Uncertainties, Unknowns, and Unstoppable Forces

My name is Danielle, and I was born with a congenital myopathy of unknown origin. Since the cause remains unidentified even after 30 years, it’s difficult to determine whether my other chronic conditions, such as dysautonomia, severe GI problems, and migraines, are related to it. I had muscle biopsies at 8 months and 5 years old, but both results were inconclusive. Around the age of 20, my geneticist physician recommended exome sequencing tests. Ultimately, the results raised more questions than answers.

Now that technology has advanced, my 25-year-old muscle biopsy sample (which the pathology department luckily still had) will be sent out for whole genome and RNA sequencing testing. Perhaps I will get more answers this time, but living with a largely undiagnosed condition has taught me many lessons. One is the importance of writing my own story. Although knowledge is power, and I’m actively seeking a diagnosis, having nothing to "Google" has been freeing in some ways. It has helped me care less about what "society" thinks, because we only have one life, and it is unique to each of us. This realization has given me confidence in creating my "Daniellevates" content, a zest for traveling, and has made me more fearless in my advocacy endeavors. Surrendering to the unknown has allowed me to pursue what feels fulfilling to me.

While my spiritual beliefs are deeply rooted in Christianity, I enjoy learning about other religions to find commonalities. I figure that if a belief is shared across different systems, it must hold some credibility. This "surrender to the unknown" ideology leaves room for my belief in God’s presence in my life, but it also ties into one of my favorite parables about the Taoist farmer. Choosing to remain neutral about my health and disability allows me to view each moment as an opportunity. In difficult times, it can be hard to find hope. You don’t always have to be hopeful, but staying curious is essential. You don’t need to believe that something good is around the corner, but it's important to be open to the possibility that it might be.

Asking "why?" is sometimes seen negatively when it comes to faith or the disability experience. It’s not always easy to accept life’s circumstances without asking, "Why me?" I choose to accept that these "why me?" thoughts may arise from time to time, but not holding onto them is key. Moreover, "why me?" can be reframed as a positive question. Why am I in this situation right now? What am I supposed to learn about myself and my strengths in this moment? Who might need help that I am uniquely qualified to offer? Is this an opportunity for an unexpected detour in life? Life’s unstoppable forces can move us into lanes we never anticipated, but we are capable of making powerful moves ourselves. Remembering that power is crucial.

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My "Daniellevates" content is all about elevating ideas about disability, chronic illness, and rare disease through humor, education, and adventures. You can find me on YouTube with long-form vlogs with accessibility reviews under the username "Daniellevates." I am also "Daniellevates" on TikTok, but on Instagram, I had to add an underscore before, so the username is "_Daniellevates." Thanks for reading!