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  #11  
Old 10-17-2012, 06:24 AM
GalaGirl GalaGirl is offline
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Alright. Sounds like you know some of what feeds your soul then and what those soul practices are. See? That's something! Some folks do not know.

Is there a way to arrange time to do these things then so you can commune and do what you gotta do to refill that soul bucket and do some faith tending there?

Is any of those things, things you can share with the young man in question? Your lady? Photography? Perhaps photos of the things you love? Your hunting and animals and so on? I don't know if it could help but there's a book for caregivers called "Creating Moments of Joy." I told my GMIL I was pregnant a zillion times. She always forgot because of her alzheimer. So I'd just tell her again and she'd beam like it was christmas morning or something. My dad faces mental illness now so... even though not the same thing exactly perhaps checking that out of the library could help you create moments of joy for self or your people? I'm sure their spiritual healths could use some uplift. I don't know if there's resources books like that created for lymphoma.

I've done 5Ks for patients before -- I don't know if that's a doable in your world and if that would create a moment.

Crying is ok -- it's just another expression of emotion. So if you sense a floodgate thing in there somewhere and aren't yet ready to open it -- maybe create the time/space to approach that so you can open it on purpose and let it flow on through? I like doing that when it's time for release. I know I have to steam valve or else I risk popping at inappropriate times Bottling up is not option. But waiting to get to the right time/place of my choosing -- that helps me to bear it til I get there. Then I get there and just let it rip!

My! DH is so used to me there he doesn't bother with dainty things like kleenex. I've sobbed all over the man -- he calmly just gives me the shirt off his back sometimes because it's a much bigger hankie. Well, after nearly 20 years of living there's been those moments shared -- births, deaths, illness, what have you. I am glad you continue your relationship with you Dad in mind, heart and soul even if he's not long with you in body. I have a few of those myself.

I'm going to bed and I'll sleep on it and see if anything pops up.

Did you need stories? That's another spiritual practice too -- the spirit buddy thing and exchange of experiences in similar vein to aid someone else facing the thing NOW.

Is there something you want to know about in particular?

I know I'm fishing in dark waters there a bit because I don't know you very well. But I figure if it helps, it helps. If it doesn't, well... it's still something?

Glad to know it helps you somewhat. Thank you for the feedback. And you are welcome -- this business of being so very Human is sometimes a very bewildering Experience.

hugs,
GG

Last edited by GalaGirl; 10-17-2012 at 06:34 AM.
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  #12  
Old 10-17-2012, 06:16 PM
wokeupconfused wokeupconfused is offline
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This is an organization I have recently started following on Facebook. I like the attitude, and the will to say how you feel about this disease.

It does seem to help with some of the anger I have about this issue.
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  #13  
Old 10-17-2012, 07:18 PM
GalaGirl GalaGirl is offline
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Awesome!

Yes. He may have cancer. Cancer does NOT have to have him.

I know that attitude with my own chronic patient crap. It's a lot different from acute illness -- the being a chronic patient thing. There's not cure, there's only management.

Tapping some of the dx anger and reframing it for the forces of good, something constructive -- that's a plus.

WTG!

GG
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  #14  
Old 10-17-2012, 07:39 PM
wokeupconfused wokeupconfused is offline
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Quote:
Originally Posted by GalaGirl View Post
Alright. Sounds like you know some of what feeds your soul then and what those soul practices are. See? That's something! Some folks do not know.

Is there a way to arrange time to do these things then so you can commune and do what you gotta do to refill that soul bucket and do some faith tending there?

Is any of those things, things you can share with the young man in question? Your lady? Photography? Perhaps photos of the things you love? Your hunting and animals and so on? I don't know if it could help but there's a book for caregivers called "Creating Moments of Joy." I told my GMIL I was pregnant a zillion times. She always forgot because of her alzheimer. So I'd just tell her again and she'd beam like it was christmas morning or something. My dad faces mental illness now so... even though not the same thing exactly perhaps checking that out of the library could help you create moments of joy for self or your people? I'm sure their spiritual healths could use some uplift. I don't know if there's resources books like that created for lymphoma.

I've done 5Ks for patients before -- I don't know if that's a doable in your world and if that would create a moment.

