‘They Keep Telling Me I’m Crazy’: A Navy SEAL’s Desperate Search for Answers About His Own Brain Injury & His Family’s Cause Now

Frank and Jill Larkin’s son, Ryan, died on a spring day in 2017 in their home in Davidsonville, Maryland.

They found him in the basement. He’d put on his Navy SEAL Team 7 T-shirt and his red, white and blue board shorts and then asphyxiated himself next to a shadow box of the medals, patches and insignias from his service as a sniper and medic. He was 29.

“I have no words to say anymore and I feel like nobody has truly listened to my story,” Ryan wrote in 2016, while in treatment for alcohol abuse. For years he was plagued by headaches, sleeplessness and memory loss. In all caps and underlined, he wrote, “I NEED TREATMENT FOR PTSD & TBI.”

Ryan was certain something was wrong with his brain and just as frustrated by his inability to prove it. He searched fruitlessly online for more and more information about traumatic brain injuries and “breacher syndrome,” so-named for the problems that plague the military personnel responsible for “breaching” — or using explosives to enter — a building.

He longed for his headaches to end. He longed for a good night’s sleep.

In the years before his death, Ryan saw multiple doctors, first through the Navy and then the Department of Veterans Affairs. But tests for a brain injury came back negative. Whatever suspicion he had, the doctors agreed, was just in his head.

But he wasn’t convinced. He instructed his family that, when he did die, they were to donate his brain to research.

“He knew exactly what he was doing the day he took his life,” dad Frank tells PEOPLE. “He was trying to call attention to teammates who were struggling. He didn’t want his boys to go through what he was going through.”

Three years after Ryan’s death, the work he inspired continues, with his family stepping into the spotlight as advocates for what they say is a deadly serious but not-well-understood problem with service members and veterans like their son.

Frank believes the high number of veteran suicides — averaging 17 a day — may be linked to undiagnosed injuries caused by repeated exposure to brain-rattling blasts from explosives and munitions.

“’They keep telling me I’m crazy,’ ” Frank says Ryan complained him.

Related: Army General Says First Step in Treating PTSD is Reducing Stigma

But tests on Ryan’s brain after his suicide, which could not be performed on a living person, proved otherwise: He had suffered prominent interface astroglial scarring — evidence of the brain trying, paradoxically, to heal itself after damage even as the process likely interferes with nervous system function.

In Ryan’s case, the scarring was in a dense band just under the surface, between the gray and white matter, on the front, back and sides of the brain. But it was too small to show up in the neuroimaging that Ryan had received while he was alive, which is part of what stymies further efforts to research such blast-related injuries.

Dr. Daniel Perl tells PEOPLE he concluded that the finding from Ryan’s brain was consistent with what medical experts had found in other troops who were exposed to blasts. These brain injuries are different from those caused by car wrecks, chronic substance abuse or contact sports like football.

Perl, a neuropathologist with the federal government-backed Uniformed Services University of the Health Sciences, says research on brain injuries due to blast exposure is still in its infancy. There is no confirmation yet that Ryan’s brain scarring is what caused his symptoms.

“It would fit with some of the symptoms that he displayed, but it’s tough to prove,” Perl tells PEOPLE. “The brain is so complex. The more [donated] brains we get to look at, the more we learn.”

He’s seen many soldiers and vets struggling with the same inexplicable neurologic and behavioral issues at the major medical facilities he visits. “This is a considerable problem,” Perl says.

Ryan’s friends and family openly share his story — in a letter in January, his dad even pushed back on President Donald Trump’s belief that TBIs were “not very serious.” Frank thinks the U.S. government owes it to combat veterans to do more research on blast-related brain injuries, to prevent, properly diagnose and treat them.

As Frank tells it, “My son died of wounds suffered in combat. He just didn’t die right away.”

‘I Don’t Know What’s Happening to Me’

Ryan Larkin was 14 when he begged his dad, a SEAL veteran who was then working as a Secret Service supervisor in New York, to take him on a tour of the smoldering wreckage at Ground Zero. It made a lasting impression.

A year after graduating high school, Ryan, who had a job scuba diving to clean the bottom of sailboats, announced to his parents that he had joined the Navy. He wanted to prevent 9/11 from ever happening again.

He enlisted in 2006, got his SEAL Trident in 2008 and ultimately earned the rank of Special Operator 1st Class. He served two tours in Iraq and two in Afghanistan, as well as other deployments in Bahrain, Honduras and Lebanon, as a Navy SEAL sniper, explosives breacher and special operations combat medic. Then he led Special Ops urban combat training, including breaching.

