Columns

I’ll always feel when the seasons are changing by the way my skin reacts. Here in Vienna, autumn is slowly coming to an end and winter is coming, slowly crawling into our smallest crevices. I not only recognize winter when it gets darker outside and the temperature drops, but I…

My therapist says I have “high-functioning” anxiety. This is not news to me. I’m thankful to have confirmation of what I’ve known for decades. In childhood, my high-functioning anxiety stemmed from doing everything my parents told me to do, as I was constantly afraid I might mess up.

I went to a baby’s funeral last week. I have been to too many babies’ funerals. Counting last week’s, I’ve been to six in the past 15 years, beginning with my own son’s after his stillbirth in 2008. Six. Six children gone in what seems like a breath. Even…

The year 2023 has been full of new beginnings and big adventures, including turning 30 last month. But that’s made me feel pressure. I felt I had to reach certain standards and goals as I said goodbye to my 20s. I didn’t feel I was where I should be for…

When our son Jonah, who was born with epidermolysis bullosa (EB), was 3 years old, our requests for educational support and therapeutic services were denied for a second time by our school district. I was distraught. At that time in our state, when children with special needs turned 3,…

I’m 41 and a half years old, and I started therapy for the first time two weeks ago — real, consistent counseling that I plan to continue indefinitely. After our first son, Gabe, was stillborn — likely because of epidermolysis bullosa (EB), we suspect — and then…

My life has been crazy lately, in good and bad ways. I’ve confronted many challenges and felt like I’d reached my limit in certain areas. I even lost focus, forgetting to do things that make me happy and boost my confidence, such as playing sports. I also experienced moments…

I get so tired of thinking about epidermolysis bullosa (EB). Even as I sit down to write this column, I’m wondering, “What’s left to say?” My son Jonah was born with the condition, and we’ve spent 14 years dealing with it. There’s still no real treatment, and definitely…

Jonah, my son with epidermolysis bullosa, graduated from eighth grade two weeks ago, when he walked across the stage of the amazing school he’s called home for the past nine years. School doesn’t feel like the right word, though — maybe community, home, or sanctuary. It’s the…

I recently wondered why we who live with rare conditions often get told how to feel. I’ve experienced this instruction in many different situations. When strangers see me with my scars and bandages, many tell me, “Oh, no, it must be so awful living with your disease. Your life must…

“Mom,” my son Jonah, who has epidermolysis bullosa (EB), texted me a couple of weeks ago. “I just accidentally poked myself in the eye.” He’d just completed one of four straight days of standardized testing at school. Normally, it doesn’t matter if someone pokes themselves in the eye. And…

Occasionally, I forget that I live with a rare disease. For me, that’s a good thing. It means I’m doing well enough that my condition doesn’t bother me on a day-to-day basis. But sometimes, my body will say, “Hey, stop! You have a condition to consider. You need to take…