Two of Everything: My Life with Double Vision


Following John McCain’s diagnosis of glioblastoma, a form of brain cancer, a lot more people have been asking me about how double vision is managed, as glioblastoma can cause vision problems such as double and blurred vision, as well as a variety of other symptoms.   It is a fairly rare form of cancer, though other politicians such as Beau Biden and Ted Kennedy had the same type of cancer.  Here are a few things I have learned from my experiences with double vision as a result of a non life-threatening brain condition that heavily mimics glioblastoma in terms of vision loss.

Some background

I was diagnosed with accommodative esotropia at three years old, a common childhood eye problem that causes double vision, issues with depth perception, and reading.  It is characterized by crossed eyes, with one eye turning inward towards the nose, although vision issues can start before the eyes actually cross.  For a lot of children with this condition, glasses can correct vision to 100%, and the condition naturally goes away by age nine.  Unless there’s something else.

My vision got rapidly worse around when I turned nine years old- on my ninth birthday, I was unable to see a parade going on less than ten feet away.  My vision continued to sharply decline when I was eleven, and I had a one muscle eye surgery in 2008 to prevent my eyesight from getting worse.  Around when I was 14, I started to experience chronic migraines, chronic pain, worsening eyesight, and several other symptoms, and was diagnosed with Chiari Malformation at age 18, a congenital brain condition that often isn’t diagnosed until teenage years.  Because I had vision loss as a result of the accommodative esotropia as well as Chiari, I received the additional diagnosis of decompensated strabismus, meaning I have low vision issues originating from my eyes as well as my brain (read more about my eye surgery for this condition here and here).

What my glasses look like

My glasses prescription does not fully correct my eyesight, no prescription exists that can.  In the past, I wore thick prisms in my glasses, which are similar to magnifying lenses.  These are extremely common for people with double vision following brain injuries or other neurological conditions.  After my eye surgery, I no longer wear prisms.  My glasses are also tinted a dark gray color due to my photosensitivity.

It’s not always two separate images

Depending on how my eyes focus, I can see two distinctly separate images, or two images blended together.  If a person is standing in front of me, I may see two completely separate images, as if identical twins are standing in front of me.  Alternatively, the images may appear as a shadow, as if one image is floating above the other.  The most common for me is to see the images blended together side-by-side, so a person appears to have two heads and three arms/legs.

It can be hard to figure out which is the original image

Sometimes, I can figure out which image is actually there, and which is the mirror image.  However, my friends will tell you, I spend a lot of time grabbing onto thin air thinking I found something, when it is actually right next to whatever I’m grabbing.  I usually realize this within a second or two, mostly because I have had this vision issue all of my life.

Can you drive with double vision?

While a select number of people may be able to drive with double vision, I do not drive due to my other visual issues.  None of my other friends with double vision drive either.

Reading and double vision

With double vision, letters run into each other or form shadows, and I have difficulty reading long words as a result of this.  Thankfully, when processing information, the brain does not read every letter, and normally I can infer what the word is based on context clues.  It is more difficult if I am reading an unfamiliar word, or working on a math problem where every letter and number is crucial.  In addition to the double vision, I also have blurry vision that makes reading standard print sizes impossible.

What’s a print disability?

A print disability is the inability to read standard text, usually due to a learning or visual disability.  Some examples of accessible text include large print, weighted fonts, Braille, and audiobooks.  Read more about print disabilities here.

Large print

Large print helps my eyes to focus better and helps me understand words easier.  I typically ask for size 22 Arial font, as it is clear to read.  I had an IEP all through school to receive large print services- more on my print accommodations here.  All of my devices have large print on them as well- learn how to make Android accessible here, iPad accessible here, and Windows 10 accessible here.

Contrast

Sharp white paper with black text provides a large amount of glare and can make the double images seem much more intense and difficult to decipher.  I prefer to use tinted backgrounds to increase the readability of font, and actually did a science project on this to show which colors work best.

How I read

In high school, I received textbooks through AIM-VA, a state organization that provides accessible educational materials to students with print disabilities free of cost.  I receive other books through Bookshare, a national accessible library that allows people with diagnosed print disabilities to read almost any book they want, from New York Times Bestsellers to classic novels for school (it also receives federal funding).  For college, I purchase digital textbooks and carry them on my iPad.  I love living in a digital age where I can find accessible print for almost anything in an instant.  I don’t feel like I’m missing out on anything.

Assistive technology

I also use a few devices that are specifically designed for helping users with double vision/low vision.  Portable closed-circuit televisions, or portable CCTVs, are some of the most common high-tech devices used for low vision.  I have an E-Bot Pro that I use to read larger documents such as tests, and a smaller Eschenbach SmartLux that is the size of my cell phone.  So even if I am presented with a document that isn’t in large print, I can access it easily with these devices.

Double vision takes some adjusting, but it is in no way a catastrophic condition that will dramatically alter someone’s life.  Technology has come a long way, and people with double vision/low vision can easily continue to work as long as they have assistive technology and other accommodations.  Besides, sometimes it’s fun to see two of everything- after all, it’s better to see two ice cream cones than one!

Five Myths About Print Disabilities

As the school year comes to an end, preparations for a new school year are beginning.  As students transition to new classes and possibly even new schools, they may find that there are people that don’t know what a print disability is, and these people may struggle to create accessible materials or order special items.  It’s important to start the school year off right, so here I have compiled a list of five myths about print disabilities, and how to ensure students receive accessible materials

Myth 1- There’s no need for large print in math/science

While there are some print disabilities like dyslexia that only affect letters, most print disabilities affect letters and numbers in all subjects, as the font is too small to read.  There may be added difficulty with graphs, exponents, subscripts, maps, and even music.  Always have large print materials available for all subjects- this extends to textbooks as well.

Myth 2- Writing in all caps is the same as large print

DOES THIS LOOK ANY LARGER TO YOU?  Nope, didn’t think so.  Writing in all caps in a small font size is not the same as having large text.  There’s no need to write in all caps in large text either. Unless the rest of the class is getting everything in all caps, there is no reason for the student with a print disability to get everything written that way.

Myth 3- If you sit there long enough, inaccessible materials will become accessible

One day, I received a practice test that was in small print.  I walked up to the teacher and asked for large print, and they told me to sit there and try harder to see it.  After staring at it for an hour, the font didn’t magically enlarge or become clear so I could see it.  It’s also a bad idea to argue that the student doesn’t need large print, especially if they have an IEP.

Myth 4- Students should feel bad requesting large print 

At a band audition, I had trouble seeing the music that was provided for me.  The teacher on duty (not my teacher) informed me that I could throw everyone behind for 45 minutes so they could enlarge my music, or I could suck it up and play the music I couldn’t see.  This teacher knew exactly how to make me feel guilty for something I couldn’t control, so I just tried to guess what the music was- and looking at my extremely low score, I’m pretty sure my guess was very off.  Looking back, I should have made them enlarge it, as I deserved the same opportunities as the other people auditioning.  I don’t get any extra advantage with my large print.

Myth 5- If a student can use a cell phone, they don’t need large print

I actually have an entire post dedicated to this topic called “My Phone Isn’t Paper.”  Paper displays and digital displays are two different things, and students have found ways to be able to use technology using the accessibility settings.  After all, you can easily zoom in on a digital screen…the same can’t be said for a paper screen.
You have the right to see materials just like every other student, and your school is required to provide accessible materials for you if you have an IEP or 504.  Don’t let anyone tell you otherwise.