How To Be Sick - Chapter 1

[Onka]

Disclaimer:

This group is not part of the regular Treeleaf forum. To take part, you must have registered on the original thread (https://www.treeleaf.org/forums/show...Practice-Group) and agreed to the group rules.




Chapter 1

This week we jump into chapter 1 looking into the author's experience of becoming unwell, how it manifested for her, and some of the unexpected impacts (and opportunities?) being unwell had on both herself and her partner.

Feelings of guilt, longing and vulnerability are all feelings we're familiar with but when they come seemingly all at once the effect can hit you like a bus.
I'm interested to hear other people's experience with feelings that come up when you become unwell.
What about caregivers? If there are any caregivers in the group perhaps (if you feel comfortable) you could share some of the feelings you experienced when you took on that role or when that role was thrust upon you.

Perspectives can change when you or the person you care for become unwell. The author starts to see that life not only WILL be different but NEEDS to be different.
Is this a reasonable assumption? Do you see this perspective as succumbing to being unwell or taking ownership of being unwell?
Is there a difference?

[Onkai]

Thank you, Onka. With mental health issues it is easy to feel at fault - maybe that's also true with physical issues. Coming to terms with the fact that life is going to be different, needs to be different can release a burden of guilt. In the first chapter, her husband was compassionate although neither of them had any idea what was happening. I was drawn into her story.

Gassho,
Onkai
Sat/lah

[Shonin Risa Bear]

One hears about family members who abandon those who are suddenly in need of assistance. And one hears about family members who take on everything.

I have to have help putting on socks now, and the help comes without complaint and indeed with a kind of shining countenance; may it be so for all. _()_

gassho
doyu sat/lah today

[Naiko]

That was a surprisingly difficult read, due to both my empathy for the author’s story and feelings that arose about the beginning of my own illness. That year was one of the worst I’ve experienced. My father resurfaced after decades of no contact with me and my brother. He was dying of cancer and seeking absolution. My elderly dog and cat who had been with me since I first left home also both passed within months of each other. I am relaying all that because I thought my increasing symptoms and exhaustion were due to stress. I was angry with myself for falling apart. I was embarrassed and ashamed because of the nature of IBD. And I was stubborn about seeking medical attention because I thought it would get better if only I would tough it out. I couldn’t “allow” myself to be sick because it was (and is) extremely difficult for me to feel vulnerable.
Gassho,
Naiko (Krista)
st

[Shonin]

Today I feel the full spectrum. Anxiety. Blue Skies. Deep depression. I used to be fine with my diagnosis. It was " just another trait." Talk about karma, I used to joke with friends that if I were to go crazy i would choose schizophrenia. And then latent genetic related schizoaffective bi polar disorder with a dash of ADD and some major depressive disorder came to the forefront. They say it was a wonder that it never expressed itself before. I was not ashamed but now I am. I didn't feel helpless but today I do. And while the schizophrenia rarely shows the other traits are daily horrors I have to live. But somehow I keep trucking. Hell, put this all into words is a trigger for me.

Frankly Im just glad noone gets physically or mentally hurt by me when i do go off the track.

Normally I am hospitalized for a 6 day stay. That's the minimum at my local facility. Last time I went in i was there for almost a month and a half. People were cruel to me and I didn't know why. Overheard a conversation between one gentleman and a younger little asshole and the older man said " Everyone deserves a friend" and the young guy replied with " Yeah but he's got voices in his head" while I was standing right there. So yeah after that I feel a bit ashamed.

Now instead of letting it limit me. I need to change some things in my life. and then I will go back to owning it not the other way around. Sorry for the ramble. I meant to be short.

Dave
SAT/LAH

[Inshin]

I'm sorry for this lengthy reply, I was considering if to post this at all.
Being a carer or a loved one of a person with mental illness comes with it's own challenges due to social stigma, lack of understanding and often lack of support.
I remember receiving a "helpful" meesage on Facebook from my parents neighbour saying that how can I enjoy myself abroad when my mother is going crazy and they are fed up getting police involved. And that as a daughter I should do something.
But very often there's little that can be done. It's impossible to communicate with my mum when in full blown mania, everyone seems to her to be an enemy, there's no way she'll accept that she needs help. Swearing and being aggressive is not considered a danger to others so such person cannot be hospitalised against her will. It takes mastery at trickstery to get her hospitalised. And it's not like with a heart attack, or any other phisical illness that people will show kindness and sympathy. What you get is unhealthy curiosity and pity at best.
After my dad's death things became worse and I had to make a decision : do I cut off the ties and live in a relative stability but with guilt knowing that I'm a shit person or do I go through hell? I was a shit person for a while.
What changed?
The birth of my son and the realisation that it is entirely up to me to transform my karma so that this particular suffering doesn't affect him.
And the practice.
I remember a truly magical moment. My mum came to visit and she was a bit hyper. I found her in my kitchen cleaning and reorganising everything (one of the first signs of mania) I felt anger steaming through my ears, the need to say accusations such as "What are you doing! Are you messing up with your meds again?" But all that rage was like a next day microwaved pizza - without taste and appeal. Instead I found a freedom to say "Thank you for helping me. Would you like me to do you manicure after you finish?" As I was painting her nails we were for the first time able to discuss her treatment openly. For the first time I saw my mum with compassion, without personal agenda.
Since then there were many more magic moments of freedom like that, something that Shikantaza has to do with, I believe.
I'm not scared anymore, not as I used to be. Nowadays I say bipolar in the same way as I say flu, high blood pressure, diabetes. There's no shame in any illness. And it is my dream that the attitudes in the society towards mental health change and there will be more understanding.

