I Was 18 When I Found Out I Had an AVM
I was 18 years old when I found out I had an AVM, and the way I found out is still kind of crazy to think about. I was goofing around in my high school theater class when another student pulled me off the stage. I hit my head on the stage and then fell about four feet to the ground. I went to the school nurse afterward, but at the time everything seemed okay, so I went back to my dorm and didn't think too much of it. The next morning was completely different...
I woke up feeling off balance, almost fell, and realized my right side was numb. I went back to the school nurse, who took me to the local hospital, and at first they told me I should basically go home and sleep it off. Thankfully, my Mom knew something wasn't right and demanded that they do a CT scan. That decision changed everything...
The CT scan showed that I had something in my brain, either a tumor or a bleed. I was airlifted to Flagstaff Hospital, where I got transported down to Barrow Neurological Institute in Phoenix. Here we learned that I had an AVM (arteriovenous malformation), located deep in my thalamus and that I also had three brain aneurysms. I went from being an 18-year-old high school student thinking about all the normal things someone that age thinks about to suddenly having doctors explain what was happening inside my brain and why there wasn't an easy solution. Because of the location of my AVM, there wasn't much they could safely do at the time, so I was essentially told to go live my life.
And that's what I did for the next four years. I went to school, worked, traveled, spent time with my friends, and continued planning the future I thought I was going to have. I think that's one of the strange things about living with an AVM that people don't always understand. Your life can look completely normal from the outside while you know there is something inside your brain that could potentially change everything. I knew my AVM was there, but I also didn't want it to stop me from having a future, and at that point I had a very specific idea of what that future was going to be.
I wanted to go to law school, and I worked incredibly hard toward that goal. I applied and eventually got accepted to ASU's Sandra Day O'Connor College of Law, where I was supposed to start in the fall of 2021. I had spent years imagining that next chapter of my life, and for the first time it felt like everything I had been working toward was actually happening. I thought I knew where I was going, what career I wanted, and what the next several years of my life were going to look like. Then, just a few months before I was supposed to start law school, all of those plans changed.
On May 29, 2021, I came home from Los Angeles, where I had been helping teach a blood pattern analysis class with forensic personnel and law enforcement. While I was there, I remember FaceTiming my Mom and crying because I just didn't feel right. I couldn't really explain what was wrong, and there wasn't one specific thing I could point to. I just felt bleh, which is probably the simplest way I can describe it. The next day, May 30, my AVM hemorrhaged and I suffered a massive stroke. I was 22 years old.
Instead of getting ready to start law school, I found myself back at Barrow Neurological Institute, this time in the Neuro-ICU and then inpatient rehabilitation. My life suddenly became about physical therapy, occupational therapy, speech therapy, doctors, rehabilitation, and learning how to function in a body that worked completely differently than it had before. My right side was affected, and I developed aphasia, which affects my ability to communicate and find the words I want to say. Recovery required me to learn how to do things I had never imagined I would have to think about at 22 years old, while at the same time trying to process the fact that the future I had worked so hard toward was no longer waiting for me.
For a long time, I think I viewed recovery as a way to get back to the person I was before my stroke. If I just worked hard enough in therapy, maybe I could get my old body back, my old independence back, my old plans back, and eventually get back to the version of myself who was going to law school. I compared myself constantly to who I had been before May 30, and that can be an exhausting way to live because every accomplishment is measured against something you used to be able to do rather than how far you've actually come.
More than five years later, I am still recovering, and I think that's something else people don't always understand about stroke. Recovery doesn't have a clean ending!!!!!!!!!! My right side is still something I work on, I still have aphasia, and there are still moments when I know exactly what I want to say but my brain won't give me the word I need. There are things I miss about my life before my stroke, and there are still times when I grieve the future I thought I was going to have. At the same time, I've slowly realized that grieving my old life doesn't mean I can't be excited about the life I'm creating now. Both things can exist at the same time.
