“Do what you can, and don’t waste your time on things that you can’t fix. Just keep moving and doing the stuff that you enjoy and try and place the emphasis on having the joy within you because you know tomorrow isn’t promised.”

SURVIVOR PROFILE: Meet Karen Stephens

Former international fashion model Karen Stephens exudes quiet elegance and grace, even over a conference call. She is incredibly articulate, speaking in a clear, strong voice that lilts with echoes of her Jamaican upbringing.

She is also still stunningly beautiful. It’s no surprise that several of her business ventures have included schools to teach women grooming, fashion, modeling and corporate positioning.

Stephens is also, however, a brain injury survivor. And while that’s the least noticeable thing about her from an outsider’s perspective, it’s the reality she still lives with each day, 20 years after the injury that changed her life and continues to mold it today.

When Stephens was first hospitalized in 2003 due to a scaffolding collapsing and hitting her on the head, she was misdiagnosed with a “self-correcting” concussion.

The following years were a fog of chronic pain and psychological unrest as Stephens realized she could no longer read, had severe short-term memory issues, and, for three years after the accident, had no sense of smell.

It wasn’t until late 2008 that Stephens entered a TBI rehabilitation program at Mount Sinai Hospital in Manhattan, New York. There, in the Phase II Program for cognitive rehabilitation, Karen began to receive proper care.

Stephens still had to undergo right shoulder and knee surgeries. She also dealt with cervical and lumbar injuries from the accident, though those did not require surgery.

Still, eventually, Stephens recovered, adapted and has since moved from an acute recovery phase into the long-term, lifetime adaptations of being a brain injury survivor.

“So it feels like it never goes away,” she said. “But in spite of that, you’re doing your best to live your life.”

As with the vast majority of brain injury survivors, this means Stephens struggles with neuro fatigue. This is a very specific kind of weariness that can sometimes result in near-total physical and mental shutdown for brain injury survivors. It can happen to different degrees, but it is unmistakable when it hits brain injury survivors.

Stephens’s own experiences reflect this reality.

“I get lightheaded, I can feel it coming on, and there’s no way I can stop it; sometimes I push through it, but sometimes I just have to stop and take a break,” Stephens said.

Stephens, a professionally successful, driven woman who had founded and ran multiple businesses prior to the accident, finds this aspect of life with a brain injury particularly frustrating.

“For everyday life, or for going to work every day, it just isn’t conducive to that,” Stephens said. “So, although you feel like your faculties are intact and you can do this, there’s still just these limitations.”

There’s also the issue of accommodating the impact her injuries have had on her vision, another particularly sharp sting given Stephens’ deep love of reading. She toggles between three different pairs of glasses—one for watching television, another for reading and yet another for working on the computer.

Then there’s dating and relationships.

Stephens, who recently celebrated her sixtieth birthday, still hopes to be married someday and tries to maintain an active social life. But here, too, brain injury casts its long shadow. Her energy levels are lower with her TBI.

“Dating and relationships are challenging,” she said. “You don’t have the energy you see all your friends have. So that, in a sense, presents a challenge.”

None of this, however, has stopped Stephens from creating a full and vibrant life for herself.

In fact, Stephens’ own experience with the personal injury judicial system ultimately led her to earn a paralegal certificate. Though Stephens won her initial suit against an insurance company involved in the case, the case was later dismissed on appeal. Karen’s attorney failed to provide notice of the dangerous condition, or that the contractor erected the scaffold and fencing. Although the attorney had proof of the same, she did not put it into evidence at trial.

“They dismissed the case, which I thought was one of the most unfair decisions that anyone could have made considering the injuries and the continuing struggles that I had,” Stephens said.

Though not working with clients professionally, Stephens uses her newfound expertise to help families and friends navigate the legal system, particularly with immigration and disability systems.

“I feel like I’m doing something with my life instead of just spending my days going from one appointment to the next appointment in terms of medical care,” Stephens said.

She is also working on self-publishing a novel that she began prior to her head injury.

Ironically, Stephens had written the protagonist of that story as having a brain injury, not knowing anything about it. Now, she is able to add her own personal experience and insight to the story.

Still, Stephens admits she has to be mindful of her energy.

“Pacing myself is very important,” Stephens said.

This applies to her recovery as well. For a brief period, she decided she would not go to any medical appointments, simply to give herself a much-needed respite from the constant physical and mental toll of being embedded in various medical systems.

“I was going to take a break from it because it was controlling my life too much,” Stephens said.

For Stephens, this became a silver lining offered by Covid-19. During the pandemic, Karen stopped using the HCSS personal aides since they used public transportation and Karen felt she would be at risk.

She used the time to develop her own system for adapting to daily life, such as figuring out a routine for household chores and such.

Stephens also learned to prioritize recreational events like going out with friends, going to movies, concerts or dinners with friends.

“I have to make time for the things I want to do as fun,” Stephens said.

One sign of her recovery is that she now enjoys going for walks – a good reminder of how much progress she’s made, as walking used to be extremely painful for her.

Still, she finds she prefers quieter, mellower events these days. She brings custom-made musician’s earplugs to concerts to dampen the noise and goes to lighter movies like romances. Prior to her accident, she preferred more action-oriented flicks).

Stephens also took several international trips she wanted to take despite having to overcome her internal discomfort with the term disabled. She made peace with using a wheelchair at the airport when she was tired and had to navigate the gate for departure, a big internal shift that literally opened up the world to her.

“I’m not letting it stop me,” Stephens said. “I think it did for so many years.”

Today, Stephens continues to live a rich and meaningful life adapted to her brain injury. She encourages many others to do the same.

“For me, it’s just encouraging people to live their best life,” Stephens said. “Do what you can, and don’t waste your time on things that you can’t fix. Just keep moving and doing the stuff that you enjoy and try and place the emphasis on having the joy within you because you know tomorrow isn’t promised.”

ABOUT BRAIN INJURY ASSOCIATION OF ARIZONA

The Brain Injury Association of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.