I have now lived with having Stargardt’s Disease for about 44 years! Those of us with Stargardt’s have differing visual acuities and I have no idea of what mine is right now, but maybe we share the same visual frustrations? The other day I was contemplating my top 10 frustrations about having limited vision because of Stargardts. I appreciate that many of these are also frustrations for those who have limited vision because of some other eye problem. This is the list that I came up with but I found it too hard to rank them from 1 to 10.
Because of my limited vision due to Stargardt’s, I am NOT able:
- to have eye contact with people (unless they are REALLY close!)
- to drive
- to recognise people that pass by in the street
- to “walk tall with confidence”, always fearful of unseen obstacles in my way!
- to “see” what people say. One has to listen more intently as the added “extra” of being able to see what people say across a table/room does not exist.
- to feel totally confortable about international travel by myself. Airports are a very stressful place for me when travelling alone!
- to fully enjoy watching or participating in any ball sports
- to read a book (but have adjusted to listening to books)
- to see bus numbers, signs for toilets, street names, house numbers, destination boards at stations etc.
- to see/read price tags on clothes, food etc.
The last two frustrations are lessened by the use of various magnifiers … but are still frustrations!
With regard to the first frustration on the list (I am NOT able to have eye contact with people), when I talk to a person across the table/room I obviously try to have eye contact and I think I am looking directly at them but, in fact, I am using my peripheral vision so therefore NOT looking directly at them – and they in turn look BEHIND them to see WHO I am talking to! This is a pure Stargardts frustration due to my obscured/loss of central vision. This really gets me down at times and tends to make me avoid actually trying to do this …. but, as everyone knows, one can be judged as being offish, shy, hiding something, impolite and/or insecure if you avoid eye contact with people.
Other frustrations include:
- when people look in your direction, do not use your name and talk to you but you do not see that they are in fact looking at you hence talking to you
- difficulty going down stairs (edges disappear and they seem to merge into a slope!)
- not being able to see the face hence expressions of an actor/actress at a live theatre show
- no longer able to see/read music (sang in choirs/played the flute in my youth)
- not being able to use just any computer (I must have Zoom Text)
- smart phones are nothing for me
So, could you relate to any or all of these? Do you have other frustrations due to Stargardts?