How to be Sick – Chapter 9, part one (p79-87)

[Kokuu]

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And so, to what I think is one of the most challenging parts of dealing with chronic illness or caring for someone who is – Equanimity!

Toni divides the parts of illness we often struggle to be equanimous with into three categories:

1. The, often well-meaning but uninformed, unsolicited advice received about any illness and how it can be cured
2. The uncertainties of illness
3. The loss and grief experienced as part of long-term sickness

The first of these categories can be one of the biggest bugbears to people who are ill. It is hard enough dealing with illness without it constantly being suggested that you might be doing better by someone who has read something in the Lifestyle section of their favourite magazine or newspaper.

To be fair, I don’t think anyone minds that someone is thinking of them and if this information was offered in the manner of “I know you have probably tried everything but I saw this mentioned and thought of you” but sadly it is most often more like “You need to try such-and-such” as if we personally have no idea about our own illness, or the illness of the person we care for, and what works for it, and a cure is something very easy that we should really have thought of and recovered already.

Even worse, this kind of ignorance also comes from a many medical professionals. I moderate a Facebook support group for people with severe chronic illness and this weekend we had one of our members posting in extreme distress from a hospital ward in which she was being refused hydration unless she was "willing" to sit up and likewise left untoileted for an entire day. This morning, a nurse said to her face that all she had was a case of “Liyabetes” which the patient was unsure whether it referred to lying or laying around but was offensive and unprofessional regardless. How do we even start to deal with such things with equanimity when we are in a place of vulnerability?

Anyway, I want to hear your stories of all three categories and whether you have found ways of dealing with any and all of these with equanimity, including the hopes and disappointments of treatment and signs of recovery that turn out to be false dawns and working with new doctors and other professionals.

Do you have any strategies for dealing with unsolicited advice, illness uncertainties, treatment hopes and failures, and loss on your own behalf or on behalf of the person you care for?

Have you found these have become easier to deal with over time?

Does sitting help you find a place of equanimity, or that reactive emotions last for shorter periods?


Please feel free to answer any or all of those questions and/or anything else that came up for you in respect to the first half of this chapter.

Gassho
Kokuu
-sattoday/lah-

[Shonin Risa Bear]

Do you have any strategies for dealing with unsolicited advice, illness uncertainties, treatment hopes and failures, and loss on your own behalf or on behalf of the person you care for?

Have you found these have become easier to deal with over time?

Does sitting help you find a place of equanimity, or that reactive emotions last for shorter periods?

Yes, yes, and yes. For decades I was known as the strong one, what our family called the "war chief" in situations, and able to put in 12 hour days raising food etc. That's all evaporating. to help others adjust to the new reality, I talk about how useful it is for them to know how to and practice doing all the things as if I were not there, and to accept the gift of those spontaneous moments when I can pitch in. The most difficult conversations were with my local sangha, which had envisioned me as taking on the doshi role and other practice positions. I feel I don't know when I'll be able to meet scheduled obligations, and that it would be wise for the group to work around me; they've begun to hear and understand. Family and friends already do.
Sitting is my anchor. It doesn't look like it does in the Fukanzazengi, but it is what it is. As when Tokimune sat before taking on the Mongol invasion, correct action proceeds from correct rest.

gassho
ds sat today and lah

[Kokuu]

Thank you for your answer, Shōnin. Working with others around their expectations is another really important area to talk about and it sounds like that is something you are dealing with well, and are being heard.

That is lovely way of putting it that others should be prepared to work around you and see it as a gift when you can contribute. I operate in much the same way with my children when it comes to cooking although have to be careful not to cook on the same day too often or it starts to get expected!

correct action proceeds from correct rest

I can definitely identify with that, and also confirm that the opposite is also true!

Gassho
Kokuu
-sattoday/lah-

[Shonin Risa Bear]

the opposite is also true

My father-in-law's motto! _()_

gassho
ds sat/lah this morning

[Naiko]

Practice must help me develop more equanimity although it’s not always apparent to me. In the past I would become unreasonably agitated and refused to discuss surgical intervention for my illness. (I once told my doctor I’d rather die than undergo surgery.) When my doctor last recommended surgery, I felt a moment of pure, calm acceptance....and then a “no” surfaced. lt felt scripted though, as if I had to object because everyone expected it of me. It didn’t take long to realize how lucky I was to have an option like this after being told there was no medication left to try. I think I’m better at assessing realty vs. my wishful thinking. Anyway, the past few years have provided lots of challenging moments to practice. Often I have been surprised at how cool I’ve been. There have also been some really embarrassing ones. What happens when my disease roars back? I don’t know.

I’ve also learned not to take “helpful” advice personally. People offering it often have mixed motives. Yes, sometimes it comes from a place of loving concern, but there’s an undercurrent of anxiety present. They don’t know how to be with suffering. It can also make them anxious for themselves: if it happened to you, can it happen to them? They want reassurance that you can be cured so they could be too. I see this anxiety surface in the vegan groups I’m in. Some people adopt veganism with the expectation that it makes them bulletproof (ah, the illusion of control in a scary, unpredictable universe), and if someone becomes ill, they must be doing it wrong. They say some appalling things. Let it roll like water off a duck’s back.
Gassho,
Naiko
stlah

[Kokuu]

Hi Naiko

That sounds to me like a good thing you are more open to considering treatment options, even if you eventually decide they are not for you. We are indeed really lucky to live at a time when there are so many medical options and in countries where there are sufficient resources for them to be a possibility.

I think you are totally right that a lot of advice comes from a place of wanting to fix things. One of the hard elements of compassion is to be able to sit with suffering that has no fix, or no easy fix, but sit with it anyway, whether it is our own or someone's else's. People almost certainly want to feel that if they became sick in the same way they have the answer already. Looking at in in that way, I can imagine it is easier to feel compassion for those people rather than annoyance (or, in the way of Zen practice, both at the same time!).

Gassho
Kokuu
-sattoday/lah-

[Onka]

Do you have any strategies for dealing with unsolicited advice, illness uncertainties, treatment hopes and failures, and loss on your own behalf or on behalf of the person you care for?

In all honesty Kokuu, Shikantaza is the only strategy I have left and I'm kinda counting on it. I feel like screaming at the top of my lungs that my partner and I aren't okay, we're not just "getting on with it" and we desperately need help, a LOT of help.

Have you found these have become easier to deal with over time?

No and Yes. As my partner and I get older everything becomes harder and I feel that we are barely treading water most of the time. Shikantaza has its ups and downs as life challenges do as well. I find that I apply a Samu practice mindset to most of my day both in order to get things that need doing, done, but also as a way of accepting the reality of each moment.

Does sitting help you find a place of equanimity, or that reactive emotions last for shorter periods?

Sitting has no doubt had a positive influence on how I react to things but I'd be lying if I said I'd found equanimity in any but odd moments.

[Shonin Risa Bear]

Here is a thing by Roshi Joan Halifax that I have found helpful: https://www.huffpost.com/entry/compassion-_b_1885877

gassho
ds sat much of the morning and some digital lah