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tayler

@distaaybled

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disability advocate♿️patient scientist🔬
chronically ill + disabled and making the most of it💘
opinions are my own and do not reflect my employer

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You’re invited to our hEDS Webinar: Research & Community Day! 🦓🦓🦓

Join Dr. Norris and the Norris Lab team for a free virtual webinar for the hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) community!

We’ll share what we’ve learned, where our research stands today, our newest discoveries, and where we believe the field is headed next. Additionally, this webinar is to answer YOUR QUESTIONS! Submit your questions at registration or via the virtual question board on our website for our team to answer! This is our chance to give back to the community that makes this work possible, and we’d love for you to be there.

Thursday, November 5, 2026
• 1:00 to 3:00 PM EST
• Microsoft Teams

Registration is free and open now. Scan the QR code on the flyer or tap the link in our bio to save your spot. 💙

Please share this with anyone in your life who lives with hEDS or HSD, or who cares for someone who does.

#hypermobileehlersdanlossyndrome #heds #hypermobilityspectrumdisorder #research #stem

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The Norris Lab is holding a hypermobile Ehlers-Danlos syndrome research webinar on November 5th from 1-3 PM to discuss new research findings, ongoing projects, clinical collaborations, the patient-scientist model, & advocacy initiatives 💛 Please submit any questions you want Dr. Norris to answer to our virtual question board at www.thenorrislab.com at the bottom of the home page. Stay tuned for registration details. Will we see you there?

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Hey South Carolina! 👋 The Bobby Jones EDS, Chiari, and Syringomyelia Walk is coming to Charleston.

📍 MUSC Greenway
📅 Saturday, October 17, 2026
⏰ Festivities start at 3:30pm, walk begins at 5:30pm

So who was Bobby Jones? He was the most successful amateur golfer of all time, and he lived with syringomyelia, a rare neurological condition in which a fluid filled cyst forms inside the spinal cord. Over time it took his ability to walk. Reflecting on golf and life, he said: “You have to play the ball as it lies.”

The Chiari & Syringomyelia Foundation was founded in 2007 and took on the Bobby Jones name in 2019 in partnership with his family. Today, Bobby Jones CSF carries his legacy forward by funding research and education on Chiari malformation, syringomyelia, and related conditions like Ehlers-Danlos syndrome, POTS, and MCAS.

Come walk with us, enter the raffle, grab a snack, and connect with a community that gets it. Stop by The Norris Lab booth for research updates, educational resources, and goodies! 🦓

Swipe to learn more, and tag someone who should join you.

Registration: https://fundraise.givesmart.com/vf/26charlestonsc

#BobbyJonesCSF #EhlersDanlosSyndrome #hEDS #ChiariMalformation #Syringomyelia

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HAPPY WORLD OSTOMY DAY 🌎🫶

Change your ostomy bag with us!! Wherever you are today in your ostomy journey we hope you at least know that you are not alone. Getting an ostomy is scary, overwhelming, and can feel incredibly isolating (especially at the beginning). But there is a beautiful and vibrant ostomy community here ready to welcome you with open arms.

#worldostomyday #ostomy #stoma #ileostomy #ostomyawareness

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Happy world ostomy day to every ostomate! Ostomies are not gross, not something to hide or be ashamed of, and save lives! Shoutout to the ostomates that are changing the narrative about ostomies and showing life is not only worth living, but we’re given life back because of our ostomies🤎

VD: Tayler, a young white woman with medium length brown hair, wearing all white with a fun pink frilly ostomy bag cover walking in slowmo towards the camera and the text reads, “happy world ostomy day to all of the ostomates daring to change the narrative.”

#worldostomyday #ostomy #ostomyawareness #ostomybag

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Happy World Ostomy Day both to, and from ostomates far and wide! 🌎 Today and everyday, let’s be proud of ourselves! 🫂 Today and everyday, we choose our ostomies because we choose ourselves! And let us never forget, that to show such resilience, boldness, and vulnerability as we often do, IT TAKES GUTS ❤️ #worldostomyday #ostomyawarenessday #ostomyawareness #stoma #ostomy

Thank you SO much to the featured instagram/tik tok mutuals for helping me put this together! You can find their pages below, go check them out!🔥:

@Avgdiabetic
@big_boi_fly
@wildflouwir
@ucancallmeveeig
@uc.embey
@theemichaelashley
@ashzertuche
@distaaybled
@Kimberlymhooks
@Dee_theseensociety
@patricia.norzeron
@leledag0att
@rxchelsofia
@chronicallymars

Sweatshirt from: @tayisloved/ @graceapparel 💞

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https://onsoftterrain.substack.com/p/tayler-goectau?r=8hksqd&utm_medium=ios

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https://onsoftterrain.substack.com/p/tayler-goectau?r=8hksqd&utm_medium=ios

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https://onsoftterrain.substack.com/p/tayler-goectau?r=8hksqd&utm_medium=ios

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My second post about the Fourth Wing series by @rebeccayarros but my first since getting my hEDS diagnosis! Rereading it ahead of Threshing Day has made me love the series even more than before (if that was even possible) because I relate to Violet even more!

Inspired to do another post by @distaaybled talking about Fourth Wing!

#fourthwing #xadenriorson #bookstagram #books #romantasy

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It’s suicide prevention month ❤️‍🩹

If you are struggling and need help there are resources available:
-Crisis text line: text HOME to 741741 to connect with a trained crisis counselor
-National Alliance on Mental Illness: call 1-800-950-6264 or visit their website for more resources
-National Suicide Prevention Lifeline (US): call or text 988 for 24/7 support
-Visit Psychology Today to look for a therapist that fits your specific needs (including ones who specialize in chronic illness and/or disability

#suicidepreventionmonth #mentalhealth #chronicillness #disability #suicireprevention

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