“Music’s what’s helped me heal and helped me through so many dark aspects of my life,” Millsap said. “That’s what helped me get from one day to the next.”

Every Step Gets Him Closer to Coachella:

How Music Helped Bob Millsap Overcome COVID Pneumonia

By Christina Eichelkraut

Bob Millsap’s hospital room was always filled with the sound of music. Technically, that broke a few of the hospital’s rules, but by now the nurses were in on it. Often, it was The Smiths playing in Millsap’s room. He had loved the short-lived, 1980s alternative band since they were founded. His enjoyment of their music didn’t fade when the band broke up after a brief, five-year meteoric rise to stardom.

But now it was January of 2022. Millsap had been admitted to the hospital the previous month for COVID pneumonia. That was serious in and of itself, but it turned out that was just the beginning of a long and arduous 53-day hospital stay. But every single one of those days had music in it.

“Music’s what’s helped me heal and helped me through so many dark aspects of my life,” Millsap said. “That’s what helped me get from one day to the next.”

Millsap, struggling to breathe, addled by heavy medications, and fighting against Covid-induced pneumonia, clung to Morrisey’s voice with everything he had. The lead singer’s lyrics were sometimes wittily self-deprecating, other times cheekily questioning authority, but always soulful and poetic. Often, Millsap felt the lyrics were speaking directly to him.

“I was resonating with lyrics, I was resonating with the mood, I was resonating with the hope, with the darkness,” Millsap said. “And I could go through all of those emotions within 20 seconds.”

He posted updates about how he was doing and what was currently playing on social media. This inspired other people to send him music that was meaningful to them. His nurses soon became an IRL part of the impromptu musical community that began to form around Millsap, each member adding to the soundtrack to his recovery.

“It just became the centerpiece of my fight,” Millsap said.

At one point during his hospital stay, a note on his medical chart said Millsap had a “high probability of expiration overnight.”

Millsap drowned out the grim prognosis with the sound of alt-indie band, Modest Mouse. With a military-like discipline and focus, Millsap decided he would not allow negativity of any sort into the hospital room or his head and did everything in his power to ensure that. The perpetual music kept the demons at bay. Slowly, Millsap’s body began to recover as well. Millsap also focused on feeling gratitude for the nursing staff, who in turn became another source of hope and resilience for him.

Coachella: The Ultimate Carrot

One day, Millsap treacherously, painstakingly walked to the end of his hospital bed. Just those few feet took a Herculean effort, and he lay in his bed utterly exhausted for hours afterward.

But Millsap also had a realization that shook him: Coachella, the annual, three-day music and art festival, was coming up in April, just a few short months away.

“And then as I was laying there and realized, ‘Oh my god, I gotta make it to Coachella,’” Millsap said.

Millsap had attended Coachella 10 times. Ever since his son, Dylan, was 11-years-old, the pair had made a trip of it. It was an important year to attend for another reason, too. Dylan, a graphic designer and artist, was a headline artist for the second year at the festival’s Global Inheritance’s TRASHedCoachella art exhibit. The bright pink, festive trash bin Dylan painted was titled Desert Cabana had been inspired by all those years he’d spent at Coachella with his dad.

As difficult as the short trek to the end of his hospital bed was, Millsap knew one thing for certain: come that April, he would attend Coachella with his son, Dylan, and Dylan’s girlfriend Ashley.

Over the next several weeks, the fact that Millsap’s ravaged lungs, scarred from progressive interstitial lung disease, made every step a struggle didn’t matter. The hypoxia-induced brain fog that clouded Millsap’s days didn’t matter. Every single day, Millsap literally put one foot in front of the other, over time getting just a bit further each session. Every step Millsap took got him closer to Coachella. And that was that only thing that did matter.

“So that was the carrot that really enabled me to both make progress, and gave me something to shoot for,” Millsap said.

Initially, Millsap couldn’t walk from the end of his hospital bed to the bathroom or closet in the same room. But he worked hard with his occupational and physical therapists, never losing sight of the ultimate goal.

“I remember I eventually got to a point where they could take me outside,” Millsap said. “And I walked with my feet in the grass, and I had a Coachella shirt on because that was my motivation, my driving force.”

He said it was one of the most emotional parts of his initial recovery, bringing tears to his eyes.

From Caregiver to Survivor

Millsap has the dubious distinction of being both a brain injury survivor and a brain injury caregiver.

In early 2013, Millsap’s wife sustained a traumatic brain injury when, in a freak accident, an overly-fermented bottle of ginger ale exploded with the force of a bomb just as she walked past it. Initially, her injury appeared to be primarily physical with mostly facial injuries. A couple weeks after the accident, however, Shelly called Millsap and couldn’t speak or walk.

