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If it wasn’t for my bad luck, I’d have no luck at all

A rare disease diagnosis can be scary, overwhelming, and life-changing, often bringing unexpected health complications and comorbidities. During my time with a rare disease, I’ve learned that I have a proclivity for medical drama. In September 2020, I nearly died when COVID-19 complications triggered atypical hemolytic…

Embarrassment was an unexpected part of my aHUS journey

It’s normal to feel embarrassment, discomfort, or shame in medical situations. Being in a vulnerable state can be a humbling experience. In September 2020, I nearly died from multiorgan failure caused by atypical hemolytic uremic syndrome (aHUS). I still haven’t wrapped my head around it. I ended up…

What does it mean to be brave?

“You’re so brave.” I’ve been told this numerous times. I have a good friend who says it to me often. But how does one define bravery? When I think of bravery I think of someone fighting to right an injustice. Fighting for someone who can’t defend themselves. Or standing up…

As I Prepared for Surgery, I Dealt With End-of-Life Questions

End-of-life preparation: What a bleak and unsettling subject. Will you be buried or cremated? Who will take your children if you die young? How will your assets be dispersed? I didn’t think I’d have these concerns at age 36, when I almost died. Death is inevitable, unfortunately, but most of…