Crying is ok -- it's just another expression of emotion. So if you sense a floodgate thing in there somewhere and aren't yet ready to open it -- maybe create the time/space to approach that so you can open it on purpose and let it flow on through? I like doing that when it's time for release. I know I have to steam valve or else I risk popping at inappropriate times Bottling up is not option. But waiting to get to the right time/place of my choosing -- that helps me to bear it til I get there. Then I get there and just let it rip!

My! DH is so used to me there he doesn't bother with dainty things like kleenex. I've sobbed all over the man -- he calmly just gives me the shirt off his back sometimes because it's a much bigger hankie. Well, after nearly 20 years of living there's been those moments shared -- births, deaths, illness, what have you. I am glad you continue your relationship with you Dad in mind, heart and soul even if he's not long with you in body. I have a few of those myself.

I'm going to bed and I'll sleep on it and see if anything pops up.

Did you need stories? That's another spiritual practice too -- the spirit buddy thing and exchange of experiences in similar vein to aid someone else facing the thing NOW.

Is there something you want to know about in particular?

I know I'm fishing in dark waters there a bit because I don't know you very well. But I figure if it helps, it helps. If it doesn't, well... it's still something?

Glad to know it helps you somewhat. Thank you for the feedback. And you are welcome -- this business of being so very Human is sometimes a very bewildering Experience.

hugs,
GG

I am making time for myself as I can... I spent yesterday morning in the woods, hiking, etc...

You would think I would know how to handle death and medical issues, after all my mom was a nurse for 25 years, my brother and his wife are Critical care RNs, one sister is a Hospice Nurse, another sister is a retired cardiac nurse. Somehow all the information missed me on how to deal with this "stuff".

As for crying... I do that, privately. I still feel like I have to be the strong rock for everyone to lean on. So they feel safe and secure in the world. It has been my role since my Dad passed away, not sure how to change that. Sometimes being the oldest boy, sucks big time.

I will try to find something to do to for them... The boy has no interest in anything I do for relaxation.. video games and punk rock music seem to be his only interests...

I do have some very nice "photos" that I would love to print, and give to my lady (lets call her "R"). She is an artist and loves my photography.

She wants me to be able to show off my work, but I do not have a place to show off some of it, as it is the artistic nude work, or bodyscapes and to many "normal" people look at it as porn....

Thank you again, and I would love to hear some things you have discovered to help deal with issues...
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  #15  
Old 10-18-2012, 12:43 AM
GalaGirl GalaGirl is offline
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Quote:
Thank you again, and I would love to hear some things you have discovered to help deal with issues...
You do for your people in what THEY like to do. In YOUR style. So if the kid likes punk rock music and video games and you like photography, make pictures of the things that HE likes then.

For yourself -- check universities, coffee houses, adult stores -- places where fine art nudes would be more welcome. I do not know where you live but you know you could just throw your images in low res to display on the Internet. Shine your light wherever it is you like.

I find that every family culture is different. For instance my DH's family does NOT really talk about these things. I have witnessed a few passings over the years and there's a lot of... internalizing that I do not think is healthy or needed.

Where my fam? It's like a hobby. Illness and death come along like donuts and coffee. And my mom has the Death Drill. Every time I go over there the gives me the tour -- "here is my jewelry, here is my folder of papers, here are the account numbers, THIS is my preference for funeral home..."

We roll our eyes and do the Dead Drill to satisfy her.

I tease her that she forgot to lay 2 Kleenex in between the pages of the Dead Folder so when my sis and I have to deal with it we do not have to fight over tissue. Mom laughed and punched my arm.

DH teased her that she ought to have polaroids of her flowers. She stopped to think about it and said "What a great idea!" and we laughed and rolled our eyes and full expect a new addition to the folder to include pix of funeral flower arrangements!

Even as we yank her chain we appreciate her effort to plan and make the transition as easy on US as possible -- life without mom. We have to get our own shit in order. One of the greatest gifts you can leave your people is to NOT to have to suffer too much confusion at that particular Life Change. The passage into death and sending a loved one off. It's not like you do it all the time unless you are in the business like a funeral home director. Most people only do the big stuff a few times first hand -- births, weddings, deaths. That's why the milestone markers are milestones.

My family culture also tends to the dead -- visiting resting places, bringing flowers, etc. In memorium on the birthdays of the departed, the funeral date, holiday, day of the dead, whatever. Just when the mood strikes. We're not THAT formal about it. DH inclines toward having a wake and he's breaking with his family culture in wishing to be cremated. I know I'm being cremated and I'm down with the wake thing.

