Living with Muscular Dystrophy

Muscular Dystrophy is a part of my everyday life, shaping how I navigate the world—both offline and online. I live with advanced Becker’s Muscular Dystrophy (BMD), a progressive genetic condition that causes muscle weakness and wasting over time. Unlike its more widely known counterpart, Duchenne’s, BMD progresses a bit more slowly—but still brings real and lasting challenges.

For me, this means needing significant rest between tasks, relying on assistive technology to work and communicate, and being mindful of energy levels to avoid pain or injury. Even something simple, like typing or moving a mouse, can take a toll. That’s why I pace myself and design my workflow around rest and accessibility.

Some of the symptoms I live with include:

  • Chronic fatigue and muscle cramping
  • Weakness in my limbs and core muscles
  • Heart involvement, including cardiomyopathy and irregular rhythm
  • Sleep apnea and joint contractures
  • Frequent falls or difficulty maintaining balance
  • Trouble breathing or swelling in the legs after long days
  • Delays in motor function, both gross and fine

This condition doesn’t define me, but it does shape how I show up—and that’s something I’ve learned to honor, not fight.

Living with Autism

I was diagnosed with autism later in life, something that—like many women, especially those with chronic illnesses—took years to fully understand. I also discovered that many people in the BMD world have autism, and it’s almost expected by some medical professionals now. In hindsight, the signs were always there. But growing up without the right support or language to explain it, I internalized the idea that I was just failing at things others seemed to handle with ease. I wasn’t. I was living with a brain and a body that simply didn’t fit into the standard mold.

Autism touches every part of how I move through the world. I’m extremely sensitive to light, sounds, and textures. I take things literally, communicate very directly, and often miss or struggle with unspoken social cues. Large social settings cause a lot of anxiety, and disruptions to my routine can completely derail my ability to function. I also tend to zero in on details and miss the big picture, which can be frustrating—but also incredibly useful in the kind of work I do.

Because while autism brings challenges, it also gives me strengths I deeply value. My hyperfocus allows me to pour myself fully into creative work. My passion for retail spaces and commercial environments—something that’s become a special interest—makes me genuinely excited to recreate them in Second Life. I notice the tiniest design details most people overlook. I remember things vividly. I pull from a wide spectrum of artistic and musical inspiration. And I often find creative, unexpected ways to solve problems that others might miss.

Autism is part of who I am. It doesn’t make things easy, but it does help make my work what it is—personal, immersive, and deeply rooted in care and curiosity.

When I write roleplay stories on the blog, especially those involving my kiddo avatar, I do so with a clear awareness that my younger self never received the support she truly needed. Giving that support to my character now is a way of giving it to myself. It might seem silly to some—to play an autistic child—but that’s just who I am, and I couldn’t write her any other way. Through her, I get to imagine a world that’s gentler, more accommodating, and more understanding than the one I grew up in. And in doing that, I heal something real inside myself.

Resources & Further Reading

If you’re interested in learning more about Becker’s Muscular Dystrophy, autism in adults, or how these experiences can intersect, here are a few helpful places to start. These are not medical resources, but trusted organizations and articles that reflect lived experience, advocacy, and up-to-date information.

Muscular Dystrophy

  • Muscular Dystrophy Association (MDA)
    In-depth info on Becker’s Muscular Dystrophy, symptoms, progression, and support options.
  • CureDuchenne
    While primarily focused on Duchenne MD, this site also includes research and updates relevant to Becker’s.

Autism (with a focus on adult and female experiences)