Long-covid is a grind.
Since my 53-day hospital stay, I can realistically say that in many ways, I am a shell of my former self.
The fatigue is like nothing I ever imagined prior to getting sick. All my energy is gone by early afternoon. I need a nap every day.
My brain doesn’t work like it did. I can’t seem to learn new information. I have always been an overachiever, now I struggle to get the simplest of tasks done. I have nerve issues in my hands, feet and eyes.
My lungs are still a mess. I have severe lung scarring and it seems like my breathing has worsened in the summer, with Arizona temperatures so high and air quality so bad.
However, I am putting tremendous effort into doing my part to impact my health and wellness. We’re working closely with Kayla, a naturopath friend, on finding the right balance of vitamins and supplements. I continue to do yoga with my good friend Stacey, who used to be my assistant in Jackson Hole, she teaches me by Zoom from San Francisco. Yoga has been incredible for me, as I love the clarity, peace, and breathing development it provides while challenging me physically to do some things, I never would have thought possible. With my brain struggling to quickly process. Stacey works with me on revving up the neurons to think and process more quickly.
I’m also working on this at physical therapy. My PT team has been a godsend for me. They are so positive and creative in their approach. My mom had a stroke last fall, which resulted in AVM brain surgery. I felt so strongly about the good work this office does, I had her referred to there too, so we go to our appointments together, which is a lot of fun.
Dr. J, who runs the PT practice, is a former professional MMA fighter. He now trains both amateur and professional fighters. He incorporates boxing into my training. Working with him and his staff is a highlight of my week, as they challenge me in a lot of ways, including my brain’s recognition ability and work on improvement in my reflexes.
I’m at my best in the morning. First thing each day I go to the coffee shop, sit outside, and I do some writing. After a couple hours, I return home to go out on a long vigorous walk, with my music blaring and a couple grocery bags in hand as I pick up cans and bottles littered along the path of my walk. Every few weeks when I have enough collected, I take them to the local recycling center and donate the proceeds to charity.
Then I sit outside under my pergola (with my dogs being nearby 😊), I have the misters cooling me off and the music blaring I do some exercising, meditating, and yoga.
The release of my book, Shake Yourself Free, earlier in the year has been a tremendous blessing. It’s given me something to be extremely proud of, and a purpose to move forward with. To hear the enthusiastically positive feedback from so many that have read it, and to read a lot of 5-star reviews has been such an important experience for me. To have my painfully difficult journey now helping others, gives me a validation that I can’t quite clearly express yet into words.
What’s next? I am not sure. I’d like to soon get started on writing my next book. I don’t think my brain yet has the stamina for such a disciplined, hard-working task. I keep putting off getting the audio version of my book recorded–I’d really like to focus on getting the energy and brainpower to get that accomplished soon.
It’s been an adjustment not working. But I can’t imagine being able to work anywhere near the level that I always was able to perform at. What I miss most right now is the connection with people. I’ve always been a leader of people, and in more recent years have gathered so much positive energy from others. I miss that connection more than anything.
In a few weeks I am flying north for a book event in Jackson, Wyoming. I am really excited about this, as the people up there are truly my people. Jackson Hole is where the new me so positively began to take shape, over a decade ago, as the local grocer and volunteer radio host. It’s surreal to be heading back up there to see so many of the friends and connections I made to discuss and celebrate my book with them. The bookstore, Jackson Hole Book Trader, is in the same shopping center that for years I spent most of my waking hours in—running the local grocery store. As the long haul of this phase of life sets in, this upcoming trip couldn’t be coming at a better time.
I’ve worked hard at practicing positivity in the last several years. I believe that without this mindset shift, I would be spiraling downward into a funk and even depression. But I look at each day as a true blessing, as I came so close to not being here anymore. Daily I try to perfect the balance of staying active and energized, while also getting plenty of rest. I continue to eat right, limiting the carbs and sugar, while not snacking between meals. I still love an occasional beer, but I do keep my alcohol drinking to an absolute minimum.
I listen to more music than ever. All day every day. Concerts are my thing, and I’m blessed to continue to go to as many as possible, usually with my oldest son Dylan, and his girlfriend Ashley. I feel fortunate that they truly make me feel welcome and not as a tag-a-long. Currently, I am looking forward to Tuesday night, when we’ll see our favorite modern goth band, Cold Cave.
Our youngest son Taylor lives in San Diego, he came for an extended visit in August. This was so nice. After coming so close to dying, importance of family has brought on an even stronger meaning for me. What truly brings me joy has really been simplified.
I couldn’t have a better wife. Shelly never, ever allows me to feel sorry for myself, which is so important for me right now. I’ve learned such valuable lessons from her as she has exhibited so much grit and grace since her traumatic brain injury ten years ago. Our styles are very different, but we are both so similar in our values, work ethic, and focus on resiliency. We manage to find ways to have fun every day; that in itself is a blessing.
For anyone reading this that is suffering from the effects of long-covid, I encourage you to find a path that is comfortable for you. Try to stay active in your approach. Find your routine in the most positive manner possible, incorporating exercise and wellness into it. Doctors have continually told me that if I hadn’t finally put emphasis on my health a few years prior to getting sick, I most likely would not have survived. Most extremely sick diabetics that they saw did not have the strength or determination to combat the ferociousness of the virus. I focus on wellbeing with the thought that my foundation must be built as strong as possible, both physically and mentally, to overcome whatever comes next.
Another big piece of advice I have–don’t settle for bad doctors. Some are not willing to try to openly understand that there are deep, constantly evolving complexities to long-covid. Remember, they are here to serve you, not the other way around. I’ve been fortunate that most of my providers and specialists have been interested, intrigued and willing to explore and help in ways that are new to them—recognizing that no one truly has all the answers as this is so new to us all. If they are not treating you in a positive way such as this, replace them and work to build a medical team that is a benefit to you rather than being a negative.
As optimistic as I have become in these more recent years, I am also a realist. I have no idea if I will be able to shake this insane fatigue, if my lungs will improve or if my brain limitations will lift. But I will continue to positively control the things I can control. I’ve been through much in my life—enough for a 300-page book, lol—and I must say this medical battle ranks right up there as one of the tougher things I’ve gone through. But I continue to tell myself that I have managed to navigate my way through all these rough spots thus far—so I stay confident that I will navigate through this.
Ten Thousand Days 