Gassho
Sat

[Risho]

Wow as I read everyone's posts- this feels like a special study group. Thank you all for sharing.

Onka thank you for this week's post: I think that Toni shows how to take ownership of her situation. I don't think the surrender she is talking about is succumbing or giving up but the same type of surrender that we learn through zazen of full acceptance of where and who we are so we can take appropriate action.

Gassho

Risho
-stlah

[Kaishin]

My mind is a bit scattered now, so just some general/random thoughts. Guilt is the word that jumps out to me most. And regret. And shame. Guilt at having "inflicted" my illness upon everyone in my life over so many years, and at having passed this down to my child. Regret at all the things I've wanted to do but haven't due to my illness, and may never do. And the particular shame that comes from being a man in an American macho culture where the idea of mental illness is often met with a "shut up and man up" attitude.

Practice reveals all of this as just deceptive mentation, like any other thoughts they come together as conditions provide for them to arise... but being aware enough not to water those negative thought seeds can be difficult when overwhelmed.

My mental illness battle has been lifelong, so I don't have the "hit by a bus" perspective there. But the cancer diagnosis definitely flipped my world upside down. Being faced with potentially terminal illness is not something anyone expects, especially at a relatively young age (late 30s for me). Everyone knows they will die --but no one really believes it! Humans are funny like that.

What crushed my mind was worrying about the wreckage I'd leave behind, a wife with no husband and children with no father. I really don't think I felt that scared or concerned about my own potential pain/physical suffering...until after I recovered and realized I wouldn't be shuffling off so soon. When the worry about my family started to fade, I had to face the physical fallout and the emotional impact of them fully. I didn't handle that well, and it's still a process I struggle with, though I've mostly arrived at the understanding that life both will be and /needs/ to be different.

I feel really scattered mentally trying to communicate my response to the text and prompts (perhaps a bit of a psychological block in not wanting to think about this), but wanted to get something down to share.

Thank you all for your thoughts and stories.

-sT

[Kokuu]

I feel really scattered mentally trying to communicate my response to the text and prompts (perhaps a bit of a psychological block in not wanting to think about this), but wanted to get something down to share.

I totally get this Kaishin. I think that I generally face my illness pretty head-on most of the time, yet when I come to re-apply for disability every couple of years or so I find myself really affected by having to actually write down in black and white just how disabled I am.

I think it is probably natural that we stop ourselves thinking about it too much and contemplating our situation in detail can be tough.

Gassho
Kokuu
-sattoday-

[Shonin]

Kaishin, TY for sharing, I can totally relate. Luckily I got in touch with my MHNP this evening ( oddly at the same time my zazen timer went off) and got my meds straight. So what was a near hospitalization the last two days is now backed down to normal levels.
Dave
SAT/LAH

[Yokai]

Thank you all so much for sharing

What strikes me in Chapter 1 is that so many of perceptions, preconceptions and stories mislead us!

- Toni & her husband anticipate an idyllic vacation
- They're proud of their clever flight jumping and beating the pack (actually what probably gives her the virus)
- Their studio apartment is much smaller than they imagined
- Toni gets sick (first thinking it's just jet-lag and then just a temporary set-back)
- She's diagnosed as probably having flu, giving a false sense of hope
- She leaves Paris confident she's on the way to recovery (wrong again!)

Equally, when the pain and bereavement of chronic illness sink in, Toni will think her life is over, worthless, hopeless and with no joy to be found. This is totally understandable, but with hindsight she recognizes this as another narrative she's running in her mind.

In my late teens I was anorexic. It ruined my life for two years, before embarking on a successful rebuilding process. Anorexia is a classic example of dangerous story-telling, false perception and the invention of destructive narratives. To a lesser extent I face the same risk with my genetic disposition to low-level anxiety. It can feed unhelpful stories of fictional dragons! Things are usually not as scary as they first seem to be. Actually, many wonderful opportunities and directions have come out of being just who I am. Treeleaf is one of them! Through zazen, I'm learning not to prejudge, to examine closely (especially the tricky impact of emotions) and to say: "Not necessarily so!"

