Zen Practice with Physical Illness or Disability

[Meian]

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! [emoji120]

Gassho2, meian stlh

Sent from my SM-G975U using Tapatalk

[Tai Shi]

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

[Tai Shi]

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

[Tokan]

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

[Meian]

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

[Jishin]

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

[Jundo]

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

[kailyn]

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

[Bion]

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

[Amelia]

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

[Koriki]

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

[Bion]

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

[Kokuu]

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-

[Gooey]

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)

[Ankai]

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