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Thread: Zen Practice with Physical Illness or Disability

  1. #101
    Quote Originally Posted by Kokuu View Post
    Hi Angel What is your first language?
    My apologies; I could have been more clear. Though I know that I am not the only one to use the phrase 'first language' in regards to the way that I process language rather than the language itself, it clearly is not something that has reached the social consciousness. I did not know that when I wrote it. I have often used the example, to good effect with both neurotypicals and neurodiverse folks, that the world is made up of PC's - and I am a Mac. I work perfectly fine, right up until I try to run 'Word for Windows' on my system - then it crashes.

    Quote Originally Posted by Kokuu View Post
    In our school of Soto Zen, our primary teaching is that of 'just sitting' (Shikantaza), which goes beyond words and language. It is my hope that this practice is universally appropriate.
    It is unlikely to be coincidence that I gravitated to the simplicity of Zen over other branches. Still, part of my practice consists of a morning meditation followed by a short reading by the local Zen master. Favorite's of hers include some names that have appeared elsewhere in this thread - Darlene Cohen, Robert Aitken, etc. Sitting is vital, but this fruit is often out of my reach. Perhaps you, or someone else here, has had the opportunity to enter into a dharma dialogue with a teacher. I understand that many folks find value in this exchange, gaining clarity - whereas for me, I am being fed a word salad. A teacher might point to the moon differently if s/he pointing for a blind person.

    Meian: I appreciate your kind offer, I'm sure I'll be in touch at some point.

    I am humbled by the responses and the links. I have not yet had the opportunity to follow them but expect I shall, later today. Thank you to Kokuu, Hokan, and Meian.

    sat
    Last edited by Angel; 11-09-2021 at 02:39 PM.

  2. #102

    Zen Practice with Physical Illness or Disability

    Quote Originally Posted by Angel View Post
    My apologies; I could have been more clear. Though I know that I am not the only one to use the phrase 'first language' in regards to the way that I process language rather than the language itself, it clearly is not something that has reached the social consciousness. I did not know that when I wrote it. I have often used the example, to good effect with both neurotypicals and neurodiverse folks, that the world is made up of PC's - and I am a Mac. I work perfectly fine, right up until I try to run 'Word for Windows' on my system - then it crashes.



    It is unlikely to be coincidence that I gravitated to the simplicity of Zen over other branches. Still, part of my practice consists of a morning meditation followed by a short reading by the local Zen master. Favorite's of hers include some names that have appeared elsewhere in this thread - Darlene Cohen, Robert Aitken, etc. Sitting is vital, but this fruit is often out of my reach. Perhaps you, or someone else here, has had the opportunity to enter into a dharma dialogue with a teacher. I understand that many folks find value in this exchange, gaining clarity - whereas for me, I am being fed a word salad. A teacher might point to the moon differently if s/he pointing for a blind person.

    Meian: I appreciate your kind offer, I'm sure I'll be in touch at some point.

    I am humbled by the responses and the links. I have not yet had the opportunity to follow them but expect I shall, later today. Thank you to Kokuu, Hokan, and Meian.
    Hi Angel! I am what would have been considered Aspergers in the past system and have ADHD as well. Your request really gave me pause, as I would not have even considered that there might be Zen teachings out there that would particularly appeal to neuroatypical folks. Like you I’m sure, I try to fit the square peg into the round hole on a daily basis.

    Initially I found Joko Beck’s books to be the most clear and if not for them, the others I read (which included some of the most widely recommended) would probably not have led me down this path.

    I also find Domyo Burke’s “Zen Studies Podcast” to be very helpful. She is very clear and uses good examples and metaphors, and the podcasts are categorized in such a way that you can organize listening in whatever way is most helpful to you.

    Treeleaf is a treasure chest of teachings available in every form—video, Zazenkai, guest lectures, book club, and general teaching posts in bite-sized thought-provoking essays. Jundo has a way of explaining the teachings that penetrates even the most resistant of my brain states. His beginner series cemented many of the concepts (and non-concepts) for me. And he is incredibly dedicated to being available to directly answer questions on the forum as well as to helping us find accommodating ways to practice. In my first years here I would constantly dig through the archives and find things that resonated.

