A Joyful Practice

Liminal & Rare Days (mostly the music) February 28, 2023

Many blessings to all, and especially to those observing Lent, Great Lent, Ayyám-i-Há, and/or Rare Disease Day during this “Season for Non-violence” and all other seasons!

“That’s the thing about a rare disease. You fight for a diagnosis for years ― on average, according to Global Genes, it takes seeing 7.3 physicians and trying for 4.8 years before getting an accurate rare disease diagnosis ― and then, even once you know, you must continue being a detective as you try to piece together the clues as to how the illness might progress. You become an expert in a disease you wish you’d never heard of.

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As a parent, you also quickly morph into a nurse, therapist, chief operating officer, educational advocate, cheerleader and warrior. You feel alone, because by definition, your child’s diagnosis is exceptional. And yet, 1 in 10 Americans and 300 million people globally are living with a rare disease.

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You find community not just in other people who share the specific diagnosis your family is facing, but in those struggling with any rare diagnosis. It doesn’t matter what the exact symptoms or disease trajectory are. What matters is the shared understanding that your dreams as a parent have forever shifted.”

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– quoted from the (February 28, 2022*) Huffington Post article entitled “My Daughter’s Rare Disease Was A Mystery For Years. Here’s How We Finally Got A Diagnosis.” by Jessica Fein

Please join me today (Tuesday, February 28^th) at 12:00 PM or 7:15 PM for a yoga practice on Zoom. You can use the link from the “Class Schedules” calendar if you run into any problems checking into the class. You can request an audio recording of this practice via a comment below or (for a slightly faster reply) you can email me at myra (at) ajoyfulpractice.com.

Tuesday’s playlist is available on YouTube and Spotify. [Look for “06142020 World Blood Donor Day”]

*NOTE: An article by Jessica Fein was also published by Huffington Post today, February 28, 2023. 

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In the spirit of generosity (“dana”), the Zoom classes, recordings, and blog posts are freely given and freely received. If you are able to support these teachings, please do so as your heart moves you. (NOTE: You can donate even if you are “attending” a practice that is not designated as a “Common Ground Meditation Center” practice, or you can purchase class(es). Donations are tax deductible; class purchases are not necessarily deductible.)

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