How to be Sick – Chapter 4

[Kokuu]

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Chapter four of the book looks at impermanence, something that I imagine we have all had to become used to, whether we have a physical or mental health condition or are a carer to someone who does.

In Buddhism, we know that life can turn in an instant but, for me, it feels that when health is already tenuous, the sands can shift even more quickly at a moment’s notice.

Toni talks about having to call her partner back a few days into his retreat after falling and breaking her leg, and his patient acceptance of that, and the subsequent joy that arose when it turned out that she wouldn’t require the predicted surgery.

She also describes ‘weather practice’ of seeing symptoms as passing clouds, something that I imagine we are used to doing in sitting practice with thoughts and other sensory experiences.

Questions to contemplate if you wish, or feel free to write about any aspect of the chapter that spoke to you.

Do you feel you are more in touch with the notion of impermanence because of your condition or caring responsibilities?

Do you find it frustrating that plans you make are often very tenuous because you just do not know if you will be able to manage it when the time comes?

How do you work with the unpredictability of your condition or that of someone you care for?


Jundo reminded me that Toni lists a number of practices at the end of the book and I had forgotten that so we will be offering one for each chapter for you to try during the week if you wish. For chapter four, it is the weather practice (p186):

Recognize that these physical [or mental/emotional] symptoms are as unpredictable as the weather and could change at any moment. The wind blew the discomfort in and may blow it out at any moment. If a new medical problem develops, such as an injury, recall that no forecast of the future could have been certain no matter how many predictions you took.

So, can you see the symptoms of your condition (or if you are a carer, those of the person you care for) like the weather, in terms of being unpredictable but also eventually passing by? Is it something you already do? Does it help?


Gassho
Kokuu
-sattoday-

[Kenku]

Joining this sangha is a plum blossom fragrance for me.

Gassho,
Kenkū.

Sat today.

[krissydear]

Do you feel you are more in touch with the notion of impermanence because of your condition or caring responsibilities?
I do... My illness is centered around changes in the brain. My emotions, thoughts, feelings, states of mind, cognitive abilities, sense of reality, and stability all change at different times and different paces. I think I understand impermanence- through self awareness, but I don't think I receive it well, if that makes sense. I feel I can see it and know it, but I find it harder to accept.

Do you find it frustrating that plans you make are often very tenuous because you just do not know if you will be able to manage it when the time comes?
Yes. It is exhausting to the point where I don't make 'plans' outside of the various necessary appointments. I used to be able to hang out with friends on a whim. But even when these things are planned, I often end up stuck in bed upstairs instead of downstairs playing board games with friends. (Pre-Covid times). In this online world, it's easier to chat individually on phones and whatnot, but I still find it difficult to connect with others.

How do you work with the unpredictability of your condition or that of someone you care for?
This is something I am still working on. Even after 10 years, I feel like I am only starting to accept things as they are and try to ride the wave instead of control it. I, along with my support group, have set up ways for me to vocalize how I'm doing or for them to tell me that something seems wrong. I use apps to track my symptoms daily, and I have a regular schedule with my doctors. I'm grateful to be surrounded by people who care. Aside from that, I try to notice things as soon as possible but mostly end up doing damage control.


can you see the symptoms of your condition (or if you are a carer, those of the person you care for) like the weather, in terms of being unpredictable but also eventually passing by? Is it something you already do? Does it help?
I think so. I often think of them as waves crashing in and receding. But the weather is another great way to think of it. They come and go, unpredictably. I do think it's helpful. If I'm going to get wet- waves or rain, I think I'd better wear a wet-suit.

Gassho
krissy
sat/lah.

[Inshin]

Do you feel you are more in touch with the notion of impermanence because of your condition or caring responsibilities?

Due to my mum's condition I got to learn about impermanence very early. Life mostly felt like walking in a minefield, you never know when something will explode. My way of dealing with unpredictability was to develop heightened sense of control. Being in control meant being safe. It is thanks to the practice that I started to let go each day a bit more, in more situations. My mantra is "let it be", I let it sink deep inside, and then I can see more clearly how I can react to a particular situation.