    If nothing else, you have support and friends here and we can try to help in whatever way we can!

    (Sorry for such a long post)

    Gassho,
    Jakuden
    SatToday


    Sent from my iPhone using Tapatalk Pro

  3. #103
    Quote Originally Posted by Jakuden View Post
    Initially I found Joko Beck’s books to be the most clear and if not for them, the others I read (which included some of the most widely recommended) would probably not have led me down this path.
    I have found Joko Beck's book at my favorite bookseller just now and will explore the writings moving forward. Thank you for the recommendation. I have never failed to be surprised at how one teacher/author can resonate with me so strongly whilst others - even those that come highly recommended, often do not. As difficult as it can sometimes be for me to discern the meaning behind a neurotypical explanation, there are those who seem to be able transcend my personal challenges with ease. Adya is one such teacher. Ajahn Brahm is another. Thank you for your welcome.

  4. #104
    Hi Angel

    If there is some agreement between neuro-atypical people here as to which resources are more accessible, we can look to providing a list for any new members coming with similar processing issues.

    Please do share with us anything you find helpful. We try to be as inclusive as possible in making the teachings and practice work for people but some areas are currently more developed than others.

    Gassho
    Kokuu
    -sattoday/lah-

  5. #105
    Quote Originally Posted by Angel View Post
    As difficult as it can sometimes be for me to discern the meaning behind a neurotypical explanation, there are those who seem to be able transcend my personal challenges with ease. Adya is one such teacher. Ajahn Brahm is another. Thank you for your welcome.
    Thank you in return for your recommendations! I am excited to explore them.

    Gassho
    Jakuden
    SatToday


    Sent from my iPhone using Tapatalk Pro

  6. #106
    I’m on Medication double duty. Seizure, and pain. Works for both. My AVM was masked when it began to grow. Cause seizure. I was experiencing paralyzed seizure. That’s what tipped off doctors. Then imagining was there showing AVM in 3d and enlarged. Looked like a spider except many legs. Thank you everyone for being there! Okay! I feel the foam where doctors placed the material.
    Sat/ lah
    _/\_


    Sent from my iPhone using Tapatalk Pro
    Peaceful Poet, Tai Shi. Ubasoku; calm, supportive, limited to positive 優婆塞 台 婆

  7. #107
    Faith that just sitting contains the whole universe and joyful bliss is only obscured by our own minds

    Sat/lah


    Sent from my iPhone using Tapatalk
    _/_
    Rich
    MUHYO
    無 (MU, Emptiness) and 氷 (HYO, Ice) ... Emptiness Ice ...

    https://instagram.com/notmovingmind

  8. #108
    Hi, I just wanted to add a note to this thread to say I'm so glad that Treeleaf is so accommodating to people with chronic illness and disability. That's been the main reason I haven't been able to join a sangha despite practicing for so long, and I've realised a lot of Buddhist spaces are quite excluding to disabled people (because of 'tradition?') It's so nice to feel that I'll be able to fully participate here despite my chronic illness and disability. Thank you, Jundo and everyone at Treeleaf.

    Gassho,
    Andrea

    SatToday

  9. #109
    Quote Originally Posted by Andrea View Post
    Hi, I just wanted to add a note to this thread to say I'm so glad that Treeleaf is so accommodating to people with chronic illness and disability. That's been the main reason I haven't been able to join a sangha despite practicing for so long, and I've realised a lot of Buddhist spaces are quite excluding to disabled people (because of 'tradition?') It's so nice to feel that I'll be able to fully participate here despite my chronic illness and disability. Thank you, Jundo and everyone at Treeleaf.

    Gassho,
    Andrea

    SatToday
    Welcome, Andrea, and yes! I have had similar experiences in this area.

    If you ever have any questions, or need assistance with anything, please feel free to reach out. We are happy to help!

    Gassho2, meian stlh

    Sent from my SM-G975U using Tapatalk
    My life is my temple and my practice.

