Can joy and grief coexist? They certainly do during the holidays

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by Kevin Schaefer |

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The film “Everything Everywhere All at Once” features parallel universes, sprawling action sequences, and images involving hot dogs that viewers will never forget. It’s a highly cinematic, cross-genre epic. But at its core, it’s a movie about family and relationships.

The film’s two central characters are a mother and daughter, played by Michelle Yeoh and Stephanie Hsu, respectively. Though they’re at opposite ends of the emotional spectrum when the story begins, they find kinship and develop a deeper understanding of each other as their adventure ensues. Eventually, they allow their mixed emotions to coexist with one another. They learn that the baggage of the past can pave the way for a brighter future, and they come to love each other unconditionally.

Like these characters’ stories, the holiday season provokes mixed emotions in many. On the one hand, festivities and decorations are on every corner, and the familiar rhythms of holiday music play on radio stations and streaming services around the world. I have my annual list of Christmas movies to watch, ranging from “It’s a Wonderful Life” and “Love Actually” to “Batman Returns.” The atmosphere of nostalgia brings me comfort every year.

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On the other hand, the holidays are a time of overwhelming grief and loneliness for many. Families endure them with only the memories of a deceased loved one. Others struggle with illness, broken relationships, and endless financial burdens. In these instances, bright lights and upbeat carols aren’t enough to wash away the pain of loss.

This year alone, I lost seven friends with spinal muscular atrophy (SMA) and muscular dystrophy. I know others in my community who laid to rest their children, brothers, sisters, spouses, and friends. Grief accompanies all of us who are affected by SMA, and it’s especially prevalent this time of year.

As I’ve gotten older and encountered loss and other challenges, the holidays have become more complicated. Whereas they were once a time of unparalleled bliss and excitement, they’re no longer that simple. I now spend more days in December processing events and choosing solitude. I still go to movies and hang out with friends, but I also allow myself time to sit with my emotions and recognize that life is different now.

Reflecting on this year, I experienced an amalgamation of joy, grief, and everything in between. I traveled out of my state three times, went to SMA conferences and pop culture conventions, hired new caregivers, and organized a reading of a play I wrote. My work this year involved writing, management, community building, advocacy, multimedia content, and collaboration with others.

Yet in addition to losing people, I’ve also dealt with more SMA progression and periods of prolonged pain and fatigue. I now struggle to use my phone, as it takes a tremendous amount of energy just to move my finger across the screen. Reading physical books is also increasingly difficult, but I persist whenever possible. And while I’m not at war with my disability, there are days when managing life with it exacerbates my frustration levels.

Thankfully, I have many SMA friends whom I turn to when I need emotional support. We recognize each other’s needs, provide consultation, and use all manner of irreverent humor as a primary coping mechanism. No matter the circumstances of our lives, we find strength in one another.

I still enjoy the holidays, but I’m OK with recognizing the juxtaposition of joy and grief that defines this season. I’ll immerse myself in Christmas traditions and see one of my favorite bands for a New Year’s Eve concert. I’ll also relish the time to grieve and let my emotions spill out. It’s OK to do both.

See you all in 2024.

Note: SMA News Today 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 SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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