During his time in the Navy, Ryan was awarded a Bronze Star, three Good Conduct Medals, various marksmanship commendations and medals for his service in the Middle East and in the “Global War on Terrorism.”

That service also put him in extreme proximity to any number of explosions, big and small: IEDs and enemy mortars and rocket-propelled grenades as well as high-caliber sniper weapons and breaching charges and rockets that he fired off of his shoulder.

Comparing his time in the Navy in the 1970s through 1981 to Ryan’s experience, dad Frank says, “We didn’t use explosives the way they’re using them now.”

“The explosives are more powerful now. They use them up close, to breach a wall or a door, and they also use them for longer ranges — they have to go further,” Frank says.

Ryan once said a blast was so strong it cleared his sinuses. Deployments and training are constant, so there is little break from exposure.

“We saw our son come apart in front of us,” Frank says.

It took years. Ryan had been with girlfriend Kristen Gonzales since a blind date in 2007 set up by a teammate during his SEAL training, but the relationship grew strained. Gonzales says she started noticing a change in her quiet, contemplative, intelligent boyfriend in 2012. He grew more irritable more often, and new neighbors remarked that he seemed angry. He was impulsive and paranoid — but he denied having a problem.

When Gonzales finally moved out, Ryan accused her of breaking in. He visited her in Chicago, and she found notes he’d written to remind himself to take the keys and take his credit card.

“He would stare me down, and his eyes were dark,” she tells PEOPLE. “It was not him. It was somebody else in my house.”

In 2015 Ryan was sent on an assignment to Iraq to evaluate new enemy tactics in Syria, but the plane broke down in Spain. With several days waiting for a mechanical part, he and others went out drinking. But alcohol didn’t mix with his new medication for sleep and anxiety, which he was prescribed days before the trip, and Ryan passed out and hit his head, losing consciousness. Medical tests didn’t find anything wrong though, so he returned to duty.

“After he came back from that trip is when we really started seeing the wheels coming off,” Frank says.

Ryan drank during the day, wasn’t showering and his mailbox was stuffed with unopened mail — with more inside the house.

Where before he had been so even-keeled, Ryan now had trouble remembering things and suffered crushing anxiety and insomnia. He was diagnosed with post-traumatic stress disorder. But he never believed the diagnosis was fully responsible for his problems.

“He kept saying, ‘Something’s wrong with my brain, I don’t know what’s happening to me,’ ” his dad recalls.

Ryan’s hometown best friend, Max Petit, saw the change, too. Ryan’s fuse — nonexistent before — grew short, even in the grocery store.

“He loved dirt biking, car racing and wake boarding,” Petit tells PEOPLE. “He had a BMW M3, and he was always doing all kinds of work to it: lowering it, buying new wheels. He stopped being interested in all that.”

According to Petit, “He said he didn’t have enough room in his brain.”

For two years, Ryan sought help, first in the Navy and then through the VA. Tests for brain injury came back negative, so Ryan was sent for psychological treatment. His hearing and vision were declining too, and his balance was off. He lashed out with threats and was given psychotropic and sleeping medications. But he seemed to get worse.

“He’d start talking about plans that didn’t make sense,” Petit says. “He would lose track of conversations and ramble on about something else, fast talking. It wasn’t like him.”

Ryan asked to attend an alcohol treatment program, his dad says, because it was the only thing available to him. He drank a six-pack one night while on sleep medication, which caused him to fail out of the program even though he had no memory of the episode the next day. The amnesia, Frank says, was a side-effect of the sleep medication.

He returned to a support role in the Navy but continued to deteriorate. He was ordered to an inpatient alcohol abuse program and wasn’t allowed to take any of his medications. He threatened others during his withdrawal and failed out of that program as well. As a result, he was brought up on charges of disobeying the order to attend the program.

The Navy began out-processing him — which would end in his removal from the service — but when he didn’t show up for an appointment one day, he was found disoriented. More threats landed him in a mental health ward for a month. He was simultaneously discharged from the hospital and the Navy on the same day, in March 2016, and was forbidden from returning to the SEAL compound.

“He became very distrustful, disenfranchised,” Frank says. “He never got to say goodbye to his boys. He loved being a SEAL.”

Ryan went to a VA polytrauma program in Palo Alto, California, but he didn’t complete it.

Finally, he showed up on the doorstep of his parents’ home near Annapolis, Maryland, late one night in April 2016. He was disheveled and stoned, threatening. He wasn’t rational.

