Living with Stargardt's MD has been an ongoing cycle of self-doubt, readjustments, and perseverance. I have had to rethink the way I approach a situation and complete seemingly simple tasks.
I have compiled a list of some of the challenges I face as a person with vision loss (both serious and somewhat comical). My experience is not the experience of every person with vision loss - and not even every person with Stargardt's - but I hope this can give you a better perspective into what it is like to live my life with low vision.
1. I am CONSTANTLY being asked if I wear glasses. Whether I tell someone I can't read a menu or I have my phone only two inches away from my face to read a text that already has enlarged font, someone is always asking me if I wear or have forgotten my glasses. This used to bother me a lot as a kid, I was really self-conscious about my visual impairment back then, and I would get angry. I have worn contacts since the 6th grade and this is a question I get at least once a day and, to be honest, it is an exhausting conversation to have 365 times a year:
"Do you wear glasses?"
"I have contacts in right now actually."
"Do they help? You look like you can barely see your phone."
"Well, I actually can barely see my phone. I have a visual impairment. So yes, my contacts do help, just not as much as someone without low vision."
It may not seem like a lot, but this conversation often begins to spiral into a lot of personal questions about my ability to do relatively simply tasks. It is about a minute of my day, every day, all year. That is more than six hours a year explaining: Yes, I do wear corrective lenses but no, they do not completely correct my vision.
2. I am pretty dependent on other people for a ride. While I do have my license (see post: What It's Like Being a Visually Impaired Driver), I don't drive at night and am very picky about when and where I drive during the day.
This pretty much means I single-handedly keep Uber in business.
I often feel as though I am a burden to the people around me when I need to ask for a ride. Often times I will readjust my daily schedule to only ask for a ride if I know someone is already heading to my destination or, at least, in the area of it. I hate asking for rides. I know people have better things to do throughout the day than to drive me around.
3. Walking around by myself is overwhelming. I love walking, taking hikes along trails, and exploring new places, but it can be very intimidating. I cannot tell who is around me, or even if someone is around me until they are maybe three yards away. I tend to walk towards areas with construction work, only to have to turn around and find a new path to get to where I am going. I am sure dozens of construction workers have stood around and just wondered, "What is this girl doing? Can she not see the machines and flags and construction signs?"
No. No I cannot.
I never know whether that thing I see up ahead is a car or a trashcan or a tree or a person or just about anything else you may find walking along the side of a road. I have been known to point at a piece of cardboard on the ground and think it is a squirrel. Yes, it is an interesting time taking a walk with me.
4. I overfill my cups and water bottle. To be fair, water is clear and when you have a clear liquid in a tinted cup or water bottle you are just asking for me to spill something. This took me years to figure out. I would be trying to fill my water bottle at the hydration stations we had on campus, but I could never get close enough to see where the water line was at and by the time I would see it, water would be spilling over the sides of the bottle.
I have also been known to run late to work after overfilling a Keurig machine with water and not notice it was pooling onto the counter until I heard a steady stream of water land on the floor.
It wasn't until I was in graduate school - yes, graduate school - that I realized I could stick a finger into the top of the water bottle and feel when the water was nearing the top. #BlindLifeHack
5. Subtitles are the WORST. I really, really, really want to watch Train to Busan but can't because I can't read the subtitles and I don't know the language. When an entire movie such as Hush is communicated through subtitles, I either have to spend four to five hours just pausing and playing the movie so I can read everything or I simply don't watch it. With as wonderful as my boyfriend, Ryan, is for reading aloud anything I might otherwise miss, even he has to draw the line at quickly reading aloud hours of dialogue for the sake of us watching a movie together.
6. I run into everything and trip over nothing. Aside from just being clumsy, my depth perception is not the best and I have a tendency to run into anything within a two-foot radius of me. I run into semi-open doors and cabinets, counters, couches and chairs, tables, desks, the works. Especially if I am getting used to a new environment, I am usually walking around with stubbed toes and bruises on my arms and legs.
When the ground slightly raises or lowers on the sidewalk it generally means I am going to trip. I have gotten so used to it that I usually act like it didn't happen, but it is always fun to see others walking nearby look to see what it is that tripped me only to find empty pavement.
7. Recognizing faces is really difficult. Since Stargardt's effects the part of the eye responsible for fine-detail, it is really difficult for me to recognize faces from a distance. I have had people think I was ignoring them or being rude because I did not see them and say hi as we walked past each other on campus. I lose my friends every time we go shopping together and usually have to remember the color of the clothes people are wearing in order to even stand a chance at finding them on my own.
Working in Student Affairs has only made this issue worse since I am constantly surrounded by new students, residents, and staff. I make every attempt to be able to place names to faces, but often times people are simply too far away for me to identify. In a field where students are the focus, I generally feel as though I let them down by failing to be able to recognize their face.
8. Not being able to read the menus at restaurants. I cannot tell you how many times I have gone to a Panera Bread and not been able to see what my options are. The one in my hometown doesn't (or, at least, didn't) have the screens to order from and the only menu was the one above the register. I have probably ordered Mac & Cheese on every visit simply because I don't know what else there is.
This is the case at nearly every restaurant I go to. I have one typical order and I will get the same thing almost every time. If it is a place I have never been before, I will order whatever someone else at my table does and I don't even bother trying to read the menu.
Size 6-font + dim lighting = me staring at a page that I will not be able to read for ten minutes while others pick there food and I jus pretend I know what I'm doing
9. Being blinded by too much light or a lack of light. My eyes are very sensitive to light as a part of my visual impairment. At night I am nearly blind and have a very difficult time walking around in areas that are not well-lit. I have tripped in clubs and movie theaters because I am not able to see in areas that don't have a sufficient amount of light. On the other hand, on a very bright Florida day I am nearly blinded by the sheer amount of light. I have to wear sunglasses every time I go outside even if it is just to take a step outside my front door. Additionally I wear hats and try to stay in the shade as much as possible to avoid the worst of the glare.
Consequently, this is also how I remain so pale despite living in Florida for over a year.
10. People assuming I can see because I don't have a cane or guide dog. When I ask for directions, even when I say I am visually impaired and cannot see signs, people will often give me visual landmarks to follow by pointing and saying "Turn up there where that car is turning out of and go straight. The building will be on your left and you'll see a sign for it."
I want to take a moment to thank Alyssa Irene for saying it best, blindness is a spectrum. Most people do not understand the concept of low vision. Most people only know of perfect vision (perfect being a visual aquity of 20/20 or better), wearing glasses to have perfect vision, or being totally blind. The idea even of being legally blind does not occur to most people (a visual aquity of 20/200 or worse). What most people fail to see is that there are different levels of being blind.
Additionally, it is a very personal choice to use a cane or have a guide dog. It is not fair to impose your ideas of what blind looks like onto someone who is visually impaired or legally blind when you do not understand what they go through on a day-to-day basis. The decision to use these tools is a deeply personal one.
11. Most of the people who see my specialists are 60+ years old. Since the age of eleven my vision has been comparable to that of a senior citizen. Just let that sink in. One time, my dad was driving me, Ryan, my cousin, my brother, and my grandma to Atlantic City, NJ. My grandma was sitting just in front of me in the front passenger seat when she pointed out of the window and read a billboard that was up ahead. My grandmother read a billboard that I didn't even know was there.
While there are many many more things I could talk about on this list, these are just some of the most frequent challenges I face in my daily life with low vision. I hope to continue to share my journey with you and shed more light on this important topic.