  10. #110
    I have read that 59% of Ankylosing Spondylitis patients have mental illness. My first real diagnosis was psychotically depressed, and I was treated improperly with massive doses or Thorazine; when looking back I had I believe unipolar bipolar disorder. for many years misdiagnosed AS as besides, finally diagnosed at age 41 with AS and bipolar at age 60, always passed on with massive doses of antipsychotics which did not work for my physical illness, finally given Lithium and I responded, and after massive doses of nonsteroidal pain relivers, all of which destroyed my kidneys, finally in 2001 beginning proper treatment for my serious arthritis of my spine with the biological Enbrel, and finding a wonderful psychiatric hospital in 2010 diagnosed at an age when I am and was getting old, and realization of long growing AVM last year, finally freeing my thinking. I sought both pain relief and enlightenment to Find Shikantaza, and a teacher in Jundo. I am grateful for everything. Please Jundo, let this brief excursion into a history stand or strike it down or move it, but I request it is only understanding my journey to Ubasoku.
    Gassho
    sat/lah
    calm poetry
    Last edited by Tai Shi; 07-20-2022 at 12:32 PM. Reason: spelling
    Peaceful Poet, Tai Shi. Ubasoku; calm, supportive, limited to positive 優婆塞 台 婆

  11. #111
    Ankylosing Spondylitis continues as it has all my life, exercise almost daily good for both Illnesses. Ss I come off muscle relaxers, saliva glands working better, more concentration, better hand, eye, better hearing. Now have come down significantly, anxiety less, happiness returning. Long term illness improved, followed doctors advice. I am better.
    Gassho
    sat/lah
    Last edited by Tai Shi; 08-12-2022 at 02:46 PM. Reason: concision
    Peaceful Poet, Tai Shi. Ubasoku; calm, supportive, limited to positive 優婆塞 台 婆

  12. #112
    Hi all

    I just felt like acknowledging this thread. I have practised in a place many years ago that required square pegs to fit in round holes. Here at Treeleaf I feel the pegs and holes are both round and square at the same time and can either fit or not fit - everyone's reality just being as it is. I have OCD, which took about 25 years to really understand, previously believing that it was a problem with my beliefs, attitude, and the three poisons! Sometimes, those concrete beliefs or ideals, the dedication to perfection/ritual that can be driven by some neurodivergent conditions, can hamper zen practice, but here I believe you are able to roll with it, just do what you can, and sit, and know that it is enough for the moment.

    Tai Shi - your perseverance and lightness of heart is always inspiring

    Gassho to all and thanks for be sharing of yourselves, Tokan

    satlah

  13. #113
    Quote Originally Posted by leon View Post
    I just felt like acknowledging this thread. I have practised in a place many years ago that required square pegs to fit in round holes. Here at Treeleaf I feel the pegs and holes are both round and square at the same time and can either fit or not fit - everyone's reality just being as it is. I have OCD, which took about 25 years to really understand, previously believing that it was a problem with my beliefs, attitude, and the three poisons! Sometimes, those concrete beliefs or ideals, the dedication to perfection/ritual that can be driven by some neurodivergent conditions, can hamper zen practice, but here I believe you are able to roll with it, just do what you can, and sit, and know that it is enough for the moment.

    Tai Shi - your perseverance and lightness of heart is always inspiring

    Gassho to all and thanks for be sharing of yourselves
    What a beautiful message of caring that shines an inclusive and loving light on our beautiful sangha.

    Tai Shi and all sentient beings with our uniqueness and experiences on The Way of wabi-sabi and equanimity of all.

    gassho,
    stlh
    My life is my temple and my practice.

  14. #114
    Quote Originally Posted by Tai Shi View Post
    My friends and family marvel at my poetry, my ignorance of heart.
    I do not deserve this marvelous toy sung when eighteen years old
    Seventy-one years less than a fortnight of that body, marvelous
    Toy, I have no doctor who realizes nothing of my skeleton, defied

    Hours before, doctor away from me, slanting was chastised for critical
    Patient told He could not distinguish good from bad, he had argued
    No longer to treat me, my pain growing, said no place alleviating
    Marvelous sigh to possible shatter point. Perhaps I relive death

    If tumor, seek doctors who will care for me skeleton on system rely on
    Pain as system resets itself. I have learned doctors can decline to treat
    Patients, when openly criticized, can choose to leave patient
    No warning, leave body, toy of growth within child become old

    Die at seventy-one with a patient seeking remedy and relief, nothing
    May deny calm poetry, five minutes, perhaps when that patient
    Cannot drive, must be home with pneumonia, in his own home,
    Nothing leaning can treat any patient to determine reputation?

