Zen Practice with Physical Illness or Disability

[Ankai]

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?

[Shinkon]

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

[Seiko]

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

[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

[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)

[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-

[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

[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

[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

[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

[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

[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

[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

[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

[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