Continuum of a Nightmare

Photo of Darryl Talley from Janine Talley personal collection.

The parking lot of a modest apartment building in Westover, West Virginia seems an unlikely place to come to terms with one’s wide-eyed naiveté to business acumen. Just as being the then girlfriend of a college football star, linebacker Darryl Talley, required me to learn what a first down and a blitz were, that cool fall night in the parking lot of Darryl’s apartment building found me in the unsolicited position of uncovering and confronting the questionable business practices of professional sports.

It highlighted the moment, going forward, when I’d forevermore apply an attitude of skepticism in all matters pertaining to Darryl’s career regardless of the approval of others inserted into the equation.

On that still vividly clear autumn evening, I’d been in my apartment styling my hair with hot rollers and applying makeup, or as Darryl called it, “decorating”, when he arrived to pick me up for a night on the town. It was midway through his senior season at West Virginia University, and earlier that Saturday afternoon the Mountaineers faced the Pitt Panthers at Three Rivers Stadium.

The game, dubbed the Backyard Brawl, had always been, for both the Mountaineers and the Pitt Panthers, and their fans, a highly anticipated contest between the rival teams. That day, Darryl had a career-defining game and we intended to celebrate. He’d intercepted a Dan Marino pass which set up a WVU field goal, scored a touchdown off of a punt he’d blocked, and racked up 10 tackles. Although the Mountaineers lost to Pitt,16-13, Darryl was responsible for leading his team to 10 of WVU’s 13 points scored.

Before we went out, Darryl wanted to stop by his apartment to pick up his wallet. As we parked and he stepped out of his brother’s Chevy Nova, two men I didn’t recognize exited a sedan and approached Darryl. As safe as I’d always felt in Darryl’s company, I was frightened by the men’s presence until Darryl voluntarily went with them and got into the back seat of their vehicle. Once he did that, my fright turned to confusion. Who were these guys and why was Darryl sitting in a car with them?

After a half hour or so of fiddling with the radio, tapping my fingernails on the door handle, and separating each of my overly-mascaraed eyelashes with a safety pin, my confusion into anger. What the hell was going on inside of that car?

About an hour later, Darryl emerged from their vehicle and ran up the stairs and into his apartment as the two men drove off. Minutes later, Darryl returned with his wallet. I had questions. It turned out the two men were sports agents. They’d driven from Cleveland, Ohio to Morgantown, West Virginia and lingered in Darryl’s parking lot in an attempt to persuade him to sign with their agency as his representation in the upcoming NFL draft.

That dark, chilly October night outside of Darryl’s apartment gave my then nineteen year-old-self a first glimpse into the ruthlessness of professional sports. It also set the tone for the remainder of the 1982 football season: Darryl didn’t have the finances for a telephone in his apartment, so agents from all over the country rang mine in an effort to convince him to sign with them.

Heading into the 1983 NFL Draft, The Dominion Post ran a column about Darryl and their prediction for his longevity in the NFL. The writer estimated Darryl had the stamina to play for 10 years. The concept that I’d be 29 and he’d be 32 before his career ended sounded so far out of reach, I could barely fathom it.

In reality, Darryl’s career as an NFL linebacker lasted an astonishing 14 years; he was 36 years old when he played his last down of professional football. Since then, I’ve beaten myself up trying to pinpoint the exact moment I realized Darryl was no longer the Darryl I met my freshman year in college and fell in love with one balmy September night.

Photo from Janine Talley personal collection.

The closest I can come to a single, defining incident was one day after practice when, in 1995, Darryl played for the Atlanta Falcons. He came home and told me and our two young daughters to get into the car with him; he was in pursuit of a ball.

He played football, so I wondered why we needed to buy a football when the Falcons had plenty at the facility he’d just left. He explained he was on a quest for an exercise ball he’d used earlier that day while working out and he wanted one for home. What follows is a bizarre, head-banging incident that set our family on a trajectory of countless bizarre, head-banging incidents for the next 24 years, and still unceasing.

