Happy Holidays!

A few months ago, I had a pretty major setback. It was sort of devastating. Looking back, I can clearly see where it went wrong. I pushed the envelope too far, much farther than my body/mind was capable of going at that point. Couple that with some unavoidable stress, whilst coming off a week of strong antibiotic treatment, and it formed the perfect storm. I lost a lot of progress in just a few days. It’s hard, I’m trying to juggle all these variables, and I don’t always make the right decisions. My symptoms can obscure my ability to discern where that boundary is or what I am capable of. Sometimes I will face circumstances of life that I’m not currently equipped to deal with. And other times I just flat-out lose control.

There is always the risk of overdoing it and experiencing setbacks like this. That is life; failure is inevitable. At times like these, it would be easy to let the fear swell and paralyze you. But we must remind ourselves that the only way to guarantee failure is to stop trying. So I will keep learning and adapting and trying to figure this thing out. Obviously, I am itching (and scratching… and clawing) to get back to “life”, but this isn’t going to happen overnight or without some setbacks. But it will happen, eventually (I think). In the meantime, I’ll do my best to keep plugging away and chugging along!

For a number of weeks following the setback (and even an occasional day now and then), I was confined to my bed for the entirety of the day. I was extremely weak. The only time I got up was when I needed to shuffle to the kitchen to gather some food and fill up my water bottles or if I had to use the bathroom.

So naturally, with all the time I spent in bed, I also had to resort to eating there. I have come to learn that eating in bed is a skill, a skill that I do not possess. I guess I wasn’t born with that particular gene. Whatever, I don’t particularly enjoy it anyways. Call me eccentric, but I prefer to eat on flat, horizontal surfaces. When I’m reduced to eating in bed, I end up dropping food all over the place. Which isn’t necessary a bad thing… There have been times when I’ve rolled over something in the middle of the night, like a piece of chicken or fish, and if I just so happen to be hungry, it ends up being a great mid-night snack!

In all seriousness, this major setback had me questioning everything and fanned the flames of my longstanding aversion to the idea of antibiotics. I took a step back (literally and figuratively), and reevaluated my approach and attitude. I stopped the treatment protocol I was on and stayed off of it for about two months. This gave me a great opportunity to take an objective look at the different forms of treatment available.

I researched heavily, consulted with people, and called around to a number of practices in the Chicagoland area (even setting up a couple appointments). During this two-month period, I was astonished that I saw literally zero progress despite my overwhelming confidence that I could get better without antibiotic intervention. I am not going to bore you with the details, but it eventually became clear that my current clinic (JSC) and doctor was far and beyond my best bet at this point. So I decided to jump back on their protocol without losing too much clinical ground. I am glad I did because I am already back to about the strength I was before the sudden setback.

For some time now, I’ve been accepting the fact that I don’t really know how long it is going to take to get “better”. This makes it almost impossible to plan for the future or make commitments. There is just so much uncertainty: How long will it be before I can support myself? When are the physical limitations going to fade? Will I ever be 100%? Should I start working toward a career that I can do from home? And those are only the big picture uncertainties. There is so much uncertainty in my day to day life, and it is super frustrating (especially for making plans). Maybe it’s just not time for me to know the answers to all those big picture questions, though I do think about them a lot.

I will say, I am lucky, in a way, to be going through an illness like this at such an advanced time in history. The progress we have seen in technology has aided me immensely throughout this process. Having the ability to use social media, whether it’s emails, apps, forums, or blogs, has literally kept me “socially sane”. Whereas many eons ago (in the early 90’s), none of that would have been available to me. I would not have been able to interact with people on the internet or share my strange, sometimes deranged, sense of humor with ya’ll through these posts!

Furthermore, the sheer amount of movies, tv shows, and music that is available to me, through Youtube, Netflix, Hulu, Amazon Music, etc, has allowed me to keep my mind distracted. This is key, because distraction has been by far my best weapon against anxiety and obsessive thoughts. And whenever my mind feels less clouded, I like to keep it engaged with documentaries, informational videos, podcasts, articles, and eventually, online courses. There is just so much I can do in the way of bettering myself, and all from the comfort of my own bed. What a time to be alive!

Writing has actually been one of the few skills that I can work on with virtually no physical energy. I often come up with and refine ideas in my head for a long time before writing them out. Since I’m stuck in bed so frequently, this particular platform allows me to practice my writing even more. As the old saying goes, “those who can, do. Those who can’t, blog.” Or something along those lines… In any case, I will continue to blog with the hope that writing will prove to be a useful skill somewhere down the road.

Admittedly, in the past I have held a cynical view of Christmas. I saw a holiday season that was manipulated to perpetuate consumerism and excess. I have witnessed unfounded expectations and forced showmanship taking the form of “presents” and celebrations. I realize now that it is so easy to dismiss something (or someone) by picking it apart and pointing out all of its flaws. But there are two sides to every story, and Christmas is no exception. Once you take a step back and accept that nothing is perfect, it is easier to choose to focus on the more positive attributes. In this case, I chose to embrace the optimistic, eggnog-is-half-full side of Christmas. This allowed me to look past my cynical objections and get into the “Christmas spirit”, characterized by hope and charity, gratitude and reflection. Although, I still don’t(and probably never will) enjoy Christmas music… but to each his own!

As always, thanks for the prayers and kind thoughts (and gestures)! Merry Belated-Christmas and Happy Holidays!

Why is Santa always so jolly around Christmas?

He knows where all the bad girls live…

“It is so easy to be callous; it takes courage and character to care.” Detachment (movie. 2011)

Iceland (photo by Katie Lanigan)


2 thoughts on “Happy Holidays!”

  1. Merry Christmas Billy! Love reading your blogs. You are a great writer. Thinking of you all the time and saying prayers for you. We are here for you with whatever you need. Love you!!!

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