Do you find it frustrating that plans you make are often very tenuous because you just do not know if you will be able to manage it when the time comes?

I come across as a rather negative person because to any idea (be it work or personal) or a plan, the first things I'll point out will be all the reasons why it may not work. I'll still work to make it happen but I guess preparing myself for failure makes the disappointment less bitter if the plans don't work out.

How do you work with the unpredictability of your condition or that of someone you care for?

Plan for the worst and hope for the best.


can you see the symptoms of your condition (or if you are a carer, those of the person you care for) like the weather, in terms of being unpredictable but also eventually passing by? Is it something you already do? Does it help?


From all the coping techniques Toni mentions this is one of my favourites. I've started practicing it daily. Not only because it points to the better side of impermanence (bad things pass too) but it also allows to see the beauty even in the storm.

It reminds of this beautiful poem :

No umbrella, getting soaked,
I'll just use the rain as my raincoat.
- Daito (1282-1334)


Gassho
Sat

[Shoki]

Do you feel you are more in touch with the notions of impermanence because of your condition?
Yes. This condition is impermanent. The symptoms are impermanent. A few hours of feeling OK is impermanent. Youth is impermanent. I am impermanent. I think this whole thing will turn into something else eventually. Better or worse, I don't know.

Do you find it frustrating because plans you make are often very tenuous because you just don't know if you will be able to manage it when the time comes?
Not necessarily frustrated but more uncertain. Looking at a post-vaccination spring and summer, things like dining out, socializing, barbecues, etc. I don't know if I can handle this. Right now I need to eat several small meals during the day of restricted foods. Moving around through the world, I just can't stop and get a snack or sandwich. I'm thinking I may have to bring along some non-perishable food wherever I go. That thought sounds like such a ridiculous inconvenience but hey, some people are starving.

How do you work with the unpredictability of your condition?
I just deal with it. What are you gonna do? Being home most of the time it's not too bad. I can try to deal with symptoms with food, peppermint tea, zazen, medicine. But again, months from now if I'm away from home, in a car, at someone's house, I need to have a plan of how I'm going to be out there.

Can you see the symptoms of your condition like the weather in terms of unpredictable but also eventually passing by? Is this something you already do? Does it help?
Yes. Like Toni says in the book about the wind just blowing, sometimes I think I'm going to be OK today because I'm doing all the right things and then I wind up feeling lousy. Right now I'm in the reintroduction phase where I'm to try restricted foods one at a time to see what happens. Sometimes I'll try a restricted food thinking I'm going to spend 12 hours paying for this and nothing happens. Just like the weather, you can make a scientific, educated prediction but the wind blows (no pun intended with a stomach illness!!) and then you have to get your winter coat on. Does it help? All of this stuff helps. Zazen, Toni's book, Treeleaf, Jundo, zen practice, this sangha, all of it helps. Thanks.

Gassho
STlah
Shoki

[Shonin Risa Bear]

Do you feel you are more in touch with the notion of impermanence because of your condition or caring responsibilities?

Yes, as to my condition(s). In which case, what was holding me back as a Zen practitioner from being fully in touch with it? Then again, if it's a notion, what would Joshu say to me for entertaining it? As to caring, my mom taught me a lot in her last week, though it would be difficult to put into words. _()_

Do you find it frustrating that plans you make are often very tenuous because you just do not know if you will be able to manage it when the time comes?

Actually it fits my personality. The people around me, on the other hand, might use that word "frustrating" quite freely.

How do you work with the unpredictability of your condition or that of someone you care for?

My responsibilities still require of me that I do the heavy lifting and "engineering" on the homestead, so I watch for two things to intersect: decent weather and enough of me to meet the occasion. If either is a no-go, I just get in the chair and raise my feet. Thank goodness for our son, who introduced us to the Roku. Sometimes all ya can do is chuckle at "As Time Goes By." _()_

Can you see the symptoms of your condition (or if you are a carer, those of the person you care for) like the weather, in terms of being unpredictable but also eventually passing by? Is it something you already do? Does it help?

