Hi All.
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!
Christina
All of these comments give me pause, praying for each one, suffering different issues and yet, having somewhat the same experiences. I think it’s wonderful that you have found each other and can share your ups and downs and have someone to lean on, even in your darkest hours.
Christina, you are wonderful to put yourself out there for others. We are all blessed to have you in our lives.
Hi Christina! I just happened upon your blog and do not know your back history, but it is one of familiar territory for me, having Chiari, EDS and ICP/pseudotumor. It does take strength to get where we are today, but we have to vent and let it out so as not to consume us. It is a rollercoaster ride for sure, but not of the fun kind! I started with major vision issues in my late teens, early twenties and was prescribed bifocals so that I could work at the computer. We never connected any of my other issues (migraines, passing out, spine pain, allergic reactions) to my weird eyesight problems until I was finally diagnosed with the Chiari in 1997. I did not get distance lenses until my forties. I did try contacts, but my eye muscles worked against me with the spasming and it was just not worth it to me. I will continue getting my glasses changed every year. Unfortunately, we all suffer, differently, but still compromising issues. I am so sorry that your vision has been so badly compromised. I know there is a way around it (my therapist is legally blind and uses a computer that talks to her), but I know also that it comes at a cost. So, continue the fight, but definitely release the buildup so that it does not consume you. We are not our illness, even though they do control us. Sending gentle hugs.
Lycia
I’m crying tears, bawling as I write this now. My dear chiari warrior have I gone legally blind in September after a fierce fight with all my might and carrying the chiari. You wrote everything I wish I could have…
I felt so very alone in many scary moments of 2015 and never wished ANYONE to feel what my journey has brought ; but each keystroke I read brought me closer to your story than anyone.
You have walked an almost identical path of fight as I have and it makes me feel as if I have found a kindred soul in an ocean of darkness.
I have thought so many of your same thoughts!
I smile behind the fear and the pain.
I show up even when I don’t want to.
I continue to push my body fiercely with a stubborn banter.
I try every treatment valiantly.
I watch my defeated doctors faces when they had bad news, begging them to not give up the fight because I’m not ready to.
I feel jealous of watching my life crumble away from its dreams .
I have days of greatness but at such a cost to my body later.
I have low vision left and am battling with accepting it might go at any moment while knowing there’s nothing more to do and I am so deeply touched by your honesty and truth.
Please reach out to me in the darkness…. I will try to be a buoy in the shit storm with you and we won’t tell each other to be strong because we already know… But will hold you up if you need a hand I the darkness.
To my new kindred chiari warrior I leave you with love in my heart for a person I’ve never met but know so profoundly
Hi Hannah!
I am so so touched by your comment, I started crying. You and people like you are the whole reason I started this blog. So many people feel scared and alone, and I want to help that one person at a time. Please make sure you find me on face book!
I just stumbled upon your blog….just wanted to add that years before I got diagnosed with Chiari I had rapidly deteriorating eyesight – glasses at 6 and bifocals by 10…years later found gas permeable contacts kept me from deteriorating…I guess it’s an EDS thing.
Hi Christie!
I wont hold it against you that you spell your name wrong 😉 Just kidding 🙂 I spell mine Christy lol. I am so grateful that you found my blog. The blindness can be EDS related too. I also have EDS, and it sucks! Hope to hear more from you!
Girl, you ARE strong but sometimes that is not enough. I praise God that you have someone to rant and rave to who can be strong for you!
I am glad I met you and get to be a part of your life as well. With all you go through yet keep going, you are encouragement to me, whose struggles are nothing in comparison!
Oh janet! I wouldn’t even have this blog if it wasn’t for you!
Thank you for sharing your story. I’m sure it helped so many others who are going through much of the same. My vision problems have been getting worse, but my decompression surgery is scheduled for the 22nd of this month and I’m hoping that there could be a positive outcome in regards to the vision issue. I mostly had a hard time working on my computer right now. I’ve always been nearsighted so I wear glasses but now that I’m over 40 I have to take my glasses off a lot to read things that are close. The computer is given me a lot of trouble because with or without my glasses I’m still struggling and trying to adjust the screen to the right size that I can see comfortably. It doesn’t seem that this is normal, so I do believe it has to do with my Chiari. One day at a time.
Hi Jenna! When I started having sight issues ( been near sighted since I was a child) my dr. got me readers. It helped with the upclose vision and computer work. It might be something to consider! Good luck on your surgery. You are on my prayer list! Please read through the rest of the blog, and if you have any questions, please feel free to contact me.