In Christmas season, my family’s togetherness is not guaranteed

Over the years, the holidays have held many different meanings for me. While I’ve felt an abundance of joy and tradition associated with these celebrations, my lifelong battle with pulmonary hypertension (PH) and other conditions has added some complicated layers to the equation.

Growing up, I had many years when the exertion of a fast-paced holiday schedule ended with me either exhausted or sick. Other years, I was left out altogether when a winter bug or other health issue kept me bed-bound before festivities even began.

I recall one specific year when complications with my thyroid left me in bed for the entirety of my winter break, then spit me back into the school year as if the holiday had simply skipped me by completely.

As I got older, the progression of my PH made the holidays both more difficult and more precious. I worked hard in these years to keep up with my friends and family, doing my best to make the most of the holiday cheer.

But I also had limits. I couldn’t spend much time being active outside in the cold. That made it challenging to participate in a lot of the seasonal traditions, such as ice skating with friends. In college, I found it taxing even to put energy into getting ready for holiday parties.

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From 2018 to 2019, I was in the hospital for most major holidays, recovering from my heart and lung transplant. These stays introduced me to new realities that we as a medical family hadn’t experienced before. It was a sobering experience, spending months as a family incapable of being home together for some of the year’s most cherished days.

Last year, I was close to a similar fate. An acute kidney injury, followed by a blood clot, kept me hospitalized for 11 days, with my discharge taking place on the 23rd of December. While this ailment was a closer call than I would’ve liked, it certainly heightened my appreciation for a Christmas spent at home.

Through it all, the holidays have been a time when I’ve found it easy to fall into comparisons. My health journey, combined with other challenges that life has brought to my family, has made for more than one bittersweet December, uncertain what the next year will hold for us. The harder years can often feel isolating even as the joy of the season marches on.

This year’s emotions

This year, I feel that all of these experiences are culminating, creating a rush of different emotions. Some recent medication changes have improved my health, bringing me out of a difficult two-year decline.

This gift feels tenuous and leaves my mind in a constant state of alert, waiting for the other shoe to drop. It’s also left me protective of my holiday experience, wanting a Christmas free of any health issues or hospital visits, something my family absolutely deserves.

In turn, I’ve been more cautious than ever in protecting myself from germs. My whole life, I’ve been more cautious in winter. But knowing that this current season brings an increased risk for COVID-19 and other illnesses, I’ve had to prioritize which gatherings feel safe and worthwhile more than ever before. This more cautious plan means avoiding group gatherings and opting for more intimate get-togethers in the days leading up to Christmas.

These decisions aren’t always easy to make. While I’m thankful to be feeling well this year, it’s a bit cruel that I don’t feel safe to fully enjoy that privilege with friends and family. But I also know that compromising my health could cause a huge regret, should the worst take place so close to Christmas. This tension never finds much resolution and will likely be a continuous negotiation of pros and cons for the rest of my chronic illness battle.

I feel fortunate to be home for the holidays this year (knock on wood!), especially as I witness, via social media, many families with complex medical conditions facing a different fate. But for me, and I would imagine most chronic illness warriors, the season comes with a lot of remembered trauma, undesirable sacrifice, and, sometimes, adjustment of the norm.

With all that said, being home with my family come Christmas morning is something I refuse to take for granted. It’s a precious gift, as there’s no guarantee we’ll always be able to celebrate this way.

Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.