We, along with our two children who’d not eaten dinner nor done their homework, set out on an aimless, relentless course of driving from strip mall to strip mall with little more information from a trainer who worked for the Falcons than the store which sold the ball was “near the mall”. If anyone’s familiar with Atlanta’s abundance of malls and even greater abundance of strip malls, we would’ve had better luck following the yellow brick road and finding Oz.

We pulled into and out of parking lots for hours, slowing down at store fronts that, I eventually discovered, Darryl deemed might sell exercise equipment. At one point he even went into a GNC hoping a purveyor of vitamins might know where exercise balls were sold. At the time, the now ubiquitous huge rubber balls every fitness enthusiast uses to strengthen their core, the Swiss ball or stability ball, were not commonplace, and I had a difficult time envisioning what Darryl was attempting to explain he was in search of.

I tried to reason with him that since it was so late and the Falcons had these balls available for his use, one night wouldn’t make a difference in waiting until he returned to the team facility and could gather more accurate information as to where the ball could be purchased. Besides, it was so late I asked how much use, if he found the ball, he’d get out of it that night. It wasn’t a matter of fitness: he was in prime physical form and had already burned more calories at practice that day than most people burn in a week. He wouldn’t surrender before we had a major battle in front of our daughters, and he didn’t speak to me for the rest of the evening. Over a ball.

From that day forward, Darryl was on an escalating path of inexplicable behaviors leading me to believe my husband was going insane. There are many, many more stories I could drag across this page to try to make the unfamiliar grasp what we try to manage without support.

I write about this thing with no name, this thing invading so many professional football players’ brains, that for some reason no neurologist can or will legitimize and give a clinical term in a living person, because it deserves understanding. When Darryl retired from the NFL there was no networking system like Facebook for wives to commiserate and compare stories. Who knew what signs to look for in 1998?

This thing with no name wasn’t yet a thing. Now we’ve got wives on a private Facebook page, whose husbands are just a few years into retirement, saying in anguish, “I think there’s something wrong with my husband, he’s experiencing mood swings, has become paranoid, depressed, impulsive, isolated from me and the kids, and he can’t control his temper. He’s said things like me and the kids would be better off without him. I’m scared. I think he has CTE.”

Thankfully, and sadly, they now have a support system of hundreds of wives who live with husbands suffering the same symptoms. Many of us didn’t have that. We all thought we were alone on an island of despair, and this brew of achingly confusing symptoms was exclusive to our husband.

We thought just our husband was losing his mind, and we beat ourselves up trying to figure out its source. We blamed ourselves. We thought it was us: our hair, our weight, our laugh, our cooking, the way we chewed, the kids, the color of the carpet, the temperature of the room. We thought preposterous thoughts because we were at a loss for an explanation.

One night, in a moment of absolute hopelessness, I prayed to a God I hardly believed in to take Darryl. I thought his need for peace outweighed any grief I’d experience in losing him. That was, of course, before CTE was identified. Then, when it was discovered, and I was able to connect the dots of Darryl’s symptoms with those of chronic traumatic encephalopathy, I felt a sense of morbid relief. All of these symptoms Darryl was suffering finally had a name.

The caveat: CTE is only diagnosable post-mortem, via an autopsy. There is no conclusive test for the living, so neurologists, and psychiatrists, and psychologists, and therapists treat the symptoms that are treatable, though not all symptoms are treatable in every case.

I know of wives whose husbands have tried upwards of a dozen different medications to ease their symptoms, with no success. I know of wives who have had to resort to committing their husbands to institutions. I know of wives so desperate to find relief for their husbands they’re willing to let them participate in clinical trials that seem the equivalent of modern-day snake oil: lotions, potions, creams, and outlandish-looking contraptions attached to skulls delivering some sort of stimuli and supposedly providing feedback from the brain.

A lot of opportunists have surfaced trying to make a buck off of the suffering and the desperation and the vulnerability we surrender to. I’ve fielded phone calls and emails from these peddlers, and oftentimes the exploitation is so obvious that I haven’t been congenial in my responses.

What’s disturbing is no one will give a clinical name to this exclusive intermix of symptoms former NFL players are suffering while they’re alive, so the term “dementia” is heaped onto these guys in its broad clinical definition. Therefore, when these men, who are plaintiffs in the Concussion Settlement, prepare to have their baseline assessment program testing, or BAP performed, they’re already set up to fail.

