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A No Fault Divorce from Reality

Nursing Home Motivations: to Write and Wrong

I get a lot of things wrong. I'm human. Perhaps I get more things wrong, than right. I don't know. And I don't even know if that matters. But really, what does matter here? What is the point of being alive? Why do we continue pushing forward, especially when there are more reasons not to?

I am going through a life experience that differs from most of you (right now). Sure, each of us will get there, or rather, get here eventually… if we don't first die suddenly in a car accident, or from a massive stroke. Many of us will inevitably find ourselves alone and isolated and not quite sure if anybody still cares about us. It happens. It's happening to tens of millions of elderly and/or disabled human beings right now, across the globe.

So why am I even bothering with this, writing a blog? What makes me so special that my story matters more than anybody else's?

Reasons (do I provide any value?)

I feel there's a void to fill. A gap. A lack of perspective from a person in my current situation (a bed-bound, severe M.E. sufferer who enjoys and is somewhat capable of writing). And I feel as though I can share and accurately describe what's going on in my world, allowing the reader to experience what I am going through… what my eyes see, how my body reacts, and how my varying emotions handle the daily ups and downs.


Why I Thought I was Doing This

Clearly, I want to write, yet I'd prefer to write in (and amongst) the relative safety of my fellow sufferers, the ones who understand. Otherwise, I'd start a blog out there somewhere else, amongst the un-afflicted.. the insensitive, the not willing or not yet capable of understanding this illness. Or, is that something I should be doing instead? Would that be more beneficial to the group, or the cause, if I were to publish articles snd anecdotes out there in the real world?

If somebody thinks so, set me up. Create a webpage for me on the worldwide web. Let's get moving on this while supply lasts!

So, why again am I blogging? Why even bother sharing? Why not keep it all to myself.. these words upon endless series of words?

I feel it's my duty and responsibility to fill in the blanks, as I, and others of us in the exclusively bed-bound community reside in a place likely unfamiliar to most. I've been wanting to do this for the past few years. A call to attention? A call to action?

Hmmm…

Are we unseen? Are we unheard? Not entirely.

Do we suffer more or less than anybody else? Not necessarily.

Do we suffer differently?

Yes, I think so. And I suspect the vast majority of others fail to realize the unique difficulties faced daily (not even including a nursing home stay, in my case) for those of us in a severe or very severe M.E./C.F.S. state. And I believe that's something I can bring to the table (not that I'd be able to get to the damn table in the first place… and even if I could, I'd not be able to eat anything once there.. haha!)

I'm not seeking out sympathy (although I do appreciate all forms of encouragement, I mean.. are there any humans who do not?) but, perhaps I am seeking attention. Yes, on some level I wish for others to acknowledge my existence, to know me as being human. Nope, I cannot right now exist in the real world as others do. But here? I am nearly made whole. I am amongst the others living, fighting, researching, hoping, helping and holding imagined hands. We're part of a community doing the best we can to ease unnecessary suffering. And I wish to be part of the solution, not the problem.

My voice, your choice.
Howard
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Comments

christiankatz
I've really missed your blog posts, Howard, and it's so good to see you back. Hoping you'll continue and know how much we really care about you and your circumstances. You truly contribute a lot to our lives, and we value you.

What you said, "Many of us will inevitably find ourselves alone and isolated and not quite sure if anybody still cares about us." hits home now, as I'm always alone and isolated, but okay with it. Mom takes me to appointments. though, I feel like a burden. However, I know one who cares up there above the skies and that's enough for me.

I have to admit, I'd rather be home alone all the time, in control of the noise and light to some extent than where you are, although I believe I'll be in your situation someday, so you are helping me mentally prepare. Thanks for posting again.
 
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Rufous McKinney
These feelings, these emotions we all have them. Your words may be your own, your experience is uniquely yours. And nobody else can own your personal suffering.

But you put words to things we all experience, in this universal way. And also in your own unique way. And also sometimes, you share very personal things, which are somehow unique and moving. Thats what makes this form of expression valuable. Its authenticity, including sometimes screaming from the Pain of it All.

I'll just point out the obvious here- we are all strangers to each other yet we are also dearest friends. It feels like both are true.

So we are hurt when a stranger mis understands or projects and we suffer.

I make comments here and there in PR and often I frequently erase them, after I write it. Am I the only one?