There's so many churning thoughts and feelings facing any long-term illness in ourselves or loved ones. Even a strong sense of bereavement for all that seems lost and what must be faced. Over years of hindsight, I'm realizing that things often turn out to be not what they seem. Prejudging is a dangerous game! The end can also hold beginnings. Equally we can hold onto unrealistic hopes that are actually unhelpful, instead of facing reality head-on. Apparent catastrophes can also contain opportunities. This is not to belittle the huge challenge of any chronic sickness, but experience is teaching me that things are rarely all dark and the future may shine with lights yet unseen. Arriving in NZ, my wife and I visited Waitomo caves, where you take a boat through the darkness. It is a darkness twinkling with the light of thousands of glowworms.

Sorry for rambling! I hope this makes some sense and is sensitive

Much metta to you all.

Gassho, Yokai (Chris) sat/lah

[Onka]

Thinking about the feelings of significant others/partners and how/if these relationships changed is also a very important takeaway from this chapter as well.
We hear from the author how her husband wished she was well, wanted her to join him and probably rode the highs and lows of the unknown. It is assumed that this continued once they returned home.
Bringing this disussion to the lived experiences of this group I'm incredibly humbled by your sharing and in particular some of the strategies used to reframe their relationship to both challenges and relationships with those who either experience them or are loved ones of those with various challenges.
Speaking of challenges, it's obvious that grammar is a challenge for me haha but in the spirit of group sharing I thought I'd add some more personal details about my relationship with disabilty as well as being a carer for someone. Hmmm, where to begin...

While I live with disabilities, my partner is also challenged to live with Multiple Sclerosis. As her partner of nearly 16 years we've both lost count of the amount of money we've lost by pre-purchasing tickets for various events haha. Yes, we do actually laugh about these things because what else can we do?
It's a funny dynamic we have in that we both accommodate each other, accept each other and love each other. We have both physically deteriorated so our ability to be intimate has changed and our relationship reflects that. If anything it's made us stronger as a couple and a fierce duo when it comes to the constant advocacy we need to do in order to justify our existence to government decision makers.
I knew my partner had MS when we met. She knew that I had spinal disabilities. What we didn't know was that not long into our relationship she began to have mobilty issues, I would have to aggressively advocate for her (including forming a disability collective to take on the university's disability officer), that I would sink into a deep depression, that I would come out as transgendered, or that I would start to take the university to task over a range of other issues.Around this time my partner was also forced into giving up her job due to changes in her health, one she envisioned having for her entire working life. Yes, we fought this. Yes I helped her unionise her workplace, and yes they still got away with it. To this day, some 14 years later she still can't talk about that time without crying or anxiety rising up. It remains a dark cloud that hangs over both of us.
I felt guilty that I was struggling with my own stuff instead of being able to be there fully for my partner. I felt and still feel vulnerable both as someone with disabilities and as a carer because I've constantly got the 'what if' questions running around my noggin. We have very little if any familial support and like many with disabilities have few IRL friends and they are what I'd describe as misfits too.
So what of our responses to being unwell or having disabilities progress... honestly, my partner and I laugh a lot. We laugh at ourselves, each other, and the world in general. This is neither succumbing or accepting but more a lighthearted resistance, knowing that we need to change how we do things so we can do more more often. This doing things smarter with a laugh I won't allow to be dismissive of the frustration or feelings of being overwhelmed by life. It doesn't stop the moments of self-loathing or tears either, but we do what we can to constantly prop each other up. Perhaps this lighthearted resistance is our way of taking ownership? We both knew what each other was committing too when we fell in love so I guess we will continue to deal with what life throws at us from day to day.
Gassho
Onka
ST

[Shoki]

I feel a bit like I let myself down. After taking care of my health all these years, keeping my weight down and eating healthy, I end up with IBS/colitis/lactose intolerance. Maybe if I knew I was going to get this, I would have behaved more like Keith Richards.

The story of Marianne with two weeks to live but not letting it affect her practice was really something. One of my symptoms is the sudden onset of nausea. The only fix for that, so far, is to immediately drop whatever I'm doing and eat something and maybe some peppermint tea. I don't mind sitting zazen with achy knees, a headache or a sore back, but I confess that I have cut my sittings short, zazenkai too, to kill this nausea. I'll go back and make up for it later but I feel like I wimped out. Marianne sounds like she was a lioness and I feel like a kitten.

Gassho
ST-lah
Shoki

[Shonin]

Shoki, I've cut my sittings back a little due to my illness as well. So, we are all in this together. Hopefully in a few days i'll be mostly used to my med change from yesterday. I completely fell asleep during zazen on camera. That's embarrassing. Metta to you.
Dave
1/2 SAT /LAH

[Shoki]

Shoki, I've cut my sittings back a little due to my illness as well. So, we are all in this together. Hopefully in a few days i'll be mostly used to my med change from yesterday. I completely fell asleep during zazen on camera. That's embarrassing. Metta to you.
Dave
1/2 SAT /LAH

Thanks, Shonin. Feeling kind of OK yesterday and today so I should hopefully be able to make zazenkai tonight. One thing about Treeleaf is that it does ask for a commitment but Jundo doesn't seem like a drill instructor demanding us to torture ourselves.

Gassho
ST-lah
Shoki