As I was thinking about what to title this post, that song that has the lyrics “Down, down, down, down” kept playing through my head. That’s what’s gone on with my vision over the past 8 months or so.. it’s gone down, down, down, down.
I was walking home with two amazing classmates and they were asking me what I could see nowadays because they noticed that I was having more trouble with handouts, and I am. Print is becoming increasingly hard to read. I CAN read it some if it’s not too tiny, if it’s in a basic font, if the lighting is just right, and most of the time if I am wearing my glasses. However generally I need it in larger print and I prefer everything in electronic format so I can customize it to make it where I can easily read it. I’m not an audible learner so I like to do things visually still, it just takes some extra time. I recently had to setup my CCTV to read handouts and papers that aren’t large print. But for example, when we go to a restaurant, I can read most menus. Some menus I can’t, especially in the dark lighting, but there are many restaurants that I can read the menus in. I just take more time.
My night vision and light sensitivity has also significantly changed. Going from light to dark situations or vice versa is very hard on me. It takes my eyes a lot longer to adapt. I also need more light for my eyes to see anything that I used to. However at the same time too much light really really hurts my eyes nowadays.(Yay for prescription sunglasses!) The ideal lighting situation is nearly impossible nowadays which leaves my eyes either straining or me with a headache. One of my classes this summer is in a very bright classroom. The lights must be a high wattage and they are everywhere, but what am I going to do.. ask the teacher to turn the lights out? I don’t think so. I can’t wear sunglasses in there either so I just have to deal with it. It stresses me out sometimes though.
Watching movies has always been a little difficult but is becoming increasingly more difficult. Think of it this way, you see out of a straw in perfect lighting. Now you see out of a straw but have a thin sheet of black tissue paper over the end of it. That is kind of what I see during the movies. I don’t have enough light to really make my retina function its best and I don’t have much vision to see out of in the first place. So in order for me to see the screen and the entire picture, I have to constantly scan. If I sit more in the back of the theater so that I can see more of the screen, I lose clarity and detail. If I sit closer to the front so I have more clarity and detail, I can only see a tiny fraction of the screen. It can get exhausting. I have been better lately but I tend to fall asleep during movies because unless the movie is super stimulating, my eyes and brain gets exhausted trying to visually keep up and I just go to sleep.
Watching movies at the front of classrooms is getting difficult too. I can still see some, but again, I see out of such a small hole that I miss a lot of what is going on. I haven’t had time to get used to this yet though but I will over the summer because we’ll be watching videos a lot in one of my classes.
Last, but not least, my tunnel vision has gotten worse but that is kind of the classic symptom of this disease so it’s not that much to write home about. For example, I walked in to my apartment the other day with Steven leading. We each had a lot of stuff in our hands and I had Makiko. We get into the apartment and I notice there are lights on and my roommate’s door is open. Steven is standing there, about 3 feet in from the doorway, and eventually I got the hint that he is trying to indicate to me that there is something there I’m missing. Oh hey, what do you know, there’s my roommate sitting at the table less than a foot from Steven. Okay so I’m here looking straight at my boyfriend and my roommate is really close to him and I didn’t see her, at all.
I am really glad that I got Makiko when I did. I have not had a single fall because of a blindness issue. I’m not able to see cars coming, stairs, curbs, sidewalks, etc. I have a hard time finding doors when I’m going to a new building, see people coming at me, fire hydrants, barricades, etc. The cane would help me with a lot of this but it wouldn’t be able to help me find the chair, the elevator, the door, the escalator, the curb, etc. I’m not doing a very good job at describing how much she does and how important Makiko is to me in terms of safely navigating the world. She makes life SO much more safe and so much LESS stressful.
Now, I feel it is important to say I am not depressed about my vision change. This is all kind of expected and I just take it as a challenge. I’m just explaining it for those of you who are curious. 🙂