BRAIN WAVES

Brain Injury Alliance of Arizona Blog

Lessons Learned From the Edge of Life: Part 2

This is the second in a three-part series about Bob Millsap’s personal experience surviving COVID-19, beating the odds, and his ongoing road to recovery.

Tune in next week for the wrap up in Part 3


Music has always been a tremendous part of my being; I gather such clarity and hope from it. On my first night at the hospital, I listened to a podcast. Halfway through it, I realized that I didn’t need that kind of noise from the outside. I turned it off and turned on music from The Smith’s. I listened to their entire catalog of songs over the next several hours. I was calm, confident and focused. I realized to get to the other side of this, I needed music by my side twenty-four hours a day.

I started calling my hospital room the “Happy House” after the upbeat song by goth legends Siouxsie and The Banshees. I played that song often and loudly, drawing much inspiration and positivity from this and so many other songs.

That same day I reached out on social media with a short, positive, but serious account of what I was going through. From that moment forward I began openly sharing the roller coaster of my journey. 

The following night my football team, the Arizona Cardinals, were on Monday Night Football. They had the momentum throughout the season to make a run deep into the playoffs. I was excited to see them on the television. I told my nurse that I would only turn off the music and turn on the TV when the Cardinals were playing. The game was awful, as the Cardinals were embarrassed by the Rams. I turned the TV off, cleared my mind of the negativity of the game, and I vowed never to turn the TV on again while hospitalized. It truly would be music 24/7.

This focus on positivity and music began serving me well. I was inspiring the medical staff and they were inspiring me. My positive focus centered on kindness and appreciation towards the medical team. This positive energy began feeding off itself; creating a momentum of hope that’s hard to describe.

I was an extremely sick man. But I focused my energy on the small improvements daily. Ever so slightly, these improvements became a challenge within myself. The staff was highly encouraged to be able to gently lower my high flow oxygen level sooner than expected.

Our youngest son Taylor and his girlfriend Michelle took time off of work to come home to help take care of my wife Shelly. Taylor had moved to California the previous year. The timing of their help was vital for Shelly. I am so grateful they were able to get here when they did.

Taylor dropped off a container of dates and energy bars to the front desk. I was five days in and so far, the most substantial food I had eaten was Sugar Free Jell-O. It was good to be able to eat something familiar, healthy, and of substance. After being hospitalized for a full week, I was able to order solid food from the hospital kitchen. Chicken nuggets and chicken noodle soup sounded good, and it was great to muster the endurance to eat a nearly normal meal. It took nearly an hour to finish eating, as it took so much more strength than what I then had. But most importantly, it was a positive milestone to draw much gratitude from. The two chefs were so kind to me. My interactions where I fought hard to speak through the hospital phone with Sherri and Daniel in the kitchen became a highlight of each day.

That same day I ate my first meal, Taylor and Michelle brought some more healthy snacks. Taylor called me on my cell phone and said that he wanted to find my window. I was not much help, as I had no perception of where my room was. At that point, I didn’t even realize my room was on the first and only floor of the tiny eight bed hospital. Within a few minutes they found my window.

The sight of the two of them smiling made my day and brought me to tears.

From there, the window visits began. Friends and family found my window on what became a daily basis. It brought us all hope and a smile, as I posted each photo to social media.

My Jackson Hole, Wyoming friends took the window visit a step further as they went to St. John’s Hospital in Jackson and had a picture taken of them bundled up on the outside through a hospital window. I was crying multiple times daily, but the sight of this brought me deeper tears than any time yet.

I was continually blown away by the kindness towards me that I was seeing near and far. People I least expected to grow close to were closely bonding with me, from Jack, my local accident attorney, to Craig, a friend with whom I’d had limited contact with since the 1980’s.

Often there’s not an understanding of how much of an impact we’ve made on people until we are gone from this world. But I was blessed to see that countless people from all times and aspects of my life cared. This was a huge moment of clarity and inspiration for me.

In those early days I began having vividly real conversations with deceased family and those close to me who had died, as well as a conversation with God. The talks were specific and incredibly deep. Where’d this come from? Delusions? Hallucinations? Or near death experience? Whatever it was, these conversations helped me a lot. I gained clarity and perspective that added to my already deeper understanding of life. It was an incredible tool to be equipped with in my fight for life and it will be an incredible tool I will find energy and wisdom from for the rest of my life. I am still processing and understanding much of this, but I truly look forward to diving deeper into this in the next book that I write.

The music I listened to became even louder and more diverse. What began as a focused dive into my musical roots was now expanding into bands I had been curious about but never had gotten much into. Sonic Youth was a band that I dove into on my eighth day. By time the day was over, I was convinced Sonic Youth would be a band on heavy rotation for the rest of my life; and so far it has been.