Why not celebrate my exit just as my entrance to the ongoing party on Earth was celebrated?

When we could afford to, I made DH send his mom a check to order flowers for his grandmother's bday for her resting place. It's not part of his natural family culture. But he rolls with it and I know it comforts his mother. I think he just prefers some of how my family copes with things.

So if your family culture is not normally one that speaks of these things -- you could choose to change the culture! Someone has to be first.

His mom tends to look me up for Hard Conversation. Hard Conversation gets easier in time to do -- you just speak honestly from the heart. It's Hard to do still. But. It gets easier to do Hard.

I am first born and I bear the burden of being "the rock" too. But me? I will rage, shout, stomp, cry, invoke words of power and carry on. Totally spill all my marbles. Then I will pick them back up and STILL do the thing that needs doing. I've always done that. And this is what I wish to keep on modeling for my child, now that there IS a child watching me. Yes, life is truly horrible sometimes. Yes, life is truly wonderful sometimes. And our people? We keep on keepin' on. We do our duty. We do not shirk. We can do it in our own style, but hell. We damn well DO it!

You are expected to have moments of marble spillage. It happens. Such is life. The point? You get back up again. The strength is not in the never falling down. The strength is in the always popping back up again.

I tend to embrace Life in all its glory.

It's ridiculous, maddening, bizarre. It's infuriating, amazing, transcendent.

There are times in my life where I just have to have one of those wild hair moments. Push it out to the edge, go out to the border. I've had my adventures when I choose to go have them. DH always laughs at me -- because he's been along for most of the ride.

He knows I just burn. I burn with not a deathwish, but a huge lifewish. I want to live it large, live it in color, and live it passionately. I only get the one.

And for me to enjoy the Hang Times at the Forge where I just BURN with great pleasures of living? There must be a balance and I must Hang at the Forge where I just BURN with the angst of living. I want full spectrum Life Pendulum Swing.

That is the price of admission. And that is the price I gleefully will pay. I only get the one. Life is not a dress rehearsal.

One of my favorite quotes is

Quote:
“This I choose to do. If there is a price, this I choose to pay. If it is my death, then I choose to die. Where this takes me, there I choose to go. I choose. This I choose to do.”

― Terry Pratchett, Wintersmith
One of my fav 'keeping on" kinda of songs? Tubthumping. Lyrics here.

Another one -- Bang a Gong. Lyrics here.

Sacred is wherever you find it. Religion is wherever you choose to receive it. You choose your things in your Life.

And yes. I take the drink and raise a toast -- to my people, living or dead.

I know they will do same for me when time comes. That in of itself is great comfort -- this business of being oh, so Very Human. You never are being Human alone.

In YOUR process? You've just begun your process. You may not be at the tub thumping gong banging place yet -- where you have marshalled together to get back to be makin' your noise to add your voice to chorus on this side of the deal. So what? Make your noise on that side in the way you need to make it!

That "making a joyful noise unto the Lord" business? Even if you do not subscribe to that belief system? There's something there. But as a science person -- I feel it has to have the match on the other side. "When you make a terrible noise unto the Lord." It MUST happen. For there to be balance.

But that's alright. I can bang a bit extra for you on this side til you are ready to rejoin if you like. Should we happen to cross in Life Pendulum swing and I'm heading for the Hang Time of the Ugh side and you are upswinging to the Hang Time of the Good I'll be glad to slip you the high five.

Swing on, brother. Swing on.

No. Not Easy to feel. Not not easy to endure. But a broken heart still keeps on beating all the same. Your volume may be low right now, but you aren't done banging. Not yet.

Quote:
"Just when you'd think they were more malignant than ever Hell could be, they could occasionally show more grace than Heaven ever dreamed of. Often the same individual was involved. It was this freewill thing, of course. It was a bugger."

Neil Gaiman and Terry Pratchett, "Good Omens"
Authentic living. It's powerful stuff.

I see you.
I see you.
I see you.

Namaste,
GG

Last edited by GalaGirl; 10-18-2012 at 12:58 AM.
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  #16  
Old 10-19-2012, 03:46 AM
wokeupconfused wokeupconfused is offline
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Been a super long day... am soooooooooo tired. Seattle Childrens Hospital is great, but we left the house at 4 am, and got back home at 7:30 pm. 125 miles each way, half of that in Seattle traffic.

