Brain Surgeries and Breakthroughs: My Interview with Jen Riday (Part Two—Rock Bottom)

 
 

Read Part One. Get the podcast episode.

I've thought a lot about what Jen and I discussed in the podcast interview. We covered a lot of ground in 30 or so minutes, but there was so much we didn't have time to dig into. So here's a bit more on some of the topics we covered:

On mantras

I used to think mantras were super lame, but now I have a few of them rotating on my computer screen pretty much all the time (lesson: they might still lame, and I LOVE them). They're great reminders and great motivators. In the interview I talk about a couple:

  • Create before you consume: Consumption isn't just spending—it's consuming information, entertainment, and social media. I tend to get sucked in to responding to email or reading something online if that's how I choose to start my day. Instead, I've decided to start with morning pages and quiet time, and I try not to look at my email until I've accomplished my most important task of the day. I deliberately choose to reflect and to create before I consume.

  • What's the easy way? I joked with some friends last fall that if there's a harder way to do something, I will find it. And I was once told that I have a tremendous capacity for suffering, which at the time I took as a compliment. A COMPLIMENT. WTF? So I made a deal with myself in January that this year I was going to do things the easy way, for once. I'm still learning—it takes practice.

On morning pages

I've been doing morning pages for a while now. I'm not great at sitting still to meditate, and so I've tried to find other ways to get in touch with what's going on inside. It only takes me fifteen minutes. If I can get out of my own way and tell the truth without judgment, I know I'm going to have a good day.

How do I do it? First thing in the morning. Three pages, handwritten. No stopping. No judging. Just writing whatever it is that comes into my head and seeing where it takes me. It usually takes a page and a half to get past the warm-up and into the juicy stuff. Sometimes it's exhilarating, sometimes it's excruciating. But it's always revelatory.

On what it takes to be happy

I realize this may sound trite, but if these three things are not buzzing for me then I feel pretty useless as a human:

  1. Good sleep

  2. Good food (mostly green things)

  3. Good exercise

If those three things are in place, I feel like I can do pretty much anything (and you know how much I manage to get done in a day—this is how). Sleep, food, and exercise are baseline for me. There are loads of other things that make me happy (for example: dinner parties, camping trips, heart-to-heart talks), but the truth is that I like myself—and other people—a whole lot better when the trifecta is in place.

On my rock bottom moment

My lowest moment happened on what was supposed to be the celebration of my 27th birthday. (If you're listening to the podcast, that part starts at the 4:40 mark - we don't waste any time getting to the ugly stuff)

It had very little to do with my birthday and everything to do with my inability to ask for support. I'd just had brain surgery #3, I'd been freshly dumped and my boyfriend had moved out, and my Masters degree was on hold. I was scared, seriously depressed, and lonely. But I pretended everything was fine. I don't think I realized how bad it was until that night—the night that not a single person showed up to celebrate. They didn't show up because I pretended that it was no big deal.

It was the moment I realized that I would need to change the way I interacted with people if I was ever going to feel truly supported. And I cannot overstate how terrified I was that people would disappear if I started telling them that I was scared and depressed. In other words: if I told them the truth.

Feeling unsupported had absolutely nothing to do with the people in my life. I've always had amazing people around me (I've said it before: I have great taste). But somewhere along the way I internalized the message that I couldn't let people see me as anything but perfect—even though it was plain to everyone else that I wasn't. Still, I kept up the front for as long as I could. Until I realized it wasn't serving me any more. It was making things worse.

That night was the beginning of a whole new approach to friendship, vulnerability, and openness. It was really hard for me. But it's the best thing I've ever done. EVER.

It taught me how to be a real friend: how to open up and how to listen. If I never do another good thing for the rest of my life, I will die happy knowing that I learned how to create deep relationships with people who matter to me.

On the elephant in the room

My life doesn't look much like the lives of many women my age. And not just because I have a rare disease. This is not entirely my choice, but a lot of it is. I'll get to that in a minute.

I'm thirty-five years old. I'm single. I'm childless. I live alone in a small apartment. I have a lot of close friends, but I like to spend a lot of time by myself. Still, sometimes it gets lonely. And when life gets really busy, or when I have a health scare, it's tough to manage on my own.

When I talked about my lifestyle on the podcast I realized I felt ashamed. My life feels tremendously meaningful to me, and it's important for me to serve others and leave something of value behind, but when push comes to shove I'm responsible only to myself. And that feels frivolous. Even a little juvenile.

But my life looks the way it looks because, in large part, I designed it that way. When you've come as close to death as I have, and when you live with an unpredictable illness, you learn to think hard about what matters to you.

And it turns out that what matters to me the most isn't at all what I expected. I've found my own ways to create meaning—by choice and by necessity. Still, there are some important things that I didn't get to choose. So I'm quite deliberate about the things I do get to choose.

I have no idea what's going to happen. Which means that, nine years later, I'm still prioritizing short-term happiness. I'm not ignoring the possibility that the worst is behind me, and I'm cautiously optimistic that things will go well for me for a long time. But I have some pretty glaring evidence that a Shit-pocalypse can happen with very little warning.

I'm pretty clear on what brings me joy right now, and that's still what I tend to focus on. Because you just never know. And I want to make the most of what I've got.

Illness or no illness, that's a pretty nice way to live. Even if it ends up looking a bit frivolous.


Tomorrow: Part 3—final thoughts, and the most important thing my illness has taught me. Read Part 3 now.

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Brain Surgeries and Breakthroughs: My Interview with Jen Riday (Part Three—The Most Important Thing)

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Brain Surgeries and Breakthroughs: My Interview with Jen Riday (Part One—The Preamble)