You, Me and MD - a Column by Leah Leilani

tiredness, single, ableism, angels, independence, crip camp, redefining success, introversion

Leah is a Southern California-based patient writer. She’s been an active member of the muscular dystrophy community since her regional ambassadorship with the MDA beginning at the age of 10 after her diagnosis of a rare neuromuscular disease, mitochondrial myopathy (Mito). Leah advocates for those with disabilities and promotes an understanding of her condition by evoking a positive outlook upon the obstacles she faces. Leah’s work doesn’t just stop at her column: she also doubles as a co-moderator on the MD News Forums. Away from her jobs, Leah is known among family and friends for her artistic creativity and outgoing personality.

A Bittersweet Farewell to My Column Readers

Dear readers, This will be my last column for Muscular Dystrophy News. I want to thank you for following along with “You, Me, and MD” and for supporting me. You are the reason I write, and I hope I have made some difference in your…

I Make Sure My Support System Is Strong

When I’m deep in thought, reflecting on my life, I shudder to think who and where I’d be without the support of my family and friends. Whether I need a shoulder to lean on or simply a sounding board for my own jumbled thoughts, I can trust that…

Give Yourself Some Peace of Mind This Holiday Season

This year has been full of seemingly insurmountable struggles for everyone. As we resolved one hardship, another seemed to suddenly appear, creating an endless cycle that rocked our mental stability. I include myself in this. So, it’s no wonder why most of us are eager to end this…

The 4 Categories of Tiredness

Those of us with invisible chronic illnesses master the art of mindfulness for our bodies. Since our symptoms show little signs of existence, we must work hard to translate our body’s hidden language of fatigue. Neglecting this skill could impede receiving the medical help we so desperately need.

Living for Myself While Hoping for the Right Person

I have clear memories of listening to my fourth-grade friends talk about what their “boyfriends” got them for Valentine’s Day, or whispering between one another during class about who liked whom. My hope of one day having a stereotypical teenage romance carried into high school, but dwindled as…

The Battle Against Ableism Is Tiring, but I Won’t Give Up

A few unfortunate circumstances recently have left me mentally exhausted by the endless recurrence of ableism. It feels as though ableism lurks around every corner, waiting for the opportune moment to rain on my sunshiny parade. Arming myself with an advocate seems necessary for braving the outside…

The Angels Who’ve Profoundly Affected My Life

Living with a disability often means I’m exposed to people’s true colors. This can be both positive and negative. My disease has familiarized me with the cold shoulders of family members and the condescension of doctors, but it has also strengthened my gratitude for the people in my…