'Courage and grief...'

When I began hosting 'Stories' on U2 X-Radio, writes Tassoula Kokkoris, I expected to hear about fan friendships and chance encounters with the band, but I hadn't anticipated how powerful the stories of my guests would be. 

From tales of courage to depths of grief, I've cheered, laughed, and cried with them as they've explained how U2's music and advocacy have affected their lives in transformational ways.

These are personal updates (edited for length and clarity) from a few fan-favourites from three years of 'Stories'.

Episode 'Live for Today' | Ned Timmerman

Ned Timmerman is father to young Jack, who has Batten Disease. A neurodegenerative disorder that affects the brain and nervous system, often resulting in loss of vision, the disease presently has no cure. 

As Jack's vision progressively worsened, Ned and his wife decided to take Jack to Sphere for his first U2 show while he still was able to experience visuals in some way. 

Because of Sphere's state-of-the-art technology, unique multi-sensory design, and high-definition clarity of 64,000 LED panels that make up the screen, for the first time since his vision began to deteriorate, Jack was able to fully recognize images. 

Ned posted a photo of Jack's powerful experience at the U2-UV show on a U2 fan page where he also shared a bit of his son's story. That led to a connection with U2 fan Eddie O'Byrne from Dublin whose daughter has Batten Disease. The Dads were eventually able to meet in person. 

Much has happened since then, according to Ned, who recently told me: 'Even though 'there is no way to sugar coat the fact that his eyesight is getting worse and worse…Jack's experiences at Sphere with U2 have been a muse for him. He came home obsessed with The Edge and his unique and hypnotic guitar sound. "I want to learn THAT", he said, so his grandmother has made weekly guitar lessons possible. 
'There has been advocacy for Jack and others with Batten Disease. On April 3, 2024, U.S. Senator Tim Scott recognized Jack by having the flag over the United States Capitol flown in his honour. On the same date in South Carolina, a joint resolution of the state Senate and House was passed making April 3rd Batten Awareness Day….

'There is our dear friend Eddie and his family, who we met through the U2 community. We continue to support and encourage each other from different continents. Obviously, we wish that we had never heard of Batten Disease. It isn't easy to watch other kids experience a "traditional" childhood. However, the connection of family, friends, music, and incredible experiences hold us together'.

'And most importantly, there has been living for today! As I said during the interview, each day is the healthiest version of Jack that we will get, so we will strive for experiences, memories, and continue to learn'.

Episode 'Spinning the Dial' | William Schaeffer

When I first interviewed William Schaeffer, his son Aaron, who was born shortly before the COVID pandemic, had become non-verbal and was diagnosed with autism.

Aaron's family were exploring different options for treatment and education when 'Songs of Surrender' was released and the album became a family favourite, providing great comfort.

Here's an update from William:

Since May 2023, Aaron has been enrolled in an autism clinic since that he attends 35 hours per week and where he receives one-on-one Applied Behavioral Analysis (ABA) therapy.

'Aaron first started by using pictures of items to communicate his needs. We would say what the picture was to connect the word with the picture. More than half the time, he now just tells us in a word or two what he wants. He is repeating words and filling in some lyrics to children's songs. Last week, he said his name for the first time in two years. Later that week, he spoke 45 functional words in one day—an emotional day for mom and dad, and a proud day for Aaron. He also said the names of his teachers (all six of them!)…

'Since Aaron enjoys music, our next adventure will be music therapy in conjunction with his enrollment at the autism clinic. His playlist, of course, includes U2'.

Episode 'A Seat At The Table' | Andrea Barone

A survivor of a school shooting who also suffered the tragic loss of a friend and went on to become the first openly gay referee in professional hockey, Andrea 'Dre' Barone inspired listeners with his quest to 'be useful' despite all that he has endured. 

With 'City of Blinding Lights' as his mantra, shortly after war broke out in early 2022, Dre made several trips to Ukraine, where he often worked along the Polish-Ukrainian border with people displaced by the war. He returned to Ukraine again in September of last year.

Here's an update from Dre: 

'This last time was slightly different. Rather than going directly to the border and helping people who were fleeing, I worked with a volunteer group from various European countries who knew groups of vulnerable people (elderly, sick, poor, and disabled) fleeing Ukraine to Warsaw, but with nowhere to go. 

'I picked them up at the welcome shelter in Warsaw and drove them in a nine-seat van to a state-run refugee centre that has been in operation for more than 30 years in Copenhagen. The Danish government would process them, issue papers to remain in the country, provide housing for them, and a support system to learn Danish—which was all setup within 2–3 weeks. On my way back to Warsaw, I would stop in Hamburg and pick up food and goods to be dropped off in Warsaw where it would be taken into Ukraine to its final destination'. 

Since returning safe and sound from Ukraine, Dre has been working on equality and inclusivity efforts within the hockey world. 'Not just for the LGBTQ community, but also for women trying to excel in a male-dominated sphere', he said. 

A Canadian native who began his professional hockey career in Canada's minor leagues, Dre recently returned to the ice himself, refereeing in the American Hockey League.

Episode "The Situationship" | 'Andrew Korpan'

Love is a show topic that always yields passionate responses from listeners, so I was not surprised by the fan community's response to Andrew Korpan's episode in which he describes how U2's music helped him heal from heartbreak. 

I'm pleased to report that since the episode aired, Andrew has found forever love with a former college flame. He told me: 

'My fiancée and I met in college, but after going out on just one date, we drifted apart. She graduated and I still had one year left. Then, in March 2023, we reconnected at a bar in Lancaster, Pennsylvania. called Tellus 360. Over the next year, we fell in love. 

'Fun fact: Among the first songs I played for her on guitar were "Who's Gonna Ride Your Wild Horses" and "All I Want Is You." She has since become a U2 fan herself and we've travelled together to Dublin to visit many of the band's landmarks.

'I proposed back at the bar in Lancaster nearly a year to the day after we'd reconnected….They closed off a room and had "All I Want Is You," the Songs of Surrender version, playing.… I proposed and we recently married!'

Episode "My Life's Breath" | Melissa St. Hilaire

Mental health is a frequent and important topic on 'Stories'. In her episode, Melissa St. Hilaire described having experienced crippling anxiety.

When she sought professional help, she had an allergic reaction to the medications she was given to manage with the anxiety, which only compounded the anxiety. Along with U2's music, Melissa said her 'Miracle Drug' was a change of lifestyle and stopping the use of prescription drugs that didn't align with her chemistry. 

Several months since her episode aired, I'm happy to report Melissa continues to thrive. Here's what she had to say about finding joy and success in recent days: 

'The key thing I learned on my journey was to stop hiding my true self and let my freak flag fly. Yes, there would be people who wouldn't like me or understand me, but there also would be authentic souls who liked me for who I am…

'For most of my life I was afraid to show the world my true self, so I hid behind a veil of anxiety, but now…I finally feel free. I still have the occasional panic attack, but I'm better equipped with dealing with it', she said. 'It's amazing what you can accomplish when you stop being afraid to be yourself and have the tools to navigate your anxiety, whether from within or without'.