Hello Everyone,

I’m not going to lie—yesterday I had a breakdown. The last few days have been physically rough. Between the plasmapheresis (where they remove toxins from my plasma), the IVIG therapy (where they infuse the better stuff back in), and the nightly infusions I have to give myself to fight the virus that’s been attacking my body—it’s been a lot.

It’s hard to go from feeling so much better with my new kidney to suddenly being in pain again. I sleep a lot during the day because I’m exhausted. My jugular hurts from the new port catheter. My side is swollen, which leads to sharp, stabbing pains.

And then, at my doctor’s appointment yesterday, while the news wasn’t terrible, it wasn’t great either. My kidney function isn’t improving—which, just to be clear, isn’t a horrible prognosis. We’ve caught the rejection early, and there’s still a strong chance things can turn around.

So now we’re shifting to a more aggressive course—higher doses of steroids and new anti-rejection meds. What’s hard about the steroids is the way they’re changing my body again. My face is full and round. My eyes are swollen and small. My stomach is distended while my arms and legs are spindly. And yes, as sick as I am, I still want to feel beautiful. I know people will want to reassure me that I am beautiful—and I appreciate that—but it doesn’t take away the grief of watching my body morph into something I didn’t choose, again. It’s another layer of loss I have to accept, which will likely change again.

In a bit of a panic, my mom and I called a friend of a friend who’s a nephrologist, and thank G-d, he was a godsend. He walked us through my treatment plan and told us it was aggressive—but exactly what he would do too. As you can probably imagine, given my health history, we’re big fans of second opinions, and this one brought so much relief.

Meanwhile, I spent hours on the phone—while feeling awful—trying to coordinate meds with my insurance, dealing with a home health company that does not have their act together, and finally, I just called my social worker and asked her to take over. I told her I couldn’t go back and forth anymore. No more phone calls unless it’s to schedule something directly. I’d repeated the logistics so many times already. Thank G-d she stepped in because she was able to resolve the issue for me.

So I try to rest, watch a movie—and end up scrolling on my phone instead. Sometimes zoning out is my coping mechanism. But lately, I’ve been getting better at noticing when it’s turning into suffering or depression—and pulling myself out faster. (Yes, I’m going to be honest: it can get there.)

For a moment of self-care, I took an awkward shower in my parents’ bathroom—they have a hand hose, which helps—but what ended up happening was so much more than that. I started crying, screaming, and gulping the wet air all at once. It was raw and intense and completely cathartic. I kept pleading with G-d—who, for me, is more of a spiritual presence than anything traditionally religious:

“This is so hard. Please help me get through this. Please get me to the other side. I’m so grateful—for my family, for my friends, for all the love around me. I’m grateful to be a mom to a beautiful boy. But please… can I just get a break?”

The message I got, surprisingly clearly, was: “Fight through your writing.” And suddenly, I felt better.

Being a child of the ‘90s, the Beastie Boys popped into my head: “You gotta fight—for your right—to party!” And from that came my mantra: Write to fight.

It felt empowering because, while I don’t have a ton of energy, I have my writing in the moments that I do. Writing helps me make sense of this chaos, but it also lets me have a voice in all of this.

It’s strange. My body feels wrecked. My mind is slower from the drugs. But it’s still here—still following, processing, thinking deeply. It’s taking the nightmares I’ve been having—so many lately—and helping me wake up and decide whether they’re worth unpacking or not. My mind still feels like a doorway to my soul and spirit—and writing is how I channel it. It’s how I make sense of what I’m going through. In that way, writing becomes its own kind of doorway too.

So you might wonder—why fight? Why not accept? But fighting is part of acceptance. It’s the part of me that chooses to keep going, minute by minute, day by day. There isn’t much space right now for big-picture thinking. As you’ve probably noticed, my writing’s different now—more in-the-moment. That’s just where I’m at.

So yesterday, I made the choice to take a walk—because my doctors want me to move every day to keep my body oxygenated. It helped. Then I went with Ian to pick up medications, and we had fun. We’re really enjoying each other’s company. Then I played with Barney for a few hours after daycare and tried to be fully present with him.

Those moments pulled me out of the pain for a while. The pain didn’t disappear, but the distractions helped. They reminded me to focus on what’s possible, when my body allows. It doesn’t mean I won’t process the hard stuff—it deserves attention—but in moderation.

I also want to thank you all. The pictures you’ve been sending—your travels, adventures, time with family—all of it uplifts me.

To my parents’ friends, it’s wonderful to see a cohort of individuals enjoying their retirement and doing things like traveling and spending precious time with children and grandchildren. What a blessing!

To my friends, I see you all navigating parenthood, relationships, singlehood, and adventures. I know middle age is an interesting stage, and not always the easiest. Thank you for your kind words that these emails are reminding you to focus on what matters to you. I love that you’re sharing what’s important to you with me.

Even if I don’t write back, please know you matter.

So yeah. I’m still here. Still fighting. Still writing.

Because this is what I’ve got right now.

Love,
Danielle