Many of us are very sensitive, very injured, somewhat unable to process external pressures, due to our energetic vulnerabilities. Or whatever all this is.

So I would wish that, once you've recovered from the vulnerable feeling, that you would return to being Howard who has things to say, perspectives and views which interface with others and adds meaning to Your Life, and the lives of others.

Now regarding Public Blogging....I see you as having a unique perspective and way of expressing which in fact should GO PUBLIC. Yes, by all means tell the world about ME, being severe and what this reality is like. And how you gained so much wisdom from such an experience that one DOES NOT want to sign up for.

But I'd say you'd be modifying your approach for a more public venue.

there is a civic Duty here- to share, in order to help other's heal. Its a means. A route to Service.

I would hope somebody could help you set up a web site or what have you and an external blog.

The personal saga of a living human, without the emotional component, is a story thats missing something important.
 
Zebra
Hi, @Howard,

I'm delighted to see your post this morning.

"It seems everybody else is able to deal with life on life's terms, no matter the circumstances."

I don't think that's true, at least not for me!

However, there are many truly remarkable people on PR whose perspectives, coping techniques, and general way-of-being in the world are quite extraordinary.

I struggle and strive to emulate them, while also participating in talk therapy for my own unique circumstances.
 
Rufous McKinney
Zebra said:
"It seems everybody else is able to deal with life on life's terms, no matter the circumstances."

I don't think that's true, at least not for me!
Click to expand...


I recall using an analogy, a few years ago, that I feel like a butterfly who has been pinned.

This crime happened when I was a child, this mistake, that when given a butterfly net and kill jar for your birthday, you go forth and Kill the butterfly

Only later, often, its not really dead, there pinned to the drying board.

Probably the first truely moral crisis I ever faced. Knowing that was wrong.

So I got fed up with feeling this way personally. And I guess this is where we do all this internal work and mostly, it holds, mostly it helps.

Then, we are reminded we are just fragile butterflies, all of us.
 
Rufous McKinney
Rufous McKinney said:
Now regarding Public Blogging....I see you as having a unique perspective and way of expressing which in fact should GO PUBLIC. Yes, by all means tell the world about ME, being severe and what this reality is like.
Click to expand...

Wanted to just add that perhaps you want to blog about something else all together!

I"ve been pondering this topic generally, here locally. Because there are some things I need to write up, opinions that need to get out there.

so there is your real self, and perhaps your Ghost Writer Self.

Those selves may be incompatible, or needing to express in differing arenas.
 
L
Hi @Howard. It's so good to see that you're back with us again....everyone needs time to him/herself to make sense of what's happening at a certain time in one's life. The comments from people have been exceptional.

Being older, and my husband even older yet, I do know the feelings you're having. People assume that we'll feel a certain way after we reach a certain point in life. Not so....if anything the changes are even faster and more painful than earlier.

We've seen so many friends come and go that it's impossible to tell who's still here and who has gone. Plenty of widows, that's for sure. We get aggravated by those we love, help where we can (and writing is how you can do that), and generally prep people for life AS IT IS. Laughter, plenty of laughter can accompany that and should. We need a balance.

Still, some things are so hard that we can't make a decision, they're made for us and we learn to flow along that river. I do believe that loneliness is part of the human existence, experiencing the unexpected and somehow learning and making peace with all of it. If we don't do that, I feel that what we've lost something precious to us and I'm not ready to ever stop learning.

Like it or not, Howard, at present you're our Reporter on the Scene. You're right, you need and you also deserve encouragement. You're more than a body in a bed, you're a person with worth, a multi-talented one at that. Expose your feelings, mull them over and share them with us b/c we care about Howard. I'm sure a lot of the men do too....it's just their words are shorter and maybe there is a component of being the same sex mental transference. I don't know about that, but I think your words touch a wider group than you think.

Has it ever occurred to anyone that we may actually be the ones living life? We're not just caught up in the outside world (although it's good to keep that part of us interested), but understand feelings of others and even ourselves that others may never, ever be able to? I feel even more alive b/c of it.

None of us has the answer to your situation, we can only offer understanding and encouragement. Please accept it. Yours, Lenora.
 
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L
Rufous McKinney said:
These feelings, these emotions we all have them. Your words may be your own, your experience is uniquely yours. And nobody else can own your personal suffering.

