This has been a tough year for me. I suffered some personal losses and have been struggling with the vision loss that always seems to be accompanied with numerous bumps and bruises. When my vision shrinks it’s always difficult physically, but the emotional sense of loss is the worst. I was working on this website over a year ago and was hoping to have a book finished with everything I’ve learned about RP; unfortunately, my vision started failing fast and the emotional roller-coaster took over and I had to step away for a longer period than I had anticipated.
When I was first diagnosed the symptoms were minor, then the field of vision shrank but my central vision was good. Over the last year or so my vision has gone through significant changes monthly, sometimes weekly. What spurred me to write about this was my son. He understood some of my issues but when we were at a restaurant and he was telling me about a picture on a wall, I couldn’t see it and he couldn’t understand. So I explained it, in detail and he finally understood and encouraged me to write about it so that other family members and friends might start to understand as well. So, here it is, how I see.
I was first diagnosed in 2001. At that time, I was just going to the eye doctor for new glasses. When she did the exam, she noticed something was wrong and sent me for further tests. I was informed a couple of weeks later that I had Retinitis Pigmentosa. I had no idea what this meant and read everything I could find on the disease, there wasn’t much. In hindsight I know that I had gone from being graceful to klutzy. I would bump into walls and trip over things. I really hadn’t noticed any issues with my eyes. I did have trouble seeing details during twilight but with no family history with blindness of any kind, it was all a surprise.
First Noticeable Changes:
My sight was stable for several years and I fooled myself into believing that I could stop myself from going blind if I just believed strongly enough. Then changes started happening. When I was told I would lose peripheral vision I thought only of the sides, it didn’t occur to me that up and down would be a problem but they were the first to drop away in a significant way.
I was constantly banging my head on things and now I wasn’t just tripping over things I was banging my shins into all kinds of objects. It was like I was unaware of where my head and feet were. There was also a narrowing of my vision. I would test this by looking directly in front of me and taking note of what I could see to my left without moving my eyes and then to the right. I watched as the width shrank but still I believed that somehow, someway I could will the progression to halt. My central vision was still reasonably clear, so I figured I was doing well.
No More Pretending:
Over the last year things have changed so quickly and significantly it makes it impossible to pretend or believe that my eyes will magically recover. I finally went and got the genetic testing done and got the high of “we know what gene is effected” and then the low of “but it is so rare that no one is currently working on it.” I, personally, will never see a cure or even a treatment for my condition within my lifetime. Harsh, but there it is. It took a few weeks to accept this fact, but I have. I have created a bucket list of places and things to see before I go blind. It’s turned what was horribly depressing into something exciting, something I wouldn’t have done for years.
Another interesting point with the genetic testing was a mystery to solve. According to the genetic information there are only two families who have had the genetic mutation that I have. One is Spanish and the other is Jewish. The problem has to be passed down to me by both of my parents. So what is so mysterious about that, well, I never would have gone for the Ancestry DNA testing if it weren’t for this mystery. You see, I am Irish and Scottish and we can trace our history back for several generations. I figured that the only thing that would come back in the DNA would be some peat and thistle because there was nothing interesting to find. Now I can’t resist, I need to know what happened with my family. Am I the beginning of a newly recorded family with this hinky gene or do my ancestors have some explaining to do? But I digress.
The Current Situation
So right now, how do I see? My visual fields are at about 20 degrees, and I also have multiple blind spots in my central vision. This combination is bad enough, but my central visual acuity is also faltering. I see what a normal vision person might see in heavy fog or a smoke-filled room. I have bright, white lights that spin into my vision like paisley swirls dancing in front of my eyes.
On bad days and when I’m particularly tired I see spots of bright static and large black spots floating around in front of me. On the worst days I can hardly see anything at all. Details are lost to me and colors are blending into each other so that reds, oranges and pinks all look the same, blues and greens have no dimension, and nothing has real vibrancy.
Textures must be touched to be appreciated and I have come to really hate steps. Moving from brightly lit areas to dark areas is difficult, it takes several minutes for my eyes to adjust if they do at all. Going from dark to bright is worse, it’s actually painful with sharp stabbing knives piercing my sensitive eyes.
The trouble with the picture on the wall that my son wanted me to see was simple. The restaurant we were in was all windows. The picture was above one of the windows and it was a bright and sunny day. I looked up and couldn’t see the picture. My son had me come to a darker area of the room thinking I would be able to see it from there.
Frustrated, I told him that all I could see was a black board on the wall above the window. Now, how to explain what is going on?
Photography is a great way to show what it looks like. If you take a picture of someone sitting on a couch with a window behind them on a bright day, what do you get.
You can make out that there is a person on the couch, but their face is shadowed so badly that you can’t see their features. Like the image above, the light behind the people is so bright you can only make out the silhouettes of their bodies, no features. Well, this is what I go through every day. If there is any light behind, or beside or under anything, I can’t see anything but the light and maybe some darker silhouettes. The light puts everything in deep shadow so that there are no details, there are no images, there are only black shapes.
Light and dark are now my nemesis. They play tricks on me, making me think that something is there when it isn’t and making me think my way is clear when there are obstacles. People and things disappear into blind spots and people who want my attention need to either speak to me or touch me to let me know that they want something.
Not everyone gets this. Family members that know better will often give hand gestures and when I don’t see them or can’t make out what they are trying to get across they get angry and bark commands at me. I sometimes feel like a child being scolded, but I try to understand. How can they know when they have never gone through anything like this? I can’t blame them or get mad at them for their own ignorance, I just try to explain and hope they remember for next time.
My son had a revelation the other day when I could finally explain in a way he could understand, how I see.
As the darkness grows darker and my tunnel shrinks I know that I will be blind soon. I don’t know the exact date, that would be handy, but no one knows. My eyes could stabilize and stay as they are for years or I could, theoretically wake up tomorrow and see nothing.
I hope that I get to see for at least a couple more years. I have a plan you see. I have to make myself ready to go completely blind and to that end I have been trying out and acquiring tech, making some plans as to where I will live, the help I will need and how to organize my life.
I know that I need to make changes so that I can remain as independent as possible for as long as possible. I think about sacrifices that I’m willing to make and the things I am unwilling to compromise on. I am trying to enjoy as many different activities as possible with the vision I have left which leads me to the big one – The Blind Bucket List!
The Blind Bucket List
I know that because my type of RP is so rare it is highly unlikely there will be a treatment, let alone a cure for my RP in my lifetime; however, there may be a treatment or cure out there for your type of RP and I am on a mission to find it.
I’m also going to be visiting researchers, doctors, eye hospitals, tech companies and everything in between to find the best resources for you in your struggle with RP. I would also like to bring stories of other RP’ers just like you so that we can learn from each other and inspire one another. Whatever I can find out, I will bring to you here at rptunnelofsight.com, so watch this space.
Out of the Darkness, Light
Of the many things I’ve learned along the way is that life is what you make it. I might not like going blind, the people around me might not always understand, but in the end I have two choices.
I can either feel sorry for myself and fold under the stress of this disease or I can pull myself up by the bootstraps and make the most of a bad situation. I like the latter option. I will see whatever I can before I go completely blind and when I can no longer see the world around me I will muddle along and do the best that I can.
What About You?
I would love to hear from you in the comments below. How do you see? Was this article helpful to you? What would you put on your Blind Bucket List?