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21st Century Rehab Services
Gallatin, TN

Cardinal Hill Rehabilitation Hospital
Lexington, KY

Centre for Neuro Skills
CA and TX

Goodwill Industries of Northern New England
(Brain Injury Services)
Portland, ME

Palo Alto Veterans Affairs - Polytrauma System of Care
Palo Alto, CA

Robin Hill Farm
Hillsboro, NH

Roger C. Peace Rehabilitation Hospital/Prisma Health
Greenville, SC

Seven Hills NeuroCare
Worcester, MA

Spectrum Health Continuing Care
Grand Rapids, MI

West Virginia Traumatic Brain Injury Services at the Center for Excellence in Disabilities
Morgantown, WV

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Susan Vaughn has dedicated her career and life to increasing access to care for brain injury at the state level.

"I do everything anyone can do. I am not what happened to me.”

Ali Sagese is chronicled in "Everything Went Black" by Jason Duaine Hahn, as featured in People Magazine.

The following story by Jason Duaine Hahn was featured in People Magazine on March 20, 2018.

Alison Sagese spends much of her day trying to hold on to her memories before they slip away.

Since note-taking became a necessary ritual, Sagese has logged her entire day into a journal or iPhone to review for later. But this habit can only help so much, as the 44-year-old finds herself forgetting people she’s met just hours after being introduced to them, or becoming disoriented while walking her dog around the neighborhood. Because of her difficulties with memory, cooking meals is out of the question unless she has someone nearby to supervise.

“If I don’t remember someone, they’ll come by my house, and I think they’re a burglar,” Sagese, from Saint Petersburg, Florida, tells PEOPLE. “It’s horrible, and I feel so bad.”

While Sagese’s memory is still far from where it once was, it has dramatically improved in the 18 years since she went missing for three days, after she fell into a coma and awoke unable to remember who she was.

While visiting her parents in Florida just before her 27th birthday in 2000, Sagese came down with a sinus infection that needed the treatment of antibiotics. Just two years earlier, she had experienced a severe allergic reaction to a macrolide antibiotic that caused her airways to close, so Sagese told the doctor at the walk-in clinic that she couldn’t take that specific type of medication.

“I told them that I was allergic to macrolide antibiotics. I still have the paperwork, and it’s horrible to see,” Sagese recalls. “I had a sinus and respiratory infection, and he prescribed a decongestant, as well as the antibiotic, Biaxin.”

The doctor assured Sagese the antibiotic was safe, and since her pharmacy was a part of a national retail chain and had her medical records on file, she figured they would let her know in case the doctor was incorrect.

But Biaxin, a macrolide antibiotic, wasn’t flagged by the pharmacy, and Sagese went forward with taking both medications as she prepared to celebrate her upcoming birthday.

When Sagese took the medication later that day, she immediately felt nauseous and felt afraid it could be a sign of another allergic reaction. Her pharmacist tried to quell her fears by suggesting the decongestant was likely the cause, and advised her to continue with the antibiotics. The next day, Sagese took another Biaxin pill before going out on a morning walk—which would prove to be a life-altering decision.

“I felt my throat close up, and my tongue started to swell,” Sagese recalls of her walk that morning. “I panicked because there was no one around. I just remember seeing a tree and feeling grass and then everything went black.”

A search party was sent out later that day to look for Sagese, and their search would continue for three days until she was found on her 27th birthday, confused, soiled and bloodied.

After reviewing an MRI scan, doctors surmised that Sagese had fallen into a coma during her walk due to a reaction from the antibiotics, at which point she experienced an anoxic brain injury—which occurs when neural cells die while the brain is deprived of oxygen for several minutes or more. Sagese was unable to speak or move at the hospital, and when she was handed a fork to eat, she couldn’t remember how to use it.

“It started off extremely bad, like newborn baby-type bad,” Sagese says. “Even when I went home, my mom had to feed me, dress me, bath me, as I lay there completely unresponsive like a baby. My parents couldn’t really believe what was happening, and I don’t remember any of that time.”

Back home, Sagese wasn’t able to recognize her friends or loved ones—or everyday things such as a cat or a bicycle—and her parents started the slow and steady work to reintroduce her to the world.

