Many 34-year-old women are starting to see not-as-smooth skin around their eyes or an unwanted hair or two in unsightly places.
Sarah Conaway saw her life flash before her eyes in a way most won’t until they are 65 or older. She also sees life through one eye—a stroke at age 34 left her with half of her vision.
Conaway was one of few people to suffer a stroke at a young age, but she wasn’t alone. Not in the U.S., not in Omaha. The CDC reports that 34% of people who suffered a stroke were under age 65—but in the age group of 45 and under, that statistic drops to anywhere between 10% and 15%.
Conaway survived an ischemic stroke followed by a hemorrhagic conversion, and these days, she can be found with her Stromies—two friends she found through the commonality of being young stroke survivors. She, along with Angie Jorgensen and Tamsen Butler, have created a personal support group and an online support group that boasts 1,000 followers on Facebook and more than 1,500 on Instagram.
The three women arrive in a ceremonious fashion, whether they’re stopping for coffee or preparing to present at a gala. The energy is rich and the mood is high, and with a bright and confident smile on each of their luminous faces, they talk about the time they almost died.
It may be a bit macabre to think about, but they each insist that their strokes come with an upside, if only a partially working left side.
“I’ve always been a Pollyanna,” insists Jorgensen, “I need to find the one good thing every day and write it down. Even in the darkest moments, and there were a lot of dark moments.”
She could be talking about any of the moments since her initial stroke in 2012, living on bypass and dialysis, or rehab, but she’s speaking specifically about dying. Twice.
“They did everything. CPR, a helicopter ride to a better equipped hospital, machines to keep me alive. I was in a coma for five days before they knew why.”
But those five days aren’t the ones Jorgensen is counting. She’s counting the 2,549 that have passed since. The 61,176 hours she shouldn’t have had. Her borrowed time.
“I may have lost some of my physical strength, but I gained so much spiritual strength and gratitude. I knew that I had to find a way to share that, but figuring out how didn’t come together until I met Tamsen and Sarah.”
You Had Me at Hello
Meeting Butler came about with a mutual girl-crush and a bit of cyber stalking.
“I’d seen Tamsen giving a speech at the Go Red for Women event and I was just amazed,” Jorgensen said. “Her story and the way she told it was so vulnerable and honest and strong. I knew immediately I wanted to find a way to connect with her.”
What Jorgensen didn’t know was that Butler already had her eye on the fellow fitness instructor.
“I was seated near Angie during a different event and I couldn’t stop staring at her calves,” Butler said. “She was so strong. I wanted to walk up and ask her for her leg routine, but there wasn’t an easy way to do it.”
Jorgensen had already faced death, there was no way she was going to let a few nerves get in the way of pursuing what she anticipated could be a powerful partnership. She looked up Butler on Facebook and sent her an invitation to meet.
“The day we met for coffee I was nervous, still feeling all of my deficits and wondering if Angie was going to notice them,” Butler said. “She just breezed in looking fabulous, held up a finger for me to wait, and opened her laptop and a set of notes. She pointed at the first note and looked up at me and said ‘hello.’ She had a note to remind herself to start with hello. I knew I had found a member of my tribe.”
Fit to Fight
Butler was an award-winning author, freelance journalist, copywriter, and fitness professional before July 22, 2015. As she stood in the kitchen putting away groceries that day, some of them slipped from her hands. Before long, her 11-year-old daughter, Monet, was standing over her asking if she should call 911.
“It seemed silly,” Butler said. “911? I just wanted to go lie down for a bit.”
But when Butler couldn’t formulate the thought into words, Monet called her father, Scott, who called an ambulance as he raced home from work.
“The EMT kept urging me ‘stay with us’,” Butler said. “All I could think about were my kids. I couldn’t leave them.”
After months of rehab and recovery, she knew that just continuing to live wasn’t enough for her.
“I wanted to do more, and I wanted to get the information that saved my life out to anyone who would listen,” Butler said. “I had a platform, and I needed to get well enough to use it.”