Despite dealing with the hurdles of receiving neurological care in a rural environment, Shelly worked hard to regain her speech and mobility. Millsap found himself in awe of his wife’s grit and determination as he watched her inch her way back to a functional new normal,

“She taught herself to walk and talk and really made amazing progress,” Millsap said.

Still, it was tough on Millsap, who had lost his fiancee in a car accident when he was 23-years-old. He had struggled mentally in the aftermath of that tragedy for years before meeting and marrying Shelly. Now Shelly’s accident relentlessly pressed on the deep trauma bruises his fiancee’s death had left on Millsap’s heart. Shelly’s accident frequently left him crying uncontrollably in the car on his way to and from work (where his boss refused to give him any time off or shorten his work load). He would rail at the universe, asking why him and how this could be happening again.

But when he walked through the door to greet Shelly, Millsap was always together. He marveled at the newfound patience Shelly seemed to have discovered as she painstakingly worked on her own recovery. The harrowing experience brought the entire family closer, too, as Millsap and Shelly largely had only their teen sons to rely on for support and help.

Eventually it became apparent that Shelly would need more medical support than was available in Wyoming, and the couple wanted to be closer to the support of friends and family. So they moved from the Grand Tetons back to Phoenix.

The couple became involved with the BIAAZ soon after. Both have spoken at the annual Rays of Hope conference and Shelly has created a mask for the Unmasking Brain Injury art initiative.

Millsap, understandably weary with enduring a series of serious trials throughout his life, found some solace in how his family grew closer after Shelly’s accident. He enjoys a loving relationship with both his sons. While he and Dylan share a love of music, Millsap and his other son, Taylor, enjoy sports together. His family’s renewed bonds and deeper love for each other is one of the gifts Millsap finds gratitude for in the midst of daily challenges. He says that gratitude helps him to maintain a positive perspective.

Coachella

Now it was Shelly’s turn to be a caregiver.

“A lot of the things that I helped Shelly with as her caregiver she’s helped me with since I’ve had a number of neurological problems due to the long Covid, the hypoxia, just how sick I truly got,” Millsap said.

This included her fiercely advocating for his need for music. At one point during his hospital stay, when Millsap was particularly disoriented and volatile due to his medication, a friend’s wife suggested taking away his phone. Shelly adamantly refused. She said if Millsap lost his music he would die. It’s not difficult to believe that Shelly may indeed have saved his life.

Once out of the hospital, the weeks ticked by and Coachella came closer. Millsap’s physical therapist agreed with his goal of building enough endurance to attend the festival and this became the primary focus of his sessions. Millsap created a course of walking around his block, timed himself, and every day got just a bit faster and a bit farther.

Teamwork Makes the Dreamwork

Although his recovery is extraordinary, Millsap’s physical capabilities are different, and that meant adapting how he attended Coachella. By leveraging every resource available to him – from the ADA platforms at the concert to Shelly’s support every evening back at the hotel – Millsap, Dylan and Ashley had a blast.

Walking wasn’t Millsap’s only hurdle, however. Both his hypoxia and long Covid symptoms have left him disabled and unable to continue working as a loan officer. His terminal lung scarring causes him to cough often and he is left frequently searching for a breath. Hyperventilation makes his heart flutter unexpectedly. It’s not unusual for Millsap to lose his voice several times a day, and brain fog has left him with a lack of short-term memory he is unaccustomed to. Extreme fatigue means naps are non-optional and must be taken on a daily basis.

None of that stopped Millsap from enjoying the show, but he did have to attend for a shorter period. Millsap didn’t stay for a 12-hour day as he had in years past, but he was still able to see the shows he wanted most. A highlight included Danny Elfman’s historic performance that featured a full string orchestra.

And of course, perhaps most importantly, he was able to see Dylan’s exhibit.

“So I was able to pace myself,” Millsap said. “I saw probably 20 percent of the acts I would normally see, but I saw a few acts I really wanted to see.” 

To get to the festival, he used his handicap placard to park more closely to the festival grounds, hopping on the shuttle to take him to the gates.

During shows, he would stand by the stage for a while but, when he got tired, sit on the ADA platform for a bit.

Dylan and Ashley took care of him during the concert and in the evenings, Shelly was waiting in the hotel room.

“But it was amazing,” Millsap said. “I can’t quite capture the feeling of accomplishment, that I’m alive, that I made it.”

Today, Millsap still makes it to concerts sometimes, though he admits he’s not always sure how.

“It must be the adrenaline because I’m just so passionate about it,” he said.

And of course, the music plays every day, helping Millsap to celebrate joys and guiding him through darker moments.

 “Music has a marvelous way of at times helping you to remember and at times helping you to forget,” he said.

Bob still works hard at being active and adventurous. Shelly and Bob on Seal Beach.

ABOUT BRAIN INJURY ASSOCIATION OF ARIZONA

The Brain Injury Association of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.