Columns

The world can be overwhelming thanks to the deadly coronavirus pandemic, especially for someone dealing with muscular dystrophy. On top of the daily struggles — lack of mobility, physical exhaustion, and steroid-related side effects — there’s also the worry of getting sick and feeling the virus’s financial…

Most mitochondrial myopathy patients rely on sleep as therapy for our disease. Yes, rest can be effective at regenerating lost energy, but there’s nothing comparable to a restful night’s sleep or a deep nap. Without proper sleep, our bodies can rapidly deteriorate, resulting in…

When I was younger, I couldn’t imagine losing my ability to get up from the ground, run, or play soccer. Now I can’t imagine losing my ability to walk.  At 23, I’m still able to walk despite having Duchenne muscular dystrophy, and I’m incredibly thankful for…

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…

Columnist’s Note: Dear reader, this will be my final column at Muscular Dystrophy News. The past 15 months have been wonderful, but I have decided to take time away from writing to work on a variety of things, including the LGMD2L Foundation. Next year will bring us many opportunities…

I like to think I’m pretty funny, at least that is until I work up the courage to say something in a conversation. A lot of my humor has to do with my disability. Making a few wheelchair jokes here and there makes people uncomfortable, but it helps…

I often associate independence with adulthood and coming-of-age. The liberation of a teenager learning to drive a car or a student bidding farewell to their childhood home as they are whisked off to college are just a few things that come to mind. I think of these things…

In the disabled community, many people discuss the negative implications of being called “inspiring.” Some have said it’s objectifying, reduces our humanness, or congratulates us just for being disabled.  I agree with many of those statements; however, if I am helping a person work past their…

“Life can only be understood backwards; but it must be lived forwards,” said philosopher Søren Kierkegaard. He came up with an existential masterpiece. In a dozen words, Kierkegaard captured what we all struggle with in finding meaning in our lives. I find it much easier to look backward to…

It is undeniable that the coronavirus pandemic has affected many aspects of life. Along with establishing new norms for work, school, and social interaction, the pandemic has forced romantic relationships to undergo alterations.  “When can I see you again?” my boyfriend, Will, asked for the…