How my kid sister's fight for life inspired my NY marathon journey and Ed Sheeran

Lining up at the Verrazano-Narrows Bridge in Staten Island at 10:30am on November 2, 2014 for the New York City Marathon was one of those rare moments in life that you realize will be with you until the end. To be in such a moment can feel oddly anti-climactic as reality can rarely live up to a dreamer’s expectations.

I knew very little about the journey that lay ahead, having rarely ventured off the island of Manhattan, my mind wandered to a familiar meditative state and became fixed on one thing and one thing only; my beloved little sister, Triona, who had passed away seven months previously from Cystic Fibrosis at 15 years of age.

Triona had come as a surprise in the first place. As the eldest of four brothers, I was well versed in the process of a new arrival into the family. 

My brothers and I had always enjoyed each other's company. Even as children, there was no great conflict between us beyond the usual petty jealousies and competition for our parents' attention. This was different, however. By all accounts, a slip of the tongue during a routine consultation informed my parents that a little girl might be added to their brood. The night that Triona was born, I was babysitting for a neighbor when my brother Colm came to confirm the good news. We stood at the front door of the house and talked delirious nonsense for a while.

From the moment she arrived in the world, Triona was unlucky in her health. A series of one-in-ten scenarios ensured that she was a unique case and the level of concern that we felt for her was pretty much constant from that point on.

The first time that I saw her, Triona was in an incubator beside my exhausted mother, in her first week of life, with a fresh scar across her stomach and too many tubes to figure out. When she was delicately placed in my arms, I put my finger in her tiny hand and looked into her eyes. I perceived a small squeeze and a look of recognition. It was too much to bear and tears streamed from my eyes. While my dad consoled me and assured that we were all worried for her, I was merely overjoyed to have met my little sister.

I recounted this story to her some 15 years later in the top flat of Temple Street Children’s Hospital while we waited for her consultant to arrive. Triona thanked me and told me that she loved me. I never regretted any time that I spent with her and I loved our chats.

As I ran through miles four and five along Fourth Avenue in Brooklyn, I truly felt that I was beginning to take part in the event that I had trained for through months of grief and expectation. The sheer noise, color and enthusiasm of the crowds which line each neighborhood can be a little overwhelming. I had run one marathon in Dublin and I knew that those first ten kilometers could be deceptive. The temptation to go ‘all-out’ during those early stages was fully indulged, however, and I ran through the six mile marker at Sunset Park in full confidence of reaching my sub-four target.

By the time I reached mile seven at Park Slope a hint of doubt had started to creep in. Although I was keeping apace with the group, I had noticed that they were conversing with a carefree ease that I was no longer capable of. I had struggled to take water on board while keeping my stride steady and even.

I stayed focused. I was running for Triona. My mind drifted back to memories of her...arriving at the waiting room of an intensive care unit in a children’s hospital to find your family sitting around a table of sandwiches and coffee is a frightening sight. While barely acknowledging it, we knew that this time was different. Throughout Triona’s life, we had become accustomed to the persistent worry and concern that her condition commanded. Cystic Fibrosis is a complex, genetically inherited condition which affects the body in many detrimental ways.

In simple terms, patients with CF produce huge amounts of thick, sticky mucus which clog the lungs and make it difficult to breathe. The strain placed on the vital organs makes it difficult for the body to function properly, to maintain weight and, in turn, to fight off infection. The daily regime of nebulisers, medication and breathing exercises is relentless.

Triona always struggled to stay fully one step ahead of her condition. While we waited for hours before we could see her, we tried our level best to keep our emotions and anxiety in check. Little did we know, we were destined to spend the next two weeks camped in that waiting room.

Halfway through mile seven, I started to realize that I was in trouble. I may just have made the cardinal error that every marathoner tries to avoid: starting out too fast. I am not a religious man. As a lapsed Irish Catholic, I have a healthy skepticism of organized structures which seek to control, dictate and impose belief. I am equally averse to any individual who claims to have all of the answers.

I am not devoid of spirituality. I put faith in people that I love and try to live as well as I can by the people who rely on me. I do not pray to God, nor do I request any special favor in my life for matters big or small. That said, for miles three to seven of the New York City Marathon, I spoke continuously to my deceased sister. I had decided to run this marathon within two weeks of her death and had tried to use the discipline needed to complete the training as a motivation to continue with my life. Triona would not have tolerated me using her death as an excuse to opt out.

