Finding The Reason
By Brandon Priddy : @abpriddy
Everything happens for a reason.
It’s a trite platitude that we hear daily. A way to sooth our souls when the trials of life threaten to overwhelm us. A car wreck, a broken leg, a sick relative. Maybe we believe it, maybe we don’t, but we certainly WANT to believe it. Have to believe it. It’s not enough to accept that we’re all simply winners and losers to the arbitrary whims of fate. One man lucky and another man not. One woman in a hospital bed and another home with her children. One child asleep safely under her covers…..and another gone.
We want to believe there’s a larger order, a higher power, something – anything – that holds it all together. It’s the backbone of nearly any major faith but in the world we live in it can be a difficult idea to fully accept.
Sometimes it’s hard.
It was hard for Nefeterius McPherson who was a young graduate law student at Southern Methodist University Dedman School of Law when she found out she had a rare bile duct/liver disease called Secondary Sclerosing Cholangitis. The disease sapped her strength and led to numerous trips in and out of hospitals for treatment. But she fought through the exhaustion to finish law school (cum laude) and get a great job with the new Obama administration as Press Secretary for United States Trade Representative Ron Kirk.
It was an amazing opportunity that put her on the fast track to success, but the travel eventually wore her body down and she gave up the job to take up a new position – waiting on the liver transplant that was necessary to save her life. She remained upbeat and positive, but on quiet nights in the back of her mind, she had to wonder why…….
Around that time on the other side of the country there was another girl wondering why. This one younger, but armed with an equally positive outlook and desire to “make the world a better place.” She was just beginning to enter that adolescent world where you’re one of a million kids trying to find your place, confused about who you are and where you fit. Confused kids can be mean kids though, and this little girl never understood why people would ever be so hurtful to each other. Why they would tease, denigrate and bully. She wanted to make the world better - why would anyone want to make someone else’s life worse?
Why would anyone do that? Why?
From the time she was old enough to know what football was, that little girl, Taitlyn Hughes, was immersed in the world of the West Virginia University Mountaineers by her father, John Hughes. He bought her first cheerleading outfit at the age of four and fall Saturdays watching the Mountaineers were a regular occurrence. “I guess I never gave her much of a choice” her father recalls laughingly. “But she loved it. We watched games all the time.” The little girl was fascinated by this game that could reduce her father to a cheering, screaming lunatic and transfixed by the larger-than-life stadiums on TV that were foreign to the small town of Elkins where she was growing up.
As much as anything, she loved the looks of sheer joy on the faces she could see as the television cameras panned the crowd. For a child who, like all children, wondered why adults weren’t completely happy all of the time, she was thrilled to find they could at least jump for joy some of the time.
It was a special treat for that little girl to finally make her first pilgrimage to Milan Puskar Stadium. For a family split by divorce the game provided a unique time when mothers, fathers, stepfathers, sisters – everyone – came together for one common cause – cheering on the Mountaineers. But the special experience she had that day was way bigger than just her family. It was 2009 and the University of Connecticut Huskies were coming to town, but with a heavy heart. The previous Sunday cornerback Jasper Howard had been killed in an on-campus stabbing and the host Mountaineers treated their visitors with a solemn respect and sensitivity that was applauded nationally.
Having seen those gold and blue crowds unify to support the home team, Taitlyn saw something even more amazing that day – they united to support an opponent. The entire crowd greeted the Huskies with a standing ovation when they took the field and a moment of silence was held prior to kickoff as the teams exchanged handshakes. Stickers with Howard’s number 6 adorned the helmets of both teams. WVU pulled out an exciting victory but the game was secondary that day. People were nice to each other.
She was hooked. Anything that could bring people like that together for a common cause and inspire such joy was something this little girl could get behind. From then on she couldn’t get enough of her Mountaineers. She went to more games, bought more shirts and left no doubt as to where her loyalties lay. Two years later she would take in a road game at Maryland, but not before insisting that her father buy a bright gold shirt to wear to the game that announced to the world she was “True Gold And Blue.”
It would be the last game she saw in person.
“What’s that for?”
It was a typical question for a curious 11 year old about the details of the drivers license she was accompanying her mother to renew. She was asking in particular about the back section of the license that dealt with organ donation. Her mother explained, but if the question was typical, that little girl’s response was anything but. She immediately grasped not only the concept but its importance.
“I want to do that. If anything happens to me, I want to be a donor.”
But she didn’t stop there. “She asked me, ‘Dad are you an organ donor?’ her father recalls. “I said I wasn’t sure.” She checked and they made sure. “She just wanted to make the world a little better” he remembers. “She would walk into a room and be worried about everybody else and how they were doing. She was a special, special little girl.”
It’s the type of thing a parent wonders as they stand by, watching the life drain out of a vibrant 12 year old girl who simply woke up one morning with a very bad headache. A life on the cusp of finally coming into its own snuffed out by the most arbitrary and unforeseeable of conditions, arteriovenous malformation. It was a hidden defect that laid dormant in her little mind until the day it let go and caused a catastrophic brain hemorrhage, setting in motion a chain of physical events that no body could survive.