The outcome is at the mercy of the numerous doctors administering the tests, and their subjective criteria for diagnosing dementia varies widely. It’s demoralizing to hear people dismiss what we’re battling because athletes make piles of money.

If, tragically, a player suffers a career-ending injury such as paralysis, unrestricted compassion is extended to him, as it should be. Why isn’t the same compassion extended to players suffering brain damage?

The amount of one’s salary should not invalidate one’s expectation of reasonable mental and physical health once a career has ended. It’s also exasperating to hear people say players should have known the risks involved in playing professional football. At 22 or 23 years old, everyone thinks they’re invincible.

To that point, all football players expect to be injured during their careers and they all know they’ll retire with physical afflictions. Universally they know they’ll someday have arthritis or at worst need a knee or a hip replacement.

I remember lying in bed with Darryl one night some 30 years ago watching a show about the great Jim Otto. The story highlighted Otto’s unfathomable physical pain from years of playing professional football. I still remember the scene showing Otto, who at the time was in his mid-forties, attempting to get out of bed in the morning.

I say attempt because his struggle just to put his feet on the floor and stand up was, at the time, incomprehensible: his toes were gnarled and contorted, his knees were swollen like risen dough. I turned to Darryl and asked if that could be him someday. Before that moment I’d never considered those sort of physical limitations in Darryl’s case. He reassured me that Otto was an “old school” player who was the exception not the rule.

That said, no one who played professional football 30 years ago anticipated they’d be suffering from brain damage. Darryl’s inability to use good judgement, reason, as it’s called, is exhausting. When he lost that ability, it was the beginning of the decline for everything in our lives.I can’t talk with him about anything. We fight daily because he’s unable to have a normal husband/wife conversation. There are times when decisions need to be made and he can’t do it.

Photo of Darryl and Janine Talley from Janine’s personal collection.

I often compare this thing with no name to the early years of the AIDS epidemic, when it was first identified but wasn’t accepted or legitimized or seriously researched until it affected the mainstream population. The difference here is this thing with no name will never affect the mainstream population. Its exclusivity to athletes limits its research, its clinical terminology and, ultimately, any hopes for treatment and a cure.

When Darryl received notice of the dates and times of his BAP testing, we realized it was the week after Thanksgiving, 2017. Darryl’s psychiatrist advised that in order for an accurate diagnosis, he’d need to go off of his medication that helps with his depression and brutal mood swings. The thirty days leading up to the two days of testing were hell for Darryl, me and our daughters. With each passing day that he weened himself from the medicine prescribed to make him a better husband, father, and member of society, the worse he got. Couple that with the anxiety associated with the impending testing, and it’s almost redundant to point out how unbearable Thanksgiving was for everyone in our immediate family.

The first day of testing was with a neurologist and the bulk of the examination was physical, evaluating Darryl’s reflexes, balance, and strength. The remainder was verbal, where the doctor gave Darryl three words to remember: elephant, apple, car. She then went about asking him several questions regarding his surroundings and asked him to draw a picture.

After that, she asked him to say the three words she’d asked him to remember. Darryl said “elephant”, then he said “peanut” then said, “No, that’s not right”, thought about it for several seconds then blurted out “apple!” with a sigh of relief. Then he got to the final word and I could see how earnestly he was trying to recall it. He looked like he was in pain.

Foolishly, I tried to telepathically send him the word, but he couldn’t bring it back, and the look of defeat on his face was heartbreaking. On our ride home he asked me, “Tell me the truth Janine, how hard was it for you to remember those three words?”

I told him the truth: that it wasn’t difficult for me at all. His inability to remember the word “car” haunted him so, that a few days later he brought it up again. He said he could’ve sat there all day and would’ve never remembered the word.

The morning of the second round of testing was especially tense. We were informed the neuropsychological interview and series of exams would take around eight hours, and breakfast was encouraged. We stopped at a Denny’s near the doctor’s office to eat.

