Columns

It seems silly to write about a corner in my house. Most people walk by their cabinets every day without giving them a second thought. If they do, they might think, “I should clean this out today,” “I want new dishes,” or “Maybe we should remodel.” I never thought one…

When you live with a chronic illness, doctor appointments become a regular part of life. Some are routine. Some bring answers. Others bring more questions than you walked in with. Over the past few months, I’ve had more than my fair share of them. What started with one unexpected medical…

“Family isn’t always blood. It’s the people in your life who want you in theirs. The ones who accept you for who you are. The ones who would do anything to see you smile, and who love you no matter what.”― often attributed to Maya Angelou Growing up, my household consisted…

I recently wrote a column about how I don’t really feel “sick” with Gaucher disease. Looking back, though, I don’t think that column told the whole story. I’m currently dealing with some other medical issues, and when you already have a chronic condition, everything somehow feels connected. A…

How can I turn a ripple into a giant ocean? How can my ripple have a lasting impact when there are thousands of ripples just like mine? How can I weather a storm that I’m not sure will ever end? For the longest time, I struggled to come to terms…

One of the questions I never expected to face as a parent is how to explain a chronic illness to a toddler. My son is almost 2 years old, which means he doesn’t understand much about Gaucher disease. He doesn’t know what a genetic disorder is, why I need…

There was a time when getting medical information required a lot more effort. If you had a question about a symptom, a test result, or something your doctor mentioned in passing, you either waited until your next appointment or spent hours searching through websites and forums, trying to piece together…

Most people would never notice anything different about me until they saw the Band-Aid on my hand. It leaves the door open to questions I do not, and often cannot, answer. These questions can leave me feeling exposed before I even have a chance to introduce myself. This is often…

Sometimes it feels strange to write publicly about Gaucher disease because, most days, I don’t feel particularly sick. That’s not something people usually expect to hear from someone with a rare disease. There’s often an assumption that chronic illness has to feel constant and consuming, that it should always…

I was told many years ago that I had an actual expiration date. Put that way, it makes me think of a banana in the grocery store eventually going bad. I know it sounds a bit dark, but that’s what comes to mind. When I was 18 months old, my…