Hometown: Born in Kalamazoo, Michigan. I moved to Lake St. Louis when I was three and have lived here ever since. I eventually want to move to St. Louis City.

Age: 23

Diagnosis: Infantile Onset Facioscapulohumeral Muscular Dystrophy (FSHD) (this is my primary diagnosis), hearing loss, Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, other minor diagnoses

When were you diagnosed? I was diagnosed with FSHD at age ten but have shown symptoms since birth. Other diagnoses followed between then and now. Some may be complications of FSHD, but we really don't know. Recently, my breathing has begun to be affected. Even though I've been diagnosed for 13 years, I am constantly still learning more about my body and how it works, along with all the issues it has.

What has been the most challenging part of your disability? The progressive nature of it all. I wouldn’t say I like change, yet my body and abilities constantly change. I recently had to transition from part-time wheelchair use and had to hire a personal care assistant to help with activities of daily living. When my body changes drastically, it almost feels like my societal place changes. My dreams and aspirations have to be tempered to be realistic to what I can physically accomplish. People, especially strangers, treat me differently than I used to be treated when my disabilities were less progressed and less visible. For example, the infantilization by strangers when I'm at the store has dramatically increased. People will ask the person I'm with without asking me directly. Even people in my family treat me differently at times. All of this can be incredibly lonely at times.

What has been the best part about being in the community? Knowing I'm not alone in my struggles. I don’t have to educate or explain. I am just accepted for who I am.

What has been the greatest achievement with your disability? I've done public speaking about my experiences at various FSHD-related events. It is very important to share my story and let others know they aren't alone.

Advice for other individuals with disabilities? Find a community as soon as possible. For the longest time, I isolated myself from other disabled people due to not accepting my own disabled self. It wrecked my mental health. Disability is a very isolating and challenging experience. Between inaccessibility, discrimination, and other forms of ableism, we deal with more than non-disabled people will ever realize. Connecting with the people who understand saved me. I value the disabled friendships I have, and I'm beyond excited to make more.

Fun Fact: I started playing powerchair soccer this past year. It has been a great experience and has helped me build even more community. I am also a crafter. I have to do things in an adapted way sometimes, but I am determined to be able to continue this passion.