Finding Focus Through the Setbacks

It’s been nearly a year since I was diagnosed with Interstitial Lung Disease (ILD). Since then, I have learned a lot.
ILD is a broad term for a group of disorders that have progressive scarring of the lungs. There is no cure for ILD. When I was first diagnosed, much of what I read talked of a 3-to-5-year life expectancy. Fear is something that I have long since let go of, as I deeply understand our time on this earth is not guaranteed.
But the diagnosis did give me the desire for second opinions and deeper answers. It also encouraged me to get things in order, so things would be easier for Shelly if I were indeed gone in 3 to 5 years.
With Shelly’s brain injury twelve years ago, we experienced what it’s like having an invisible injury or illness. When you have a condition that can’t be easily seen, it’s hard for people to comprehend that you aren’t well, especially when choosing to continue living life optimistically and to the fullest. While I do appreciate being often told that I look good, the reality is that I am only a fraction of what I was before getting so sick, and nearly dying from COVID-19.
My lungs are heavy and labored. Breathing isn’t easy, and I cough a lot.
My brain can’t process like it could before. I am easily confused, lack focus, and have issues with my short-term memory.
I have intense fatigue, which builds as the day goes on—I need a nap most afternoons.
My joints hurt, with my hands and feet often going numb.
Last fall, I went for a second opinion at St Joseph’s, a highly respected medical center in central Phoenix.
I was run through a multitude of tests and imaging, which confirmed that I do have ILD. Breathing tests showed my lung capacity to be at 66%.
From there, the pulmonologist referred me to other specialists to dig deeper into my issues.
The rheumatologist found that I have a rare autoimmune disease called Anca-Vasculitis (AAV), which is inflammation of the blood vessels. It’s a disease that affects multiple organs, and without treatment, it is often fatal within months.
I give myself a shot once a week of an immunosuppressing drug that helps keep the disease under control. While the disease can affect the whole body, it is showing the most prevalence in my lungs, nose, ears, brain, heart, and eyes. The kidneys are often affected by AAV, but fortunately, my kidneys have yet to show the effects. My recent CT scan shows severe predominant artery calcification, which is common with AAV. With this being brand new information, I will be consulting with my cardiologist on how to attack this sign of heart disease.
The extreme fatigue I feel also can be attributed to AAV, as it is a common effect of the disease.
Like ILD, there is no cure for AAV.
I will live with both diseases for the rest of my life. I work hard to slow their progression, stay positive, and not let this reality bring me down.
I find that when I am sticking firmly to my morning routine of writing and then focusing on treatments such as walking, yoga, cold plunge therapy, and time in the sauna, my positivity flourishes. Doing these things makes me feel like I can do hard things and am doing my part to battle the progression. When these morning routines get disrupted, I seem to flounder.
These last several months have been challenging. I am grateful to be getting a more detailed understanding of the depths of my issues. Even the bad news gives me clarity on what I am battling, which enables me to forge a plan. But I’ll be honest, the depth of these issues is a heavy burden to deal with for both Shelly and me.

It’s been an emotional time on many different levels.
In December, I was asked to give a eulogy in my hometown of Bakersfield for my deceased fiancé’s mother. I made the eight-hour drive and was proud and relieved at how that went.
Dana died in 1990, and most of the people in attendance I hadn’t seen since her funeral over 34 years ago. Dana’s family made me feel extremely welcome, which brought me comfort. I don’t think my five-minute talk could have been done any better, I was pleased with how I could convey what I wanted to say, which honored both Dana, and her mom.
I had genuine conversations with many, including a heartfelt conversation with the clergyman who presided over both Dana’s, and her mom’s funeral. I was snubbed by Dana’s best friend (who was the speaker directly after me). Thirty-one years ago, she wasn’t happy with how I moved my life forward with Shelly, somebody that she knew. Seeing her, after all these years, still hold such a grudge—gave me a strange sense of closure. I pray that she’s able to one day find peace.
On February 22nd, which was my parents’ 61st wedding anniversary, my dad passed away at 88. I am grateful and blessed that he lived such a good, long life, but it sure is hard losing him. We were extremely close; I am an only child and worked alongside him in our family grocery business for many years. In these most recent years, with my medical retirement, I could spend so much quality time with him and my mom. They did not drive in recent years, so I brought them their groceries, got them to their appointments, and saw them nearly every day. I will always be extremely thankful for the blessing of such quality time together.
His funeral was an incredible celebration of his life. As an Army veteran, we had a short military ceremony at the National Cemetery of Arizona, presided over by a Deacon from our church, St Thomas More.
I gave the eulogy, speaking for nearly fifteen minutes.
I prayed that I would be able to keep my emotions in check enough to say all that I wanted to say. For the most part, I was able to do that. I could express what a legendary grocer, businessman, and family man he was.
I told stories that brought both laughs and tears, focusing on both his brilliance and sense of humor.
I came closest to losing my composure was told how my parents sacrificed it all when I needed it most.
I explained that fresh out of college, I was managing one of our stores.
My fiancé, Dana, was killed in a car accident three weeks before her college graduation. I was shattered, and my life was stalled.
One day, Dad excitedly came up with the idea of selling our stores in California and starting fresh somewhere new. He knew exactly what I needed and had no fear in making sure that it successfully happened.
Traveling through the South and Midwest, looking at stores, we finally settled on buying three Piggly Wiggly Supermarkets in western Kentucky.
Dad was right—drastic change is exactly what I needed. Six months after our move, my dear friend Shelly came to visit. During that visit, our relationship changed. On Wednesday (May 14th), we celebrate our 31st anniversary. I am so grateful for the incredible life that we have been able to build together, with two amazing sons, Dylan and Taylor.
I miss my dad a lot, but I am choosing to focus on all the blessings of the good, long life he had.
I feel fortunate that I can spend so much time with my mom. We are taking great care in making sure that she is doing well. Last month we took her to Las Vegas for a few days. It was great to get her out of town for the first time in a while. We even visited St. Ann’s, the catholic church where Mom & Dad were married.
It’s all been a lot. It has challenged me to the core.
I write and talk often about overcoming adversity. These last several months have pushed me to do all that I can to pull from many of the positive lessons I have learned from my previous struggles.
We just got back from a trip to Hawaii. It couldn’t have come at a better time. Spending such quality time in paradise with Shelly was exactly what I needed. As a young man, I took trips like this for granted, but after years of vacations not being in the budget, I now center my attention on thanking God for the blessings.
Nothing is ever guaranteed, and none of us has any idea how long we will be on this earth. My focus is to spend my time with those I love, while listening to lots of music, and living life to its absolute fullest.