Learning to still enjoy the holidays, despite being unable to eat
My frustrations are valid, but there's still much joy to be found
Dear reader, I did it. I made it through another Thanksgiving without being able to eat a single thing. This may not seem like an accomplishment to most, but as someone living with spinal muscular atrophy (SMA), it means everything to me.
The holidays took on a different meaning when I lost most of my ability to swallow three years ago. While I’m still fortunate to have the strength to drink liquids and not give up my gingerbread lattes, the struggle of missing out on so many treats I enjoyed at this time of year still lingers. I long for something I never realized was central to the joy of this season until it was gone.
It seems as though nostalgia always hits the hardest when I smell the delicious aromas on Thanksgiving, watch my mother bake her famous cookie trays for Christmas Eve, or politely decline food while attending the occasional holiday gathering. In the midst of all that’s merry and bright, sometimes this truth can feel especially heavy.
The holidays amplify loss
Having lived with SMA for 35 years now, swallowing hasn’t been the only ability I’ve lost. In fact, disease progression is the name of the game for SMA, and it’s something I’ve grown accustomed to and expect throughout my lifetime. However, among all the abilities I’ve lost, not eating and, as a result, getting a feeding tube have had the most profound impact on my life.
In some ways, my feeding tube has been my saving grace. Though I can no longer eat independently, I am nutritionally healthy for the first time in my life. I’ve gained a substantial amount of weight, and I no longer have to worry about the consequences of malnourishment. Getting my tube a few years ago literally saved my life. At the same time, though, it’s a reminder of what I’ve lost. With every whoosh and whirl of my feeding pump, I’m reminded that food is simply a memory for me now.
The holidays tend to magnify these vulnerable feelings in a way that the rest of the year doesn’t. After all, I go to restaurants, watch other people eat, and manage just fine. Of course, I have my moments, and rightly so. Who wouldn’t miss food? But society’s message of eating, drinking, and being merry during this season seems forced onto me. There are times when I feel that no amount of holiday cheer can negate the frustration that comes with it.
Despite this, I’ve learned to sit with the season’s juxtaposition, where joy can coexist with heaviness. Excitement can mix with longing. I can still love the holidays and channel my inner Christmas-loving spirit while acknowledging that some parts of the season feel more tender.
Within that same juxtaposition is also a gift of perseverance, resilience, and the ability to see the smallest of wins — even if it’s simply making it through a holiday centered around food. I know my frustrations and melancholy are valid, but I also know there is still so much magic and wonder to be found. I see it in the way all the lights sparkle on our Christmas trees. (My family has four!) I see it in the connection this season cultivates, in the magical chaos of my niece and nephews opening their Christmas presents like it’s a race, and in the joy that the message of this season brings. SMA may shape how I experience the holidays, but it cannot steal these parts I hold most dearly.
And to me, that’s sweeter than any cookie could ever taste.
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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