But you put words to things we all experience, in this universal way. And also in your own unique way. And also sometimes, you share very personal things, which are somehow unique and moving. Thats what makes this form of expression valuable. Its authenticity, including sometimes screaming from the Pain of it All.

I'll just point out the obvious here- we are all strangers to each other yet we are also dearest friends. It feels like both are true.

So we are hurt when a stranger mis understands or projects and we suffer.

I make comments here and there in PR and often I frequently erase them, after I write it. Am I the only one?

Many of us are very sensitive, very injured, somewhat unable to process external pressures, due to our energetic vulnerabilities. Or whatever all this is.

So I would wish that, once you've recovered from the vulnerable feeling, that you would return to being Howard who has things to say, perspectives and views which interface with others and adds meaning to Your Life, and the lives of others.

Now regarding Public Blogging....I see you as having a unique perspective and way of expressing which in fact should GO PUBLIC. Yes, by all means tell the world about ME, being severe and what this reality is like. And how you gained so much wisdom from such an experience that one DOES NOT want to sign up for.

But I'd say you'd be modifying your approach for a more public venue.

there is a civic Duty here- to share, in order to help other's heal. Its a means. A route to Service.

I would hope somebody could help you set up a web site or what have you and an external blog.

The personal saga of a living human, without the emotional component, is a story thats missing something important.
Click to expand...


Beautifully written, @Rufous McKinney, except that I feel most people whether they like it or not will have signed up for an experience that may topple them forever. Sure, some have it later in life, but at least we have it on grounds of moving towards it instead of slam!, it has arrived.

And @Howard, no, I've never, ever felt that I suffered something that others won't go through....somehow. Perhaps one will die suddenly, but since we don't know what comes afterwards, they may experience all of the feelings we've have time to sort out over the years, but in a different way. The one left behind are the ones who suffer in our present world.

There are times when the multiple questions take a very long time to come to terms with....but we do because there is no choice. The more we think about it, the more acceptable it becomes. (Not to become obsessed with them, but to know the questions exist.) And then we're exposed to something else that sends us down another avenue of thought. If we're lucky, we find something to laugh about, pray about and be thankful for. We try. Yours, Lenora.
 
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Howard
Theories

It sometimes feels wrong and weird being a guy and writing emotionally. It seems there's a reason why most men don't go there… lol.

But as it relates to creativity, there's an advantage.

To optimize creatively the best artists (musician, writer, painter) utilize both their masculine and feminine influences to their fullest extent. The more able the artist is to meet in the middle (attaining a 50/50 mix), the more creatively capable they become.

Now, this seems true to me, but I don't know. Really, this is not knowable. But I used to be far more dependent upon the masculine side of things.. and I was most assuredly lacking this balance.
 
Howard
christiankatz said:
I'd rather be home alone all the time, in control of the noise and light
Click to expand...

As always, thanks you. It's definitely an abrupt change. But yes, the noise is the thing for me.

Rufous McKinney said:
I make comments here and there in PR and often I frequently erase them, after I write it. Am I the only one?
Click to expand...

Very well written response. :)

For every three posts (or three blog paragraphs) I write, only one ends up being posted. I always ask myself if what I am about to post has value to anybody. A lot of times, it doesn't. The writing may please me, or be clever, yet remain wholly unnecessary for anybody else to read..

Rufous McKinney said:
So I would wish that, once you've recovered from the vulnerable feeling, that you would return to being Howard who has things to say, perspectives and views which interface with others and adds meaning to Your Life, and the lives of others.
Click to expand...

I've got to recalibrate on the emotional stuff. In what way, I do not know. Although, I'd much prefer to feel whole when I write, as I'm certain each of you do as well. I'm sure there's a thin red line… too bad I am often colorblind! Lol

Zebra said:
while also participating in talk therapy for my own unique circumstances
Click to expand...

Thanks. I am forever piecing things together. Being here helps. My talk therapy consists of imaginary interviews and conversations between myself and famous prominent others (yes, weird).

lenora said:
Expose your feelings, mull them over and share them with us
Click to expand...

Thank you. And yeah, it's tough sometimes because I just go off on this thing and I end up wherever, and it's just a series of angles and images referencing vague quotations while seeking out cohesion. And only at that time, some sense is made. But really, the joy comes out from letting go and letting flow.

I appreciate your thoughts on the matter. :)
 

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