Darryl was anxious about the parts of the testing that would require him to read and write. Over the past few years it’s become harder for Darryl to read and write at a normal pace. I complete forms and write correspondences for him. I even tweet for him; he speaks what he wants to tweet and I type it. When he sends text messages, he usually depends on Siri.

Ordering from a menu is also a challenge for Darryl, and this morning was no exception. As the server took our orders, Darryl asked for sausage, even though he and I both knew that wasn’t what he wanted. I reminded him that Denny’s serves link sausage and he only likes sausage patties, so he attempted to correct his order but still asked for sausage.

I again told him they served link sausage and what he wanted was bacon. It took Darryl three attempts before he could tell the server he wanted bacon with his eggs. When she brought our food, his plate had sausage links with his eggs instead of bacon. He was so frustrated with himself and the server was so confused by this point, he snapped at her when she said she’d correct the misunderstanding, telling her he had an appointment and didn’t have time to wait. When she walked away, I told him he could’ve been nicer in his delivery to her. Big mistake. That caused a fight between us in a booth at Denny’s for everyone in the restaurant to witness.

It also caused me to walk out, get into my car and drive off, leaving Darryl to walk to his BAP appointment. The tension leading up to that day was more than either of us could withstand and the Denny’s incident was my breaking point. As I drove toward the interstate and could see Darryl, through my rearview mirror, walk up the street, my conscience wouldn’t allow me to leave him to face the day alone. I circled the block and met him in the doctor’s office.

The first part of the exam was an interview with the neuropsychologist. He asked questions pertaining to Darryl’s daily life: routine, work, hobbies, hygiene, ability to feed and clothe himself, ability to handle finances, ability to complete routine tasks. He then got into the more personal fabric of life like the dynamics of our relationship, our daughters, his parents, and how he interacts socially.

I listened as Darryl answered, then I interjected that he wasn’t forthright with many of his answers. I knew he was holding back partially out of embarrassment, and partially because he simply couldn’t remember or didn’t see certain things in himself as I and our daughters do. He’s a proud man and I know facing one’s inabilities is difficult, but we’d already discussed this days earlier and again on the drive there, so I thought he was clear on the purpose of the visit and holding back wasn’t helpful to his objective.

The doctor bluntly told me I’d have time to contribute, but first he wanted to hear from Darryl, furthermore, he told us that in his diagnosis he wasn’t allowed to consider anything I divulged. What? I live with the man. I’ve watched his deterioration for years and deal with the consequences. I’ve been forced to come up with ways for both of us to survive on a daily basis. Besides, the letter Darryl received scheduling his BAP testing strongly encouraged the accompaniment of the spouse or someone familiar with his daily routine.

When the interview portion concluded, Darryl was taken to another room to begin the written testing. The neuropsychologist told me he’d be available for a short time and I was welcome to speak with him if I thought of anything he should be aware of. Since he’d earlier told us he was prohibited from considering any of my input in his diagnosis
of Darryl, I was confused, but took him up on his offer and spoke with him privately. I offered information regarding questions the doctor asked Darryl earlier that I felt he wasn’t being candid about.

I also showed him a photo of a bizarre, inappropriate outfit Darryl had put together for himself to wear to his cousin’s funeral. I took the photo to show our daughters because neither were living at home and I often sent them photos of things their father did that had become out of character. I also told the doctor Darryl had referred to his cousin, whom he’d been close with all of his life, as “that girl” because he couldn’t remember her name.

Three months passed before Darryl received a letter from his attorney containing both doctors’ reports. Darryl was denied a diagnosis of dementia. The report stated the denial was due to a discrepancy in the cognitive testing because it varied too much and for “over reporting of symptoms”.

The cognitive parts of the testing Darryl performed poorly on were the exact things he struggles with on a daily basis. The parts he performed better on are the things he doesn’t struggle with as often. These cognitive concerns were highlighted and discussed in the interview with the neuropsychologist prior to the testing.

It should be noted that Darryl didn’t reach the mean on any portion of the testing. One prearranged afternoon of these guys attempting to solve puzzles and recall the content of a story they’ve read isn’t going to diagnose what’s invading their brains. CTE only presents after death because there’s no test for the living. It’s there while they’re alive, and the gauge is the commonality of the specific batch of symptoms that
intensify until they’re ghosts of their former-selves.