As I ran through the unfamiliar streets of Brooklyn, I repeated in my head, my heart and perhaps out loud on occasion “look at what we’re doing Triona. This is us. We’re gonna do this!” As I closed in on mile eight, along the intersection of Flatbush and Lafayette Avenue approaching downtown Brooklyn, my earlier optimism had started to ebb away. The positivity of my earlier mantra had begun to disappear and I became increasingly aware that the other members of my running pack were in far better shape than I was. I needed assistance. As I approached the eight mile marker, my internal monologue had shifted to desperation and I pleaded with my sister, “are you with me Triona? I need to know that you’re with me…”

Taking the sharp right onto Lafayette, the crowd continued their enthusiastic support for the throngs of runners streaming through their neighborhood. In the distance, I heard the familiar sound of British artist Ed Sheeran’s mega-hit ‘Sing’ booming out of some strategically placed speakers on the side of the course. As I approached, the song became unavoidable and momentarily drowned out all around me. As if by instinct, I looked to the sky and tried my best not to break my stride. I quickly wiped the tears from my eyes and focused on the remaining 18 miles ahead of me.

The exact circumstances of Triona’s death were particularly unique and will take some time to comprehend. Triona was part of a close-knit group of quite determined and equally brash young girls. Despite the struggles that she faced, Triona’s teenage life was primarily about the next concert, clothes, nights out, boys, gossip, and sleepovers. In short, as her eldest, 30-something brother, I feared the uncertainty that the normality of these aspects of her life entailed yet, conversely, I knew that she needed them.

While my family were camped in the waiting room of the ICU hoping that things would improve, this group of young people embarked on a project that ensured Triona would make headlines across the world. As the devastating news that Triona was in serious danger filtered through, they began an online campaign through Twitter using the hash tag #songfortri, encouraging Triona’s favorite singer, Ed Sheeran, to dedicate a song to her.

As their campaign gathered momentum, they amassed over 40,000 tweets in 48 hours. Once Sheeran became aware of the campaign, which by this stage had been endorsed by celebrity musicians, actors, top-level sports stars, and his own grandmother, he immediately responded.

Through a mutual acquaintance who worked in the media, he procured our brother Colm’s mobile phone number and indicated that he would call that day. When Colm received the call, he put the phone on loudspeaker and rested it beside Triona’s hospital bed. Ed spoke to her for a few moments before playing an acoustic version of ‘Little Bird,’ her favorite song, for around four minutes.

Triona was surrounded by her parents, four brothers, their partners, her godfather, and her long-time nurse. When the song had finished, those assembled clapped gently and the consultant informed us that Triona’s heart had stopped. When he clipped Triona’s breathing apparatus free, the mask fell away to reveal a broad smile on her face.

Triona reposed at home for two nights. My brothers and I spent each of those nights sleeping on couches and duvets around her coffin after the waves of mourners had subsided. It seems odd to recall, but in those moments our mood was actually quite good. The crushing loneliness was still to come and the surreal nature of what was happening ensured that its full impact could be processed at a later date.

I do remember a quiet moment, sitting beside Triona’s coffin by myself and listing out to her some of the global news agencies which were covering her story from the twitter feed on my iPhone, “New York Daily News, LA Times, Time Magazine … what have you done Triona?! You’re a brat …” The story received extensive coverage across the UK, Ireland, Australia and US, in particular. I saw stories written in French, German, Italian and Polish mentioning her name over the coming days.

This attention would have sat quite comfortably with Triona. In each story that I read, there was a brief explanation of CF and what it meant for those who suffer from it. Triona believed strongly in creating awareness around CF and had embraced previous media opportunities to tell her story.

When my brother Aidan and I were approached by a producer on Ireland’s premier morning TV show to appear on-air to discuss Triona and my intention to run the New York City Marathon, we were happy to do so. I explained that had Triona received the dream lung transplant that would have given more time, the first plan that our family would have made would have been a return trip to New York. As this was not to be, I intended to do so in her honor.

Christmas in New York had taken on near mythical status for Triona. She tried to not let her condition get in the way of enjoying her life and there was usually a night out, holiday or social event looming which she focused on staying well for. While this could be cruelly taken away from her at the last minute, Triona always tried to get back on her feet and focus her energy on staying positive and looking forward. New York was always the ultimate dream.

Running through Williamsburg during miles ten and eleven are not particularly fond memories for me. As I struggled to keep apace with the sub-four group, I began to think of my family who had accompanied me to New York and their reactions to my split times as they tracked my progress online.