    This Rheumatologist has told me he will not treat me because
    I was openly critical of his remarks, he believes me not that,
    I am losing sight, that I have Uveitis in right eye, that I cannot
    See as well, is it coincidence or have doctors decided no treatment?

    Gassho
    sat/ lah
    I am sorry you are suffering.

    A couple of points:

    A doctor does not represent doctors as a whole.

    A doctor simply renders opinions. Everybody has one.

    Gassho, Jishin, ST, LAH

  15. #115
    I just added the following to our top message. I don't think it a secret that Meian will be Ordained as a priest soon at Treeleaf. So, I will note that in the message as soon as that happens!

    ~~~~~~~~~~~~

    SANGHA CONTACT POINT

    Here is a special message from Meian, our long time member who practices with several disabilities and is an excellent person to contact on these issues [MESSAGE LINK]:

    Hello all, I want to welcome all new members to Treeleaf, and I extend a particular welcome to any new members living with chronic illness of body and mind. At Treeleaf, we have plenty of opportunities to sit and practice in various ways to accommodate chronic illnesses, and you are welcome to join us for any of them! I would also like to invite new members with chronic illness to feel free to message me any time, if anyone would like to discuss practicing with chronic illness or if you just want a listening ear. I've been living with chronic illness (multiple) for a number of years now and, while I don't have answers to give, I am happy to share experiences with you, or just listen. As such, if you would like to sit together some time, please do message me and I'll do my best to arrange it.

    Gassho, Meian

    Gassho, J

    stlah
    ALL OF LIFE IS OUR TEMPLE

  16. #116
    Hi everyone! I tried to follow the three sentence guideline (because I want to,) but it went slightly longer.

    I was looking for a thread in which to pop in and formally say hello, and... this one fits!

    Why? Well, my life has changed drastically in the last few months, as my husband developed a very severe expression of ME/CFS or long COVID.

    In mid December, I was actively grieving my inability to attend our local Zen center in person as much as I longed to, and while crying and reading Tricycle simultaneously, (definitely a mood,) I found the ad for the Monastery of Open Doors.

    It meant so much to me. And I've deeply appreciated the zazenkais, tea sessions and evening sits I've attended since. Thank you so much for being a truly accessible zen center. So much of zen can be practiced in the depths of illness, or the constant samu of caretaking, but of the three treasures, I think sangha can be the most easily lost when you're affected by chronic, debilitating illness, and living with disability.

    Josh sends his gratitude too, but his illness is so severe right now that Zoom audio causes him to crash. We desperately hope we can coax his body back to where it was a few months ago, and that he can attend as well.

    Gassho, SAT/LAH

    Kailyn

  17. #117
    Quote Originally Posted by kailyn View Post
    Hi everyone! I tried to follow the three sentence guideline (because I want to,) but it went slightly longer.

    I was looking for a thread in which to pop in and formally say hello, and... this one fits!

    Why? Well, my life has changed drastically in the last few months, as my husband developed a very severe expression of ME/CFS or long COVID.

    In mid December, I was actively grieving my inability to attend our local Zen center in person as much as I longed to, and while crying and reading Tricycle simultaneously, (definitely a mood,) I found the ad for the Monastery of Open Doors.

    It meant so much to me. And I've deeply appreciated the zazenkais, tea sessions and evening sits I've attended since. Thank you so much for being a truly accessible zen center. So much of zen can be practiced in the depths of illness, or the constant samu of caretaking, but of the three treasures, I think sangha can be the most easily lost when you're affected by chronic, debilitating illness, and living with disability.

    Josh sends his gratitude too, but his illness is so severe right now that Zoom audio causes him to crash. We desperately hope we can coax his body back to where it was a few months ago, and that he can attend as well.