He is staged at 2A, which means he is low risk. Cure rate is 90-95%

Now, how do we survive while commuting that distance every week and being gone from the house for 3 days at a time while he gets treatment??? We have two dogs that are as much a part of our family as they could possibly be....

Kid is still in denial really. R is an emotional wreck! I winked at her earlier today across the table, and she started bawling. I talked to her about doing a photo journal of this, and she liked the idea... so that starts tomorrow.

Still angry, but am so tired right now, not sure how to express it....

Thank you again for seeing me.
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  #17  
Old 10-19-2012, 04:01 AM
GalaGirl GalaGirl is offline
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Hrm. This is all out of my league -- not had it in my personal experience with a sick kid. Could the doc give tips?

Is is possible to look into near the hospital stay places -- ronald mcdonald houses or something? So you drive up one day but come back the next? Not have to do it all in the same day?

I saw the writing on the wall with my dad's mental health probs. I started attending a Unitarian church -- both for the uplift and for the being in community. When the fit hit the shan I was SO grateful to be able to make one phone call to the church and here came the casseroles, the sitters, the smooth the way people. They could not solve my dad problem but they COULD come out here to mow my lawn and pick up THOSE sticks for me so I could devote my focus to dad.

I've put in my time doing the food thing for the new mothers, the funerals, the shut ins, etc. So when it came time for ME to collect, I was totally fine in that department. Do either of you have church connections or friends who have them who would let you "borrow" on their church network in your time of need?

What about support via the school network? Would reaching out to his classmates help? At least turn up a dog sitter?

What about your work network? Would people at the office turn up a plant waterer or dog sitter?

Most of the time I find people are willing to help but don't now HOW to help or are waiting for the invitation to help because they do not want to intrude on what they perceive as a delicate time.

Hang in there.
GG
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  #18  
Old 10-19-2012, 04:58 PM
wokeupconfused wokeupconfused is offline
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Seattle Children's Hospital is great. They talk to you so you can understand everything. They also assign you a Social Worker from moment 1, to help with anything and everything you need. Yes, they can help with lodging, some transportation stuff, and even some food.

The Social Worker is also going to be there to help the Kid, deal with things, get him any and all help he needs, and to work with him on his Make a Wish thing. (seems every kid diagnosed gets this now) not just some, which is really cool.

We have a very strong community network here, so am going to put out some feelers for help, specifically dog sitting when we are in Seattle, and see what other support is out there. We are not well off, probably in the lower middle class tax bracket right now..

I am heading into my woods again tomorrow. I need to find a log to sit on and just decompress. I can not do that with R around, she feels guilty like she is causing my pain, and stress, no matter how much I assure her that is not the case.

Again, we both have issues with organized religion, and Christianity as a whole, so no, we have no church connections.. however, again, the community is a tight knit as any I have seen. So I am hoping without to much effort, the help will begin to trickle in.

I am off to go exercise my dog... he was locked in his crate for over 12 hours yesterday while we were gone... he was sure the world had ended, and he would be left to starve, lmao... So some extra attention for him as well.
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  #19  
Old 10-19-2012, 06:36 PM
GalaGirl GalaGirl is offline
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Tap it wherever you find it! Glad you have a social worker and glad you are heading to the woods for decompression!

How about hobby networks? If you are a hunter, or if she's a (quilter? Dancer?) whatever -- could those networks of people also be tapped for helpful things? Mow lawn, get grocery, check mail -- whatever.

Or mailing lists and online forums for kids health things in your area? He's too old for baby playgroup lists... library? I know mine sometimes puts on alzheimer caregiver things so putting on things like kid health stuff isn't too far fetched. Maybe your county extension?

Just trying to brainstorm.

Keep shining on over there! It sounds like you actually do have lots of community resources -- just trying to connect the dots maybe?

GG
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  #20  
Old 10-20-2012, 03:59 AM
wokeupconfused wokeupconfused is offline
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Not so sure, I am shining... but dealing with it.


He is a typical teenager, not wanting to admit there is a serious problem.. He says he refuses to do certain things, that the doctors need him to do, like eating right, etc..

We are still trying to figure out how to get things figured out logistically. Gonna be rough, no matter what.. The Kids dad is a total loser.. has seen the kid once since last Christmas... thinks being the Kids best bud, and buying him things is being a father.

We do have some resources available..

Now, if I could just say something to R without making her cry.. sigh..
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