And with the advent of spring comes a Halloween party

One of the lessons idiopathic pulmonary fibrosis (IPF) has taught me is that not everything will go as planned. For that reason, this past weekend we celebrated Halloween and One-Half (which we call HH). Flexibility is important to everyone on this journey. Let me explain.

Before my IPF diagnosis, my wife, Susan, and I used to throw a big Halloween party each year. It wasn’t unusual to have 50 people in the house, an outdoor screen showing timeless Halloween horror movies, and a different costume theme each year. COVID-19 changed all of that. We canceled the event in 2020 and didn’t bring it back until 2022. That event wasn’t held in our home, though; instead, we rented a large hall nearby. Still, the spirit of Halloween lived on.

In 2024, a week before the party, we learned our venue wouldn’t be ready because of a kitchen renovation that was underway.

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We’d changed to the venue because having a large number of people in our home wasn’t comfortable, given that I’d received a bilateral lung transplant in July 2021. By the time we were planning Halloween 2022, my transplant had suppressed my immune system. The external venue became a requirement. When the renovation last year forced us to cancel the party, Susan developed the idea of a HH party.

In hindsight, so many plans have changed along the course of our journey. The lesson we learned early on — that not everything will go as planned — stays with us even today. Take those changes in stride and go with them.

Well, that didn’t go as planned

The venue is just one example of changing plans, and we had to adjust. Changing the date of a Halloween party to the top of spring is of no real consequence. But some of the more significant events along our journey have been more traumatic.

Within weeks of each other, my mother and stepsister passed away in the fall of 2020. I wasn’t able to attend their funerals because of COVID-19. In November 2021, my stepfather, Harold, passed away — almost a year to the day after my mother’s passing. When Harold died, I was only several months post-transplant, so I wasn’t able to attend his funeral, either. I did deliver the eulogies for my mother and for Harold via links into the livestream of their funerals.

Admittedly, these examples — Halloween parties and family deaths — are at opposite ends of the emotional spectrum. Yet the times we’ve had to make adjustments on this journey came flooding back to me as I was preparing for this recent HH gathering.

I don’t suppose I think much about having to change plans any more. It’s become a rather normal part of this journey. Unlike missing funerals, changes to most other plans aren’t a big deal — aside from medical appointments and similar priorities; we change plans for those.

I’ve yet to meet anyone who thought they’d be controlled by a rare disease. Confronted with the reality of living with IPF or a similar disease, we likely won’t experience the life we’d imagined. I think that’s why my approach, to be positive in all things, has helped me navigate changes in plans.

I am not perfect. I do get frustrated at times, but I do my best not to wallow in disappointment. I haven’t found it productive or the best use of my energy, and conserving energy has often been important on my IPF journey.

A part of preparing for the spring HH is the food. Cooking is something I enjoy. Slow smoking 15 pounds of Boston butt and making 5 pounds of sloppy Joes reminded me that we look forward to HH each year. Having to change the date was inconvenient, but that’s all it was. The event is always a good time with friends and is another way I can make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.