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.

Dating with a Disability: Part 1

Part one of a series. Last summer, I was looking through some Bionews Services articles when I came across one about online dating. The young woman who wrote the article talked about how she never felt like she fit in at school and because of that, she hadn’t…

My Journey to Love My Chronically Ill Body

Everyone suffers from insecurity every once in a while. It doesn’t matter whether you’re a man or a woman, a child or a teenager. Nor if you’re disabled or able-bodied. But when your body starts to fail you, that can sometimes escalate those occasional feelings of self-consciousness. Before…

12 Things to Pack for Your Hospital Stay

Whether you or your loved one has a chronic illness, it’s important to prepare for hospital stays. Despite my many visits to the emergency room, I’ve only had to stay in the hospital a few times. We keep a suitcase in the car full of essentials for an…

Noticing the Blessings in Everyday Life

Chronic illness can dramatically alter life perspective. If there’s anything I’ve learned from having mitochondrial myopathy, it’s gratitude for my surroundings. I guess I’ve developed a kind of mindfulness from days spent inside my house trying to regain energy. If I’ve drained too much energy, it can take…

Breaking the Stigma of Asking for Help

A lot of people think that asking for help is a piece of cake. A walk in the park. But I’ve learned, not only from experience but also from watching other people, that it’s not always that simple. Even now, after living with mitochondrial myopathy for 14…

Making My Bathroom Wheelchair-accessible

Renovating your home for wheelchair accessibility can seem like a daunting task. You would not be wrong. It is an overwhelming project and some people don’t know where to start. The cost can also be intimidating, too. It may not be affordable when you’re constantly paying your medical…

Fitbit Is Not Just for the Able-bodied

Fitbits aren’t just for able-bodied fitness gurus; they have many more features than just counting footsteps. As I was out on a shopping trip with a friend a couple of months back, I realized she was wearing one. I immediately thought, “Oh, she’s just trying to be more…

Finding the Balance Between Style and Comfort

Being wheelchair-bound and still stylish can be the ultimate challenge. It’s hard to find that balance between style and comfort, especially as a woman. The average, able-bodied female millennial has enough trouble going into a store and finding a garment that not only looks good but also makes…