We are caretakers for our autistic son. He's up and down unpredictably and seems to have a 48 hour sleep/wake cycle, so we just have to roll with it. After 36 years of this, I'd say, yeah we do that. _()_

gassho
ds sat and lah

[Kenku]

Do you feel you are more in touch with the notion of impermanence because of your condition or caring responsibilities?

Yes but there are two sides to impermanence. Dealing with wanting stability and predicability when there isn’t any is one side. Wanting impermanence, things to change, wanting to get better, wanting the pain to stop, wanting to be called for transplant surgery is another side.

Gassho,
Kenkū.

Sat today & lah.

[Tai Shi]

How to be Sick – Chapter 4

I feel frustrated when someone cannot understand my conditions. They assume I must be healthy because my pain and my mania cannot be seen; my rapid speech is symptomatic and my physical pain is invisible. Is this like the weather or the time of day or being or not being in a crowd. In many ways it’s a condition I cannot control. I still go shopping and still walk through my neighborhood and even taught at universities at one time, but for this, I always without exception take my medication on time and I have a routine. These help with pain and help control my symptoms. However, theses diseases are always present. In my dreams and with many other people that are putting up with my complaints of fear and pain. This is probably like the weather or the time of day, and these I cannot control. My biggest personal problem when I was working was that some routine was so difficult. Because I could not predict myself, I cancelled work or let classes out early or didn’t shower up at times when my pain was unbearable or when I was afraid. My own behavior was like the weather. I resigned from my responsibilities whenever I felt bad and couldn’t bear the idea of one more sack of flower to put into grocery bags and one more demanding student. Just writing about this makes it difficult today, here and now. I know anger is a prohibition of the precepts, but the thought of insensitive people makes me mad. I ask others in our Sangha to understand those who have different behaviors or look like they have difficulty. Is this not compassion of a wise person? Is this not what all aspire to? Apparently not of all. To ask this is all the sick can hope for!
Gassho

sat/ lab
Tai Shi


Sent from my iPhone using Tapatalk Pro

[Meian]

Do you find it frustrating that plans you make are often very tenuous because you just do not know if you will be able to manage it when the time comes?

I would like to reflect on this question, for now. I was confronted with this issue this past week when helping to prepare my late aunt's house for listing (selling). There was no one available to help us do this, as we all have health issues going on, but my one surviving elderly aunt really is mentally not in any condition, and health-wise I'm in the worst condition, but am legally responsible for it.

However, I learned this past week that I can handle up to two hours (if I'm pushing it) of "doing something" before I hit a wall and my body/mind crumble. My husband (who is himself home on medical leave due to an injury) actually noticed me disintegrating as I was walking towards him. He was asking me questions and I started arguing with him, saying "Not right now, I can't think!" My words were coming out garbled and thick, my eyes were drooping and sandy, and my feet were stumbling (my toes had gone numb and I was beginning to stagger). He started to argue, stopped himself, and said "Go home. Forget this thing and just go home. You've had enough."

The next day he apologized and explained that he had been so focused on getting the work done -- he had noticed that I was having trouble, but hadn't realized what was happening or how serious it was until I started speaking and saw me stumbling coming towards him. Sadly, the useful thing about this past week (other than getting to know my mostly-deceased family much better, and understanding my family history much better), was learning where my "wall" is. Except that my wall is where I fall apart and need hours/days to recuperate, so that isn't quite valid.

However, it still gives me something to work with -- and I have a witness. My husband and I had a long/serious talk about this, including reminding him that just because he hasn't experienced it himself, doesn't mean that it doesn't exist, or that others don't experience it. Also explaining to him again that people like me experience fatigue that can't be slept off, and can't be fixed with a cup of coffee, and that exercise is good for everyone, yes, but the wrong kind of exercise puts us in excruciating pain and worse fatigue for days. I live with this, and have for years, so I tend to forget how much misunderstanding and misconceptions there are surrounding chronic illness.

