Washington DC, July 3rd, 2018 – It is 6:30pm ET when I sit down at my friend Jeison’s desktop on the marble counter between the living room and the kitchen. Jeison is chopping onions to prepare us arroz con chuleta for dinner. Sean is heading downstairs to get our friend Alyssa and her pup Cooper, as the two will be babysitting the adorable apricot cavapoo when Alyssa heads to the beach for her 4th of July holiday. The fragrance of savory simmering pork fills the air. I am enjoying this snapshot in time. I am grateful for the ability to enjoy these scents, in the company of friends who understand what this day signifies: the 5 year anniversary of my life as a severe traumatic brain injury survivor.
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Madison, WI, July 3rd, 2013 – Same time this year five years ago, I was lying in the neuro-ICU, hovering between critically dying and strenuously surviving. I cannot describe this day to you, because I was unconscious. If you were to ask me what happened, I cannot confidently tell you because I simply do not remember. I postulate that I fell while longboarding. My medical records say I was diagnosed with a subarachnoid carotid fistula and epidural hematoma. In fact not until I indefinitely woke up, did I realize not only did I not know how the injury happened, I also did not understand or recall my entire life before the accident – which I now come to understand is what retrograde amnesia is.
When I tried to sit up and my mind was foggy with a pounding headache, I realized something was wrong with my mind. When someone talked to me and I only registered sound from my left ear and couldn’t understand them, is when I realized I was temporarily deaf in my right ear with blood clotting the entire ear canal. When I tried to go to the bathroom, couldn’t walk straight, and was tethered to an IV pole, is when I realized I couldn’t walk properly. When I bit into a turkey sandwich and sipped on cranberry juice and neither of them tasted like anything, I remember thinking, “I heard hospital cafeteria food was bad, but it really is very bland.” It wasn’t until I saw an ENT later, is when it was determined that my olfactory neurons were severed and that I was an anosmiac. It wasn’t until I started living, until I realized what I was missing and what challenges I gained. More about my background can be read here: https://www.themindreset.com/why_we_started/.
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La Hacienda, Ecuador, July 3rd, 2014 – Same time four years ago, I was sitting in the parlor of La Hacienda in Ecuador, wrapping up 6 weeks of what felt like 42 perfect days. I still reminisce on that experience with great fondness and gratitude. During those days I truly felt like I was one with nature, with people, and living life to the fullest. On my social media I was really proud of how my physical health was improving:
[Facebook Post: July 3rd marks a very pivotal day for me. A day that denotes exactly one year ago when I fell while longboarding and hit my head//an accident that would change my life forever.
Then began the most difficult year of my life, a confusing recovery where I attempted to get to know my new self: someone that lived with only 3.5 senses, someone that had memory gaps and hearing problems, someone who was dizzy, couldn’t walk properly, didn’t trust herself and lived in fear of having a stroke, hitting her head to become more dilapidated, and being unable to feel true emotions.
This year, I decided to take a trip to Ecuador to learn about the culture and medical practices that reside in different areas within the country. Not only did it give me an opportunity to understand other people’s lives in a more intimate way, but it gave me the opportunity to learn about myself and take a step back from my hectic life in the United States. I was learning about two unfamiliar lives: Ecuadorean and my own.
This past week was nothing short of amazing. I summited Machu Picchu Mountain solo in less than half the time estimated to climb the mountain. It was one of the most incredible experiences I’ve ever had. I felt so accomplished: it was the first time I had pushed myself physically since my accident.
Given, it was very difficult. I used my rescue inhaler 3 times and had to blow my snotty nose repeatedly. But it was the support of other climbers, their encouragement and concern that really helped me get to the top in a timely manner.
Sometimes I think recovery can be a lot like a mountain. It can be a difficult journey, but it is certainly doable. And it is only that much easier with the support and understanding of your peers.
On my last day in Ecuador and the anniversary of my life-changing event, I would like to thank all my friends, old and new, my family members, and all those who have shown and shared true understanding, empathy, and happiness with me.
My accident has spurred me to live my life to the fullest and do as much as I can to fulfill my life dream of improving health for everyone in my global community. I truly understand the value of good health and I encourage others to find their personal happiness as well. Stay healthy and ama la vida 💜¡Muchísimas gracias a toda mi vida!]
