On Oct. 21, 2019, I sat in a doctor’s office with my 11-month-old son, Alfie, and was handed a piece of paper. Nothing was said, nothing was explained — I was just given the paper. This piece of paper included words such as “severe,” “deformities,” “insufficient,” “seizures,” “inability to…
On Feb. 19, I received my second dose of the Pfizer COVID-19 vaccine. According to the nurse who gave me the injection and clinical trial results from the biotech company, the vaccine is about 95% effective against COVID-19 within seven to 14 days, a period that ended for…
When I was a kid, music from the likes of Led Zeppelin, Fleetwood Mac, and Jim Croce swirled around the house. The three were staples in my dad’s vast collection of vinyl records. Being from Wisconsin, he stored them in steel-wire milk crates that would leave a metallic odor on…
Rare Disease Day, a global push for rare disease awareness, is less than a week away, on Feb. 28. As someone with a rare disease myself, I’ve heard the word “rare” quite a bit in my life. It’s a beautiful rallying cry…
“A white wolf in a white wood, silent as a shadow.” – “A Dance with Dragons,” George R. R. Martin I wanted to write something that encompasses the upcoming Rare Disease Day on Feb. 28, and what it means to me. I searched my thoughts to figure out how…
In the last year, it’s been easy for me to coop myself up in my room and spend the entire day without stepping outside once. I’m either afraid of getting COVID-19 or I get caught up with work, and by the time I…
His palms firmly pressed against the pommel, he holds the sword close to his chest. He can feel the heat from the fire on the other side of the stone wall. Fear has no home in this dangerous place, and yet, there it is. It sits on his heart like…
I’m a self-described gamer, and proud of it, but lately I’ve realized I’ve probably been playing too much. Two weeks ago, during online church services, we talked about fasting, including from things beyond food, such as social media and TV. That raised the question with me of why not trying…
Dear readers, This will be my last column for Muscular Dystrophy News. I want to thank you for following along with “You, Me, and MD” and for supporting me. You are the reason I write, and I hope I have made some difference in your…
When I’m deep in thought, reflecting on my life, I shudder to think who and where I’d be without the support of my family and friends. Whether I need a shoulder to lean on or simply a sounding board for my own jumbled thoughts, I can trust that…
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