Today’s post isn’t a very positive one. I had to go to the eye doctor six times since September. After three pairs of glasses, a failed pair of bifocals, and three eye exams later, I found out I am legally blind. It’s a condition called Cortical Blindness. The part of your brain that controls vision is the Visual Cortex.
Apparently, with all the brain swelling, pressure changes, and surgery, this part of my brain has been damaged beyond repair. My physical eyes themselves are healthy. As you can imagine, this has been a very overwhelming situation to process. Not only does it affect my life, but the lives of my family, friends, and all of the Chiari community that I counsel on a daily basis. I’m sure, dear reader, you can understand that I am finding it very hard to be the Positive Chiarian I am known for being.
I have been spending the past week wallowing in self pity, trying to figure out what this means going forward with advocating, writing the blog, and counseling. My eye doctor, Dr. Smith, has been so warm and kind through the whole process. She and her staff have taken an abundance of their time helping me to navigate what I am going through. If you live in Central Pennsylvania, I highly recommend them. Dr. Smith is also helping me to find the help I need to relearn how to do things without vision.
Going through everything that I have lately, my spirit has been in the toilet. I have the dearest friend, Sheryl, who is always available to listen to me rant, rave, cry and laugh. We found each other on the internet, and have never actually met in person! This is what I emailed to her when I got my final diagnosis.
“Everyone keeps telling me what a strong, positive person I am, and they KNOW I will get through it. I just want to tell them to shut up. Not to be mean, but I just can’t deal right now. If it was one thing, it would be different. But my body is failing me, and now loosing my sight? These conditions have and continue to rob me of so much. I have no distraction now. I can’t really write my blog. My eyes hurt so much anymore I just have to sit with an ice pack or cold rag. I can’t sew, paint, draw, read, cook, drive, walk much, bath or dress myself, talk on the phone, text ect.”
I felt horrible saying these things to her. Sheryl has so many issues of her own and she always has a kind word for me. This was her response:
“…You whine, rant and rave all you want…do whatever it takes to get it off your chest. And, I know, because this is chronic, you NEED to whine and rant and rave often. I’m here to listen. I wish there were some words of wisdom to share with you, but I guess the best thing is to just be here and listen, and let you share with me. I can understand that you no longer want to hear how strong you are, you already know that to get to this point in your life, of course, you have been strong and persevered. It’s those of us who are ignorant of each and every aspect of your life, who say stupid things, thinking that we are being encouraging…”
Isn’t she amazing? She is so fully of sage advice and so very modest. I felt like a complete arse after reading her email. I truly don’t know what I would do without her!
I am looking into software that will allow me to use my computer without having to see what I am doing, but at this time, it’s a bit cost prohibitive. contrary to what some people think, I don’t get paid to blog. I also never charge any “patient” who comes to me for advice or help. Everything I do is done out of love, and wanting to help others. I know how I felt when I was diagnosed, and there was no information available to me. No one should ever feel alone trying to understand Chiari and everything that goes with it.
What I want to get across to you dear reader is this, no matter what our respective conditions do to us, no matter how hard they try to break us down, make us wish we were dead, or feel like we can’t keep going, know that you ARE STRONG. In the words of my dear Sheryl,
“You already know that to get to this point in your life…you have been strong and persevered.”
Stay positive dear readers!