I must admit, I liked the idea of them preparing to meet me at various points around Manhattan and having to hurry a little quicker than expected due to my ‘blistering’ pace. Reality was slowly dawning, however, and I knew that this could not be maintained. I had mistaken adrenalin for conditioning and I was going to suffer as a result. Approaching Greenpoint at mile thirteen, I was still among the cluster of healthier looking sub-fours and becoming increasingly self-conscious.

As I passed the halfway mark at Pulaski Bridge, I slowed to a crawl and the group disappeared into the distance. I struggled for breath and took stock of where I was and what lay ahead. This felt dangerously close to the dreaded ‘wall’ and I still had half a marathon to run!

Why  had I chased a target that was clearly out of my reach on this occasion? Yes, I wanted to have done something exceptional for my sister, but when I completed my previous marathon, Triona was happy for me and didn’t even ask about my time; it meant nothing to her. I had worn a CF wristband that day which I gave to her after the run. I explained to Triona that when my marathon got really tough I had thought about her and how hard she fights while never giving in to CF.

It was incredibly cheesy and soppy, but Triona allowed me my moment and thanked me for the wristband. She did appreciate the sentiment and kept the wristband safe in her room. I was wearing it now, having found it among her possessions and brought it to New York. As a kind of ritual, I only wear it at big events and ‘target’ races. The romantic innocence of those first eight miles through Brooklyn, speaking to Triona as if she could hear me, now seemed dangerously naive.

My wife, parents, three brothers and their girlfriends had all traveled to New York, ostensibly to watch me take part in the marathon but moreover as a kind of secular pilgrimage in honor of our sister and daughter. We had all taken part in the 5K ‘dash to finish line’ event the previous day, crossing the iconic finishing line at Central Park and posing for group shots in some of Triona’s favorite locations around the park.

We had first traveled to New York as a family in 2004 when Triona was six years old. To her, the city seemed to present endless possibilities.

As the baby of the family, Triona was a very observant child and no doubt felt that as the only girl she had a special duty of care to her older brothers. As our brother Eoin remarked during his eulogy at her funeral, in 2004 he had found a note written by Triona which simply stated “the choices of my brothers sometimes worries me.” As if to prove the point, Eoin later solemnly brought his piece to a close by reciting ‘Rapper’s Delight’ by the Sugarhill Gang from the altar in a private joke to Triona; much to the amusement of the congregation and the chagrin of the parish priest.

While we posed for photos in various locations in 2004, Triona insisted that we took similar photos at the same locations during our return visit in 2010. In 2014, we traipsed around the park looking for a certain-shaped rock in the drizzling rain while trying to keep our emotions in check.

We were all wearing our purple running t-shirts (the color associated with CF awareness in Ireland) which featured a quote taken from a letter Triona wrote to Ed Sheeran in 2012 on the back. It read “stars, they are just so beautiful, they shine so bright for no reason at all.” A skyline of New York adorned the front with the slogan “breathe easy” written prominently across the chest.

Triona and I shared an interest in the Beatles and had posed for photos at the Imagine memorial at Strawberry Fields in both 2004 and 2010. Our shared interest in the Beatles had resulted in a trip to Liverpool to see the band’s museum and take-in a Liverpool FC match at Anfield. I had attended university in the city and I was eager to show Triona the sights.

During that trip, we stayed in the former childhood home of Stuart Sutcliffe, the tragic fifth Beatle who had remained in Hamburg after his friends had departed to pursue their careers. He died of a brain hemorrhage soon after. Over the years we had also attended a Paul McCartney concert and a rather cringy but musically sound tribute act. Triona had given the two-fingered peace sign in our photographs around Central Park on both occasions.

Recalling the photos in the ICU of Temple Street Hospital days before her death, Triona made the peace sign at me when I stood up from her bedside and went to leave the room. As the huddled mass of her family gathered around the imagine memorial for a group photo, seven months to the day of her death, our brother Colm produced a rather tacky, over-sized peace sign necklace of Triona’s that he carried with him. The group of ten responded by making the appropriate hand gesture in unison, as groups of tourists waited patiently to take their photos at the iconic mosaic.

I had spent several late evening hours browsing the personal videos of previous marathon participants on YouTube in the lead up to the race. One recurring location was the exit from Queensboro Bridge and on to First Avenue in Manhattan, where the crowd could be about five deep and the wall of noise and color made you envy every person that gets to experience it. Pulling myself together, I started into a slow jog and resolved to enjoy every remaining minute of the run.

