How to be Sick - Chapter 17

[Kokuu]

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Hi all!

Well, we are up to chapter seventeen and although it is relatively long (14 pages) I decided to tackle it all in one go as the issues are pretty similar throughout. After that, there is only one short chapter to go and an appendix of practices.

In chapter seventeen, Toni looks at isolation, loneliness and connection. In my chronic illness group on Facebook, one of the most common posts is members asking if it is usual to lose a whole lot of friends during the first year or so of being sick, once there is the realisation that you are not going to bounce back to being the fun person you were before who went to parties/played sports/go clubbing/climb hills etc. As Toni confirms, this is usually true, although it does depend on how sick you are and the kinds of things you do with your friends. However, most people relate having a shift in their friendship groups and many of us who are restricted in how much we can go outside of our house, online friendships can become a large feature of our lives.

When I first got sick, there was no world wide web and people with my chronic illness stayed in contact through lists of addresses and phone numbers with occasional brief phone chats and surprise postcards through the mailbox.

In the mid 1990s there was also no such thing as online Buddhism, although maybe those who already had a dharma teacher might have been able to stay in contact with them. I remember asking one teacher if they would communicate with me by mail or phone but they considered and said that would not be possible. I am grateful for their honesty even if the outcome was not what I wished for.

I am sure you all have your experience of aloneness, whether it is a positive one of spiritual retreat and refreshment or one more of isolation.

A note for this chapter is that Toni refers to Byron Katie’s The Work again which we already talked about in terms of its issues in chapter 12.


Questions:

Have you found that your condition has led to a greater period of aloneness? Does this feel good, bad, variable? (for carers, has the person you care for found themselves more isolated? Have you yourself as a result of your caring responsibilities?)

How have you maintained your personal, familial and spiritual relationships during periods when you are unable to connect with others in-person as much as you might like?

Do you use social media? For you, is it a good thing in terms of connection or can it make you feel that you are missing out on parts of life?


Wishing you all a happy solstice for today and a lovely week!

Gassho
Kokuu
-sattoday/lah

[Naiko]

I have become increasingly isolated over the years of my illness, as my periods of remission have waxed and waned. I’ve always been comfortable with solitude, in fact cherished my alone time, but I also balanced that with a lot of activities with varied groups of people. I was very active.

The first few years were, like Toni’s experience, the most difficult as friends stopped including me. This also coincided with my circle getting older and becoming more clannish in general, tending to spend more time exclusively with family. Since I have no family, I really felt adrift. Now, I worry that I am abnormally too comfortable with solitude (though I felt like the pandemic lockdowns almost broke me a few times).

I do use social media. It’s pretty great to be able to keep up with people near and far on my own terms, when I have the energy to interact. I text and video chat, and arrange occasional zoom dinners. I also belong to private Facebook groups. One is a support group related to my illness; others, happily, have nothing to do with it and no one knows I’m ill and that is a welcome respite.

Edited to add: I really liked that she brought up isolation from nature. I feel that is something not mentioned a lot when discussing illness. Our animal bodies are made to move outside and it feels like a great loss when we can’t touch the earth—walk barefoot, sit on the ground. I miss hiking, sitting around camp fires, early morning boot camp classes on Boston Common (never thought I’d miss bear crawling through goose poop, but there you have it).

Gassho,
Naiko
st

[Shonin Risa Bear]

Have you found that your condition has led to a greater period of aloneness? Does this feel good, bad, variable? (for carers, has the person you care for found themselves more isolated? Have you yourself as a result of your caring responsibilities?)

I have valued and sought aloneness so much over the years, it's hard to say if the condition(s) had much to contribute. Everyone's used to not including me but that's mostly about the profound deafness, which goes all the way back.

How have you maintained your personal, familial and spiritual relationships during periods when you are unable to connect with others in-person as much as you might like?

Zoomzenkai is a thing.


Do you use social media? For you, is it a good thing in terms of connection or can it make you feel that you are missing out on parts of life?

This is social media, so, yes? I've stopped posting to fb but am busily clicking away on TW, mostly to help spread Covid info, reports on wildfires and evacuations and other DRR (disaster risk reduction) matters. My tagline is that "living within our means is DRR," derived from Dogen saying we should take only whatever is already available to us.

gassho
ds sat and some lah

[Onka]

Have you found that your condition has led to a greater period of aloneness? Does this feel good, bad, variable? (for carers, has the person you care for found themselves more isolated? Have you yourself as a result of your caring responsibilities?)

