“Happy Riḍván!” to those celebrating “the Most Great Festival.” Many blessings to everyone, and especially to anyone observing Great Lent! Happy National Poetry Month!
This is the “missing” post with music links for Sunday, April 21st. My apologies for not posting before the practice. You can request an audio recording of this practice via a comment below or (for a slightly faster reply) you can email myra (at) ajoyfulpractice.com.
“The song title is taken from: ‘We, verily, have made music as a ladder for your souls, a means whereby they may be lifted up unto the realm on high; make it not, therefore, as wings to self and passion.’ – Baha’u’llah, Kitab-i-Aqdas”
— quoted from liner notes for the song “Ladder for the Soul” by Taraz Nosrat
Sunday’s playlist is available on YouTube and Spotify. [Look for “Ridvan 181 BE 2024”]
Music Notes: With a few obvious exceptions (at the beginning and end), this music is composed and performed by Bahá’i musicians and inspired by the Bahá’i Faith. One track in the before/after music is different on each platform. My intention was to include the track below during the practice music; however I could not find it on Spotify.
“We rejoice to see, in every country and region, true practitioners of peace occupied with building this haven. We see it in every account of a heart being enkindled with the love of God, a family opening up its home to new friends, collaborators drawing on Bahá’u’lláh’s teachings to address a social problem, a community strengthening a culture of mutual support, a neighbourhood or village learning to initiate and sustain the actions necessary for its own spiritual and material progress, a locality being blessed with the emergence of a new Spiritual Assembly.”
— quoted from the Riḍván 2022 message from the Universal House of Justice “To the Bahá’is of the World”
Many blessings to all and especially to those observing Chaitra Navaratri, Rama Navami, and/or Great Lent! Happy National Poetry Month!
“STAGE MANAGER…. How do such things begin?”
— quoted from Act II of Our Town by Thornton Wilder
Please join me today (Wednesday, April 17th) at 4:30 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 myra(at) ajoyfulpractice.com.
Wednesday’s playlist is available on YouTube and Spotify. [Look for “04212021 So Much Holy, II”]
“STAGE MANAGER….. – Now there are some things we all know but we don’t take’m out and look at’m very often. We all know that something is eternal. And it ain’t houses and it ain’t names, and it ain’t earth, and it ain’t even the stars . . . everybody knows in their bones that something is eternal, and that something has to do with human beings. All the greatest people ever lived have been telling us that for five thousand years and yet you’d be surprised how people are always letting go of that fact. There’s something way down deep that’s eternal about every human being.”
— quoted from Act III of Our Town by Thornton Wilder
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). Or, you can scroll back up and Kiss My Asana! Donations are tax deductible; class purchases are not necessarily deductible.)
“Ramadān Mubarak, Blessed Ramadān!” to anyone observing the holy month of Ramadān. (Keep your eyes open.) Many blessings to all, and especially to those observing Great Lent or Eastertide / the Octave of Easter!
This is the “missing” post for Saturday, April 6th. My apologies for not posting the music before the practice on Zoom. You can request an audio recording of a related practice via a comment below or (for a slightly faster reply) you can email me at myra (at) ajoyfulpractice.com.
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.
“The eternal source of love Was implanted In every part of existence The desire for another
Though night and day Outwardly appears enemies Yet both serve one purpose Each seeking the other”
— quoted from the poem “Whispers from a Spiritual Garden” by Yusuf Islam
At the end of the day, we all desire an end to our suffering. However, since our experiences and circumstances are different, we articulate our desires in different ways. We cry, we sing, we wish, we hope, we pray, we contemplate — and, at some point, we have to do… something.
What we do and how we do it is also based on our experiences and circumstances. Some people give peace (and people) a chance. Some people choose war — and a twisted concept of power that prevents them from recognizing a power so great it is referenced in every major religion and spiritual philosophy: Divine or Universal Love.
“Truth (Satya) implies love, and firmness (agraha) engenders and therefore serves as a synonym for force. I thus began to call the Indian Movement ‘Satyagraha’ , that is to say, the Force which is born of Truth and Love or non-violence, and gave up the use of the phrase ‘passive resistance’ in connection with it, so much so that even in English writing we often avoided it and used instead the word ‘Satyagraha’ itself or some other equivalent English phrase.”