So, my husband witnessed, on the outside, what happens to me when I disintegrate. I now have a timeframe and a "step by step" of what happens when I hit that wall or am nearing it. I plan to take this information to my doctor, who also seems oblivious to what I am living with and has told me that I should "just try." If my husband has now seen it for himself, maybe my doctor will finally listen.

And, unfortunately, the bulk of the work fell to him with the house .... there was no one else. I feel awful about this, but we didn't have a choice. I've hired a cleanout crew to haul stuff away, but my husband also likes to make sure things are done right and he never does anything halfway. This would not be getting done without his valiant efforts.

gassho, meian st

[Naiko]

I do feel more in touch with impermanence and that’s due to both my illness and my practice. It’s something that I reflect upon frequently. I had a tumultuous childhood with a lot of dysfunction and loss, but it was my illness that has been my teacher. Perhaps because those events were external and one’s body seems so comfortable and reliable...until you realize it isn’t. I often recall, from our Precepts readings, Suzuki Roshi’s reminder that everything we have, even our bodies, are just borrowed. Sometimes I’m more in tune and less resistant than I can manage at other times. But we get lots of practice, eh?

I don’t know that I find tenuous plans as frustrating as other people in my life do. Even years later, I don’t think they understand my limitations. I am very choosy in my commitments, prioritizing saving my energy for keeping a roof over my head and committing to things I know I can manage so I don’t disappoint anyone if I can help it. (Except myself. )
Gassho,
Naiko
st

[Tai Shi]

How to be Sick – Chapter 4

Of course I am more in touch with my family and my (wife for sure) and understand what she means when she asks simple things like pick up your dirty clothes . I say this because when I nearly died nine years ago, she stood at the ICU door waiting for the verdict of the Doctor, "Will he live or die?" Dr informed her I would need months and years of rehab. This has made me more in love with life and it's impermanence! I love her truly as the first best friend I've ever had. There is no longer doubt. Life is so filled with meaning because I don't have forever, and I don’t have to live forever with my pain. Sometimes I wish to have more friends but they would never understand. Pain is my keeper and my teacher. If I become angry my pain is worse, so I try to stay quiet but some pain is so bad it is almost a to deal with. I am not able to stay still.I try to be good for something instead of good for nothing. We have today not tomorrow. That's why I love about some of my friends. They might miss me and I might miss them[emoji3590] nothing is certain.
Gassho
sat /lah
Tai Shi

[Onka]

Of course I am more in touch with my family and my (wife for sure) and understand what she means when she asks simple things like pick up your dirty clothes . I say this because when I nearly died nine years ago, she stood at the ICU door waiting for the verdict of the Doctor, "Will he live or die?" Dr informed her I would need months and years of rehab. This has made me more in love with life and it's impermanence! I love her truly as the first best friend I've ever had. There is no longer doubt. Life is so filled with meaning because I don't have forever, and I don’t have to live forever with my pain. Sometimes I wish to have more friends but they would never understand. Pain is my keeper and my teacher. If I become angry my pain is worse, so I try to stay quiet but some pain is so bad it is almost a to deal with. I am not able to stay still.I try to be good for something instead of good for nothing. We have today not tomorrow. That's why I love about some of my friends. They might miss me and I might miss them[emoji3590] nothing is certain.
Gassho
sat /lah
Tai Shi

Gassho
Onka
ST

[Tai Shi]

I no longer drive a car, ride a bicycle, or move by self propulsion of any kind. I depend on my partner to get me everywhere. She has said specifically, "I do not mind taking you places. It gives me something to do besides sitting at home during the pandemic. You make too big a deal by telling your friends you feel guilty by asking me to take you to meetings or too the doctor, to all places. I need to get out of the house. We have a car, so why not use it since we are so lucky to have one. Do not feel guilty about finances. I keep telling you it's our money, not my money. Just make sure all your 'stuff' is picked up so the house does not look like a cyclone went through it. Really I do not mind doing the disshes, cooking our meals, providing for your needs." Once I asked her, "Do you mind taking care of me?" She answered, "No. That's part of the deal. If this were reversed, wouldn't you take care of me?" Would I? Would I be able to?

