00:00:00:01 - 00:00:28:18
Maegan
For a while, I felt like I was trying to stick, like, the round peg in the square hole. I was trying really hard to push my body to do things that it didn’t feel comfortable doing. I was working a 9-to-5 job as an archivist. And I was going in, and I actually ran out of sick leave because I was having these repeated times of having to go to the emergency room and go to doctors,

00:00:28:18 - 00:00:55:21
Maegan
and I couldn’t continue working. My usual day with PNH is I wake up and sometimes it’s later, sometimes it’s earlier, but my body will let me keep sleeping if I’m not woken up. I can sleep all day If I had to. I wake up and I eat, and then I go back to bed. But other days when I’m feeling good, which I really try to take advantage of, because they are few and far between,

00:00:56:06 - 00:01:27:03
Maegan
I like to play bass and paint and fill my day with things that make me value my brain, and my body, and my creative self. It makes a huge difference as a disabled person to have an outlet. I try to honor rituals that make me feel grounded in my body. I would sit outside on my porch and paint every single day, and it’s really saved my life.

00:01:27:03 - 00:02:03:24
Maegan
So I’ve definitely gotten used to being in emergency rooms with PNH. I have this ritual where every time I go to the emergency room, I’ll start immediately getting on my phone and finding the cutest Garfield that I can find. And it just is a special way of me modifying an otherwise really stressful situation, and I think a lot of being disabled is doing that, that push and pull between, yes, this is hard, but I’m also taking care of myself. And it’s beautiful that I get to do that, and I get to have that relationship with my body — and with Garfield.

00:02:04:13 - 00:02:10:16
Maegan
My name is Megan Voss, and I am a member of myPNHteam.