— quoted from “12. THE ADVENT OF SATYAGRAHA” in Satyagraha in South Africa by M. K. Gandhi (as published in THE SELECTED WORKS OF MAHATMA GANDHI, VOLUME TWO, translated from the Gujarati by Valji Govindji Desai; General Editor Shriman Narayan)
In 1930, facing the suffering caused by unjust laws, Mohandas Karamchand Gandhi decided salt would be the focus of a direct action, non-violent mass protest. The protest movement became known as the Salt Satyagraha and today (April 6th) is the anniversary of Gandhi, in Dandi, breaking the law.
This also happens to be one of the final days of Ramadān — and the beginning of the month when the Saturday classes will be heart(chakra)-focused.*
Click on the links below for more information and insight.
Saturday’s playlist is available on YouTube and Spotify. [Look for “04062024 Satyagraha & Ramadan”]
Some quick notes about the music: First, my playlists for the final days of Ramadān are not halal (“permissible”) in all Islamic traditions, because of the orchestrations. They do, however, feature musicians who are Muslim (with a few exceptions).
Reba McEntire is one of the notable exceptions — notable, because in previous years she was the only female soloist and the only non-Muslim singer on the playlists. While this year’s playlists include several Muslim women as musicians and composers, “Pray for Peace” is still highlighted because it was re-released during the month of Ramadān in 2014 — but not just randomly in the month, the song was released in the last ten days of the month (during the holiest part of the month)!
Some songs on the playlist are Nasheeds (meaning they are religiously moral songs) that, in some traditions, are meant to be sung without instrumentation or only with percussion. I have, however, included orchestrated versions of these songs, because this seems to have worked best in an in-studio setting. I mean no disrespect by this choice. As far as I know, percussion or voice only recordings of the Nasheeds are available (if you want to build your own playlist). Alternatively, you can practice without the music — which is always a suitable option.
Finally, the YouTube version currently includes some additional before/after music.
*HOLIDAY NOTE: I did not reference the biblical stories related to the Octave of Easter or Great Lent.
###
DID YOU KNOW, IT’S ALMOST TIME TO
KISS MY ASANA?
(April 13th – 19th)
###
“Ramadān Mubarak, Blessed Ramadān!” to anyone observing the holy month of Ramadān. (Keep your eyes open.) Many blessings to all, and especially to those observing Great Lent or Eastertide / the Octave of Easter!
This is the post-practice post for tonight’s “First Friday Night Special.” You can request an audio recording of tonight’s Yin Yoga practice via a comment below or (for a slightly faster reply) you can email me at myra (at) ajoyfulpractice.com.
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.
“The body is like a pot with the lid on lift the lid to see if it is filled with the Water of Life or the poison of death. Focus on the contents and you will become a master focus on the pot and you will be misguided. Your eyes only see the body while the spiritual eye perceives the soul.”
— quoted from the poem by Rumi as published in Rumi’s Little Book of Life: The Garden of the Soul, the Heart, and the Spirit, translated by Maryam Mafi and Azima Melita Kolin (with an introduction by Narguess Farzad)
This First Friday Night Special fell on a night that could be, might be (and to many probably is), one of the holiest nights of Ramadān: Laylat al-Qadr. Since April is Poetry Month, there was poetry as well as an explanation about this sacred time. While I ultimately did not include references to scripture related to the the Octave of Easter, there was a bit of context about why we were focusing on these observations — and, really, a little context about why we focus on more than the body (as well as why that often includes things outside of the Yoga Philosophy lineage). This post is just a little expansion of the explanatory comma (with an excerpt related to Laylat al-Qadr).
As often happens at least once year, someone said they weren’t sure where I was going with my narrative. In this particular case (on Monday), the confusion was understandable and (to be honest) a little intentional. Later in the week, a very wise and dear friend asked me why I teach the things I teach. In some ways, these are the same question: What’s the proverbial (or metaphorical) destination? What’s the point?
I actually ask myself these questions all the and I normally have pretty standard answers. These standard answers can be delivered via any number of stories from any number of cultures, authors, songs, historical events, and/or my own history. For instance, since I grew up around so many cultures and religious traditions, I like “…looking at the same mountains from different angles.” (to quote Paulo Coelho) and value the richness and wisdom that can be found in so many manifestations of humanity. However, as we see in many of the Eastern philosophies and traditional sciences, everything has a flipside.
Just as some people have riches, some people have next to nothing. Just as some people are grateful for everything, some people are never satisfied. Just as some people take without thinking, some people give without thought. Just as some people have the time and the space to sit and meditate in quiet, some people are in the middle of (external and/or internal) battles. Just as some people express love and kindness, some people express anger and frustration. There is joy and peace, just as there is anxiety and worry. There is fear and there is wisdom.
