The muscular dystrophy world is ever-evolving. I began to have symptoms of muscle loss and weakness in 2006. Science had not yet discovered my form of the illness, limb-girdle muscular dystrophy subtype 2L (LGMD2L). My physician, a member of the Muscular Dystrophy Association, told me they would find…
Joy is one of the best tools we have to combat the progressive loss of our physical abilities. It’s an emotion that helps us triumph over our negative feelings. I wouldn’t be where I am today if I didn’t live a life of joy. What exactly is joy? The emotion…
I’ve never considered myself to be insecure about my disability. My use of a mobility aid has never dulled my social butterfly persona, except on a few occasions when I’ve communed with other people with disabilities and had to face the reality of my own disease. …
Author’s note: The COVID-19 crisis has already lasted several months. The reality is that we don’t know how this will go. But as a community, my opinion is that we need to be ready. We need to be knowledgeable. This column will focus on some work we have done to…
Netflix’s new documentary “Crip Camp” transports viewers to the peak era of peace-preaching hippies and civil rights activists. But amid these revolutions, another minority group struggled to find belonging: the disability community. To further their cause, Camp Jened’s hippie staff dedicated themselves to treating people with disabilities…
COVID-19 has forced families around the world to stay indoors and spend a lot more time together. This will not change for quite a while, especially for those of us with chronic conditions who need extra protection. As I wrote in my previous column,…
None of us have lived through something like what we are going through today. Some have attempted to equate it with other historical events. But there is a uniqueness to this pandemic. As far as I’m concerned, these comparisons aren’t helpful. We live in a unique period of technological advancement.
In the days when I still attended school, I was deemed an extrovert by my teachers and school officials. Never did I falter in putting myself “out there.” I was best known as the girl who won the talent show by belting out a Dixie Chicks song while…
I’ve always sought silver linings, including in this season of social distancing. Many people now exclusively use technology to communicate with family, friends, and co-workers to reduce viral spread. Instead of hanging out at inaccessible places, people connect from the comfort of home. Self-quarantine has yielded plenty of valid complaints,…
I feel strange not writing about the pandemic crisis in this column, but we’re already bombarded with information about it, and it appears we will deal with these issues for a while. So, I will be back in two weeks to discuss how I am living through the crisis. I…
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