I reminded myself of why I was there, that I was never going to do this again and that it would soon be all over. I wanted to hit Manhattan feeling like one of the sports stars I spend my weekends watching in various stadiums and differing codes.

My wife Maria has long since accepted that attending sports events is a huge part of my persona. When Ireland beat France and became champions of Europe I was there. it seemed to top off a really enjoyable few days spent with good people in a beautiful city. In many ways, this justified why I placed such importance on always trying to attend events and not just watching them in pubs or on the couch. On Monday evening in the airport on the way home, a telephone conversation with my mam informed me that Triona had been taken into hospital. By the following Thursday, we had been called into the ICU and a little over two weeks later Triona was dead.

As is customary with victorious Irish teams, players from the Irish rugby squad did the rounds in Temple Street Children’s Hospital with the trophy and young patients got to go back to school with one up on their classmates. When Jack McGrath, Sean O’Brien and the legendary Brian O’Driscoll called into Triona’s room, they posed for a photo and wished her well.

When Triona saw the photo, she was unhappy with it and summoned to newly crowned champions of Europe to come back to her room so it could be retaken. They dutifully returned and smiled for a second time. O’Driscoll was said to have been impressed by Triona’s tenacity and asked about her condition as they left the ICU.

Triona was very forthright in her personality. When meeting a medical professional for the first time, Triona usually inquired into their favorite childhood movie. She felt that if she knew the child, she could understand the adult. It turned the tables slightly too and perhaps Triona felt that she was a little more in command of her situation if she knew how to approach those responsible for her care.

It is one of the aspects of Triona’s personality that I still marvel at. Triona was aware of her position of influence within our family. She was the boss. She was secure in the knowledge that she could get what she wanted yet was never a control freak or unreasonable in her demands.

In stark contrast to my own childhood, my parents were quite financially comfortable by the time Triona had arrived. While I had always been well provided for, our luxuries were fairly limited. There was normally another brother on the way, so we holidayed in Ireland and went to the cinema on Christmas Eve. It was a contented childhood. Of course, Triona did enjoy the fact that she could always be given the latest iPhone or brought abroad if her health allowed it. She was never ‘spoiled’ in the actual sense. I mocked her once that she was and it hurt her feelings. Triona was very generous of spirit and thought constantly of others.

As her condition deteriorated, she became increasingly concerned for her loved ones and the impact that it would have on them. At times, she sought to protect us from what lay ahead and made light of the fact that she was so ill but was fully cognizant of the gravity of her situation.

While in the ICU unit of Temple Street, it was difficult for Triona to expel the daily build up of mucus that is a feature of CF. I knew that this was important so I attempted to broker a deal with her. I would never again smoke cigarettes if she could do this for me. She frustratingly indicated that she simply could not do it at that moment. Later that evening, she cleared her airways and instructed our dad to tell me that she had done so.

The fact that I smoked was a constant source of disappointment for Triona. Cystic fibrosis is a genetically inherited condition. If two people with the CF gene have a child, there is a one in four chance that the child will have CF. Colm and Triona were both born with CF. I had escaped the condition yet persisted in destroying my healthy lungs through smoking while Triona struggled to breathe.

It takes a rare kind of selfish to smoke in this scenario, much less to bring it up at that point in time. Triona did not express her anger to me for smoking, rather more her disappointment and concern for me. When I saw her the following day I told her that I would honor the deal. She sternly asked me whether I had smoked that day and when I told her that I hadn’t, she hugged me and told me that she was very proud of me. It reduced the nurse on duty to tears.

Peeling off the Queensboro Bridge, I resolved to enjoy the moment as if I were running out in Croke Park on All-Ireland final day. There are approximately two and a half million spectators that line the marathon route in New York. That is quite a lot to take in. Amidst the noise and pageantry of the arrival in Manhattan, I heard my name being called to my left and saw the first familiar faces of the day. My brother Colm and his girlfriend Rebecca waved excitedly from the crowd and I could easily recognize them due to the purple CF Ireland tracksuit tops that they were wearing. I smiled back and threw a peace sign in the air, running on and feeling ready to tackle the next section of this marathon.

Surveying the scene around halfway through the roughly three and a half mile stretch along First Avenue is quite something. The sheer scale of what I was taking part in became clear for the first time. In the starting village at Fort Wadsworth on Staten Island, runners are efficiently organized into four wave starts at different times and colored corrals in each sub-section.