    Gassho, SAT/LAH

    Kailyn
    Kaylin! Lovely to read this from you. Always a joy seeing you and Josh. Give him my best wishes, please! See you in a few days

    gassho
    sat and lah
    Bion
    -------------------------
    When you put Buddha’s activity into practice, only then are you a buddha. When you act like a fool, then you’re a fool. - Sawaki Roshi

  18. #118
    I also suffered from long covid in 2022-- it is really debilitating. All my wishes for recovery to him, and I'm so glad you are happy here, Kaylin
    stlah
    求道芸化 Kyūdō Geika
    I am just a priest-in-training, please do not take anything I say as a teaching.

  19. #119
    Kailyn, there are several of us here that have ME/CFS and we are all too familiar with the suffering this illness can cause. It is an incredibly difficult adjustment to go from being healthy to being unable to get out of bed without severe consequences. It's likely even harder on you to have to see him go through this and feeling powerless at the same time. For me, I'm just focusing on getting through the day while my wife has to straddle both worlds.

    Yes, you have found the right place. You may be too young for this reference, but we are definitely the Island of Misfit Toys. When I was checking out TreeLeaf and I saw the zazen sessions during Rohatsu where they did reclining zazen in honor of differently bodied memebers, I cried. Zen study and practice fits well with this illness. It's one of the few things we can actually do and certainly the benefits to the autonomic nervous system are a bonus. Personally, I have found meaning in addressing my loss of most of the abilities that I associated with my self with the concept of no self.

    I spent the first 4 years of my illness not being able to do zazen sitting up, but eventually I could. Never thought that being able to sit up would be big deal in my life, but it sure became one. Impermanence works both ways and hopefully Josh's condition will swing the other way at some point. Until then, personal fortitude and support wherever you can get it can get you through each day. I hope that Josh being able to participate in zazenkai off camera while you connect with our smiling faces over zoom when you can brings some sense of communtity support during what is likely the biggest challenge of your lives.

    Gassho,
    Koriki

    s@lah

  20. #120
    Quote Originally Posted by Koriki View Post
    Kailyn, there are several of us here that have ME/CFS and we are all too familiar with the suffering this illness can cause. It is an incredibly difficult adjustment to go from being healthy to being unable to get out of bed without severe consequences. It's likely even harder on you to have to see him go through this and feeling powerless at the same time. For me, I'm just focusing on getting through the day while my wife has to straddle both worlds.

    Yes, you have found the right place. You may be too young for this reference, but we are definitely the Island of Misfit Toys. When I was checking out TreeLeaf and I saw the zazen sessions during Rohatsu where they did reclining zazen in honor of differently bodied memebers, I cried. Zen study and practice fits well with this illness. It's one of the few things we can actually do and certainly the benefits to the autonomic nervous system are a bonus. Personally, I have found meaning in addressing my loss of most of the abilities that I associated with my self with the concept of no self.

    I spent the first 4 years of my illness not being able to do zazen sitting up, but eventually I could. Never thought that being able to sit up would be big deal in my life, but it sure became one. Impermanence works both ways and hopefully Josh's condition will swing the other way at some point. Until then, personal fortitude and support wherever you can get it can get you through each day. I hope that Josh being able to participate in zazenkai off camera while you connect with our smiling faces over zoom when you can brings some sense of communtity support during what is likely the biggest challenge of your lives.

    Gassho,
    Koriki

    s@lah
    And what a wonderful and encouraging presence you are, every single week!

    gassho
    sat and lah
    Bion
    -------------------------
    When you put Buddha’s activity into practice, only then are you a buddha. When you act like a fool, then you’re a fool. - Sawaki Roshi

  21. #121
    Why? Well, my life has changed drastically in the last few months, as my husband developed a very severe expression of ME/CFS or long COVID.
    Sorry to hear that, Kailyn. As Koriki says, there are a few of us here with that condition (and also many others with Fibromyalgia and similar) and know how tough that can be. My own presentation is severe and continues to decline. I used to moderate a very good group on Fb for people with severe ME and Long Covid and will message you the link in case you might get something out of that.

    If it is useful, I wrote some basic material on practicing Zen with chronic illness, although need to update this to include practicing with all of life: https://andykokuumclellan.wordpress....ss-disability/

    You may well also know of it but Toni Bernhard's book 'How to be Sick' is a great 'Buddhist inspired' guide to living with illness from someone who also has ME/CFS

    Wishing both you and Josh well, and I hope he will be able to join us as he can.