And using it put the title “award-winning writer” back under her name, post-stroke.
The women first set out to write a book about their experiences overcoming a stroke, but fate had other plans.
“It’s probably good that we didn’t know right away just how big this was going to become,” Butler said. “If someone had told us, we wouldn’t have believed them, or we would have just been too intimidated.”
Once they found their missing piece in Sarah, there was no more room for fear. All that was left was a resolution to make a difference.
See Like Sarah
If you could see through Conaway’s eyes, you’d be kinder, more patient, and more faithful.
The first thing Conaway had in common with her future Stromies was that she was young and healthy when nature struck unexpectedly. The second thing was that being a survivor wasn’t enough. She was determined to become stronger than before, and to show others that they could come back from anything.
“My daughter woke up at 3 a.m., crying with an earache,” Conaway said of that night she suffered her first stroke. “I hurried her in to Children’s and as we sat in the emergency room filling out paperwork my right side just gave out. I couldn’t lift the pen. For the next three days I was in and out of consciousness. If it hadn’t been for my mother being there to speak for me when I couldn’t do it for myself, pushing for more testing, they wouldn’t have found that I’d had a second stroke [while in the hospital]. My brain would have continued bleeding and that would be it.”
Conaway said surrounding herself with people who will relentlessly advocate for her, push her, and give her a safe place to rest and heal meant the difference between accepting her deficits and fighting for a new, stronger woman.
“It’s easy to think that the stroke is the one bad thing that happens and then you get to have an amazing life,” Conaway said. “An amazing life comes from deciding to have an amazing life, no matter what. Sometimes, that ‘no matter what’ gets tested in ways you don’t expect. But every day you just think of what you’ve already survived, and remember that you can survive this, too. At least I don’t have to do it alone.”
Conaway has faced the unthinkable, the unexpected, and the unfair, but she does it all with a charm and grace that belie the circumstance that brought her to her tribe.
Butler found that writing helped her get back to normalcy. That intention to get back to a normal life created a blog, which created the “stromies” community. This community of survivors offers one another support that meets them where they are today. Some people in the community are still in the surgery stage, others have graduated to canes or walkers, and some have deficits only evident to those who knew them prestroke. The Stromies know that the need for support doesn’t have an expiration date, and as long as they have a voice, they’re going to use it to tell others that they are never alone.
The women have used the bars lowered by brain trauma, permanent damage, and physical limitations to build a ladder, taking them to heights they hadn’t imagined.
“We didn’t expect the reach to be worldwide,” Jorgensen said. “We have made friends and collected stories from all around the globe, and to be trusted to tell these stories is really meaningful. There are days when we look at what’s going on in our own lives, sometimes really frustrating or even devastating things, and we remember what we’ve already overcome. As long as we’re still breathing, we can overcome any bad day.”
After you’ve had a stroke, your definition of a ‘bad day’ changes dramatically. When the women say they deal with frustrations, it’s a bit more existential than a bad hair day. Each of the women can wistfully name a handful of people they lost after their own strokes.
“It was shocking…the statistics on divorce after a stroke,” Conaway said. “You think of your ‘in sickness and in health’ vow and you realize that not everyone thought that part through. Some people aren’t strong enough to love you after you’ve survived something like this. You become a reminder of mortality. Of just how close we all are to needing to be taken care of. We’ve all lost friends, family, a partner. Someone who just wasn’t strong enough to be there. We want to make sure that other survivors know that they won’t lose us. No matter who walks out on them, this community is going to be there. In sickness, health, speech impediment, shaking hands, and whatever else they can throw at us.”
And no matter what life throws at these incredible women, they sum it up by simply stating:
“You take your mess, and you make it your message.”
Follow the Stromies’ blog at stromies.com.
This article was printed in the January/February 2020 edition of Omaha Magazine. To receive the magazine, click here to subscribe.