Sometimes I find that dichotomy exhausting. In fact, I recently admitted to some friends that I’ve been feeling a little world-weary. That weariness has made it hard to put in the work to do certain things… to teach certain things — even to blog about certain things.
I know I am not alone in this…. I also know some ways to overcome this. That is one of the reasons I do what I do. Because, whatever we do (or don’t do) and how ever we do it (or don’t do it), makes an impact and leaves an impression.
“Use your time wisely. Spend it only in pursuit of things that are good. Hold the world in your hand if you so desire, but never let the world use your heart as its abode. Your understanding of the world around you will be based off of how you take care of the world within you. Treat your heart as something precious and let only what is good for [it] have the privilege of receiving its love.”
— quoted from a 2013 “Ramadān Reflection” for Huffington Post by Imam Khalid Latif
Our thoughts, words, and deeds make an impact on our own self, on the world, and on those around us. That’s what Dame Jane Goodall was saying on Wednesday… and that’s one of the lessons of the Yoga Philosophy: Everything we do is planting a seed — and also, nourishing, harvesting, and/or uprooting what has been planted.
We see it in all the major religions and philosophies and in various sacred texts and scriptures. Throughout the Yoga Sūtras, Patanjali outlined how we can be more conscious about the seeds we are planting and the seeds we need to uproot. In the Book of Proverbs — Mishlei, before King Solomon emphasized the importance of wisdom, knowledge, understanding, discernment, and patience as being connected to “righteousness, justice, and equity, every good path” (P — M 2:9), he talked about the different ways “[one] who sows injustice will reap violence” (P — M 22:8). Of course, the latter sentiment is echoed in Saint Paul’s Epistle to the Galatians (6:7), where it is applied to whatever/everything. While it is spelled out in different ways by different authors, the message is the same.
We are creating the world in which we live and we are creating the path we will ultimately walk.
“Once a believer asked the angel of the Gate, ‘Is it true that hell is the road through which both believers and unbelievers pass? For on my way here I saw neither smoke nor fire.’ ‘The road you passed was hell indeed,’ the angel smiled. ‘but since you have overcome your lower nature to you it appears as a garden. Having planted the seeds of devotion, you transformed the fire of anger into compassion and ignorance into wisdom. The thorns of envy have turned into roses so now your fiery soul has become a rose garden where nightingales sing praises.’”
— quoted from the poem by Rumi as published in Rumi’s Little Book of Life: The Garden of the Soul, the Heart, and the Spirit, translated by Maryam Mafi and Azima Melita Kolin (with an introduction by Narguess Farzad)
The following excerpt is from a 2022 “renewed” post:
“Laylat al-Qadr, translated as ‘Night of Power,’ ‘Night of Destiny,’ ‘Night of Value,’ ‘Night of Measure,’ ‘Night of Decree’ or ‘Night of Honour,’ commemorates the anniversary of the Qur’ān being reveled to the angel Gabriel in a verse-by-verse recitation, which Gabriel then recited to the Prophet Muhammad (peace and blessings of Allah be upon him) over the last 23 years of his (the Prophet’s) life. It is also considered the night when a certain evil spirit can do no harm/evil, when past transgressions are forgiven, and when Allah decides everyone’s destiny. (Notice the similarity to the High Holidays in Judaism?) It is a night so powerful that people will stay up all night praying because it is believed their prayers are more powerful on this most holy night.
The April First Friday Night Special features a Yin Yoga Yoga practice (partially inspired by Sarah Powers and Yin Yoga with Matt). It is accessible and open to all.
Prop wise, this is a kitchen sink practice. You can practice without props or you can use “studio” and/or “householder” props. Example of “Studio” props: 1 – 2 blankets, 2 – 3 blocks, a bolster, a strap, and an eye pillow. Example of “Householder” props: 1 – 2 blankets or bath towels, 2 – 3 books (similar in size), 2 standard pillows (or 1 body pillow), a belt/tie/sash, and a face towel.
You may want extra layers (as your body may cool down during this practice).
Friday’s playlist is available on YouTube and Spotify. [Look for “Ramadan 2024: Planting & Transforming”]
Some quick notes about the music: First, my playlists for the final days of Ramadān are not halal (“permissible”) in all Islamic traditions, because of the orchestrations. The do, however, feature musicians who are Muslim (with a few exceptions). This First Friday Night Special playlist is all instrumental (during the practice); includes women as musicians and composers; and the YouTube version currently includes some additional before/after music. Please note that all practices can be done without music and, in fact, some people prefer practicing yoga without music.
