My Blind Life

My Story

Hello!

So, just a little bit of history about how this became My Blind Life…

When I was an infant, I developed hydrocephalus; which is excess fluid on the brain. I had a VP shunt installed,
which drained the excess fluid from my brain. When I was a young child, the doctors told me I had outgrown my condition and no longer needed the shunt.For the last 15 to 20 years, I suffered from chronic neck and back pain. The doctors had been unable to determine a cause for it, so I simply used pain management. I also suffered from recurring sinus headaches.

In May 2017, my husband and I went on vacation to Mexico. While on vacation, I inexplicably lost use of my legs.
By the time we arrived home, I could not walk at all and my husband had to carry me to use the bathroom.
He took me to the local ER and I was admitted. They diagnosed me with Guillain Barre Syndrome; an auto immune syndrome that attacks the body’s nervous system.

Soon, I began intermittently losing my vision. The doctors did not understand what was causing this. So, after several weeks of being paralyzed from the waist down, and having periodic blindness, my husband had me moved to Johns Hopkins Medical Center.

Within a day of being admitted to Johns Hopkins, I was completely and totally blind. The neurosurgeon determined that, my shunt, which had been deemed no longer necessary, actually WAS still necessary, and had been malfunctioning for quite some time. This led to pressure building up on the back of my eyes, which led to my vision loss. I was rushed into surgery and my shunt was replaced.

Almost immediately, my back and neck pain ceased. So, while I no longer had back pain, I was still totally blind and had no use of my legs. My arms also began to lose strength.

The doctors explained that the shunt malfunctioning had led to pressure to build up on my optic nerves. This pressure resulted in my blindness. After the shunt was replaced, the pressure would slowly be released and the hope was that my vision would return. Ultimately, we learned that many of my optic nerves died. So, after 3 months of total blindness, while some of my vision has returned, I am still considered legally blind and can no longer drive.

I was in Johns Hopkins for almost 3 months. I was in physical therapy/rehabilitation for weeks to learn how to walk again. After months in a wheelchair, and weeks using a walker, now I am able to walk with the use of a cane.

I am still recovering from Guillain Barre Syndrome, which has left me very weak and with mobility issues. I struggle to lift a 5-pound dumbbell. This, after being an avid CrossFit student, and a fitness instructor!

Today, although legally blind, I am able to see a bit and enough to function, for the most part. My mobility continues to improve, but is still quite a hindrance. I am considered disabled now.

I am telling you my story, not because I want sympathy. I have continuously been told that I am such a positive person and that my attitude is what has helped in my recovery. Since this all began, my husband has chronicled my journey via my Facebook profile. I recorded a video just hours after my neurosurgery, to let my friends know what was going on. I posted regular updates and videos of me doing my physical therapy.

We used #MCSTRONG whenever we posted any updates relevant to my journey. My friends began to use it as well.

Thank you so much for your time and for reading my story!
This is a link to the video that I posted on Facebook, just hours after my brain surgery.

The main take away is this: life doesn’t offer roadblocks. It offers detours and challenges that, if we choose to let them, can make us stronger.

19 thoughts on “My Story”

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