Survivor Stories: Gallery

My brain injury occurred in December 1982 when I was 15 years old after I was misdiagnosed with lymphoma.  I actually had a bacterial heart infection that eventually entered my bloodstream and caused a cerebral aneurysm that was leaking blood into my spinal column. Surgeons repaired the leak and as a result I have 5 metal pins in my head and I’ve lost the peripheral vision on the right side of both of my eyes.

When I was discharged from the hospital I was told that I was “fixed” and that I would never have to think about this again.  I had no idea that this would affect my life every day after.  Before this happened, I was on the volleyball and basketball teams.  I was tall so I did pretty well—NO MORE! Reading became a challenge because I would tend to read the same line over again.  My ability to recognize where I was in relation to my surroundings changed.  I would run into things on my right side and sometimes on my left. I got confused in crowds.  People thought I was ignoring them when really, I just didn’t see them.  I can’t see my right hand when I write.  I can’t see someone’s whole face when I look at them.  I always try to sit on the far-right side of a room so I can see everything.  My memory is terrible, especially short-term memory. I’ve learned through the years to adapt to these deficits as best I can while trying not to let anyone know. 

A few years ago I was noticing some changes in my vision.  I saw a neurologist.  A CT scan revealed that I had a “dead spot” or area in my brain that was no longer getting any blood flow and would eventually, with time, get larger and cause symptoms that resemble Alzheimer’s.  I started to subconsciously prepare to literally lose my mind.  I’m only 50 years old and my hope for my future was gone and I became very depressed. Don’t forget, I thought I was “fixed” and would never have to think about this again and yet, years later, sometimes all I can do is think about it!

One day at work my boss showed me a flyer he received about the BIANE Conference to be held in Kearney.  I looked into it further and saw that “cerebral aneurysm” was listed as a type of brain injury.  I had never thought of it that way before.  I was excited to learn more about what was going on with me and my husband, who has been unwavering in his support of me every step of this journey wholeheartedly encouraged me to go. Particularly cathartic was taking part in the “Unmasking Project” for the traveling exhibit.  I created a mask that showed how I felt about my personal journey with a brain injury.  I left that conference even more excited about what I had learned and what I realized was certainly part of God’s plan for my life!  I have started attending the support group here in Kearney and I am so grateful to have somewhere I can go to talk to others that have the challenges I have.  It makes me cry just talking about it!

I am DONE hiding my brain injury and I am ready to use this experience to give hope to others.  I know that my fellow group members will become friends as we continue our journey together.  I look forward to what we can all learn from each other.  I have HOPE again and I’m ready to take my life back!