Okay, so my last blog post I gave you the history behind my hydrocephalus, and what it is. However, that doesn’t really explain how we got to where things are today.
So, here goes…
As I briefly mentioned, ever since being told I had outgrown my condition I had experienced various symptoms over the years, such as chronic headaches, back pain, and neck pain. I had gotten used to living with it all, however, in 2017 it all came to a head. My shunt finally stopped working at all (instead of not working effectively), and, while on vacation in Mexico I lost my vision and became partially paralyzed.
Upon returning home I ended up at Johns Hopkins Bayview Medical Center, where it was quickly determined the issue was my malfunctioning shunt and I had emergency brain surgery to implant a new, programmable shunt.
Eventually, after months of rehab, I was able to walk again. In addition, after the new shunt was placed, I slowly recovered some of my vision, however, the damage had been done and I am now legally blind.
This leads me to the main reason for this post.
I get a lot of questions about what my vision is like now. I thought I would try and explain.
When the fluid built up due to the shunt malfunction it put pressure on my optic nerves. Initially I had total vision loss, however, over a period of time, after the surgery relieved that pressure, some of my vision returned. Unfortunately, many of my nerves had died, and the remaining nerves were damaged.
People often ask me why I still wear glasses. Well, I needed prescription glasses prior to my vision loss, so, the vision I DO still have still needs correction. However, they cannot correct the damage that was caused.
I am blind in my right eye and legally blind in my left eye.
The vision I have left is very different than normal vision.
I see everything in low light. Imagine being in a candlelit room. If a room is not well lit I won’t be able to distinguish things. We have a LOT of bright LED lights, which, for normal sighted folks would make a space annoyingly bright, but for me, simply makes a room appear closer to normal, as far as light.
I cannot read anything normally, especially if it is on white paper, or a white background. I need very high contrast, and I can only read things somewhat with ease if it is white on a black background. Basically, dark mode is my friend! My laptop, desktop, and phone are all adjusted accordingly.
I have no peripheral vision. I almost have tunnel vision. I can find and focus on an item, however, I cannot see anything around it once I am focused on that one thing. If I look away from said item, I will have to “find” it again. I guess you can say I no longer see the big picture. LOL
I also no longer have any depth perception. I have a hard time determining how close an object is. If the curb and the sidewalk are the same color, if I didn’t use my cane I would never know it was a curb. I have also missed the bottom step on more occasions than I care to admit! This is why I now go down stairs on my butt whenever possible (or take the elevator, since going down the stairs on my butt in public might draw a bit of attention).
We have found ways to modify and adjust things to help me do most things. I just do many things differently.
The only thing I cannot do anymore is drive. However, my local government has amazing programs that I can use to get to medical appointments, and, of course, my friends and family all help me SO much. At the end of the day, it isn’t too bad being chauffeured around when necessary. LOL
Lastly, I often get looks of confusion when I say I am blind. People equate blindness with total loss of vision. However, there are varying degrees of blindness. Having some vision doesn’t mean you are not blind. I explain it to people this way – If you have vision loss or damage that cannot be corrected, you are blind.
Since I have not posted to my blog in SO long I thought I would take this opportunity to reintroduce myself and try and answer some of the questions that people may have but never felt comfortable asking.
However, if you have any other questions, ASK! I would rather answer your questions than have you not understand something or draw the wrong conclusion. Knowledge is power!
Oh, and one more thing:
I am not complaining and you do not need to feel bad for me or anything. I love my life.
Everything happens for a reason. I have embraced my “new normal”.
I just wanted to give you a little more insight into My Blind Life.