On the day of my formal introduction to Retinitis Pigmentosa (from here on out affectionately referred to as RP), I woke up to a chilly five a.m. alarm, took a quick shower, threw on lounge around the Eye Institute clothes, and waited for my dad to pick me up. The day began with a series of scary sounding tests; well, let’s face it, tests by any name sound pretty fucking scary and I had a history of doing lousy on tests.
The first test of the day was another Visual Field, but with a twist. Rather than being scored by a computer, I got a live proctor. Damn, there would definitely be no cheating. During a Visual Field, you are asked to place a sterile patch over one eye, stick your face into a large white dome and press a button each time you see a flashing red light. Sounds simple, straight forward, totally passable. It sucks. The proctor instructs me to stick my face into the dome and asks if I can see the big red light in the middle, then tells me to focus on it for the next fifteen minutes, with one eye, while pressing a button as other red lights flash in the distance. Instantly, I feel an impossible urge to blink and my eye starts to dry up. I am really trying to focus on the big red light in the middle, but it keeps disappearing; and then I remember the flashing red lights that are supposed to be appearing with some regularity but seem to be on hiatus. Then, right there in front of me, like a beacon of hope, I see a big red flash……or I think I do…….so I press the damn button, hoping that I answered correctly.
Half an hour later, I am excused; sore neck, dry eyes, and fuzzy red lights all over the room.
One down………
October 5, 2017 at 7:24 am
I don’t hate much in life, but I hate this visual field test!! I had to do it so many times, trying to figure out the system and it’s effectiveness as I continued to do poorly on it. I have also been Dx with RP, formally just June 1st, 2017. That horrible feeling of knowing the lights are flashing but you just can’t see them… 😐
Glad to find your site. Dave
October 5, 2017 at 7:31 am
Hi Dave –
I am with you; the visual fields are terrible. They mess with your head and hurt the eyes. I am sorry to hear about your Dx; I hope that reading about some of my experiences with RP can help in some way. Whatever crazy tests you have to go through, or whatever crazy stuff is going on with your vision, I totally get it. Thank you for reading my blog! Are you also blogging? Let me know how things are going for you whenever you want or need to.
Susan
February 3, 2018 at 7:12 am
I am already in awe of the journey I am about to take. I am not sure if you’ve ever read about something I do when I am drawn to a particular person’s blog. But I am. There is a post by TomBeingTom that might better explain why I am at the beginning of yours. http://www.tombeingtom.com/the-words-of-the-wulf/
February 3, 2018 at 7:20 am
I actually found you through Tanya and Tom and I am so glad I did. I am incredibly honored that you have taken an interest in my blog. I am really excited about reading more of yours, especially your poetry, and talking more about poetry. It is a special world and you are clearly immersed in the nuances of it! I have been wanting to come out of the woodwork and comment on your blog for a long time; I am so glad I have! You are so kind and generous!
February 3, 2018 at 7:24 am
You are very kind in your praise. I tend to write…a lot…as I get these words in my head from things I see, or hear, or feel. And they have to come out.
I am so glad you did find me and start to comment…I noticed you in the Like’s of Tom’s post on me, so I see you are familiar. I know where I am now spending my time. Tanya is another rare soul that needs to publish more. She is a brilliant writer.