Sandi’s Story – Victoria Brain Injury Society

This story highlights the importance of the vital work of organizations like the Victoria Brain Injury Society (VBIS) in our community. This story was written by VBIS volunteer Gray Leigh, as told to him by Sandi Barry. We're thankful to Sandi for sharing her experience with us.

Ever since suffering a brain hemorrhage my path in life came to a stop. I've had to figure out how to cope with a brain that doesn't work the same anymore and, as a result, reassess my career goals. My relationship with the world has not been soured by the brain injury I've endured but I have entered in and out of the various stages of grief as I come to accept that my brain doesn't work the same as it did before. 

I have the misfortune of suffering from an ailment that is hidden and whose origin cannot be explained. A neurosurgeon performed an angiogram (using a tiny camera inside my brain to look for a burst aneurysm) but this exploration did not find the reason for the sudden bleeding that has since changed my life.

I have what I call "weirdo symptoms" that come when my brain is tired and overloaded. I have trouble sustaining attention and great difficulty multitasking. I have something called hyperacusis (very sensitive hearing), and I can't filter out sounds when trying to focus on one thing. For example, while trying to focus on a conversation, I get muddled when there is music, TV, or other conversations happening around me. All of that drains the energy from my brain and brings on fatigue. From there I experience sore and heavy legs, constant thirst, blurry vision, headaches, and other strange things. I was not warned about any of this.

Something that I've found to be quite surprising is how little information I was given about possible long term effects from my brain bleed. Either very little is known by medical professionals or information is just not readily given out. Much of what I've learned has been through my own reaching out for information and explanations for why I wasn't recovering.

My neurologist told me I would recover 100%. I clung onto those words. When I wasn't 100% recovered at 3 months, then 6 months, then 1 year, and then 2 years I finally gave in and left my job. I was unable to continue in a full time management position. At no point was I ever referred to the Victoria Brain Injury Society.

I found the Victoria Brain Injury Society (VBIS) on the Internet. While there is no foreseeable end to my "weirdo" symptoms, I'm blessed with the knowledge that non-profit organizations like the VBIS are determined to help people. In the VBIS Coping Strategies program, generously funded by the Victoria Foundation, I've learned that my long term effects are commonly reported by those with brain injury and there are ways to cope with and manage these symptoms. What a relief to learn that what I experience is not unheard of and there are others like me! VBIS introduced me to a network of people who shared in my new reality, a saving grace that has accelerated my learning how to accept and live with my "new brain". 

For a person who survived an incident where there existed a 50% chance of death, I consider myself very fortunate to still be wearing a smile today. The Coping Strategies program has instilled in me a sense of relentless positivity. I can still experience a happy and rewarding life, and when my "weirdo symptoms" creep up daily I know what it means and what I have to do to keep my "new brain" healthy.