While I was aware that the participant numbers had hit over 50,000, I did not fully appreciate what this meant until I stopped near 86th Street and took it all in. This was close to unbelievable. I knew that the majority of my family were on 111th Street at the eighteen mile mark, following advice we had been given by members of Team Boomer, a CF foundation in the city that my mam and I had visited two days previously. The foundation was the initiative of Boomer Esaison, a former NFL quarterback who responded to his son’s diagnosis with CF with admirable vigor.

The foundation emphasizes the importance of sporting activity as part of a pro-active CF regime and provides scholarship schemes to attend university, among other things. I had been impressed by what little I knew about them and had emailed to arrange a short meeting while we were in New York. The team was interested in Triona’s story and clearly affected by it.

I had noticed several Team Boomer athletes around me throughout the day in their distinctive blue and yellow t-shirts. A few weeks later, I learned that the people we had met in the foundation office had shared Triona’s story with their runners the night before the marathon during their logistics meet-up. It was a beautiful thought.

As I approached 111th street I saw a group of purple tracksuit tops and I gave a shout in their direction. The first person that I saw was my brother Eoin and our mutual instinct was to laugh at the absurdity of the whole spectacle. Feeling the need to acknowledge the dramatic sense of occasion, I slowed to kiss Maria who was marshaling my often laid-back family around the city with efficiency and purpose. I will never forget the look on my dad’s face as he leaned forward and encouraged me to “just keep going” as I rejoined the race.

Over the years, I would have experienced the full range of emotions with my dad. I would not always have been an easy son to manage. As the eldest, I could be quite stubborn and often felt a little hard done by. Add into the mix an immaturity undercut by a reckless abandon to seek out pleasure as well as a fairly often employed self-destruct button, and a general pattern of an, at times, unstable young person begins to emerge. My parents were quite consistent in the way that they dealt with me. They could be strict but always stressed that they loved me. There were times when my behavior might have been designed to test whether that was true.

To describe the previous year as emotional would be a major understatement. Losing Triona was an experience too cruel to contemplate while she was alive and however painful I predicted that it may feel to be without her, the reality was infinitely worse.

Although mam and dad had lost their only daughter, they had remained resolute in their roles as parents to their four adult boys. Now my dad was encouraging me to rejoin the masses and get to the finish line at Central Park to complete my tribute to Triona. The look on his face was a mixture of pride, love and loss.

I felt vindicated in my decision to enter this event and continued along First Avenue and on to The Bronx. Once my family members were out of sight, I slowed once more and took a few deep breaths. The sheer exhaustion I felt at this point came close to overwhelming. I still had eight miles of the course to go and while the will to finish was as strong as ever, I was unsure whether my legs would take me there.

I often needed projects, encouragements and medium term goals to focus my mind and maintain some form of personal discipline. I loved playing Gaelic football when I was a kid and I liked to study teams from the seventies and talk to my uncles about games that were played before I was born. My dad had brought Colm and me to Croke Park to watch Dublin play from a young age. We had spent many memorable days on Hill 16 watching the Dubs under perform on the biggest stage year after year.

Despite my love of the sport, I was never able to meet my own expectations as a young player. I was usually picked in the team but was often subbed off. By the time I had reached minor level, I lost interest and drifted away. I returned to play for the club as an adult at the much maligned junior level of regular competition. While the standard was hardly world class, I enjoyed the training aspect and the sheer excitement of a match situation.

An unfortunate ACL injury while playing at a slightly higher grade proved to be the death knell of my football career. Despite an attempted ‘epic’ comeback, I didn’t really feel enthusiastic about playing anymore so I moved on.

I started to go out jogging around the Phoenix Park after a brief hiatus as Maria and I had moved near the city after our wedding. I entered a half marathon event in Wicklow after a few months jogging in the park. I remember knowing that I wanted to recapture the elation that I felt the first time I crossed a finish line. Running became a means of maintaining exercise, de-stressing and working towards a goal.

I could handle the project management aspect of organizing your own training. Over the years, I had been awarded a first in my History masters, written a book and was just finalizing my PhD.

I used the frustration of my inability to excel on a football pitch to encourage me to achieve in a realm that I may have had an aptitude for. I did not have posters of historical researchers hanging on the walls of my childhood bedroom, but I was pleased to be able to apply myself to something that I was good at.

The decision to enroll in the New York City Marathon was partly a fail-safe to help me get on with my life during the early, lonely days after Triona’s funeral. I felt that if I had a target to aim for then I could get through it. There is no manual for handling grief and no ‘right’ way to do it. A loss of this magnitude can stop people in their tracks and alter people’s personalities to the detriment of their former values.

