About This Episode

“You will never ever dive again.” That’s what Deanna Steinle was told after her diagnosis with generalized myasthenia gravis (gMG), a rare autoimmune condition. Her answer was, “Watch me.” Deanna was a professional diver and a PR pro, including work as a shark diver at Ripley’s Aquarium of the Smokies. On this episode of Invisible Strength, she talks with Karin and Chris about her diagnosis, the four and a half years she couldn’t be left home alone, the grief that arrived a year after the crisis, and her return to diving in 2022.

Key Takeaways

• Deanna’s road to a gMG diagnosis included an MG crisis, when her body declined rapidly.
• She celebrates her “diagnosis day” because a diagnosis brought answers and relief.
• Her grief didn’t hit until about a year later, once the new routine had settled in.
• For four and a half years she couldn’t be left home alone, and trust with her husband was key to moving forward.
• She returned to diving with disability-certified dive teams and went back to school using a disability education benefit.

Celebrating diagnosis day

For a lot of us in this community, a diagnosis is a strange mix of relief and fear. Deanna leans into the relief: she celebrates her diagnosis day. In the conversation, it brought to mind a poem about celebrating every day that something tried to kill you and failed.

Grief that arrived a year later

At first, there was no time to process. “Forget career, forget, you know, just make sure the bills are paid,” Deanna said. “It was only once the dust settled, this is going to be your routine now, that I had to start processing the grief of the life that I had. And that happened about a year after the fact.”

If your grief showed up late, or keeps coming back, you’re not doing it wrong.

Four and a half years of not being left alone

During her diagnosis process, Deanna went through an MG crisis, and for four and a half years she couldn’t be left at home alone. She talks about how she and her husband handled that, and about trust. “There’s a trust between your caregiver, your spouse, other people in your lives. You have to trust the person with the illness,” she said. “You have to let us live a little.”

“Watch me”: returning to scuba diving

Water was Deanna’s life. When she was told she’d never dive again, she talked with her doctors about how to do it safely. One said she could swim or dive in a swimming pool, and Deanna realized aquariums offer those same controlled conditions. She found disability-diver-certified facilities that work with adaptive divers, and teams that already knew her professional background. She got back in the water in 2022.

Going back to school at 2 a.m.

When she couldn’t sleep, Deanna wanted something she could put her energy into without getting out of bed, and a checklist she could see herself finishing. She learned that her permanent disability benefits included an education benefit, and she used it to go back to school, studying biological anthropology. She talks about what studying death and dying taught her, too.

Redefining hope

As a marketing and PR person, Deanna is wary of hope that’s been sold as something out of reach. “Hope to me is all about the present,” she said. For her, it’s small victories: seeing her grandkids, or cooking them breakfast on their first day back at school. “It all looks different. And I want people to understand that, and be like, yes, that’s celebration in and of itself.”

Follow Deanna at @resilience.is.beautiful.

Support and resources: https://www.invigorateyourjourney.com