Did living with Angelman syndrome make me a minimalist?

As the caregiver to my 14-year-old daughter, Juliana, I’ve learned a precious life lesson that helps me function better while living with Angelman syndrome. What’s the lesson? It’s that I can’t live my life like everyone else.

Years ago, when I realized this, my world got simpler. This realization isn’t a sad mantra stating what can’t be because of Angelman syndrome. Instead, I’ve turned to a life of minimalism, which is about removing ideas and items that aren’t necessary. Deciding to live on different terms gives me clarity and helps me consistently make room for what’s best and important to me. Right now, clarity means that it’s time for me to move on from the column I’ve enjoyed writing for the past three years.

When I began writing “A Glass Half Full” in 2021, I started with a column about how my life as a minimalist made it easier for me to be a care provider. I remember my editor commenting that it was a unique topic for my first assignment. This column will be my last, so it seems fitting to finish as I started: focusing on how minimalism continues to improve my journey.

Some people still view minimalism as declaring that you’ll live in your home with very little stuff. But that’s not what the lifestyle is about. It’s about taking unnecessary items or beliefs away to make room for what is needed most. Sometimes it’s physical items — like when I purged Juliana’s old records and equipment. Other times, it’s doing what’s necessary for self-care, like taking a break from something you love.

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I’ve been writing about our life with Angelman syndrome for 11 years. Originally, my writing began out of frustration because I couldn’t find any positive stories about Angelman. I wanted to give real examples of how I faced everyday difficulties and stayed sane during those crises.

I’ve received wonderful questions and comments from readers over the years that make me believe I’ve done that. But taking my minimalist values at heart, it’s time for a break.

When I started my column, I had more time for the little extras. But when I returned to full-time teaching last year, I realized that grading stacks of English papers, managing self-care, and writing is a lot to juggle. And that’s in addition to my primary responsibilities as a care provider. I pride myself on managing what is reasonable instead of trying to do too much. Contrary to what may work for others, busyness never works well for me.

It’s no secret to anyone who knows me that I value simplicity. For example, when my husband coached at my daughter’s school last year, we experienced some big changes that pulled us away from a life with less. When the season ended, we pondered if the job was a good fit for our family. We decided it wasn’t. Although my husband enjoyed coaching, it added unnecessary strain to our schedule and routine.

Which came first?

Often, I’ve wondered if I’d be a minimalist if we weren’t navigating a life with Angelman syndrome. It’s a question I’ll never be able to answer. But I can rest well knowing I can do so much more with less. Living with a neurogenetic disorder in the family will always make me feel like more is required. But it’s simply not true.

It’s been a pleasure crafting stories and ideas to prove that living with Angelman syndrome can be viewed as a glass half full. More than anything, I’ve tried to give hope and encouragement to make others’ journeys just a little bit easier in some way.

To keep up with Juliana and our journey, please visit my website.

Note: Angelman Syndrome 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 Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.