Each day I’d write and post about my song of the day. It would be a song that was relatable to my current circumstance. It gave me a needed purpose at a time where I needed my mind occupied. I channeled my radio persona from my radio show that I did for five years with my oldest son Dylan called, The Hole Enchilada on KHOL 89.1 FM, Jackson Hole Community Radio.

This got me through extremely difficult days. I focused on the music rather than the fact that there was sizable worry that I might not make it to the next day. My music friends throughout the world came up huge by sending me song playlists that often times were closely aligned with my tastes. But I also appreciated the playlists and suggestions from many that were far from my musical wheelhouse. Because of this, my musical tastes expanded greatly at a time I needed intriguing things to think about. Dylan, my son who also shares my passion for music, and his girlfriend Ashley stayed extremely close by sending me so much music and having conversations with mostly music as the subject throughout all hours of the day.

While in the hospital, any progress made was recognized. I kept everyone upbeat with fun and humor. This focus went so far in getting me through each day. My overnight nurse, Janet, was an absolute saint. We celebrated the smallest steps; an example being one night on my own, I got up and took two steps to the bedside commode. Another night, with walking help from Janet, I was able to take a few steps to the sink and brush my teeth on my own. I focused on the positive of what was accomplished, rather than the reality of how basic, elementary, and what a struggle each new task was.

The hospital was such a safe and controlled environment. I was being monitored around the clock. I rarely slept, but when I did, if I rolled over and my oxygen came off, within seconds Janet would be in my room to safely get it back in place. If my oxygen level suddenly plummeted at any hour of the day, a nurse would immediately be there to investigate why.

With my medical team’s tireless effort and my positive determination, I was improving slightly each day, though I was often reminded that things could quickly and dangerously plummet south. Dr Kelli would often say, “We are not out of the woods yet.”

Not only was I on a lot of oxygen, but I was also on a lot of medication. For one stretch in particular, around Christmas, I was on Prednisone. This was to aggressively clear infection in my lungs, but a side effect put me closer towards temporary insanity. I said and posted things at times that didn’t make much sense, although in my racing mind, it made perfect sense. I knew that I was wearing out many people, but I frankly didn’t care, as it was also a survival tactic for me as I was staying occupied rather than going down the rabbit hole of fear, isolation, negativity, and depression. I lost some people with my trip towards insanity during this time, but countless people stayed right there with me and helped pull me through. They say this is not only a virus of the lungs, but also a virus of the brain. These are subjects I look forward to digging deeper into in my next book.

I was surprised on my 16th day of hospitalization when a doctor came into my room and said, “We need to talk about discharging you soon.” Sure, I had improved and was now on ten liters of oxygen per minute, but who were we kidding? I had a long ways to go.

“Where will I go?” I asked.

“Possibly home,” the doctor said.

This alarmed me, as Shelly was still healing from her fight with the virus, and since I was her caregiver, there was no way she could be mine. I explained this to the doctor and asked her to please read the article about Shelly’s brain injury.

Later in the day, she stopped by, told me she read the article, and totally agreed. They’d work on getting me into a rehabilitation facility within a reasonable drive from home, as Shelly could not drive very far due to her brain injury. Being in the positive frame of mind I was in, I took this in stride with a feeling of achievement and excitement. Talking to both Dr. Kelli and Nurse Janet, they assured me that I’d be fine and under good, closely monitored care.

Nineteen days into my stay, on December 22, 2021, I was discharged to the care of what is classified as a post-acute rehabilitation facility, which was fewer than eight miles from our house. Although I was still fighting hard with every single breath, I had no concern with what was next, as I knew I’d turn it into a positive. I was released with cheers and excitement from the hospital staff that I had bonded so well with. I videoed it all and triumphantly posted to social media. But with excitement for change, I had no idea what kind of evening I was in for.

Bob Millsap is a writer, caregiver, and survivor of Long COVID. He and his wife Shelly live in Surprise, AZ and are the proud parents of two sons.

You can read more about his and his family’s journey on his blog,
Ten Thousand Days.

ABOUT BRAIN INJURY ALLIANCE OF ARIZONA

The Brain Injury Alliance 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.

The Brain Injury Alliance of Arizona:

  • Works with Congressional Brain Injury Task Force
  • Houses Arizona Brain Health Resource Center
  • Hosts Statewide Opioid Use Disorder & Cognitive Impairment Workgroup
  • Has Statewide Opioid Use Disorder & Cognitive Impairment Response team with peer support, training, and family wraparound services
  • Facilitates Brain Health Advisory Council
  • Manages statewide Neuro Info-Line: 888-500-9165

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