The Irish solution to the problem is often a combination of denial, withdrawal and a choice between alcohol or Catholicism. I understand that religion does have a part to play in helping people to cope and I would never insult other people’s beliefs. We had managed to get through these first seven months by keeping in contact, expressing our grief and maintaining concern for one another.

We were always a very ordinary family with one caveat; Triona was a star. While no one could have predicted the worldwide headlines or front page news of Triona’s story, it did not seem out of place for her to have made this impact. As her brother, I am wholly biased, but as a teacher who spends my working life interacting with young people and observing and monitoring their conduct, I try to achieve some perspective.

When Triona commenced secondary school she was aware of the competitive tensions and nastiness that can be a feature of the tumultuous teenage school experience. She was conscious that her CF marked her out as different and rather than attempt to hide or deny her condition she chose to meet it head on. Triona requested that she be allowed to address her new classmates and explain the nature of CF, how it affected her body and what her daily life involved. At the time of her funeral, I heard some of the young people remark how they had really admired her courage in doing this.

Triona owed nothing to Cystic Fibrosis. One school of thought could suggest that the strength, bravery, emotional intelligence and empathy that were cornerstones of her personality were as a result of living with CF. I do not believe this to be true. It is possible that aspects of her personality were exposed at a young age due to the difficulties that she faced and she was forced to mature quicker than most.

The strength and integrity of Triona’s character would have developed in any circumstance. Cystic fibrosis took Triona’s future from her and denied the rest of us the joy and benefit of her physical presence in our lives.

In attempting to cope with her loss, we decided to organize a memorial concert in a local theater and set about recruiting musicians to pay tribute to her. The tickets sold out and the night was a runaway success. Triona’s friends organized a fashion show and enlisted her teachers, principal, hospital consultant and the CEO of Temple Street Hospital as models. As they strutted their stuff along the catwalk, they set a tone of celebration and laughter in memory of her.

The main advantage of my family camping out at the eighteen mile mark was that they could easily make their way to the twenty-three mile mark by cutting through a few blocks on the Upper East Side and landing on Fifth Avenue. While they did so, I had been reduced to a pitiful sight often observed at this point of a marathon. A combination of running and walking was just about getting me through Harlem and Marcus Garvey Park, with a permanent look of pain etched across my face. Closing in on mile twenty-three, I made a feeble attempt to keep up some form of appearance for my family and gestured halfheartedly in their direction.

I had not allowed thoughts of the finish line to enter my mind just yet; having read race previews which advised runners to remember that there was still a lot of work to do once Central Park was in sight. At the entrance of the park on mile twenty-four, my brother Aidan encouraged me from the crowd. Aidan had been my training partner in preparation for this marathon and we had entered events together throughout the summer.

He was the first of my family to see me walking and I was too exhausted to hold up any pretense of feeling more motivated. I motioned with a cross-handed gesture that I could barely manage to go on before shrugging my shoulders and picking up the pace to a slow jog.

I looked at my watch for the first time in a while as I entered Central Park and noticed that I had gotten there within four and a half hours. Having crossed the halfway point in under two hours, I had decided to abandon any time target and merely focus on completing the race and remembering why I had signed-up in the first place. Runners who complete the marathon in less than five hours have their names printed in the New York Times the following day. I decided to at least reach that target and aim for four hours forty five, if only to focus my mind and provide some tangible goal.

The sense that I was nearing the finishing line was unavoidable due to the encouragement from spectators which reminded runners that they were almost there. Running through the park, a cry from a fellow participant over my shoulder summed up exactly how I felt and drew a ripple of laughter from the field, “mile twenty-five, where the fuck are you?!”

I had slackened my pace to a painful walk with just under a mile of the course to go. Colm unexpectedly caught my attention from the side of the course and quickly held out Triona’s over-sized peace sign necklace for me to carry to the finish line. A short video captured by his girlfriend Rebecca records me taking the necklace and breaking into a determined run. Unfortunately, I have to admit that I slowed again once more, just short of the finishing straight at mile twenty-six.

I was singled out for attention from one particularly enthusiastic spectator who shouted “are you kiddin’ me man? You got this! You got this!” Acknowledging the support, I swayed slightly before turning towards the last stretch and crossed the finishing line in four hours and forty two minutes; holding Triona’s necklace aloft in one hand and a two-fingered peace sign on the other.