With this I begin to think of survival. If she were gone, what would I do? Could, or would I teach myself to drive again? Would I hire a part-time prffessional care-giver if she were to die? I am 69, and she is 66, soon to be 67. What would I do without her? Would I enter assisted living where I would have only a very small ammount of spending money? Could I give up all my freedom to live in such a place? Medications and doctor appointments, 12 step meetings, friends and family. making arrangements to see those I love, grocery shopping, support groups, and therapists, my ignorance about some computer problems, these and a hundred details of my life she takes care of and the thought makes me choak up wit gratitude. How many years have I been fooling myself about her lack of love? But does she get tired? Yes, she looks it sometimes, and now she expects me to take care of myself as much as I can. This gets tough.

Life is imperminant, and 'stuff' happens. What would she do without me? Would her family come to her aid when they have not often been there for us in the past? Would she become the "cat-lady" we joak about? How would sahe know to make sure to eat the right food? Would she eat too much chocolate? Would she gain waghit, and what about her knee that's going bad? Who would remind her to take care of herself? Who would she have to take care of besides the cats, and who would take care of her? Who would, after all, be her Pokeymon Go partner, and how could she go anywhere in the car without a friend to help her along the way driving. Most importantly, who would be her best friend when our daughter could not be expected to take care for her?

These and a million other questions flood my mind about death, about living. Do I worry too much? Our livilihood is no problem because she worked four days beyond 30 years for the US government. She tells me sometimes she hated those government assingments more than sin, but she stuck it out knowing it would pay for our old age. She was right. We are okay by any standard, and she has arranged for me in the event of her death; however, this would break my heart, but I could recover. I recovered with the death of family. This would be one-hundred ntimes wiorse. Yet, we even as are isolated as an old couple. We realize how old people are treated. The wise old person is a nmyth. Often young people look right through us, and it's worse when I walk up to the local store to buy something I must carry home. Not one person would think to offer me a ride. After all there is a pandemic on, and even without the sickness, in the past, no one ever asked if they could help me. The clerk patronizes me asking, "Honey, can you take care of yourself?" Not once has she offered to help me in any way.

Yes Toni is right, and life is imperminant.

I know Buddhism partially answeres some questions. Don't dwell in the past or the future. This is like exitential Christianity which I also follow. Kirkagard has much to say to me. I not only read the sutras, and the Pali Cannon, practice Insight Meditation, practice zazen sometimes driving into Jundo's highway,and even, "Thank you Kokuu," have continued reading some thing in " Buddhist history." Theravada Loving Kindness, Metta, is very much a part of my life, and I reach out to Kokuu, my friend for teaching me Tibetan Tonglen, otrher aspects like Jundo teaching me about society, and solitude that's Dogen and Gengokoan, Toni coes to ask about these survival skills. Without family, I would be lost. Reinhold Neighbor speakes to me of the sernity of opposits, resolution, and prayer. Jesus speaks to me, unlike the Buddha, giving me hope of an afterlife, the reality of loving others as they love me, and even love so much that one might lay down one's own life for froend(s). Will see my mother again after her death, Marjorie's mother again, and my daughter will she ever have that possibility? I np longer worry about her. She has, and is taking care of herself. Life is less a joy ride, than a joy, but not always, and dioes Jesus truly take care of me? Even Christinity addresses impermanance.

Nothing is certain, not even taxes, but only birth, suffering, hope, and death. These are both Christian and Buddhist. I know enough of both scriptures, to understand somethings for myself. Sometimes I am afraid. Sometimes I am filled with doubt. Both traditions speak to these doubts. I try to sit, and meditate daily, and I often pray. I pray for myself and others, and sometimes even combine meditation and prayer. Enough. Life is imperminant and sometimes I am afraid. Excuse this long entry because Kokuu implied that a longer entry might be okay. This will not be my norm.

Gassho
sat/ lah
Tai Shi