One of the notable exceptions — notable, because on the other Ramadān playlists she is the only female soloist and the only non-Muslim singer — is Reba McEntire. While this playlist is a little different, her song “Pray for Peace” is on the playlists because she re-released it during the month of Ramadān in 2014 — but not just randomly in the month, the song was released in the last ten days of the month!
Additionally, there are some songs on the playlist that are Nasheeds (meaning they are religiously moral songs) that, in some traditions, are meant to be sung without instrumentation or only with percussion. I have, however, included orchestrated versions of these songs, because this seems to have worked best in an in-studio setting. I mean no disrespect by this choice. As far as I know, percussion or voice only recordings of the Nasheeds are available (if you want to build your own playlist). Alternatively, you can practice without the music.
Finally, one of the songs is on the playlist three (3) times and was inspired by “the stories in In Baghdad Dreaming Of Cairo: In Cairo, Dreaming Of Baghdad by Rumi and by The Alchemist by Paulo Coelho.” The song is moving in English (and as an instrumental, which is how it shows up during the practice), but it is next level in Arabic. Let’s go. Better yet, let’s make the whole world feel like home.
### ARE YOU READY TO KISS MY ASANA?
(April 13th – 19th) ###
“Ramadān Mubarak, Blessed Ramadān!” to anyone observing the holy month of Ramadān. (Keep your eyes open.) Many blessings to all, and especially to those observing Great Lent or Eastertide / the Octave of Easter, today and throughout this “Season for Nonviolence” and during all other seasons!
“You know, I think the most important thing is for people to understand that every day we live on this planet we make some impact. And we can choose. So we should ask questions: This thing we are buying, did it harm the environment when it was made? Was it cruel to animals; like factory farmed meat, eggs, milk? Is it cheap because of unfair wages or slave labor?
If everybody asks those questions, and it might cost a little bit more to buy ethically produced products, but then you value it more and we waste less.”
— Dame Jane Goodall, quoted from a Today interview on her 90th birthday
Here’s a little excerpt from my 2019 post on this date:
“Upon hearing that the short story author Washington Irving was born April 3, 1783, some might suppose that today’s peak pose will be Savasana. Such an assumption, however, would mean that ‘some’ are making the same error as Rip Van Winkle.” [Note: Jane Goodall is also celebrating a birthday today. She was born in 1934.]
Please join me today (Wednesday, April 3rd) at 4:30 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 myra(at) ajoyfulpractice.com.
Wednesday’s playlist is available on YouTube and Spotify. [Look for “04032024 Transcendence, remix”]
Some quick notes about the music: First, I remixed this playlist because we are approaching final days of Ramadān, when I usually use music featuring musicians who are Muslim (with a few exceptions). This is not the same as those playlists, but those are coming.
Second, there are some songs on the playlist that are Nasheeds (meaning they are religiously moral songs) that, in some traditions, are meant to be sung without instrumentation or only with percussion. I have, however, included orchestrated versions of these songs, because this seems to have worked best in an in-studio setting. I mean no disrespect by this choice. As far as I know, percussion or voice only recordings of the Nasheeds are available (if you want to build your own playlist). Alternatively, you can practice without the music.
One of the notable exceptions — notable, because she is the only female soloist and the only non-Muslim singer on my Ramadān playlists — is Reba McEntire. While this playlist is a little different, her song “Pray for Peace” is on the playlist because she re-released it during the month of Ramadān in 2014 — but not just randomly in the month, the song was released in the last ten days of the month!
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.)
“Ramadān Mubarak, Blessed Ramadān!” to anyone observing the holy month of Ramadān. (Keep your eyes open!) Many blessings and compassion to all, and especially to those observing Lent and/or the 19-Day Fast throughout this “Season for Nonviolence” and all other seasons!
“Every single person has at least one secret that would break your heart. If we could just remember this, I think there would be a lot more compassion and tolerance in the world.”
— an anonymous person Mississippi, quoted in The Secret Lives of Men and Women: A PostSecret Book by Frank Warren
Please join me today (Saturday, March 16th) at 12:00 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 myra(at) ajoyfulpractice.com.
Saturday’s playlist is available on YouTube and Spotify. [Look for “08312021 Emerson Thinking”]
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.)
Many blessings to all, and especially to those observing Lent and/or the 19-Day Fast during the “Season for Nonviolence” and all other seasons!
“Much of one’s spiritual discipline must therefore focus on taming wayward senses and being ever vigilant against the treacherousness of the senses. The refinement of an individual or a society is measured by the yardstick of how well greed and desires are controlled.