There is a genuine outpouring of emotion and satisfaction at the finish line of a marathon. Friends and strangers embraced each other in mutual recognition of their achievement and I observed tears and laughter in equal measure. Runners ensured that a clear path was made for volunteers who carried one participant who badly needed medical attention. My overriding feelings were those of relief, exhaustion and extreme hunger. An impressive medal was placed around my neck and I waited for pictures with the official race photographers.

I hobbled through the crowds covered in the Mylar cape provided to keep in body heat and made my way towards our planned meeting point at a Starbucks on Broadway. As if I was on auto-pilot, I diverted briefly to eat a meatball sub before moving on to rejoin my family soon after. I was greeted with a massive bear-hug from Eoin and we all posed for photos and exchanged stories from the day over coffee.

The New York City Marathon is a unique event. Over 50,000 participants from around the world descend upon the city, each one with a story to tell and motivation to take part. There are moments of real camaraderie throughout the day. As I slowed on Fifth Avenue, a fellow struggler and I acknowledged the pain and fatigue that had set in before he held out his fist for recognition. Irish people can be pretty cynical about this kind of behavior but I responded as intended, fist-bumped and declared that we were nearly there.

In Harlem, a female runner tapped me on the shoulder and pointed to my t-shirt which advertised that I was running to fund-raise for Cystic Fibrosis and shouted “thank you for what you are doing” over the noise. Over €11,000 had flooded in for Cystic Fibrosis Ireland when friends, family and strangers had sponsored me following the media attention surrounding Triona’s story. I took advantage of the platform provided and spoke about Triona, cystic fibrosis and tried to intimate exactly what New York meant to her.

I understand that the media cycle moves quickly and reduces complex issues and everyday people into one-dimensional characters so that the public can digest the main details of the story. We were fortunate that the story was handled in good taste and we did try to exercise caution over which outlets that we spoke to. That said, I did feel a little uncomfortable in presenting myself as the pious, charity-minded eldest brother of tragic Triona Priestley. In short, I am not a ‘good’ person because my sister died and Triona was far more exceptional in life. I am just as capable of letting people down as the next weak-willed Irishman. I do believe that I am a better person for having loved Triona, however, and I will be eternally grateful to her for that.

The evening after the marathon, we hit the town in celebration and pub-crawled through New York after attending a Rangers game at Madison Square Garden. It was made quite clear to me that the marathon day had been an exhausting experience for everyone, if even in jest. We ended up in Greenwich Village and indulged in a stereotypical night of heavy Irish social drinking.

In high spirits and not wanting to end the night once the bars had closed, we landed back in the hotel and contemplated our next move. After a series of motions and proposals, we decided to descend upon Times Square with Colm’s guitar in tow to play an intimate musical tribute to Triona in a place that held a special place in her heart. An over-sized image of the iconic location hung on her bedroom wall and one of my favorite photos of her was taken there. It was taken in 2010 and she appeared to be entirely lost in the moment; on top of Eoins’s shoulders with her arms aloft and the bright lights of Broadway in the background.

We woke mam and dad from their sleep and told them about our plan. While we did meet with a little resistance, they soon dressed and assembled in the lobby. Assessing the scene with an instinctive concern, dad had brought his tin whistle but looked like he remained to be convinced. En route, I rather drunkenly asked “of all the stupid things your kids have ever done, where does this rank?” His curt reply was delivered without a hint of humor, stating “considering you are carrying an open beer can through the streets of New York; pretty fucking high.” He had a point. I dumped my beer in the trash can and moved on to our destination with Triona’s line about the sometimes worrying choices of her brothers dominating my thoughts.

We arrived in Times Square around five in the morning to find it relatively deserted. Settling at the foot of Father Duffy’s statue in the very center of the thoroughfare, Colm opened our impromptu concert with a song that he had written for Triona after visiting her during a particularly rough period in hospital. It is a melodic, acoustic tune which recounts a brother’s love for his sister in the context of the struggle with CF that they both shared. The chorus details:

From the day you were born, you know I adored you,

I remember you coming home,

And from the moment I got to hold you,

You’ve been the strongest one that I know

Triona liked the song and Colm had played it at her funeral and as the closing song of the memorial concert that we had organized. On both occasions, he had nailed it and received a standing ovation at the concert. This time, his voice was shaky, his guitar playing poor and we all choked back tears as we seemed to have the place to ourselves for a little while. The second song, "Live Forever" by Oasis, was far steadier while dad provided a unique take on the tin whistle.

