Ultimately, the message Danielak wants other aphasia survivors to know is to keep going.

“It’s going to be a lot of work, and it’s going to be hard,” Danielak said. “But you have to keep walking through quicksand to get to the other side.”

Two Brain Injuries Gave Ed Danielak Aphasia, But He Hasn’t Forgotten His Passion

By Christina Eichelkraut

A brain cancer diagnosis is a life-altering challenge for anyone. Surviving the cancer and its treatment, only to sustain a traumatic brain afterward, seems utterly impossible.

Yet that’s exactly what Ed Danielak has been through, surviving two successive brain injuries. Despite the ongoing challenges that stem from both experiences, he’s finding a way to reconnect with his passions and thrive.

Danielak’s brain injury survivor story actually begins quite some before his brain cancer diagnosis during the fall of 2019.

Something Was Just Off

Before the official diagnosis, Danielak noticed something was just off.

“We knew something was going on,” Danielak said. “I was having difficulty kind of comprehending what was going on, my memory was getting very spotty.”

At the time, Danielak was doing work he loved creating schools for children with autism. But his mounting cognitive issues eventually forced him to quit.

“I stopped working full time in a world that I loved because I was having a very hard focusing,” Danielak said. “To leave my job was strange. It really does tell you something is not going on well.”

He then decided to pursue a Ph.D in psychology. But there, too, his difficulty focusing made him believe school wasn’t the right path for him. He even blamed the school itself.

“In hindsight, we know it was because I had a massive tumor,” Danielak said.

Danielak began working at a retail store. By this time, his short-term memory loss was completely debilitating. Much to Danielak’s surprise, at times, he couldn’t remember simple things like which item he was in the middle of restocking.

Ultimately, Danielak realized he couldn’t work any longer.

Cancer and Recovery

Danielak and his husband then moved to Florida.

A follow-up appointment with an eye doctor who saw a spot turned into a CT scan, which became one of the worst days of Danielak’s life.

The clinicians wouldn’t let him leave the CT scan, which was the first indication that something was seriously wrong. Eventually, Daneilak was told he had a massive, cancerous tumor in his skull that needed to be operated on as soon as possible.

“It was terrifying and everything you would think of when you find you have cancer,” Danielak said. “All I could think of was, ‘Let’s get into surgery, I want this cancer out of me now.’”

He underwent a craniotomy, a surgical procedure in which part of the skull bone is removed so doctors can access the brain. Afterward, he underwent concurrent radiation and chemotherapy treatments.

The treatments finished at the height of COVID. The pandemic hit home for Danielak when he showed up for his last MRI treatment.

“They didn’t even let me change into a gown,” Danielak said. “They made me run in, get the MRI and run back out.”

Despite the world-stopping pandemic outside, Danielak felt optimistic with his treatment ending and the tumor gone.

He recalled staying focused on the future, thinking, “We’ll get this out of me, and then maybe it’ll clarify things for me, and we’ll get back to life.”

But, as Danielak puts it, “that was not the path we ended up in.”

Reinjury and Aphasia

Danielak and his husband decided to move to Hawaii, a life dream of theirs. The cancer had forced the couple to reassess their priorities, and Covid’s transitioning jobs into remote roles meant his husband could now work from anywhere. It seemed like the perfect fresh start.

While setting up his new home’s office, Danielak slammed his head against his desk. Though he saw stars, he decided to go to the hospital the next day. He was exhausted with hospitals, COVID lurked treacherously outside, and Danielak believed he would be OK despite the lingering pain.

In the middle of the night, however, Danielak woke up and vomited. He then had what doctors believe was a full seizure. He was intubated at the hospital and released a few days later.

However, the incident was far from over.

Danielak’s brain cancer displaced his brain, skinking it lower into his skull. Banging his head on the desk had given him a concussion. But it wasn’t until a few days after being released from the hospital that the full impact of his brain’s reinjury hit Danielak like a truck.

“A handful of days later, that’s when I suddenly couldn’t read what my coffee cup said,” Danielak said. “And it was just gone. And I just couldn’t read.”

It was completely devastating. Recounting the memory, Danielak began to choke up.

“That’s one of those memories that will stick with me forever because that was what I did,” Danielak said. “I couldn’t read, which was something that I loved.”

Adding to his reading comprehension loss, Danielak became partially blind in his right eye.

“It was just one thing after another,” he said.

Aphasia

Knowing Phoenix had more comprehensive brain injury medical resources and terrified the cancer had returned, Danielak and his husband moved back to Phoenix.

Fortunately, testing showed that the cancer was still in remission, and the swelling from the desk accident had gone down.

However, he was diagnosed with verbal aphasia.

Aphasia, usually brought on by brain injuries such as blunt force trauma or stroke, impacts the language center of the brain. It makes it extremely difficult for a person to read, write or verbally communicate.

“I had never heard of it; I didn’t know what aphasia was,” Danielak said. “I didn’t know what a cup was, I couldn’t name things, I didn’t know what was going on.”

For someone used to operating on a very high cognitive level, it was a terrifying and baffling change.

“It was scary, upsetting, and very confusing,” he said. “It was like going to bed in one country and waking up in another country. I couldn’t read the language, I couldn’t understand the language.”

Ever resilient, Danielak began to work with a speech pathologist. He also changed his medication, some of which were thought to possibly be exacerbating the issue.

He began to improve slowly. Thinking that being around friends and family would help him rebuild his linguistic ability even more, Danielak and his husband moved back East to Connecticut, where Danielak grew up.

With the onset of winter, however, Danielak knew his days of enduring freezing temperatures were behind him. So, he and his husband packed up again and moved back to Florida.

Though the weather was better, ultimately, Danielak and his husband moved back to Arizona for his husband’s job. Phoenix also offered Danielak access to his favorite speech pathologist.

So, for the third time, Danielak found himself in Phoenix. Here, through his connection with the Brain Injury Association of Arizona, he’s found support, acceptance and peace.

The Next Chapter

Now, Danielak hopes to share his story to help others who may lost in the fog and confusion that aphasia thrusts brain injury survivors into.

“That’s so important to me that people are not sitting alone,” Danielak said.

Although he doesn’t know exactly what his future looks like, he knows he wants to help empower others with aphasia.

Danielak is also reclaiming his love of reading and language by helping to co-edit a future edition of The Noggin.

Ultimately, the message Danielak wants other aphasia survivors to know is to keep going.

“It’s going to be a lot of work, and it’s going to be hard,” Danielak said. “But you have to keep walking through quicksand to get to the other side.”

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.