The Illumined Ones subdue their senses and hold them in check by keeping their minds ever intent on achieving the overarching goal of union with God. They get in the habit of substituting divine thoughts for attractions of the senses.”
— Krishna speaking to Arjuna (2.60 – 61) in The Bhagavad Gita: A Walkthrough for Westerners by Jack Hawley
Please join me today (Wednesday, March 6th) at 4:30 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 myra(at) ajoyfulpractice.com.
Wednesday’s playlist is available on YouTube and Spotify. [Look for “09132020 What Is Inside, II”]
“But when you can move about in a world that surrounds you with sense attractions, and yet be free of either attachment or aversion to them, tranquility comes and sits in your heart — and you are absorbed in the peace and wisdom of the Self within. Serenity, Arjuna, is the point at which all sorrow ends!”
— Krishna speaking to Arjuna (2.64 – 65) in The Bhagavad Gita: A Walkthrough for Westerners by Jack Hawley
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.)
Many blessings to all, and especially to those observing Lent and/or the 19-Day Fast during the “Season for Nonviolence” and all other seasons!
“When people pull back from worldly pleasures their knowledge of the Divine grows, and this knowing causes the yearning for pleasure to gradually fade away. But inside, they may still hanker for pleasures. Even those minds that know the path can be dragged away from it by unruly senses.
Much of one’s spiritual discipline must therefore focus on taming wayward senses and being ever vigilant against the treacherousness of the senses. The refinement of an individual or a society is measured by the yardstick of how well greed and desires are controlled.”
— Krishna speaking to Arjuna (2.59 – 60) in The Bhagavad Gita: A Walkthrough for Westerners by Jack Hawley
Please join me today (Tuesday, March 5th) 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 by emailing myra (at) ajoyfulpractice.com.
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.)
Happy Read Across America Day! Many blessings to all, and especially to those observing Lent and/or the 19-Day Fast, during this “Season for Nonviolence” and all other seasons!
“Be mature and honorable in the relationship you have with yourself and accept responsibility for the person you have become.”
— quoted from “Morning Visual Meditation” (Chakra 3) by Caroline Myss
Please join me today (Saturday, March 2nd) at 12:00 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 myra(at) ajoyfulpractice.com.
Saturday playlist is available on YouTube and Spotify. [Look for “03022021 Ready, Set….”]
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.)
### Acknowledge the elephant in the room (and the cat in the hat). ###
Many blessings to all,and especially to those observing Lent, Ayyám-i-Há,and/or Rare Disease Dayduring this “Season for Nonviolence” and all other seasons!
This is theabridged version ofa 2023 postrelated to February 29th(which was original posted with information from yesterday’s post). Some context and links (including a video) have been added/updated. There’s no practice today; however, you can request an audio recording of a previous practice via a comment below or (for a slightly faster reply) you can email me at myra (at) ajoyfulpractice.com.
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.)
“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.
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.
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.”
— 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
In addition to being (what I would consider) a “liminal day,” February 28th can also be a “rare” day. Typically, when we think of a “rare” day on the Gregorian and Julian calendars, we think of February 29th, Leap Day, which is rare because it only happens every four years.** Leap day is the perfect day for Rare Disease Day, which is observed on February 28th during non-leap years like 2023. Observations on this alternate date, coincide with the anniversary of the United States House of Representatives passing the Orphan Drug Act of 1983 on February 28, 1982. The act went into effect on January 4, 1983, and it facilitated the development of “orphan drugs” (i.e., drugs for rare diseases and disorders). Japan and the European Union enacted similar acts in 1993 and 2000, respectively. Prior to the act being passed in the U. S., less than 40 drugs had been approved as treatments for rare diseases and disorders (in the whole history of the United States). In the three decades after the act went into affect, almost ten times as many drugs had been approved.
Why the difference? Why did it take an act of Congress?
Unfortunately for those who face life-threatening and life-changing diseases, research is primarily driven by pharmaceutical companies, which are mostly driven by profits — and there’s just not a lot of profit in rare diseases.
“That referral led us to the geneticist, who ended up delivering the information that changed our lives.
‘Dalia tested positive for a genetic mutation that’s associated with myoclonic epilepsy with ragged red fibers, or MERRF syndrome ― an extremely rare form of mitochondrial disease,’ the doctor said.”
