Alan Hieber

‘Tis the season again, and for the most part, it’s usually been jolly for me. But like the leg lamp notorious in A Christmas Story, I have to stay alert. Living with Duchenne muscular dystrophy (DMD) influences many aspects of Christmas with the family. I’m chronicling several holiday tales of when this disease contributed to nearly derailing my spirit, as well as a few tips I’ve acquired to avoid such situations.

Nothing gets me in the mood for this time of year more than the food. Just the aroma of pies and turkey baking in the oven is enough to make me eager. But I do have to be mindful of certain things. With the respiratory issues I have, there are particular dishes that can cause a buildup of mucous that I need to clear later using one of my breathing devices. Spicy food seems to be a trigger for this.

A few years ago, I decided to try fruitcake for the first time. Unbeknownst to me, spices are a common ingredient in this traditional cuisine. Shortly after ingesting it, I had to expel quite a bit of mucous. It’s probably obvious that this is now crossed off my list of seasonal foods.

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The large nature of these feasts is another possible hazard for me. With a plentiful helping of food on my plate, there are extra chances for something to go down the pipe wrong. This makes small bites and sips of a drink essential. As long as I do that, the meals should be smooth sailing.

Fatigue is another component of the holidays I have to keep an eye on. Lengthy conversations with relatives and eating both drain my energy level. Taking a nap sometime in the middle of all this gets me recharged, though.

Decorating the Christmas tree was once a joyful tradition of mine. These days I’m physically unable to hang ornaments on the branches. The same can be said about ripping open a wrapped present. While it is bittersweet to lose these traditions, I feel my mindset is key to coping with the loss. As is the case with other physical abilities I’ve lost, I value what I still can do. The aforementioned food is one example. I’m also thankful to be able to spend these moments with family, especially when we are watching a holiday special on TV together.

Recent holidays had a damper on it with the specter of COVID. The isolation it brought was most notable, but being the resourceful person I am, I looked to overcome this. I hadn’t seen 2 of my closest friends much in 2020 and really wanted to find a way to do so over Christmas. Through the wonders of video chat, we were able to meet face-to-face. What made it special is that we also streamed a movie at the same time—The Nightmare Before Christmas. This meant a lot for me in what was a year to mostly forget. And I can now feel safer doing such things in person.

Past holiday seasons have called for visiting extended family members. I live near many of them, so travel isn’t as big a deal as it can be for me. I’ve still been able to enjoy these experiences, but accessibility to some of their homes hasn’t been the easiest. This typically happened when the entrance had stairs. Luckily my engineer-minded father made a makeshift ramp to get my wheelchair up small steps. In the case of steeper steps, we have a larger metal ramp that did the job. A lot of the celebrations are at our stepless home, meaning this isn’t a hassle every year.

That about sums up what the holiday season has been like for me. While it hasn’t always been as sweet as a candy cane, the Grinch of DMD doesn’t steal all my cheer.