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Heather Maureen

@thatssoheather

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May 2023. Top section of Nissan Stadium for the Eras Tour. My niece and I had just spent a couple hours under cover for the rain delay. The show was starting three hours late, but it was starting. We. Were. Pumped.

And then I had to climb all those stairs to our seats. We were so far up. I could feel the sway. I pushed the anxiety down, settling my nerves with a reminder of how lucky I was to be sitting in this stadium for this rain show sharing this moment with my niece.

The show started, thousands of Swifties began screaming and dancing, and my brain caught on fire. I knew the stadium was going to collapse. I knew I’d die in the rubble. I knew I was going to have a medical emergency and they’d never get to me in time. I knew I’d fall down the stairs on the way back down. I was absolutely going to get hypothermia.

I had to sit down. If I did, we’d all be safe. I had to count my breaths in time with the music. I couldn’t sing. If I did, we’d die. We left early.

I didn’t know that what had happened was the fire in my brain was lit by a cycle of intrusive thoughts followed by a series of (mostly) mental compulsions meant to alleviate my distress. I didn’t know at the time that this was OCD. That context wouldn’t come until two years later.

With this week being OCD Awareness week, I’m going to share a little bit about what OCD is, what it looks like in my life, and how treatment has made my life so, so much bigger.

Because yeah, that scenario I described? #thatsocd by @thatssoheather

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4 days ago

September. Dino bones and Red Rocks and heart shaped rocks and magpies on branches and Gregory with the Colorado Symphony as storm clouds rolled in and a Gracie visit to see dad and a matching mug and vase that I made with my own two hands and chocolate chip pancakes the size of my head with the two best little guys and my niece and a hummingbird on my vines and tomatoes I grew and world narcolepsy day and a tiny tiny blue bird I painted on a rock.

And the heaviness of grief in the air while the world spins too quickly and it all happens too fast and it all feels too hard.

September is always what she is and I take her as she comes. I’m still standing. by @thatssoheather

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9 days ago

Hey mom, I know you know how absolutely stupid things have been around here since dad’s diagnosis last fall and that I’ve been a bit shaky catching my footing with all that. And I know it’s been 33 years now, but you not being here to help walk us all through it sucks.

I’m doing the best I can. I’m carrying you with me. Help me stay soft and give Gramma a hug for me. I love you. 💛 by @thatssoheather

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21 days ago

I’m not sure what you may be going through right now, but have you tried eating a sandwich in the creek about it? It may not fix anything really, but at least you’ll have a sandwich and be in a creek and those are both pretty nice things.

I guess really what I’m trying to say is, find whatever tiny fuckin’ nuggets of good you can find and hold on to those with all you’ve got. by @thatssoheather

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a month ago

This year at #BeyondSleepy, Matt Horsnell and Heather Lill gave a very insightful presentation on communication and intimacy. We appreciate community members sharing what they have learned so that we can seek out partnerships that will be supportive and loving.⁠
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If you like presentations like this one, join us at the Kimpton Palomar Hotel Phoenix on Saturday, October 10, 2026, from 9:30 - 4:00 p.m. MST for a #BeyondSleepy™ Satellite where we discuss emerging and important topics relevant to the sleep community. ⁠
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🔗 REGISTER - https://beyondsleepywebinar.funraise.org/ or click the link in our bio.⁠
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Registration for in-person attendance is $25 and $5 for each additional family member. With the generous support of our sponsors, virtual registration is free!⁠
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🚨ROOM BLOCK CLOSES SEPT 6TH⁠
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If you are attending in person and planning to stay at the Kimpton Palomar Hotel Phoenix, we have a special rate of $169*/night plus taxes. Reserve a room HERE - https://tinyurl.com/ybptru6u⁠
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*Please note that the $35 Guest Amenity Fee that is shown in the price will actually be waived, so the price will be $169, not $204 per night. ⁠
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⁠You can watch the full presentation now on our YouTube channel. ⁠
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🔗 - https://www.youtube.com/@HypersomniaFoundation/ or click the link in our bio⁠.⁠
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#intimacy #idiopathichypersomnia #narcolepsy #kls #hypersomnia #hypersomniafoundation by @thatssoheather

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a month ago

🎶late august angst🎶

A closet remodel. And thrown pots that are close to sisters! And Orexin! And heart shaped rocks that showed up when they were needed. And a silly goose birthday party for my 43rd. (How am I 43?) And tomatoes I grew! And puppy snugs and car rides. And a cabin sunrise! And hikes that show off my newly tattooed knees! And fossil finds! And potatoes I grew!

