October Interviews: Elaine from Pennsylvania

Our next interviewee is Elaine Mara, age 28. She lives in Pennsylvania and works with disabled individuals at the high school level, preparing them for the transition to college or work. She enjoys public speaking, disability awareness, guide dog lifestyle awareness,  creating and delivering dynamic presentations, and composing music for piano.

How would you describe your vision loss? Is it congenital or has it developed recently?

Without getting too technical, here’s the simplest way to understand it: I was born with
underdeveloped optic nerves and a host of other diagnoses. Growing up, my vision was pretty stable, though I needed large print to read and I tripped over my own two feet all the time. As an adult, I had noticed that my periphery on my right side was closing in and so began four long years of tests, two brain surgeries, and many follow-ups. Today, I have 20/50 vision in my left eye; 20/70 vision in my right eye; 20/50 vision with both eyes open (all on a good day) but I have a visual field of around 10 degrees in my right eye and somewhere around 20 degrees in my left eye. I have nystagmus, an eye movement disorder, that makes focusing very difficult but I’ve worked hard over the years to learn to live with all of this!

Do you use a cane, guide dog, or other mobility aid to get around? Why have you chosen this aid?

Most currently, I am using a cane to get around because my first guide dog, who I trained with back in 2014, decided to retire early. Before I got him, I was an avid cane traveler but I found my confidence dwindling as my eyesight was changing; that’s where Guiding Eyes for the Blind (GEB) came into my life and changed it drastically. I am currently waiting to go back into class at GEB to train with a successor dog, hopefully early next year. I much prefer the dog to the cane.

With the cane, I’m always bumping into things and running up the backs of people’s feet when I’m walking much faster than they are. With a dog, we avoid the obstacles and the travel is much more fluid and friendly, too. I have met so many wonderful and unique people just doing my day-to-day activities when I’m with my dog than when I’m with the cane. People, kids especially, have a great love for the fur at the end of the harness and they marvel at what he can do for someone like me, so they’re more apt to approach me and socialize with me than when I’m accompanied by a stick with no personality. Who want’s to cuddle a cane? Not I!

What is the most consistent challenge or frustration you experience with your low vision? How do you handle it?

For me, low vision means I’m constantly in limbo. Sometimes I can see and do a task flawlessly with the vision I have and other times, I’m lucky I don’t make a mess. Personally, I laugh it off and let it go because I know what’s really going on. Some days, my vision rocks and others, it decides it doesn’t want to get out of bed in the morning but that’s all internal; it’s not like everyone else can see it, so some days, it does get tiring having to explain the same concept to ten different people, though I know it’s usually because they’re curious.

What resources have helped you to handle your low vision best, either in everyday matters or in moments of crisis?

I truly believe everything in this life takes a village. My biggest assets are the people I have on my team. My family has been my rock. The last four years have not been easy with my vision and neurological conditions and yet, they’re still by my side, taking me to appointments and holding my hand when the news comes down. We celebrate the good days and shake off the bad…together. I have two amazing eye care specialists and a neurosurgeon who are always available if and when I need them. I have rehabilitation professionals who have hearts of gold and care only about my success. I have the technology and skills, too, but nothing is more important than trusting, caring relationships when life hangs upside down.

What would you say is the most harmful or annoying belief that people have about vision loss? How do you cope with this belief?

I think the most harmful belief that people have is that vision loss is all or nothing: that we are either sighted or we’re blind. I don’t think people understand that, like anything, vision loss exists on a continuum and because it is not a static, unchanging characteristic, there are going to be days where a pot on the sidewalk will be seen and avoided without contact and there will be others where that same pot, on that same sidewalk will fall in an area of blindness and not avoided, tripped over and harm done. The truth of the matter is: vision is constantly changing. We live in a world where so much of life is consumed by the visual that those of us who use different senses have a unique way of looking at the world and it should be appreciated for what it is.

What’s your favorite way to celebrate autumn?

I love walking in the autumn weather. Hearing the leaves crunch under my feet. Smelling the burning firewood from nearby bonfires. Fall is such an aromatic season, built for the senses. When I have my guide dog, I love taking them out to play in the leaves and making huge piles for them to romp in.

What is a book that you could read over and over again? Why do you feel this way about it?

I could read Shel Silverstein’s poetry over and over again because there always seems
to be subtle nuances and imagery that come to mind when reading his work in all different moods.

What book, person, or perspective makes you feel most centered as a writer?

I feel like there is no one person or perspective that can center a writer. Yes, there is
subject matter that each of us excels in writing about but that subject has many perspectives, many details, many events that combine to make that person an expert. I enjoy reading blogs the most because they tell a different kind of story; I feel that they give meaning to a person’s life and provide their perspective on the world in which they live and their readers gain another insight into the world in which they live. Blogs can be so very inspiring and uplifting and if a reader is committed to a particular blog, that individual will get to know the writer or creator in a way that stories and articles can’t.

Blogs have added an entirely new dimension to the world of literature and how we experience the world. I believe in the power of words and using as many formats to put those words into action as possible.

What is one dream you hope to accomplish in the next 10 years?

In the next ten years, I would love to be a published author, traveling the world with my guide dog, telling my story and inspiring others to work through the difficult times in their lives because there is always something bigger on the other side of challenge. I want to make a difference in this world and I want my story to mean something to someone somewhere. I’d love to be married and, maybe have a family, but I want to know myself first!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s