One thing led to another and I became a translator. Eventually that opened up an opportunity to become a journalist where the pay was better and the work more interesting. I missed my colleagues from translating though.
  3. What has been one of the hardest pieces you have written? – Not so much written, but the Dunblane school massacre in Scotland in 1996. That day I was sub-editing for an online news agency as the story unfolded. That meant I was the person checking the copy and pressing the button and sending the story out to screens around the world piece-meal as it happened. Initially all we had were reports of an incident at a school in Scotland. As the minutes and hours ticked by, it became apparent that children were dying and it wasn’t accidental. That was a horrible day. The British Government changed our gun laws following the Dunblane massacre. We’ve not had an event in a school like that here since.
  4. What made you want to write the Northwick stories? – Through fiction and drama you can often reach a larger audience – and have a greater impact – than simply trotting out facts and producing information sheets (although these have their place). Opinion-changing films about illness and disability that spring to mind are “My Left Foot”, “Rain Man”, “The Elephant Man” and “Children of a Lesser God”. One year I had to write up the Nystagmus Network annual open day for the charity’s newsletter. I was fed up (as a journalist) of reading dreary reports about meetings and events. So from almost nowhere sprang the idea of taking a humorous look at the open day through the eyes of the bear we’d raffled to raise money. Some people liked the story (others didn’t), but there was enough support for me to carry on writing about the world from Northwick’s flickering perspective.
  5. What has been the most challenging part of having Nystagmus? –What has probably frustrated me most is how hard it is to learn about how nystagmus affects us. And I’m sorry if this upsets anyone, but after years of thinking about this issue I’ve concluded that – based on the evidence available — much of the blame lies with the medical profession. I know some wonderful people in the medical world who are exceptions to this rule. But so many people’s lives would be so much easier and less stressful if the world of ophthalmology in particular changed the way it communicates to patients who have nystagmus. And, from talking to other people, this applies to other eye conditions too. Instead of simply complaining, I’m one of a small group of people developing a Nystagmus Care Pathway (see https://www.bioj-online.com/articles/10.22599/bioj.126/) which we hope hospital eye departments will adopt one day.
  6. If you could give any piece of advice to a beginning freelance writer what would it be? – A few things: Read good writers. Write short sentences. Be wary of how you use adjectives. And try to write something every day.
  7. What was one of the hardest things that you struggled with in school? – Sport obviously (because of dodgy sight), seeing the board, having to take part in activities I couldn’t see, glare from windows. But also the dreary uniformity — which contributed to making life harder for anyone who didn’t quite fit the norm.
  8. Has Nystagmus impacted your career choice? – I suppose so, but I think most of us are limited one way or another: for instance where we are born, who our parents are, where we live, the subjects we choose to study and to drop early on in school. I was lucky to find work I could do and enjoyed (most of the time anyway).
  9. Has Nystagmus influenced you as a writer (as in how you actually get the writing done, etc)? – Possibly in more ways than I realize. If you’re vision impaired and going along to news conferences you have to develop strategies to get hold of information other people can see and take for granted. On a positive note, not seeing very well has made me more aware of other senses and therefore not limiting myself to describing the world purely in visual terms when I write. Nystagmus was one of the factors that prompted me to go freelance and work from home, mostly by phone and email. It’s so much easier than working in an open plan office (crazy environment for writing anyway) where people generally forget you don’t see the way they do.

Let’s have some fun with these last few questions!

  1. Sweets (which is the British word for candy) or Biscuits (which is the British word for cookies)? – Dark chocolate (candy).
  2. Tea or coffee? – Both.
  3. Bed made or unmade? – Not something I ever think about!
  4. Favorite author? – I’m impressed by people who can choose favourites (English spelling). I’ve read a lot of books by very different authors and know that my tastes have changed and continue to change.
  5. Favorite Food? – See my answer on books. Maybe I’m just indecisive?

Please list your links where people can find your work or if you want how people can reach you:

http://www.northwickbear.com/index.html

https://cvisociety.org.uk/news.php?cat_id=143

http://www.wcb-ccd.org.uk/roundup.php

http://dsq-sds.org/article/view/858/1033

If you would like to be featured on my website feel free to contact me at: amanda@amandagene.com