Portrait: Veronica

My name is Veronica, this is my story. I was diagnosed with arteriovenous malformation (AVM) at the age of twelve. I was born with it, and I never had any symptoms before my arteries ruptured in my brain.

Where Veronica’s story starts

I was an athlete, hoping to make it big one day as a soccer player, and it was the last thing I did right when my life changed. It occurred outside during school where I was playing soccer with my friends. Suddenly, I couldn’t breathe well, and my vision was taken over by what seemed like multiple versions of the same person.

I was taken to the nurse's office, and there was a moment when I couldn’t move my left arm, which I was trying to use to wipe the tears from my face. It was when I noticed my first loss of movement: the use of my left arm. My memory is scattered but, at some point, my left leg was getting weaker, too. I was rushed to the hospital and had immediate surgery on the right side of my brain, where the bleeding had occurred. There was almost too much bleeding, giving me one hour left to live.

Recovering from my life-saving operation

After my operation, I recovered in the ICU. There were several things that I had to relearn all over again: eating, talking, walking, moving my arm, and breathing without the help of the tubes. I had physical, occupational and speech therapy to help me during my recovery. Thankfully, I didn't need speech therapy for long since I had quickly been able to regain my speech, and my memory hadn’t been affected. Physical and occupational therapy is what remained for years, besides the help from the hospital and rehabilitation which I later transferred to.

Undergoing my second operation

I had two operations: the first being when I was initially rushed into the hospital, and the second to put my bone flap - which had been removed and placed in my lower abdomen for safekeeping - back. During my time in the hospital, I learned to breathe on my own and talk. I started to eat and drink again towards the last week of my recovery there, too.

It was my mom, grandma and friends who were my support system and got me through these tough times. I was in the hospital for two weeks. The doctors said it had been one of the fastest recoveries that they'd seen, which might have been due to me being young and athletic.

When I was stable enough, I was transferred to a children's rehabilitation center where myself, my mom and grandma lived for months. I was an inpatient and outpatient for a year.

I experienced many highs and lows

During my recovery journey, I had several highs and many more lows. My highs were the simple things - eating, talking, taking my first few steps again, and living. My lows, to list a few, included minimal progression of movement in my left arm, missing out on more of my childhood, and accepting that my life had completely changed.

To add on to a high note, I had met several others in rehab who also experienced their medical traumas, but we had become a small family and supported each other along the way. This goes back to a low note when I realised that there were too many children of all ages in rehab, trying to get back to "normal," which included myself. I suddenly didn’t have hobbies anymore since therapy was on my schedule non-stop, even after I was discharged from rehab.

Facing reality

It was very difficult returning to the “real” world. I experienced focal seizures a couple of years after my diagnosis and went to several neurologists. Me and my family found it difficult to find a neurologist who wasn’t so dismissive of what I had to say because I was young. It took quite some time to find a neurologist who would listen. Unfortunately, there is very limited help. I had been lucky to have a great physical therapist who was connected with my school district.

Occupational therapy is very difficult to find, let alone a good one who understands how to work with your situation. It is what I found to be the most challenging aspect of finding support. Many don’t understand what it is and don’t think of it as something to major in school, so there are very few around. During my recovery, I struggled to find an occupational therapist because I had several who didn’t know how to help me, since they had never worked with anyone in my situation before.

I found it hard to believe at first, but as I got older, I recognized the lack of information and knowledge on traumatic brain injuries. I hope that doctors and the general public will become more informed on how to help patients with different types of brain injuries.

My hobbies give me an outlet to share my experiences

Throughout my years after rehab, I found a new hobby, which has now become more than that, something I majored in in college - photography. Photography has become a way that I’ve been able to share my life experiences, my struggles and my story. I understood the beauty of it as art rather than a hobby. Reading, though, has become an active hobby of mine again - something I loved doing when I was little.

My advice to others experiencing or recovering from brain injuries

My support group remained to be my mom, grandma and friends. My friends have been a big part of my recovery because they have helped me grow and become a better version of myself. They have been there to listen and lend a hand when I need it. It’s not easy going through a life-changing event such as a brain injury, and that’s why those types of people and friends are needed, so keep them close.

As cliche as it may be, I learned that you have to take one step and one day at a time. It is not easy - nothing is at the end of the day, but we are strong enough to keep pushing forward.

Veronica’s story highlights how brain injury survivors have to fight to find adequate support throughout recovery. At SameYou, we’re dedicated to advocating for people like Veronica so they can maximise their recovery, reagrdless of their age.

Will you join us today and help spread the word so we can drive change for recovery services and neurorehabilitation?

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