Two sharply dressed passers-by paused for a moment, one remarking to the other that there was a story here that he was curious to hear. When the song was finished, they politely asked what had brought us to play music at Times Square at five in the morning. We spoke about Triona, the marathon, the #songfortri campaign and her love of New York. It was a brief enough exchange. They were from the rock band ‘Vintage Trouble’ and had played a show that night and were strolling through the city to wind down.

We suggested that the lead singer of the group Ty Tyler, should join Colm and dad for a striped-down, acoustic version of the Sinatra classic ‘New York, New York’ which they had also played at the memorial concert. The slow, finger-picking guitar playing and haunting tin whistle accompaniment had become the refrain to which I directed my mind to ignore the pain and fatigue that set in during training runs for the marathon.

Tyler has a stage presence similar to that of James Brown and his gravelly, soulful voice suited the slowed-down version perfectly. Becoming familiar with the tempo of the rendition and perhaps possessing the showman’s instinct for understanding his audience, Tyler began the second verse with his own interpretation of the famous lyrics, singing softly;

Triona in New York,

In the center of Times Square,

We miss your smile, your heart Triona,

In ‘oul New York

It was perfectly judged. While he returned to a more spirited tone for the familiar lyrics at the close of the song, he punctuated this with emotional mentions of Triona’s name at the exact right time. A video captured on mobile phone records both the silent reverence of his audience at this point and the loud cheer at the end. It was the most poignant moment that New York has ever given me.

Upon returning to our hotel, through a combination of inebriation and exhaustion, I lay on my bed and sobbed uncontrollably for around fifteen minutes. I paused only to assure Maria that I was OK and that she had need not worry. The full emotional impact of what had taken place moments earlier became clear. I had finally, truly let go of Triona in a near deserted Times Square.

The trauma of what had happened to Triona is not something that can be processed in one go. In many respects, I had taken some comfort in the story that had made headlines across the world. There was some sense to the story of a beautiful fifteen year old girl who had been sung to sleep by her idol with her family at her bedside. I had not fully accepted that the three year old child who dropped her toys and ran towards me when I appeared at the door after a summer spent in France was gone too.

I have so many beautiful memories of Triona. As the eldest of the family, I had the largest gap to bridge in terms of age. I feel so fortunate that Triona made such an effort to cultivate close, distinctive relationships with her brothers.

New York had always been a special place for our family. There are pictures of the city on the walls of our family home. Family photos that need not necessarily have been taken there are also framed around the house; mostly because everyone looks to be enjoying the moment in each other’s company.

We had always dreamed of taking a trip to the city and once we had the means to do so, it did not let us down. Our time spent in New York had always been defined by excitement and happiness and now we had an alternate set of associations with the city. Triona took so much pleasure in us all being together and was always concerned that her big brothers were happy and doing well; or “my boys” as she always called us.

It made sense to travel to New York to celebrate Triona. As I departed the city on a separate flight that was part of the marathon package, I exchanged a few text messages with Colm regarding logistics and departures. Recalling the incident at Times Square, with an ever-present fondness for the romantic, I wrote that for a few moments there, Triona was the biggest star on Broadway. Colm’s reply came soon afterwards, stating simply;

"somewhere in my imagination she lives here."

The early-morning drone of traffic and shop-fronts being slammed open cuts through the cold air in the neighborhoods of Manhattan’s Lower East Side. Inside a brownstone, fire-escape fronted apartment, Triona reaches out a weary hand, silences her alarm and rises slowly from her bed. She runs through her morning preparations with a sleepy precision. Perceiving a chill in the air, she selects a heavy scarf from her ‘guilty pleasure’ range of fashionable items hanging in her wardrobe.

Triona calls in to her regular stop to buy her morning coffee and exchanges familiar pleasantries with the barista. Despite living in a city of this scale, she likes to maintain a sense of community around her and makes a point of learning the names of everyone that she comes into daily contact with.

Triona moves through the bustling commuters towards her place of work. She has a career that fulfills her, hones her creative skills and is built on the core strengths of her personality: her ability to network, project-manage and empower people to help themselves. Crucially, she earns enough to maintain a good lifestyle and travel home when she desires.

Triona suffers a break-up. Her friends support her through it. Triona is happy. She laughs. She breathes. Over drinks, Triona likes to joke about how as a kid growing up in Dublin, she had always dreamed of spending Christmas in New York. Now she makes the same journey in the opposite direction every year.

When I dream of Triona, she is in New York.

In New York my sister is alive.

Thank You, Triona x

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This piece was originally published on Ciaran Priestley's website. To see more of his work, click here. 

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