September 2024 Jenn Williams

As people go about their lives, they don’t generally think to themselves “I’m going to prepare for disability at a young age.” I was in no way prepared for what having a brain injury entailed. If you had told me in 2016 that in 8 years, I would be a stroke survivor, sharing my story at brain injury conferences, I would have straight up called you a liar. I would have laughed and said, “Strokes are for old people, silly.” I guess I would be the silly one.

In August of 2016, my husband and I were 6 months into homeownership. I was 33 years old, a newly-licensed insurance agent, had a booming direct sales business, and was getting into Crossfit. One day at work my hand started to tingle. How could my hand fall asleep while I was typing an email? Is this what carpel tunnel syndrome feels like? The next day the tingling spread to my foot and the right side of my face.

I immediately called my primary care physician and got an appointment. She thought it could be a mineral deficiency and ordered a series of blood tests. I went for bloodwork multiple times over the next week. Ten days after my initial symptom, I was scheduled for a follow-up. I woke up nauseous, dizzy, and just feeling off. At my follow-up, my primary care said she wasn’t sure what was going on, but she would order some tests and they would call me to schedule. With my symptoms, I was not comfortable driving, so my mother-in-law, Myra, came to the doctor’s office to drive me and my car home. In the 10-minute drive home, I became paralyzed on my right side. As I dragged my right leg up the stairs into my house Myra yelled “THIS IS NOT OKAY” and drove me to the emergency room. I was doing what the doctor told me, what was she so upset about?

The ER doctor took my symptoms very seriously, ordered a battery of tests, and soon informed me that I had experienced a stroke. Well, that’s why Myra was so upset! Neither my husband nor I knew what to do, what to expect, or how it would affect our lives. Over the next year, I learned to walk and write again, learned about alternative therapies, and experienced the deepest grief I’ve ever felt. I regularly screamed, cried, and mentally shut down for days or weeks on end. I avoided dealing with the hard things. But when I look back, I realize I was still advocating for my needs, even when it seemed like the hardest thing to do, even when I took weeks in between those hard things. I refused to give up. I refused to be a victim of circumstance.

I’ve experienced a lot of grief in my life. Something I learned at a young age is that grief does not go away, it just changes. Three years post-stroke and my grief finally changed. I had mourned the loss of who I was, my old identity, and my old life. Throughout the first few years of my recovery, I kept asking myself “Why?” “Why did this happen to me?” “What’s the reason for this?” “What’s the reason for something so traumatic?” Then I realized that the “why” is because this is my vehicle for giving back! Sharing the way my stroke impacted my life is the “why”.

Because of my stroke, I have…

• Met incredible people I never would have met otherwise
• Taught self-advocacy to fellow survivors
• Started the Middle People Project
• Joined the BIAA-ME Advisory Board
• Developed more compassion
• Learned to appreciate the fact that I am alive
• Spoken at conferences and support groups
• Done a podcast interview
• Advocated for systemic change

I still scream, cry, and have periods of shutdown, but they are shorter now. I have learned to pace myself, have gratitude for everything (the good, the bad, and the ugly), and lean into my passions. I have built a life that I love, and I make choices every day that align with that life. Happiness and gratitude are not external. They are internal and a choice. That choice is what pulls me out of my darkest moments, every time.