In October 2012, I was declared legally blind. Since then, I’ve had about two “periods” where I notice my vision is getting worse. Now, it’s hard to really tell when my vision got worse. My vision could be getting worse as I notice it, or it could have gotten worse previously and I could just be noticing now that I can’t see like I did before. That’s the tricky thing about RP. Also, the way RP and the brain works is the brain fills in the “missing pieces.”
This was once explained to me in the early stages of me losing my vision by a good friend, Misty, who also had RP. She explained it when talking about driving. We could be driving along and where we don’t see, our brain fills in with something, but of course not what is actually there… so where our brain thinks is just an empty road, could really be a kid walking across the street. We don’t see this kid walking across the street because of our vision loss and we hit them and seriously hurt them, or worse. This was one of stories and reasons as to why I voluntarily surrendered my license after I lost a good chunk of vision. I could never live with the fact of hurting or killing a child.
But anyway, back to the original point, the brain fills in the missing pieces for us and so sometimes it’s hard to tell if/when you’re losing vision. However, my vision has degenerated to the point where I can’t read conventional print anymore, can’t use some electronics with small print, can’t distinguish a lot of faces anymore unless I really know the person, etc. I’m becoming REALLY blind, and I was already pretty blind.
It’s hard to explain the “levels of blindness” to someone, especially if you already identify as blind but then you get REALLY blind. Over the past many months, I have experienced significant struggles. When I started this job a year ago, I could read case file labels, the scanner/copier, the phone Caller ID, etc. I can no longer do that. These “simple” tasks are making my job a LOT harder because I am not able to do them. So, I reached out to my previous Vocational Rehabilitation counselor who wasn’t able/willing to really help me at the time. So then I just let it be.
However then I really started to continue to struggle with simple tasks. I was still able to do my overall job because I found ways to accommodate and get the job done.. so nobody really noticed. But I knew things could be easier and I knew things had to change. My boss is also super amazing and I felt she deserved to know that I was losing vision. She also has a good friend who has RP and is totally blind due to it, so I knew she would understand. My boss reached out to a manager in the Division for Blind Services (the other division of the agency I work for) and asked for guidance. We are now starting to talk and figure out ways that could accommodate me, but part of that is opening a new case and receiving vocational rehabilitation services myself. Part of me is pretty excited about that – I can receive independent living training to help learn how to cook, etc with my current level of vision. I can still cook but things are getting harder like – telling when a chicken is fully cooked. Because they do this job daily and a lot of the counselors are blind themselves, they can also teach me tricks on how to do this job without much vision and they can help me prepare for work and life as my vision degenerates.
But part of me is really not ready for this. Dealing with all of this with my boss and other blindness professionals made it all the more real for me, that I really am losing my vision. I had essentially gone through the grieving process before and I had reached a level of peace with my vision loss. I am not at peace yet with my level of vision loss now. It really is like going through the grieving process all over again. The night after I had this talk with a VR Counselor for people with visual impairments, I was a complete wreck. I honestly can’t think of a time where I was more emotion and unstable than that night, other than when my Dad passed away. I tried to reach Steven, he wasn’t available. I tried to reach my best friend, she didn’t respond. I tried to reach my guy best friend, he was too tired and going to sleep and I didn’t want to bother him. I tried to reach my good coworker friend, she didn’t respond. I know none of them were trying to ignore me, etc., but I seriously felt the most alone I have probably ever felt. I laid down on my floor and cried and cried and cried for literally hours. I also started to have a really bad shoulder/back pain during that day and that pain was getting excruciating too, which led me to more tears. I couldn’t figure out how I was going to get myself together that night. I was very very low. I tried taking a bath for the first time in my new apartment and figured out the drain didn’t hold water in.. it was just a nightmare altogether. Makiko was super comforting though and kept coming to lay on me and keep me company. She had no idea what was going on.
I’m strong, and I can do this. But that doesn’t mean I’m not having my days of being depressed and stressed as I figure out this new stage of my vision loss. I’m ready to rock it, but still coping with it too.