The song “The Daring Young Man on the Flying Trapeze,” lyrics by George Leybourne and music by Gaston Lyle, plays loudly in my mind. As a child, I loved the lines “He’d fly through the air with the greatest of ease/ That daring young man on the flying…
Creating an online dating profile can be an ominous task. At least it is for me. I’m always worried about how to present myself and what I should say. How do I ensure that others will see me for who I really am — someone who’s active, fun, loving, relatively…
The first thing you’ll see when you walk into my storage shed is an all-terrain knee scooter. To the left, there’s a wheelchair, and to the right, a walker. Moving to my bedroom closet, you’ll find crutches, multiple canes, a walking boot, ankle and knee braces galore, Ace bandages, self-adhesive…
In the fall of 2023, I was at a work conference in Indianapolis and headed down to the hotel lobby to meet a colleague for lunch. I was excited, as we were going to eat my favorite food: Ethiopian! Suddenly, I felt a sharp, shooting pain in my hip. It…
I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly, I despise it being used to describe anyone living with a rare disease or disability. I think it’s the wrong word, as its use can inadvertently minimize the emotional challenges…
I meet a friend at noon at my home in rural northern California. We hop into my car and drive two hours north to Brookings, a coastal town just across the border in Oregon. Driving around town, I search for a quiet parking lot with good phone reception. Using a…
When I tell people I’m a woman with hemophilia, I’m often met with the same response: “Well, that is really unusual. It’s rare for women to have hemophilia!” This ubiquitous misconception is the bane of every female hemophiliac’s existence. It often stands in the way of women and…
Me: “Hello?” Medical assistant: “Hi, Shellye, the doctor wants to see you ASAP to discuss your recent test results. She’s concerned.” Me: “Oh no, that doesn’t sound good. Can you tell me what’s going on?” Medical assistant: “We just got your baseline bone density tests back and they show you…
Two and a half years ago, I purchased a manufactured home in need of a few repairs. Truthfully, it had really good bones, but was a dump. But I saw the potential in it and knew that with enough love, time, and renovation it would be a beautiful place to…
I suddenly felt wet when I shouldn’t have. I ran to the bathroom and began pouring blood into the toilet, turning the water there a bright red. I gave myself an IV infusion of factor VIII, a protein I’m missing that’s necessary for blood to clot. As a result, the…
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