Little Taitlyn passed from this world on November 6, 2011, right in the midst of an historic Mountaineer season that she would never see. She wouldn’t see the Orange Bowl 70, wouldn’t see an offseason full of hype, wouldn’t see Dana Holgorsen proclaim on national TV that “the future is pretty bright here at West Virginia,” wouldn’t see countless touchdowns by Tavon Austin, her current favorite.
But she would live on.
The innocent question and wise-beyond-her-years decision of that little girl would have ramifications for 4 other people. With her decision to be an organ donor, Taitlyn did indeed make the world a better place for 4 other families…..and many, many more.
Nefeterius McPherson woke up in her hospital bed with two things: a new liver and a burning curiosity to know where it had come from. She had been the recipient of a donor liver at Georgetown University Hospital and was grateful for her new lease on life. But she knew that gift had come at a cost and needed to know who this generous soul was. She knew another man on her floor had been the recipient of a pancreas from the same donor and knew that both had come from a children’s hospital, so armed with a little information and a lot of time, she went looking.
A quick obituary scan narrowed things down and a Facebook page revealed the truth. The donor was a 12 year old girl who had died of a sudden brain hemorrhage but had made a prior request that should something befall her, her organs be donated. It was humbling to know that someone so young had displayed such maturity and thoughtful foresight, and Nefeterius resolved to both keep her donor’s memory alive and spread the word about the importance of organ donation.
And it is here that we begin to understand what good could possibly come from such tragedy. How a unique little girl lost under a unique set of circumstances set in motion a chain of events that now reverberate all over the country. Because if you’re going to change the world, and you’re going to make a difference, well a former press secretary is a pretty good place to start.
As Nefeterius says “I know how to tell a story.” And tell it she did. She set up a Facebook page: “Nefeterius Akeli McPherson: liver transplant recipient.” She got the word out and posted a new picture on the 6th of every month (the day of her transplant) to keep folks abreast of her improvement. She took it upon herself to learn more about her donor and was struck by one big similarity: their football fanaticism.
Raised in Texas Nefeterius didn’t have much more of a choice than young Taitlyn and grew up a rabid fan of the gridiron. Her teams were different: the SMU Mustangs, Texas Longhorns and Dallas Cowboys instead of WVU and the Pittsburgh Steelers, but the passion was the same. “The first thing I said when I woke up from the procedure was ‘I wanna watch football.'” As a fellow fan, she understood the importance of one’s team and how cheering on that team is among the greatest of tributes. Not only that but the more she learned about this WVU team and watched them….the more she liked them. REALLY liked them.
“Oh. My. Gosh” she says about the team, “I love them. Love Tavon Austin, love Geno Smith. They’re so FAST. So fun to watch!” She particularly enjoyed the offensive explosion from the Baylor game and was beyond impressed with the fan display that day. “I loved how they striped the stadium” she said. “It just looked amazing with the colors and the contrast. I’d never seen that before.”
There was a looming date on her new team’s schedule that all but screamed at Nefeterius to come join the fun. West Virginia would be taking their first Big 12 road trip to Texas on October 6, eleven months to the day from the transplant. She wasn’t going to miss that game, but what to wear? Taitlyn’s family had given Nefeterius that same gold shirt the little girl had worn to that final game at Maryland, but she was apprehensive about the prospect of actually putting it on. It felt invasive.
“Nicole (Taitlyn’s mom) thought I should wear the shirt, but I wasn’t sure. Then the closer the game got, the more excited I got and finally October 6th couldn’t come here quick enough and I couldn’t wait to put that shirt on my back!”
And it is here that we should take a moment to marvel at this cosmic Rube Goldberg machine we call life and the wonderful ways in which it works. The ball rolls down the chute and triggers the lighter that catches a blue and gold cloud of joy and excitement and sets it aflame. Things happen that make other things happen and the result is something that we never could have foreseen.
Before the game as a simple matter of course she posted her monthly progress pic to her Facebook page – it was the 6th of the month – and of course, she was wearing that bright gold shirt. A brief caption described the situation but it wasn’t anything elaborate. She didn’t think a lot of it and went to the game. She says what happened afterwards “blew me away.”
Everything happens for a reason.
Certainly any fanbase at any time would embrace such a heartwarming story – but this isn’t just any fanbase and it wasn’t just any time. This is a WVU fanbase with an inferiority complex the size of the Appalachian Mountains and this was in the aftermath of as high-profile and significant a regular season win as the program had ever enjoyed. As Mountaineer fans scoured their Twitter feeds and Facebook pages there was talk of titles, Heisman trophies, burning couches and riots. The best and worst of WVU fans had once again laid bare, a fan base not quite able to shed the label of rowdy hard-partying rubes that permeates so much of their national (and local) coverage.
