All in your head

Whilst undergoing neurosurgery, 24 year old Abby Jarman set herself a goal to raise $200 for SameYou and to get people talking about brain injury. She has raised a total of $3,000 so far and is still going! We think Abby is an amazing young lady and a beacon of light for brain injury survivors and their loved ones and that is why she is our supporter of the month.

I find SameYou’s mission personally meaningful because I’ve been dealing with a brain injury called acquired Chiari since I was seventeen. This means that I developed a cerebellar herniation that compressed my brain stem, obstructed my CSF flow, and caused a lot of serious systemic problems “downstream” from my brain. While preparing for surgery to remove this part of my cerebellum, I decided to fundraise for SameYou in the hopes that I could contribute to making crucial neurorehabilitation services more accessible to fellow survivors.

Having a brain injury as a teenager was challenging because most of my peers were yet to go through that type of all-encompassing hardship, the kind where no part of your life is untouched by it. My mom and I refer to it as living behind the plexiglass. You know how in TV prison they have those booths with the glass between the prisoner and the visitor and the little phones on each side? Once you’ve experienced a Terrible Thing, communicating about your life with someone on the other side of the glass—the “free to go” side—can feel about as impossible as explaining colour to someone who only sees in black and white. Needless to say, the experience was extremely isolating. I was watching all my friends go through freshers week on social media, date, go on travel study, find jobs—moving forward when I felt frozen where I was. When they would ask what was going on with me, what could I say? It felt very much like suspended animation.

For the past seven years, I have been grieving for who I was, but, most of all, who I could have been if I were healthy—cycling through the stages of grief nonstop. I’ve tried to linger in acceptance as long as I can, but sometimes denial felt like the only way to survive. When I became ill, my identity and life transformed into something I struggled to recognise. Old relationships didn’t make it. My vision of the future fogged up. How I interacted with the world. How the world saw me. It all changed. Society now saw me as Sick Abby—and I really struggled to not see myself in that way too. Sometimes it felt like the worst ‘before and after makeover’ in history. Healthy Abby and Sick Abby. I still fantasise about really simple stupid things like what I would be reading, going grocery shopping, standing in the shower, and working out.

The before and after change wasn’t all for the worse, though. While I don’t believe these experiences are ever “worth it,” I really value the increased capacity for empathy and compassion that I have developed as a result.

I think I have a better grip on what matters and what is just the bric-a-brac of life. My experiences have shown me that things like what people think about me shouldn’t give me panic attacks. And I do think these anxieties have started to hold less power over me with time.

Since my surgery in July 2020, I have been working with various rehabilitation experts to repair/retrain my brain and central nervous system. It’s likely not a cure, but we are hopeful it will alleviate some of my neurological symptoms. I am cautiously optimistic. I have had glimpses of increased energy and lessened brain fog. However, I've been sick for 7 years and am quite thoroughly deconditioned, so the rehabilitation process is going to be a long one. I don’t know if I can make a full recovery, but I am confident I can work towards improvements.

In September, my mom Heather and I started a blog called Headstrong to continue the work of raising awareness and decreasing the shame and stigma around brain injury. Our goal is to provide a space for those of us who have gone through these experiences to share their stories and feel seen, and to give everyone else a chance to read these stories to foster empathy and understanding.

I want to open eyes to the often invisible needs of survivors and their caregivers, in the hopes that we can encourage even one person to show up for those affected by brain injury (and other neurological conditions) in their own life.  

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If you would like to suppoprt Abby's fundraiser, you can donate here.

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