I’d love to say my birthday month was nothing but joy, but man, was it not. I wish I could say I didn’t feel weighed down by so much, but I can’t. What I can say is I’m trying. And I’m fighting through it. And holding onto the hope that one day, I won’t all feel quite so heavy.

It always ebbs and flows. And I’m not carrying it all alone. by @thatssoheather

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2 months ago

even anxious pups need the moon by @thatssoheather

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2 months ago

I don’t gush about my relationship on the internet. Heck, I typically feel like the sign of a healthy relationship is that you don’t feel the need to post about it. I’m going to make an exception for this one.

I met Matt at the end of 2020. I knew within the first conversation that I was going to marry him. I knew shortly after that that he had narcolepsy. And in the nearly six years we’ve been together, I’ve seen the ways that diagnosis has touched his life. I’ve watched the impact of symptoms on the person I love the most.

And while it would be so easy to focus on all the things narcolepsy has taken from him, I’ve also watched him turn that diagnosis into a purpose. Matt is an advocate through and through. Like that man will tell anyone, anytime about narcolepsy.

Yesterday, the FDA approved the first and only medication for narcolepsy type one that aims to treat the underlying cause. Yesterday, I got to call my best friend to tell him the treatment we’ve been waiting for with our fingers crossed is one step closer.

So today, we ate cake. by @thatssoheather

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2 months ago

July was kinda ass in a few ways, but you know what? July also gave me: Noah Kahan (worthy of a solo post), a teenager-no-more birthday for Rachel, bees and butterflies in the chaos flower garden, my first sunflower bloom, sea salt chocolate chip cookies, a few good hair and face days (despite the heat and humidity), purple martins, more of me facing those dental fears (maybe one day I won’t need oral sedation to go), homegrown tomatoes, and a sweet vase that I can’t wait to finish in a few weeks (don’t tell my Seester I’ve already decided it’s for her).

It was also me being a grumpy pants until I stopped trying to solve that (which was hard work). Trying new skills. A brunch and crafternoon sesh with some pals.
Rachel started taking pottery with me.
Caden started 8th grade.
I virtually attended the IOCDF conference and started exploring my experiences even deeper.

So, July was kinda ass and also kinda fucking awesome. It was a real “two things can be true” kinda month.

And now it’s August. And August? It’ll be. by @thatssoheather

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2 months ago

The Purple Martins, the largest species of swallow in North America, have begun their southern migration and are roosting in Nashville before they continue their flight further south.

Gramma loved her a Purple Martin. She was always so tickled when they’d make their way back to her nesting box in the spring.

Standing right there in the middle of the swarm of birds, my arms covered in goosebumps, it was like a wild, chaotic hug from her at a moment when I needed it the absolute most. by @thatssoheather

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3 months ago

Everyone waits until 5 pm on July 21st to give their June recap, right? Anyway, June brought us a little oral surgery nonsense, market flowers in a tiny doll planter, fresh blackberries, an Ellie potato tattoo, a scavenger hunt for BTS Oreos for the bestie, a return to the Beyond Sleepy speaker roster, my first ever time to sit on a panel at the SLEEP meeting, a CPAP Baddies event, so many catch ups with friends, trolling with Tony, my first fully solo speaking engagement speaking on mental health and sleep, a hangout with an NFL player at campference, and exposures galore (in addition to the public speaking ones).

My bestie turned 43. I got my “garden” started. I planted my sunflowers. I watched my friends present and there were so many hugs. I collected some awesome rocks. I saw some ospreys. I got a vintage fondue pot. I made mugs. I snuggled the dogs.

My assessments showed a huge reduction in OCD symptoms and I celebrated with a treatment conqueror cake. (And by sobbing through the letter my therapist wrote me.) by @thatssoheather

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3 months ago

I’ll leave the superfluous captions to your dad, but gosh damn it, @rachelh.1, I am so incredibly proud of all you have been, all you are, and all you’ll become and I still can’t believe I get to be along for the ride.

Happy 20th birthday! I love you so damn big. 💛 by @thatssoheather

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3 months ago