I’m still meeting with specialists regarding my rare disease — and the search for answers continues to be confusing. I recently met with a nephrologist at Johns Hopkins who specializes in aHUS. While the hematologist I saw at Georgetown believed I had the disease, this specialist disagrees.
So — is this bad news? Yes. I’m disappointed that my new kidney is officially dead. It was a huge sacrifice on Brad’s part, my donor, and I loved the energy and zest I felt for those nine weeks. Is it good news? Weirdly, also yes. My native kidneys are holding on.
Thankfully, one of my nephrologists took my concerns seriously. He re-reviewed the genetic test and looked into other autoimmune causes. That’s how he came to diagnose me with aHUS.
Maybe not every hardship needs to be turned into a narrative of growth. Maybe some of it just is. Sometimes it just fcking sucks, and it’s just part of being human.
My deepest prayer is to get better and return to the work I love — sharing my story, saving lives, and building communities again. But I’m learning to trust that, like Suleika Jaouad, I can write through the pain and, when the clouds part, shape my thoughts into something lasting: a memoir for Barney that tells him who I am, what I’ve loved, what I’ve struggled with, and what I believe in.
This won’t be a very introspective email—I’m not feeling well. The main update is that my viral numbers have come down, which is encouraging.
Self-attunement is about listening inward, without losing the ability to stay present with others. Self-absorption, on the other hand, is a loop of over-focusing on oneself—which can lead to behaviors like distraction, defensiveness, interpreting, assuming, and judging. Both are common human experiences. However, one brings connection. The other builds walls.
Hope and realism aren’t opposites. I’m learning to carry them side by side.
I’m also learning that expansion and contraction will be part of my life from now on (and it always was, but I didn’t pay as much attention to it).
“This is so hard. Please help me get through this. Please get me to the other side. But please… can I just get a break?”
The message I got, surprisingly clear, was: ‘Fight through your writing.’ And suddenly, I felt better.
For the first time in 15 months, I’ve been able to meditate again—something I haven’t been able to do since delivering Barney.