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Watertown, WI, July 3rd, 2015 – Same time three years ago, I was in rural Wisconsin shooting shotguns, playing cornhole, ripping through the woods on ATVs, and beginning to go through the hardest time in my life. Not to go into it deeply, I just completed my most difficult year of pharmacy school, I was being relationally bullied by my best friend and all my other close friends were feeding into it, I was discovering that my boyfriend at the time was a bystander and was encouraging behaviors that I knew I wouldn’t be proud of, my symptoms of neuropathy were really coming to light, and I was trying medications to treat symptoms that were affecting my daily functioning that were having some really negative side effects, including suicidal ideation. These combination of circumstances and risk factors for poor mental health made me really hopeless and I had to learn how to be the opposite of that. I made a contract with myself that I only had to try and survive for the next couple of years, until I finished pharmacy school, or until 5 years of my life to see how I was doing then. If it was still miserable, then maybe it wasn’t worth going on. It was the beginning of a really dark era. I think I may have known this and posted this on my social media to remind myself of what I wanted to focus on:
[Facebook Post: It is two years today and I am so grateful. So very grateful that I got a second chance at life. There are not enough words to express my appreciation to those who have been patient, thoughtful, and as understanding as one can be for someone going through a long and kind of scary healing process like my own. There are so many people I could thank without them knowing that they have done anything. But the smalls things, the smallest acts of kindness and support have been just as meaningful to me as the larger gestures. I am grateful to be living the life that I do and to be surrounded by people with positive aspirations for themselves, their communities, and the world. Remember to thank those who have made a positive difference in your life, as I would like to thank you now. By sharing your positive presence on this Earth, that is what truly makes this world feel like a beautiful and brighter place. Uplift those around you and show me those smiles! They are one of the best things you can share with everyone 🙂]
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Albany, WI, July 3rd, 2016 – Same time two years ago, I had just went through the hardest year of my TBI journey to date. I had practiced something I call “Anchor Theory” to anchor myself to life in circumstances where I didn’t see the point, I was really focused on how to overcome my chronic PTSD, and I had started interacting more with my brain injury, stroke, and epilepsy peers. Specifically on the third of July, I had just went tubing down Sugar River with a bunch of my buds, went on my first date with my current boyfriend of two years, and was just about to go to Colorado to sort out some really confusing feelings with the first person I fell in love with during my “second lifetime”. Here is a social media post after that trip:
[Facebook Post: Sometimes life feels like an uphill climb, but then you learn how to roll with the rocks. Thanks for the open skies & a cleared mind Colorado!! ⛰💕 — at Flatirons- Chautauqua Park.]
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Nate’s Place, NJ, July 3rd, 2017 – Same time one year ago, I had just moved to DC and was spending my fourth of July in New Jersey.
After going to New York, Point Pleasant Beach, and eating delicious lobster, I spent a day with my friend Nate from pharmacy school grilling out in his courtyard. I remember receiving a call from my Madison brain injury support group facilitator that weekend about how one of my friends in the group had got into a motorcycle accident. This was my, and many people with TBI’s worst nightmare, having a circumstance that would bring us back to square one.
I remember walking through the cul-de-sac of Nate’s apartment complexes chatting on the phone with my recently hospitalized friend. He shared with me how much I had done for him and I was deeply inspired and intrigued by our symbiotic relationship. This was the first time I applied “Anchor Theory” to another person. I wanted to anchor him to live because I didn’t want to lose him. I didn’t want him to lose hope. I remember how that was the day I decided that I didn’t want to be “DNR” or “Do Not Resuscitate” anymore. Before this day, I thought that if I had another brain hemorrhage or stroke that I wouldn’t want to be saved. I did not want to go through the h*ll that was my life prior to this day again. However, after understanding how much I wanted my friend to overcome his circumstances, I knew that I would have to be willing to do the same for others if I were in a similar situation.
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Washington DC, July 3rd, 2018 – It is today. I just finished my non-traditional pharmacy residency as the American Pharmacists Association Executive Resident last Friday. I am the most determined and confident in my abilities than I ever was before. I remember sitting down with my main lunch buddy and telling him about a month ago how I was starting to have “living people problems.” He laughed and teased me, just as I expected he would.
But truly, I am amazed. I had been living life in reverse, coming from the palliative dying space where I was living day-to-day, from year-to-year, into the place where I am now…a place where I feel like living people do, and I can have more long-term goals!
These last 5 years were very difficult, but they did get easier, and they made me who I am now. Today I start another contract for 5 more years, maybe more. I will continue to be grateful, I will continue to grow, and I will continue figuring out how to take others along with me, like through this MindReset Community. No matter how many more days I live, I will end each day knowing I am capable, I am resilient, and I am hopeful. Thank you to all who continue to bring hope to my life and to those around us.
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2 thoughts on “A reflection on 5 years as a TBI survivor”
As of June it’s been 23 years since I had my TBI. Yes it’s been tough but yet I keep on going. Of course I like to help others within their difficulties with life after having a TBI. I feel as if I have helped one other person who has attained a TBI. And this person who I feel I have once helped has helped me also last year when I had obtained a second TBI with a motorcycle accident. There is so much more I would like to share but I believe I will on a later date.
Thank you very much, Shawn, for sharing your perspectives! You truly are an inspiration 🙂 Thank you for your helpful and optimistic attitude.