    Gassho
    Kokuu
    -sattoday/lah-

  22. #122
    Member Gooey's Avatar
    Join Date
    Nov 2023
    Location
    Whadjuk boodja, so-called Australia
    Thank you Kailyn for sharing this. I also have ME/CFS, alongside some other chronic illnesses. I had started sitting twice a day most days, with hands in cosmic mudra as per tradition. I felt some grief recently when I realised that sitting twice a day was causing ME/CFS flare-ups for me, and the cosmic mudra was exacerbating the nerve pain in my hands, so I have made some adjustments to my practice (sitting once a day for a slightly shorter period, palms resting on my lap. Some days I can still sit twice and join the Euros/Kiwis scheduled sit).

    While these little griefs around things I can't do are familiar to me after many years of illness, I am also learning a lot about non-attachment. Over and over, my body teaches me that I have to let go of attachment to being able to do certain things, and I'm grateful to have such a dedicated teacher even when it is hard. It turns out I'm really resistant to learning this and need lots of reminding! Koriki, what you said about Zen practice and study fitting well with this illness resonates with me a lot. While I would never wish ME/CFS or other chronic illness on anyone, I feel lucky to be part of this community with so many who share this experience.

    Gassho
    Gooey (sat/LAH)

  23. #123
    Hi!
    Are there any ways in which we might be able to make specific suggestions for your practice?
    For me, part of it was finding the right thing to sit on, and a position that works with tremors and whatnot .. any way we can help make this work is great! The important thing is being able to practice zazen in a way that you're able.

    Sat today!
    LAH
    Gassho!
    護道 安海

    -Godo Ankai

    I'm still just starting to learn. I'm not a teacher. Please don't take anything I say too seriously. I already take myself too seriously!

  24. #124
    Quote Originally Posted by kailyn View Post
    Hi everyone! I tried to follow the three sentence guideline (because I want to,) but it went slightly longer.

    I was looking for a thread in which to pop in and formally say hello, and... this one fits!

    Why? Well, my life has changed drastically in the last few months, as my husband developed a very severe expression of ME/CFS or long COVID.

    In mid December, I was actively grieving my inability to attend our local Zen center in person as much as I longed to, and while crying and reading Tricycle simultaneously, (definitely a mood,) I found the ad for the Monastery of Open Doors.

    It meant so much to me. And I've deeply appreciated the zazenkais, tea sessions and evening sits I've attended since. Thank you so much for being a truly accessible zen center. So much of zen can be practiced in the depths of illness, or the constant samu of caretaking, but of the three treasures, I think sangha can be the most easily lost when you're affected by chronic, debilitating illness, and living with disability.

    Josh sends his gratitude too, but his illness is so severe right now that Zoom audio causes him to crash. We desperately hope we can coax his body back to where it was a few months ago, and that he can attend as well.

    Gassho, SAT/LAH

    Kailyn
    Hi Kailyn,
    I live with ME/CFS and Fibromyalgia, and a few other issues too.
    Humans, we adapt. We are good at it.

    I am here - please feel invited to reach out if you or Josh need a chat. Of course I am just a novice priest, so I will not try to give you advice.

    Gasshō
    Seiko
    Stlah
    Gandō Seiko
    頑道清光
    (Stubborn Way of Pure Light)

    My street name is 'Al'.

    Any words I write here are merely the thoughts of an apprentice priest, just my opinions, that's all.

  25. #125
    Hello Everyone,
    I think I found the right thread.
    I live and practice with and alongside Multiple Sclerosis, Depression, and ADD (plus the flotsam and jetsam that come with these conditions).
    I am glad to have found Treeleaf and people to share our challenges of practices with.
    May everyone find tranquility and peace in their day.
    Gassho,
    Shinkon
    stlah

  26. #126
    Hi, Shinkon.
    Have the conditions you live with presented any challenges to your ability to practice that we might offer some help with... OR... have you, maybe found some "work-arounds" you could share that might be helpful to others?
    Gassho!
    護道 安海

    -Godo Ankai

    I'm still just starting to learn. I'm not a teacher. Please don't take anything I say too seriously. I already take myself too seriously!

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