Yes my health has led to an almost complete loss of friendships and ability to do the things I used to socially. It feels completely rubbish. my partner has lost almost all of her friends and social life due to her health too. We both are incredibly isolated and beyond medical appointments and visits to the chemist we could very easily go many weeks without seeing anyone or connecting with anyone.

How have you maintained your personal, familial and spiritual relationships during periods when you are unable to connect with others in-person as much as you might like?

Both my partner and myself have no significant familial relationships, very occasionally getting a text message from my partner's brother. We rarely see anyone or hear from anyone else either. I get a monthly email from Kokuu checking in on me but aside from that there are no relationships I maintain in a Buddhism sense. My daily Shikantaza practice is my constant connection to Treeleaf.

Do you use social media? For you, is it a good thing in terms of connection or can it make you feel that you are missing out on parts of life?

I no longer use any social media to connect with others. I get disappointed easily.

gassho
Onka
st

[Meian]

I am naturally an introvert and never kept many friends. However, I used to be involved in groups and communities, volunteering, social justice causes, working, family outings, lots of things. My illness changed all of that and, sadly, I learned that people I thought I was friends with, weren't really friends. I lost friends and even family from my life within months, when my energy and health changed rapidly, and I could no longer do all that I had done before.

The short version of this, is that I also turned to the internet, and forums -- and gradually made some new friends in other states, but mostly internationally. I am physically isolated locally, but my network is global thanks to the internet. Even if it sometimes takes me weeks to stay in contact with people, in some way.

Gassho, meian st lh

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[Tai Shi]

With the pandemic not over yet, my sickness is still different than virus. I speak longer here than other places in the forum because I will always be sick. In this section we write of our disabilities because of the nature of this thread. I wish only to write in detail of my experience. In my first Jukai, I knew less about Soto Zen Buddhism than I do now. I need to ask less of Jundo. Jundo began reminding me that Marjorie is my first Zen teacher, has continued to do so. Six years ago in preparation for Jukai, I recognized my continuous sobriety date of July 22nd 1987. Last year the actual date of July 22nd came again with my preparation for my second Jukai, and my father married for the third time. I was distracted.

This year I will not need explanations so much as in the past. I'm more independent as I prepare for my third Jukai. All have boundaries. Though disabled I can get ready for Jukai, and I will learn more of solitude, more sitting, and more ideas. I know I can relax by walking short distances to prepare for longer distances. I have given my wife a new Fire tablet, and a Paper White Reader to use in solitude. She bought an exercise which invited me to use it at time of greater independence for both of us. She uses the Fire tablet to watch movies while on the bike, and I use gifts of a computer and iPhone to greater independence We exercise alone on the bike.

The Forum is my most important source for book titles, and Buddhist ideas. I will remember to read more, and comment less. My concentration improves with practice. Marjorie and I use our own saved money to help with household expenses, and for ourselves. I buy my books to use on my Kindle and I am sometimes online sitting with friends, or talking on the phone. Though she has impaired Marjorie has compensated, and she drives better than me and we go to town. I no longer drive. I am a senior. I like to hear music, take photos, and read my own books. We both recognize our own needs and desire to care for the other. I use of senses are in different ways than Marjorie. How to be Sick explains the care giver's needs. She is my care giver, and I can help her by giving her time to herself. Yet, we can still help each other in personal ways, me by getting the morning newspaper, setting the table, and straightening my things. She can tutor me in technology so I can learn more, and more.

I have serious arthritis of the spine and bipolar disorder, so must be careful when walking or helping others. However, I read, and I'm reading The Lotus Sutra, We framed a beautiful hand-made Gatha from this Buddhist text. This reading s difficult, but Jundo told me a fact. I was able to tell our daughter that the first two lines of the 16th ch. it's chanted by many throughout the Mahayana world, my tradition. I look forward to this part of the text, a calligraphy given dad on Father's Day. Jundo has often helped me with information about Zen, and he needs time to help others. For editing this book my own book of poetry, Marjorie will help me, and I am doing most of the work myself. My next book may be written with my own HP or Lenovo Computer. I want to be independent as a disabled person. Our lives as seniors seems to become more serene than at our earlier times, but we still must often work through problems. Now however, it's more of a working through than at our 20th wedding anniversary. We are more careful in our 39th year of marriage.
Gassho
sat/ lah
Tai Shi

[Tai Shi]

My illness were so severe from 2010 until now 2023-07-06 our wedding anniversary is this Sunday and me; personally was in hospital for possible mini stroke. Found taking all strong medications together not good; spread it out, and exam for two days
Gassho
sat/lah

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