Then something else. Something different. An eye-catching image of a smiling young woman in a bright gold shirt proclaiming she was “True Gold And Blue” and 140 characters that said it all:
The speed with which the Mountaineer Nation embraced the story was breathtaking. “It has blown my mind” Nefeterius says “You all are something else.” She was immediately inundated with Twitter messages telling her how great her story was and how much it touched people. Those messages often copied ESPN or WVU and insisted they “get this woman to a game!” or “include this on GameDay!” Facebook pages were ‘liked’ by the thousands. It was wildfire on a windy day.
For a group so accustomed to seeing the world point out their flaws, here was an amazing story of a little girl’s unfathomable generosity answered by the sincere and deep gratitude of the benefactor. It was the very best of humanity, the type of story that makes you smile for a moment and forget about the the everyday struggles – gives you a little hope in the world. And it was stamped with a flying WV for all the world to see.
When Nefeterius proclaimed that she was proud to now be a WVU fan, our chests swelled up. When we learned the story of little Taitlyn our eyes welled up. THIS was the West Virginia that we wanted the world to see, the generosity of her people and willingness to help a neighbor, all personified by a little girl who just wanted to help. It was heady stuff on the heels of a heady week, and the way the woman at the eye of this hurricane of hugs handled things just made it better.
With every tweet, every interview and every Facebook post by Nefeterius two things are of absolute primacy. First, conveying the generosity of spirit and truly special nature of Taitlyn. Letting people know how she dreamed of changing the world and more importantly how the preternatural understanding she possessed of organ donation allowed her to do exactly that. Scroll down the timeline: “It’s an absolute pleasure to keep sweet Taitlyn’s memory alive.” “I will ALWAYS honor the sweet girl who saved my life.” “She is my true hero.” Nefeterius’ Twitter feed is a veritable river of positivity and thanksgiving, a humbling reminder that selfless acts live on.
The second priority is where a little girl’s dream meets the press secretary’s skills. It’s where you finally find a semblance of purpose and begin to glean some deeper meaning from this amazing series of events. Nefeterius is a nonstop advocate for organ donation, a one-woman placard, bullhorn and advertisement all at once.
She informs: “Did you know that more than 115,000 currently wait on a lifesaving organ transplant? And more need tissue and cornea transplants.” She encourages, congratulating every recipient that messages her and throwing virtual “transplant confetti.” And she disseminates, sending out tweets on articles chronicling her story by the dozens. She did this before last Saturday, and in the wake of this massive wave of attention courtesy of WVU fans, she’s redoubled her efforts.
Tuesday was spent almost entirely in interviews. Everyone from the Associated Press to the Daily Athenaeum, the New York Daily News and little ‘ole TheSignalCaller.com. Having spoken to her late in the day I can personally attest that there wasn’t a hint of exhaustion and the genuine desire she had to share her and Taitlyn’s story carried through the phone. She recognizes the special role she has in this amazing chain of events and plays it with an enthusiasm and willingness that is humbling.
You listen to her talk, you see the impact of her story and you think, maybe things do happen for a reason. Maybe even the loss of a child can serve a larger purpose, because only in their innocence can a story like this find its full power and gain the ability to cut through the clutter and grab people and make them listen. An 11 year old girl made the conscious decision to do everything in her power to save lives – can any of us hear that story and not do the same?
The gold shirt is retired. It’s earned it. It served its purposed in this tale of loss and hope and will stand as its own small monument to the spirit of a little girl, the renewal of a talented woman and the power of a fanbase that was moved to act. It’s alone in the ability to rest however, as Nefeterius doesn’t seem ready to shut it down anytime soon. In addition to organ donor education she has more to share. The importance of appreciating every moment, of living every day to its fullest.
She now stops and smells the roses – literally. “You always hear about Texas bluebonnets and I’d driven by them a million times and the one day I just told my mom ‘stop the car.’ I got out and looked at them, smelled them, took pictures and soaked it all in. It’s the smallest things.” It’s a lesson that we would do well to heed and internalize in a world where we’re always worried about the next thing, the next weekend, the next game, the next recruit. Appreciate what you have, savor every hug and soak in every stadium-shaking roar.
You never know how many you have left.
There’s work left to do for this 38 year old woman with a 13 year old liver. Sure from this vantage-point it seems the tale has been told and the chain of events fulfilled, but you never know what’s around the corner, what possibilities await and what good can still be done. She has big dreams, “I am absolutely fascinated with The Rose Bowl. Every year during the parade there is a Donate Life float and when I saw it on TV this year, I cried. I am determined to see that float in person and then go to the game.”
The story’s thread will play out and the dominoes will fall and nobody can tell you for sure where they’ll end up. Good or bad, happy or sad, the events set in motion by a young girl’s question don’t seem anywhere near their conclusion.
Everything happens for a reason.
Sign up to be an organ donor at www.donatelife.net. Also visit Nefeterius’ Facebook page here and follow her on Twitter: @Nefeterius. Also please take a moment to visit the page set up in Taitlyn’s memory to raise awareness of school bullying. Do your part to spread the messages of two amazing women.
“Organ donation sees no race, gender, age, financial status or social class and that is a very beautiful thing.” — Nefeterius Akeli McPherson