This Holiday Season, Spread Kindness, Not COVID-19

This Holiday Season, Spread Kindness, Not COVID-19
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My upcoming holidays are going virtual.

Right now, families like mine across the world are making hard calls about how they will spend quality time with their loved ones this season. In the United States, Thanksgiving is unfolding amid the biggest and deadliest COVID-19 spike to date. Certainly, this holiday season will look different for everyone, even more so for healthcare workers and families who have suffered unspeakable loss in the last several months.

For my fiancé, Michael, and I, making the decision to isolate at home for the holidays wasn’t nearly as hard as the decision to postpone our spring 2020 wedding due to the pandemic. By comparison, rethinking our holiday season was a piece of cake … or, in this case, pie!

In all seriousness, this virus is raging in the United States, and I cannot in good conscience do anything that might contribute to the virus’ spread or bring harm to others. My family’s decision to make festivities virtual is less about my acute hepatic porphyria and increased susceptibility to developing complications from an infection. It’s more about being loving, compassionate humans.

This year, I’m celebrating the season in some deliberate ways that don’t hinge on any family tradition. As much as I prefer to see people in real life, I’m leaning into the virtual nature of our festivities. At the same time, I’m challenging my family to consider ways we can spread kindness to our friends and neighbors who are sick, grieving, lonely, or struggling to make ends meet.

Finding joy in video chats

Setting clear expectations for Thanksgiving and other winter holidays is critical for managing my stress levels. As a people-pleaser with a misunderstood, invisible illness, the holidays can be one big minefield for me if I’m not emotionally prepared. Especially this year, as pandemic-related anxieties soar and political division is thrown on top.

Did I feel like a party pooper when I first told my beloved, 96-year-old grandma that I wasn’t coming to visit in person this year? Of course. But I’m refusing to see Zoom as a limitation or a necessary evil. The good news about video chats is that boundaries may be a tad easier to set.

For instance, I am clearly communicating my needs to my family beforehand. In this way, video chats are an opportunity to better protect my energy levels because I can stay in my comfort zone at home. I have more control over the time of our call and the conversation’s length. Not to mention I can drop off if I need to and spend the day in my pajamas!

In continuing to count my blessings, I recognize the privilege I have to stay home and see my people virtually. Plus, I am incredibly lucky to share a home with three awesome guys at my side who are all willing to experience the holidays differently.

Spreading community-based kindness

This holiday season, staying home will be easy enough for my family. My heart yearns to do more for those in my community who are struggling — some of whom have been unemployed for six months or more. There’s so much we can do to help right now without leaving home.

I am learning about the people most affected by this pandemic — namely communities of color, who are disproportionately more likely to be financially impacted. I am learning about the people who make up my community and their biggest needs, including rent assistance, food, employment, and barriers to education, such as internet access, technology, and language.

I am learning about community-based organizations that have missions to enhance and improve the quality of life for Des Moines residents. My family will give what we can, perhaps in clothing, warm winter gear, food, or books. We will share information with our friends on social media so that others can choose to make their own impact.

I don’t know how Thanksgiving and winter holidays will affect the spread of the virus in our country, but I do know one thing: I will not look back on my actions from the end of 2020 and feel disappointment or shame. I will rethink the holidays with my family and create joy while staying at home.

When I remember the 2020 holiday season, I will remember that time we spread kindness, not COVID-19.

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Note: Porphyria 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 Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.

Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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