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.

Here’s How I Decorated My Wheelchair This Christmas

In my family, almost every holiday deserves decorations. Even Valentine’s Day is celebrated, with heart stickers on our bathroom mirrors and red-heart garland strewn about the house — inspired by the Valentine’s dinner scene in the movie “Julie & Julia.” My dad is mostly to thank…

Seasonal Cooking with Mito

The Christmas season has drifted in, and with it come mouth-watering kitchen smells. It’s time to mix the cookie dough, roll out the pie crust, and stick the turkey in the oven.  I have fond memories of helping my mother make cranberry sauce from scratch. She was…

Small Ways to Get in the Holiday Spirit

The holidays can be a tumultuous time. Advertisements would have us believe that the ups and downs of life take a hiatus for the holiday season. However, many of us know that it’s unrealistic to expect that Christmas will be perfect. Our disabilities and chronic illnesses can be…

My Introduction to Medical Marijuana

Marijuana use in the United States dates back to the 1600s. Before being introduced as a recreational drug in the early 1900s, hemp, a variety of the cannabis plant, was used to produce products such as rope and cloth. Studies into the use of the substance in…

Making Medication Compliance Easier

I feel like the only thing I do is take care of my body. I am constantly weighing the odds of every decision, theorizing risks of negative bodily impacts.  Medication compliance is unpleasant. I take so many medications that it could be considered a passivity. I hate…

Wheelchair-accessible Halloween Happenings

Halloween pulls at my heartstrings. I love it so much that even Christmas comes in second. Maybe it’s thanks to all the beautiful fall colors or the excitement of digging out my favorite sweaters. Or perhaps it’s the smell of pumpkin spice flooding the air. I daydream about…

The Simple Act of Opening a Door for Someone

Society is an odd concept if you really think about it. It controls us like puppets on a string. As society continues to evolve, it seems to value chivalry and manners less over time. This can pose an issue for those of us in need of assistance…

Things to Keep in Mind When Choosing a Wheelchair

There are many skills to learn if you recently have been diagnosed with a chronic illness. These range from being organized for doctor’s appointments to finding the best mobility assistance equipment. In today’s column, I will share my experience choosing a power wheelchair.  I got my current…