This is something I have wanted to write for a very long time. It is mostly a catharsis for me, but also hoping to inform and maybe even help someone. It is in no way meant to call out or offend anyone, nor is it a request for sympathy. It is a wish for understanding and acceptance of why I do and do not do some things.
From birth, I have had what they call low vision. I have been through a few diagnoses over the years. The most negative outlook was the first one, when I was little. It was worse for my mother than me, as I was not made aware of it until it was disproven. That first was Optic Nerve Degeneration, a disease that eventually leads to total blindness. The thought was that would happen by age 15. My amazing mother decided that until that happened, I would go to a mainstream school. (When I was young, most schools for visually impacted kids were about life skills. It is better now.) It worked out well. I was 4th in my class, graduated Cum Laude with a BA in Psychology and then an MBA in marketing and management.
The current (and now correct) diagnosis is Ocular Albinism. It is a lack of pigment in the retina (The light-sensitive layer of tissue at the back of the inner eye. It acts like the film in a camera. Images come through the eye’s lens and are focused on the retina. The retina then converts these images to electric signals and sends them via the optic nerve to the brain.) While my type does not result in a lack of eye color, (well they change color depending on mood and light) I have several other impacts including:
- Light sensitivity – I see better in lower lighting that bright fluorescents.
- Nystagmus – fast, uncontrollable movements of the eyes sometimes called “dancing eyes” (I pulled this definition from a medical page and never heard it called dancing eyes, I LOVE that description.)
- Strabismus – a disorder in which the two eyes don’t line up in the same direction. This results in “crossed eyes.” Mine has been controlled to a great extent with a number of muscle surgeries and I may need others as the muscles can weaken again over time.
- Astigmatism (severe) – A condition in which the eye does not focus light evenly onto the retina, the light-sensitive tissue at the back of the eye.
The odd thing is, the doctors and not even myself, fully understand what I can and cannot see. It almost is this selective process.
So, what does all this mean?
- Because the eyes do not focus together, I have no depth perception. The best way I can explain what that looks like is that TV and movies look the same to me as the real world. I cannot watch 3D films as they look like two images to me.
- I cannot drive and I have a lot of trouble with normal bus routes. It takes my eyes longer to process numbers and letters and with the no depth perception thing.
- I have a great deal of trouble reading menu boards, finding signs, reading the board. If I sit up front, it is more likely so I can see, not to gain points.
- I sometimes “see things.” In other words, over time, my brain has figured out how to fill in gaps in what the eyes are sending it. Occasionally it fills in the wrong thing. I may think I see a person in the distance and it is a tree. I may see different words on a sign than what they really are.
- People’s faces are hard to see unless I am close to them. (No, please don’t put your face super close to mine, I don’t mean that close. Well unless you are very handsome and you are willing to risk a kiss.) This means I will easily lose you in a crowd. At a crowded place, I will struggle to find where you decided to sit down. I combat this by remembering what you wear, recognizing the sound of your voice. (I used to be able to find my mom by the way she cleared her throat. I could hear it halfway across a superstore.)
- Until things like Facebook, I didn’t know how beautiful so many of you are. It has changed my ability to recognize a face. If I hadn’t talked to you one on one, face to face, I only remembered the basics of you.
- If I say no to attending things or going out, MOST of the time it is the logistics of transportation that cause that.
- If you come to pick me up, I will ask what you drive. Not because I care about your car choice, but because I will not see you in the car.
- Cabs – I will spend easily $30-$50 to attend and there is the risk of getting a not so safe ride.
- I use a transit service for people who qualify. It has made a huge difference in getting to many things, but there are some issues. I am searching for a way to elevate these issues to people who can make changes. I must plan at least 1 day (usually 2) ahead for bookings.
- I need to plan for a minimum of leaving an hour before I need to be somewhere and getting home an hour after. (Most fun for a 10 minute appointment).
- There is no flexibility. You are marked if you cancel a ride. It means no deciding to go out after and event or work, no staying late. It makes a regular job very challenging.
- Other than getting there, I can usually manage with just a larger monitor. In past jobs, I have been blessed with several individuals who took me back and forth. I am forever thankful to all of them. I cannot express what their kindness ever meant. I hope they see this and know they made a positive difference in my life.
- My eyes may not always look like I am with you, but most of the time I am. They just don’t always listen to where I tell them to look.
- The depth perception issues make it hard to navigate stairs and changes in flooring. I see any change as a potential step. Open staircases freak me out.
But I have made most of this work. I moved away from home to test my ability to figure it all out. With the help of some amazing people and my stubborn nature, I have done well. There are many good things too. Silly things like no personal traffic stress, never having to be the designated driver. The real things are even cooler.
- When I meet you, I will take more time to get to know you and remember more about you than just appearance.
- I learned many awesome listening and retention techniques. If I keep focused, I will probably remember every word you say.
- My brain holds more things than I know what to do with. Until recently, I never needed lists to remember dozens of things that needed to be done. Age has modified that skill, but I keep most of it in there. J
- My sense of touch is particularly powerful. I shop with my fingers before I even really see the cloth. How something feels is particularly important to me. It also means I take more from a handshake, an embrace, a brush against my hair (my own mother knows, I tense when someone “pets” my head).
- I have found great people through my desire to help others with vision challenges.
- I am fiercely independent and I can figure out how to get almost anything taken care of if I put my mind to it.
All in all, I am blessed with so many good things and people. This is just one little “flaw,” one challenge to embrace. Just remember if I look past you, it isn’t you, I simply may not see you.
A few resources and tips, hoping comments will add more. (This is by far not an inclusive list, just the ones I currently know about; please add more if you know of them).
- Metro Mobility – This is here in Minnesota but check your area for similar services. Start with the transit authority. It is usually just a form that you and your doctor need to fill out to qualify. The prices are similar to local bus rates.
- State Services for the Blind – (again this is the MN name) This is for more than blind individuals, there is a corrected vision qualification. They help with everything from accessibility to transportation assistance to job search help.
- Vision Loss Resources – (MN) They provide training, support and job search for people with vision loss.
- Check your local United Way and other community services. They often have volunteers who will take you or go grocery shopping for you and more.
- Grocery Delivery – Vast new choices here from Instacart to Amazon fresh. There are fees, but gernally less than transportation costs would be.
- At a menu-board restaurant, just ask for a paper menu. Most will have then.
- Don’t fear asking for help. Most people will.
- Disability Hub MN is a free statewide resource network that helps you solve problems, navigate the system and plan for your future. They have some good resources.
Oh and if you want to learn more about me and hat I do for a living, check me out here The Information Tamer
