Columns

Grieving the Loss of My Furry Friend

My life with mitochondrial myopathy has been a roller coaster, but my dog Andre was always there to brighten my world. After days spent healing in a hospital room, I could look forward to coming home to my beloved Andre. If I was suffering through the flu and…

True Accessibility for All: No Roadblocks, Please

Whenever the topic of accessibility comes up, you can bet there’ll be great passion. We all want the right to access and partake in everything beautiful in life, yet so much of the world is unreachable to those of us with disabilities.  In this column, I introduce my alter…

Learning to Be Social with Duchenne

Living with Duchenne makes a lot of things difficult, including socializing with other people. Throughout my life, especially as the disease has progressed, it’s gotten harder to relate to people without physical disabilities. Even with the added difficulty, I’ve succeeded socially by carefully choosing the people I surround myself…

I Push My Limitations by Setting Goals

Come on! Is it essential to set goals in life? Do we need them? How can those of us who deal with a muscle-wasting illness push ourselves appropriately and live life to the fullest extent possible? I can tell you that it’s easy to fall into inaction if we…

Looking at the Complexities of Mitochondrial Myopathy and Autism

Initial misdiagnosis is a common experience of those living with chronic illnesses. Many diseases have similar characteristics, and during the process of elimination, patients can receive an incorrect diagnosis.  In previous columns, I have written about my early developmental delays. I’ve shared my tips for teachers…

The Art of Asking for Help

My mom used to shake me awake in the morning, cook me breakfast, and send me off to school with a packed lunch. She made sure I took all my pills, ate vegetables, and had consistent physical therapy. My dad and some teachers acted as my arms and legs to…