Writing my brain injury story for Instagram

<<Image description: On a light, cerulean-blue background is a cute graphic created by Side X Side Studio of hands holding a pink brain surrounded by two yellow hearts. Beside the graphic is a quote from the blog post. It reads: “Then a tennis ball hit me in the right temple and what started out as nothing tuned into the mandalas on the tent walls coalescing in psychedelic motion.”>>

March is Brain Injury Awareness Month and every year Brain Injury Association of America hosts a social media campaign encouraging individuals to share their stories. This year I decided to write out my full story for Instagram (IG). I’d shared bits and pieces of course, but I hadn’t shared a from-start-to-now version of my brain health journey.

Writing my story using the word count (less than 400) allotted by IG sounded way too hard, so I let myself free write the first draft with the intention of editing it until it met the requirements. The problem was I loved what I wrote that first go and didn’t want to loose more than half of it. So I made a copy to preserve my words and saved it to expand upon later.

It is now September and the 15th is National Concussion Awareness Day, so I’ve decided that later is now.

………

My name is Elisa and l’ve been chronically ill for most of my twenties. This is my story.

I don’t think I’d ever been so happy than in the weeks leading up to October 28, 2016. Mornings spent in quiet reflection with a cup of chai, the mist emphasizing that I was indeed in an Indian Jungle. Afternoons spent in service to a community and culture so different from my own. Nights spent getting to know people who would become life-long friends.

Yes, I was so happy. And then I wasn’t.

Then a tennis ball hit me in the right temple and what started out as nothing turned into my legs feeling funny, turned into a long nap, turned into the mandalas on the tent walls coalescing in psychedelic motion. What was supposed to be an eleven-month mission trip turned into a two-month one, with most of that time spent out of the field attempting to “rest away” my concussion symptoms.

Right before the start of December, I said goodbye to my new friends and flew by myself from Kathmandu, Nepal back to Los Angeles while the rest of the group continued on to Vietnam. Never in my life have I been more heartbroken.

2017-2018 were a blur of physical pain, doctors appointments, my dark
little room and no answers- not what was happening to me, not why, and especially not for how long.

I got so depressed at one point that my therapist reffered me to a psychiatric out-patient program.

In 2020, I saw a practitioner who told me to follow one of her former patients on IG because they were using their account for concussion education. From that one account, I found a community of people who were like me- whose concussion symptoms never went away or improved. And what was more. This phenomenon, this condition had a name. Post-concussion syndrome (PCS).

All of the MD professionals I was currently seeing were treating me for what they deemed were chronic, 24/7 migraines. I was told I was too far removed from the 2016 concussion for anyone to do anything about it, so the best they could do was treat my “headaches.”

My health started changing once I reframed how I approached my healing. I began seeking treatments to heal my brain and neck from the initial blow and resulting whiplash, and moved completely away from the migraine angle.

This would not have been possible without following concussion-savvy practitioners on IG and eventually investing in one of their online programs. Through that program, I learned more about how my brain and body were affected by past concussions and how to best find care and advocate for myself in a world where post-concussion treatment is far from accessible.

I am still on my healing journey, but the fact that I have confidence and direction for my medical treatment is beyond amazing.

I am now able to write, edit and publish blog posts and run my own IG account. Not that long ago I would lay in bed dreaming of when I could write again. I can’t tell you how many drafts I composed behind closed eyelids.

My story would not be complete without mentioning my emotional and spiritual progress. In my early twenties, I put all my confidence in my physicality and skills- what I could accomplish and how well I could preform. This is one of the reasons I got so depressed in 2018. My confidence came from things that could and did change in an instant.

Today I am working on putting my hope and confidence in what will never change and for me that’s what comes after this life. Jesus promises that one day there will be no more pain and suffering. Everything in this world that makes my heart ache, soul cry and body malfunction will be made right. When nothing in my life is going right, when I’m so far from OK that I marvel at the horror, the only thing I can count on is the promised paradise.

I love the #morethanmybraininjury campaign because there is so much more to a person than an accident, injury or disability. One of the reason’s I chose not to create a second IG account for my advocacy is because I want people to see that it’s possible to be a person who hikes in Death Valley, sees shows on Broadway and preforms bridesmaid duties, while still being a person who stutters when fatigued, gets overstimulated easily, has to sit in the shower to wash her hair, and hasn’t earned a paycheck in six years.

People with visible and invisible disabilities lead increadibly complex, creative and beautiful lives. My desire is for all of us to see and be seen.

My name is Elisa and this is my story. Thank you for being part of it.

………

Since writing this back in March, I’ve have regained the required energy and screen-time capacity to begin filming and editing TikTok and YouTube videos on top of what I was already doing. My ultimate goals of working part-time and driving still seem very far away, but in revisiting this piece I am able to see how far I’ve come and I’m creating space for gratitude.

May you also find it within yourself to pause and be thankful for the progress you’ve made.

Love Always,

Elisa

2 responses to “Writing my brain injury story for Instagram”

  1. Beautifully written as always! Thank you for sharing your journey.

    Like

  2. Beautifully written as always! Thank you for sharing your journey.

    Like

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