Frank, then the sergeant at arms (the chief protocol and law enforcement officer) for the Senate, called the police. Ryan didn’t fight. He was taken to a psychiatric ward in Baltimore.

He was on dozens of medications, but there he weaned off almost all of them. He was released to his parents, and Frank asked Gonzales to move in to help him recover.

For a time, Ryan seemed to be healing.

He took classes in algebra, calculus and physics at a community college. He was determined to make good grades, Gonzales says.

Still, Ryan’s mother Jill, a nurse, tells PEOPLE, “You never knew how he’d react to what you said. I was frustrated because I didn’t know how to handle it.”

She describes something that would come over her son suddenly: “His eyes got dark, his facial expression became flat and he looked right through you. He told me, ‘Mom, I suffer every day.’ He looked fine, but he wasn’t.”

He thought about suicide. He told Jill, “I have felt like I was at the edge, Mom, but I would never do it.”

His memory problems persisted. He had trouble keeping up with appointments. Once, he ate a bowl of chili in the middle of the night and didn’t remember it the next day.

Petit asked Ryan to come work at a car wash he was opening, but Ryan said he couldn’t handle a regular work schedule. Petit worried that giving Ryan that leeway would cause problems for other employees, so they agreed Ryan wouldn’t take the job.

Frank and Jill say they wish they had understood what was happening to Ryan, and they have regrets. Petit does too. “If I had understood the situation, it would have been fine for him to come in when he could,” he says.

“If I had known he was dealing with a physical issue, that would have changed everything,” says Frank. “I never felt so unprepared as I did dealing with this.”

Yet, compared to where Ryan had been, Gonzales says she saw vast improvements. “I felt like it was him again,” she says. “He got off all those meds and started doing more self-care, and his humor came back — things I hadn’t seen in so many years.”

Gonzales stopped being his caretaker and moved out. They started dating again, and Ryan talked about getting married, calling her “My Penguin,” his forever mate.

He’d even picked out the date when he would propose.

The day he killed himself, April 23, 2017, he’d been home alone doing school work and studying for exams. Looking back, Gonzales says she thinks he hadn’t slept for three nights straight.

When Frank and Jill got home, they discovered his body.

Shocked and devastated, the Larkins did as he had wished and donated his brain for research.

Knowing the truth — that there was scarring on his brain — brought them some relief.

Gonzales, now 30 and a data analyst for a solar company, wishes one of the doctors had told Ryan he might have blast TBI. “If just one doctor would have validated his feelings, if people weren’t all telling him it was behavioral, would it be different?” she says. “I imagine it would.”

Frank believes the many psychiatric medications prescribed for Ryan may have exacerbated the symptoms and hindered his recovery.

“The system is unprepared for this,” Frank says. “If they’re missing this whole diagnosis of brain trauma, we keep going down the same wrong road.”

Correcting the President

In January, in the wake of soldiers suffering TBIs in response to a retaliatory missile attack from Iran, President Trump downplayed the brain injuries as merely “headaches” and “not very serious.”

Frank felt compelled to respond.

“I wasn’t looking to create additional controversy,” he says. “It hit me the wrong way, and I needed to say something.”

A year before, Frank had stood next to the president and told Ryan’s story when Trump signed an executive order for a new military suicide prevention task force.

He wrote a letter to Trump on Jan. 22: “It is difficult to put into words the impact that your statement had on me and my family today…it was a hard hit to the gut. An undeserved punch felt by every person suffering from a TBI, their shattered families, and supporting communities who struggle everyday with the consequences of insidious brain injuries.”

“Mr. President, my son had ‘invisible wounds’ … Because our current medical imaging technology cannot see this microscopic level of injury, we don’t know how many of our warriors and veterans may be suffering from impact or blast TBI,” Frank continued. “Further, there is an increasing body of evidence linking TBI (biological injury) to suicide. When the wiring in the head is damaged, things do not work normally, which is no different than a damaged power grid following a hurricane.”

Frank asked the president to increase the urgency for research related to TBIs.

“I suspect that if your family had been previously touched by brain injury, your statement would never have been made today,” he wrote.

So far, he says, he has not received an answer.

William “Doc” Schmitz, national commander of the group Veterans of Foreign Wars, called the president’s remarks “misguided” and said he should apologize.

“TBI is known to cause depression, memory loss, severe headaches, dizziness and fatigue — all injuries that come with both short- and long-term effects,” Schmitz said in a statement in January, adding, “Our warriors require our full support more than ever in this challenging environment.”