That realization is a huge part of how Living With An AVM became what it is today. What started as me sharing my own experience online grew into a community of people who understood pieces of my story in a way that most people couldn't, and Living With An AVM is now a registered 501(c)(3) nonprofit organization. The future I'm working toward today isn't law school. I'm working toward creating scholarship based retreats in Sedona for young adults ages 18–36 affected by AVMs and hemorrhagic stroke, where people can spend a few days connecting, trying new experiences, building friendships, and being around others who understand what it is like to have your life change at a young age.
I'm also working toward becoming an inspirational speaker, which feels almost ironic considering I still live with aphasia. There are days when finding the right word can be difficult for me, and yet I feel more strongly than ever that I'm supposed to use my voice. I want to speak to survivors, families, healthcare professionals, students, and anyone who has had their life turn out differently than they expected. I want to talk about AVMs and stroke, but I also want to talk about grief, identity, recovery, and what happens when you have to figure out who you are after the future you planned for yourself changes.
All of that is why this October feels especially important to me. October is AVM Awareness Month, and this year Living With An AVM is launching something I hope will become an annual campaign called 31 Days of AVM Awareness: 31 Days. 31 Conversations. One Community. Instead of making one post about AVMs and moving on, I want to spend the entire month talking about what it actually means to live with one. Some days will focus on education, while others will talk about hemorrhage, stroke, treatment, rehabilitation, aphasia, and the parts of recovery people don't always see.
Most importantly, though, I don't want these 31 days to only be about my story. My experience is one AVM story, but there are so many others. There are people who were diagnosed yesterday and people who have lived with their AVM for decades. There are people who have undergone treatment, people waiting for treatment, people whose AVMs have hemorrhaged, people recovering from strokes, and people who have never experienced a rupture at all. There are families, caregivers, therapists, doctors, and friends whose lives have also been affected, and I want October to give more of those people a place to share what this experience actually looks like.
When I was diagnosed at 18, I didn't know another person my age who had an AVM. After my stroke at 22, that loneliness became even more noticeable because so many people my age were starting careers, going to graduate school, traveling, dating, and figuring out adulthood while I was figuring out rehabilitation. The people around me loved me and wanted to support me, but loving someone and truly understanding what they're experiencing aren't always the same thing. Finding other survivors showed me how powerful it can be to talk to someone who doesn't need a long explanation because, in some way, they already get it.
That's ultimately what I want Living With An AVM to create, both online and eventually through our retreats. I want someone who has just been diagnosed to find us and realize that they aren't the only one. I want someone struggling through recovery to see another survivor five years later and understand that recovery can keep happening. I want people who know nothing about AVMs to learn what they are, and I want the people who do live with them to feel like their experiences are being represented by actual people and not just medical definitions.
A phrase that has become really important to me through all of this is Alive on Purpose. For me, that doesn't mean believing my stroke happened for a reason, because I don't. My stroke took a lot from me, changed the direction of my life, and forced me to grieve things I never expected to lose. Alive on Purpose is about what comes after that. I'm alive, and I get to decide what I want to do with the life I have now. I can use my voice even when aphasia makes that voice harder to use. I can create something for other survivors. I can travel, speak, build retreats, try things that scare me, and continue discovering who I am instead of spending the rest of my life trying to become exactly who I was before.
At 18, I thought I knew exactly what my future would look like. At 22, that future changed in a single day. Now, more than five years later, I don't have everything figured out, but I know that my life isn't over because it took a different direction. I spent a long time thinking recovery meant getting my old life back, when maybe part of recovery is also learning how to build a life you never expected to have!!!!!!!
That's why I'm spending all 31 days of October talking about AVMs. I want to tell my story, but I also want to make room for other people's stories, educate people who have never heard of an AVM, and build a community for the person who is currently sitting where I once sat at 18 years old wondering what happens next.
If that person finds Living With An AVM because of something we share this October, I want them to know something I wish I had known then: you are not the only one, and your life can still become something beautiful even if it looks completely different than you planned.
Different doesn't mean less!!!!!!!!!!!!!!
Alive on Purpose.
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