Tamsen Butler - Why we started a worldwide stroke community
Tamsen Butler - Why we started a worldwide stroke community
Tamsen Butler is a founding member of The Stromies (Tamsen Butler, Angie Jorgensen, and Sarah Conaway), a global online community for stroke survivors. An award-winning author and mother to two ridiculously clever teenagers, Tamsen is also a certified personal trainer and Air Force veteran.
I was lying in the ICU, having earlier in the day unexpectedly suffered a massive stroke. I didn’t know what this meant for me, but it was conveyed to me that I was lucky to be alive.
What I really wanted to know was this: who else has gone through this, and did they recover fully? As a relatively young stroke survivor at age 41, some of the medical staff didn’t quite know what to do with me or what to tell me about expected recovery.
So there I was, desperately trying to remember how to use the search engine on my smartphone. The stroke made it hard to think, so my attempt to search for stories of stroke survivors who recovered spectacularly didn’t yield anything. It was partly because I couldn’t remember how to navigate an Internet search and partly because there weren’t any to find easily.
I did find plenty of stories about survivors of massive strokes who never walked again, or who weren’t able to speak. As a stubborn and optimistic person, I made two vows in that moment:
- When I had full use of my left side again, I was going to get a tattoo on my arm to remind me of how far I’d come (I did).
- When I recovered, I was going to write positive stories about my experience and publish them online so the next person lying in the ICU trying to learn about their stroke might have some hope (I did).
One of my online articles caught the eye of Sarah Conaway, another young stroke survivor who lives near me. I introduced her to Angie Jorgensen, another survivor I met at an American Heart Association advocate summit. The three of us quickly realized that there was something powerful about meeting people who had been through something similar. We dubbed ourselves “The Stromies,” which means Stroke Homies.
Our loved ones offer us support, but it’s fellow survivors who understand.
I shared me desire to reach out to other survivors to tell them that it gets better, and both of them were on board. What started as an intention to write a book together evolved into an online global community of survivors sharing stories and encouraging one another.
We unassumingly became the faces of post-stroke life. While none of us make the claim to be 100% recovered, we all make the claim to be blessed beyond measure in our “new normal.”
I’ve come a long way from the frightened, confused woman in the ICU who desperately needed to hear someone else’s stroke success story. Now I’m offering a success story to my fellow stroke warriors right alongside my Stromies. Every survivor who thanks us for listening or for sharing our stories helps me reconcile the loss of my former self and move forward boldly with my Stromies by my side.
