Living Above and Beyond My Limitations

I have lived with a visual impairment for forty-one years now.  Not a minute goes by that I forget it

is a shadow that never leaves my side.  But because my visual limitations are often invisible to

those around me, it is not uncommon for people I meet to have no idea-unless I tell them.  And

explaining the disease takes time, so avoiding a detailed explanation is typically most

comfortable and convenient.

The past three years have taught me about more than just grief.   My willingness to go to  great lengths to appear competent and to look “like everyone else” dominated me.  I never wanted to be weak or dependent on others.  But when my life instantaneously spun out of control after Dalton went to Heaven, all the work I had achieved over the years unraveled in the blink of an eye.  Suddenly, I didn’t have it all together.  In fact, I was coming apart at the seams.  Child loss made me profoundly different  from others because I only knew one person who had lost a child to suicide.  Grief made me weak and dependent on others as I struggled to make it through each day.

My visual impairment made me feel broken but I could pretend I wasn’t.  Grief shattered me but

this time, there was no way to hide my imperfections from the world.

The realization that it is unhealthy to hide or mask my imperfections prompted me to write about

my eye condition.  Hopefully, this will demystify what some of you have always wondered but

never wanted to ask or inform you if you had no idea.

 

My diagnosis of Stargardt Disease arrived in my life at the young age of eight.  So I never really

knew any different.  At the time, research and knowledge were limited except in knowing the

disease is genetically inherited, and nothing could be done to reverse its effects.  Without a cure,

my vision would slowly continue to decline. Fortunately, the disease stops short of total blindness.

While I am considered legally blind,  I like to say I have enough vision just to be dangerous.  

Stargardt Disease is a juvenile form of macular degeneration that affects the macula, the central

part of the retina.  This part of the eye is what enables humans to clearly see small images and

details.  Patients typically experience minimal or no loss to their peripheral vision.  

The National Eye Institute describes its cause this way.

 “Stargardt disease is usually caused by changes in a gene called ABCA4. This gene affects how your body uses vitamin A. The body uses vitamin A to make cells in the retina (the light-sensitive layer of tissue at the back of the eye). Then the ABCA4 gene makes a protein to clean up the fatty material that’s left over. In Stargardt disease, this gene doesn’t work — so the fatty material builds up in yellowish clumps on the macula. Over time, this fatty material kills the light-sensitive cells and destroys your central vision.”

My visual acuity of 20/400 means that if you are looking at an object from 20 feet away, it is like I

am looking at the same object from 400 feet away.  Three hundred eighty feet makes a huge

difference!

With that being said, there is not a centimeter of my life that isn’t touched by my vision.  I absolutely did not include this statement for pity.  Rather, so you could understand that my visual limitations affect literally everything I do.  Making necessary adjustments isn’t a bad thing, but they are absolutely critical.

• Locating places in public

• Finding the correct public bathroom

• Recognizing people out in public

• Reading a menu at a restaurant

• Identifying foods on a buffet

• Reading tags/signs when shopping

• Paying on the credit card pad at retail stores

• Finding the right product on the shelf at the grocery store

• Reading directions on a box while cooking

• Operating my cell phone

• Using a computer

• Operating appliances such as the washer/dryer, dishwasher, microwave, stove/oven

• Teaching my students

• Giving a presentation at school

• Playing games for recreation

• Getting places without the independence of a driver’s license

This is merely a fraction of the entire list.

Thankfully, God has used many amazing people to invent life-changing resources that allow me to

adapt in life and still experience purpose through many outlets.  Regular prescription lenses are

ineffective in correcting the damage of Stargardt Disease.  Even handheld magnifying lenses are not sufficient at this stage.  However, screen enlarging software for my computer, video magnifiers for reading printed materials, and speech tools all offer me independence when they are accessible. 

  

I always wondered if I would experience the vision changes that most people experience as they

get older. And then I turned 40. My question was answered. Slowly, I began to notice images

looking a little extra fuzzy. The purchase of over-the-counter reading glasses did help with the

impact of my aging eyes but were still unsuccessful in correcting the damage caused by the

Stargardt Disease.  

Just like a person who has lost an arm or a leg, I have learned to manage life with my visual

impairment.  My condition is definitely one I never would have chosen. But this is the thorn I was

given, so I choose to conquer it rather than letting it conquer me. My awareness of my visual

challenges is running in the background of my brain at all times.  I never forget (although I have

people tell me frequently that they do).   It is part of who I am.

How do I navigate living in a sighted world?  This is a complicated answer.  The simple

version is, I use every sensory detail I can grab a hold of.  For example, when walking down the

hallway at school and seeing another teacher from afar, I am unable to recognize him/her.  So I

begin digging for clues.  How tall is the person?  Did I see this person wearing this certain color

earlier today?  Do I recognize their gait?  Did I hear them talk or laugh?  Countless questions

flood my mind while I work to correctly identify the oncomer so I can say, “Good morning.” It’s

embarrassing but at times I don’t realize who the person was until they have passed, leaving me

feeling a little socially awkward.  

All this to say, familiarity and routine are important in my life! 

I have also been blessed with compassionate friends, family, and co-workers who help me

navigate life when my adaptive technology isn’t accessible. I am thankful for and blessed by their

desire to help me strike the balance between retaining my independence while subtly providing

the help I need.

It feels quite freeing to share these details about my vision after all these years.  God has

sustained me with every need I have ever had since the day I was diagnosed.  Researchers may

never discover a cure for Stargardt Disease while I am still alive, but I know without a doubt that

my visual impairment will come to an end, and I will gladly say goodbye to my shadow.  Stargardt

Disease doesn’t exist in Heaven!