During Secretary of State Mike Pompeo’s testimony to the House Foreign Affairs Committee last month, California Rep. Brad Sherman asked him if he’d like to apologize on behalf of the administration.

“We take seriously every service member’s life,” Pompeo said. “It’s why we’ve taken the very policies in Iran that we have.”

“I’d like to stress that we take this issue very seriously,” Defense Secretary Mark Esper told reporters in January, days after the president’s comments. “DOD is a leading contributor in the treatment and research of brain-related trauma. We do everything we can to identify, treat and help our service members recover and return to duty.”

As the number of reported TBIs continue to climb following Iran’s Jan. 8 ballistic missile attack on the Ain al-Asad air base in Iraq — the total now reportedly stands at 109 — the issue only grows more relevant, experts say. Those are injuries that can be detected, while many more may not be.

Looking for Answers and the Challenges Ahead

Jason Redman, who retired from the Navy after 21 years following gunshots to the arm and face, has been vocal on the issue.

“I’m losing too many friends to suicide,” he tells PEOPLE.

“These brain injuries are leading to brain degeneration, and guys are committing suicide because of that degeneration,” says Redman, also the author of memoir The Trident. “Some of them are finding answers in the bottom of a bottle or they’re finding answers through self-medication or opioid addiction. The military tries to do a good job, but sometimes they don’t know the answer and they can’t get this person to conform to military standards because they’re having issues.”

There are challenges to learning more about blast TBIs.

“Right now, there are no biomarkers, there’s nothing to be able to diagnose it, so it’s a little out in the unknown,” Redman says. “Science doesn’t back it up, so it’s your problem, it’s a behavioral problem. We know the brain gets rewired from these blast injuries. My brain was similar to this. You’re trying to sleep but your theta, or alert wave, is continuing to run 1,000 miles and your brain waves are not in sync.”

Redman says combat veterans with physical injuries can have fulfilling, purpose-filled lives, but it’s much harder for those who sustain a brain injury.

He sits on the veterans committee for Concussion Legacy Foundation, a non-profit known for supporting brain research on football players. He recently posted a video on social media touting Project Enlist, encouraging vets to donate their brains upon their deaths.

The VA-BU-CLF brain bank covers the cost of donation. “The only way to fight this,” Redman says, “is through research.”

Dr. Ann McKee agrees.

“There is a clear shortage of brains from blast-exposed veterans,” she tells PEOPLE. She is the director of the Boston University CTE Center and chief of neuropathology at the VA Boston Healthcare System.

She says: “We urgently need more brains.”

Preliminary results from McKee’s studies on diseased vets have shown that after a blast injury, changes in the brain include inflammation, damage to small blood vessels and white matter fibers and sometimes chronic traumatic encephalopathy (also known as CTE, a degenerative disease which is notoriously diagnosed in football players).

Perl says researchers also need brain donations from people who don’t suffer from these types of injuries, for comparison.

Despite President Trump’s statements, the government is invested in better understanding — and addressing — TBIs in its military personnel.

The Department of Defense sponsors the Center for Neuroscience and Regenerative Medicine (CNRM) Brain Tissue Repository, and the VA is involved in numerous studies on TBI.

Months after Ryan’s suicide, the Navy began baseline cognitive testing and re-testing every two years in an effort to catch symptoms earlier and make sure anyone who needs it gets additional care, according to Capt. Tamara Lawrence, a spokeswoman for Naval Special Warfare.

Troops are sometimes loathe to seek help for this because of the perceived stigma of not being tough enough for the job. Some fear their symptoms may stand in the way of deployments. Routine testing is meant to solve that problem, and it helps the military collect data to study blast TBIs.

Redman and Ryan’s dad both hope the government will do more to find answers for military personnel and vets who are suffering from their service to the country.

While figures show, that since 2000, more than 400,000 service-members have suffered a TBI, Frank is convinced undiagnosed brain injuries would add significantly to the tally. He thinks it is a major reason the suicide rate among veterans in America is so high.

In 2017, the year that Ryan killed himself, so did more than 6,000 others.

“I always felt the Navy chewed him up and spit him out,” Gonzales says. “When he was no longer of use to them, they were done.”

‘His Story Has Touched So Many’

On a recent afternoon, the Larkins sat in their living room with Ryan’s therapy dog, a Belgian Malinois Ryan named K?pek (“dog” in Turkish).

They watched a video of their only son, alive again in the desert with his fellow snipers, not wearing his helmet because he thought it was thinning his hair.

In another video, a wave of energy was clearly seen from each explosion.

“His story has touched so many people,” Frank says. “We can only hope change will come.”