“I never got the short-term memory back, but six months after, I kind of recognized my mom, but I couldn’t speak an adult sentence,” she says. “A year later, I still wasn’t functioning like an adult, but I was able to read and write again, the basic stuff.”

What followed has been a nearly two-decade journey to reclaim her life.

“Ever since that happened, my whole life has revolved around trying to be normal,” she says. “All I want to do is get back to my old self and I was doing everything I could to do that. My heart was telling me that I really want to be that person, but my brain wasn’t letting me be that person. I was trying really hard.”

As she regained some of her abilities over time—a recovery that has shocked many doctors—she still copes with short-term memory loss, difficulty sleeping, seizures and blurred vision.

Sagese has also struggled to keep jobs, as many of her former employers would let her go when she would leave for extended hospital stays. After several years, this compelled her to adopt the name “Ali Sages,” and start her own company as a talent manager in Los Angeles. Though it had success, that venture, too, eventually ended. She now receives disability and offers consults in the entertainment industry, free of charge.

Between her appointments with neurologists and memory specialists, she relies on her notebook and her iPhone’s GPS if she becomes disoriented while she is out alone (which helps, unless she forgets how to use it).

Today, Sagese is a spokesperson for the Brain Injury Association of America and hopes to raise awareness around brain injuries through their #ChangeYourMind campaign. Though she admits the last 18 years have been full of difficulties, she wants others who have experienced an anoxic brain injury to know there is still hope.

“It’s a long road with a lot of challenges, but I think that if your spirit is still in there, it really goes a long way,” Sagese says. “Although you might not be able to do the same things and everything is way more difficult, keep positive and keep being strong. I think that’s the biggest thing, even if you don’t feel like the same person, know that you’re still in there.”

Support the National Brain Injury Information Center (NBIIC)

Anne is a member of the BIAA Brain Injury Advisory Council and works to increase brain injury awareness every day.

Anne sustained a traumatic brain injury (TBI) in 1997 when she was rear-ended while driving in Washington, D.C. She woke up early the following morning with the worst headache of her life, yet she went into work that day. At work, the lawyers she worked with suggested that she should see a doctor. She refers to this as her first clue that she had a brain injury, as it hadn’t even occurred to her to see a doctor until that point.

She recalls the doctor telling her she had whiplash and that she should take it easy. After a week at work, Anne was politely told to go home and rest when she couldn’t add up the hours on her time sheet. A few weeks later, over the fourth of July weekend, she noticed that she had trouble tracking the fireworks display with her eyes and realized she needed to seek help. She saw a neurologist, who told her she had had a mild traumatic brain injury (mTBI).

In 1999, Anne followed her then boyfriend (now husband) to Austin, Texas, where she found a neurologist who was willing to take her on as a patient. He referred her to St. David’s Rehabilitation Hospital even though it had been more than two years since her brain injury. She began rehabilitation and started volunteering at the University of Texas. Anne and her boyfriend were married in October 2001, and they considered the wedding to be a rehabilitation exercise as it took a lot of project-management skills!

In March 2002, Anne and her husband moved back to Washington, D.C., where she eventually volunteered at the Brain Injury Association of America (BIAA) office. She worked with BIAA staff members and long-time advocate Robert DeMichelis on several policy issues and on the annual Brain Injury Awareness Day on Capitol Hill.

Anne is an original member of the BIAA Brain Injury Advisory Council (BIAC), which was established by BIAA President and CEO Susan Connors in 2008 to obtain input and feedback on a broad range of activities, especially those involving brain injury awareness and advocacy. “I feel so blessed to be a part of this group. So many members are doing exciting things and have modeled for me where I want to go with my life and advocacy work. My first goal is to keep getting better and better and watch other brain injury survivors solve problems and see their strengths. It has been amazing for me, so inspiring. I feel like we’re thriving as a group. It’s a lonely journey, especially if you don’t get the proper care right away. It’s been a blessing to have so many brothers and sisters taking this journey with me and pointing out different ways of doing things. It’s so meaningful, and the inspiration I get from the other members is tremendous. We have an understanding of each other and have each other’s backs,” Anne explains. She continues to serve on the BIAC and leads the group as chairperson.

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Each year, Ansley hosts "Beauty Queens Bowling for Brain Injury" in memory of her brother, Chase.

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