— 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
Approximately 300 million people are living with a rare disease. That doesn’t sound very rare when you add in their family, friends, and caregivers. But, here’s the thing: those 300 million people are not living with the same disease. They are not even living with the same two or three diseases. In the medical community, a “rare disease” is typically defined as a disease that affects fewer than 1 in 2,000 people. That means it can affect one or two people, or several hundred around the world. In the United States, Huntington’s disease; myoclonus; Amyotrophic lateral sclerosis (ALS) – also known as motor neuron disease (MND); Tourette syndrome; muscular dystrophy; Postural Orthostatic Tachycardia Syndrome (POTS); Prader-Willi syndrome; and Usher syndrome are all considered rare diseases or rare disorders. Sickle cell anemia is also considered a rare disease; even though it affects approximately 100,000 people in the United States. Autosomal systemic lupus erythematosus, which is characterized by the presence of (the more common) systemic lupus erythematosus symptoms in two or more members of a single family, is also considered a rare disease.
Approximately 72 — 80% of rare diseases are known to be genetic. About 70% begin in childhood. Tragically, thirty percent of children diagnosis with a rare disease will not reach age 5. While some people have diseases that are degenerative, some people “outgrow” their disease. Another challenge, for people suffering from rare diseases and disorders, is that sometimes people can be suffering with “invisible” ailments — meaning that others perceive them as healthy. All of these differences in symptoms and situations makes it really hard to receive diagnosis and treatment — especially since healthcare practitioners (particularly here in the West) are taught to “lookfor horses, notzebras.” Unfortunately, rare diseases are really colorful zebras. They require patients and their family and friends to take on all the roles normally distributed between professionals.
Recently, another couple of layers have been added to the already complicated story of rare diseases. For a variety of really disturbing reasons — that I want to believe come from a lack of awareness and knowledge — people have started co-opting orphan drugs and using them for non-life threatening issues. In some cases, they are being used for purely cosmetic purposes without any regard for the people whose lives actually depend on the medication. (NOTE: This is also happening with treatments for “common diseases,” with equally devastating effects; however, those common diseases get more publicity, because they make up a larger share of the market.) On the flip side, COVID seems to have created a situation where some rare diseases are becoming more common — which means, as twisted as sounds, that some people are feeling more hopefully, because more research and development is being done with regard to their ailment.
Again, it all comes down to awareness, education, perspective, compassion, and empathy. Which is the whole point of Rare Disease Day.
Established in 2008, by the European Organization for Rare Diseases, Rare Disease Day is a day dedicated to “raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and [caregivers].” The 2023 theme “ShareYourColours” is an invitation to share your story. Whether you have a rare disease or whether you love and/or care for someone with a rare disease, sharing your story can be a way to raise awareness, stop the ignorance, and end stigma.
If you are not dealing with a rare disease, be open to hearing other people’s stories. As rare as they are, I have known someone dealing with almost all of the rare diseases and disorders that I used as examples (above). Or, I should say, I’ve known that I knew them, because they shared their stories. Listening, as Bruce Kramer pointed out, opens us “… a little bit more.”
“To be open is to embrace your own great big messy humanity, to cry in sadness but not despair, to recognize presence in the emptiness of the bitter moment of truth, to be afraid but not fearful. Dis ease presents the choice of being open or closed, and opening to her lessons, her gifts, her challenges, is not easy. But dis ease clarifies vision, bringing sight to the blindness of what you thought you knew about living, light to the darkness of cynicism that life’s grief piled upon itself can foster. I know ALS is a horror, yet when fully embraced, it has taught me, it has revealed to me pure unsullied, uncontaminated, unbelievable love.
In my heart of hearts, I know that love never dies.”
— quoted from “25. Faith, Part IV: What’s Love Got To Do with It?” in We Know How This Ends: Living while Dying by Bruce H. Kramer with Cathy Wurzer
The 2023 playlist is available on YouTube and Spotify. [Look for “06142020 World Blood Donor Day”]
NOTE: Not all rare diseases are blood-based, but the playlist contains a blood-borne subliminal message.
*NOTE: A follow-up article by Jessica Fein was also published by Huffington Post [on] February 28, 2023.
**NOTE:According to the Julian calendar, Leap Year is every four years.On the Gregorian calendar, which is used by most people who will come across this post, it’s not that simple.
“A year is a leap year if it is divisible by 4 and is not a century year (multiple of 100) or if it is divisible by 400. For example, 1900 is not a leap year; 2000 is.”
— quoted from “2 — The Gregorian Calendar, 2.1: Structure” in Calendrical Calculations by Nachum Dershowitz, Edward Reingold
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A Joyful Practice 