The doctor’s accusation of “over reporting of symptoms” is insulting and in absolute contradiction to what Darryl divulged. I’m the one who was frank even though we were told nothing I contributed could be considered in the evaluation. Meanwhile, the neuropsychologist cites on three pages of his report what I disclosed to him during our discussion, and includes those disclosures in his summary of Darryl’s diagnosis. I told exactly what I live with on a daily basis and over reported nothing.

I wish we didn’t live like this. I wish this concoction of unwelcome manifestations hadn’t invaded our lives; it’s killing our marriage, it’s killing our family, and it’s slowly killing both of us.

Scores of families have been ruined by this thing with no name. Some husbands and wives have divorced, while many other marriages are hanging by a thread, with no chance of ever restoring the damage done to their relationships. Children have seen and heard so much unhinged behavior by their fathers, they’ve become addicted to alcohol and drugs. Most of us are in therapy, myself included. We are fighting a battle designed to lose.

Editor’s babble: We are so grateful to Janine Talley for sharing her heart-wrenching update about how Darryl and family are coping, and send all our love their way. You can find Janine on Twitter @J9Talley. Thank you, J. We love you.

8 Replies to “Continuum of a Nightmare”

  1. My heart goes out to you. Stay strong and hopefully one day he’ll get the medical and financial support he deserves.

  2. Pingback: Janine Talley’s story of her husband’s decline because of football – Anthony Moretti, PhD

  3. OMG I knew 56 was having CTE/dementia problems but your writings have put a blunt yet necessary perspective to what your family is going through. I’m old enough (64) to remember Spiderman doing his thing for my beloved Bills. I know there is no “cure” but hopefully with new medications coming available his symptoms can be managed more effectively. If Darryl ever does any personal appearances I would consider it my honor to shake his hand! Best of luck to you also – what you have described in your battle to help Darryl is love in it’s purest form.

  4. Thanks for sharing your story. It is both insightful and heart breaking. Darryl was my favorite player from those great teams. I have been following your story the last few years and I appreciate the strength and courage you both are displaying during this difficult time. Bless you both.

  5. Janine, Darryl, Alex and Gabby, my heart breaks for your family. I respond to this article with tears in my eyes and a heavy heart. I have been friends with Janine for as long as I can remember and have supported her relationship with Darryl since their love story began at WVU. Janine and I previously had gone years between speaking, due to life, family and distance. However, I always sent a Christmas card and thought of her and her family frequently. They visited my late husband and me when my first child was born and I was able to visit when Gabby was born. Regretfully, I had no idea that Darryl had been struggling with symptoms of CTE. It wasn’t until my late husband took his own life suddenly and tragically without warning in April of 2011, that I received a call from Janine. The terror and pain in her voice, ended with me consoling her through my own grief and trauma. I then came across Janine’s article about their financial struggles and Darryl’s declining physical and mental health. Realizing Darryl’s suicidal thoughts quickly made sense of Janine’s hysteria. We now had a reason to connect more frequently, because that’s what friends do. I can attest to Janine’s emotional pain during the time Darryl was being weaned from his medications, prior to his BME in Boston. Janine felt as she had so many times in the years prior of virtually living in “HELL”, as we imagine it. Yet, she continues to endure and support the Darryl she fell in love with over 30 years ago. I pray that research quickly find a way to diagnosis and treat CTE, before death. These athletes and their families need to be financially and medically compensated for the rest of their lives. They don’t deserve being judged by ignorant people. Those people will be judged by GOD in the end and hopefully before, by karma. Janine, Darryl, Alex and Gabby -please know how loved you all are. I am always here for all of you and look forward to seeing you soon in Florida. Only love, Deidre <3

  6. Dear Janine. You need to write a book. You have excellent writing abilities. I have read your comments many times. I will always keep you and yours in my thoughts and prayers. I wish you the best. I have me Darryl several times at Jim Kelly’s golf tournament. God bless.