The key...

Hanging from my rear view window is a lanyard with a keyring on it.  The lanyard is purple and I chose it out of the bin of freebies at a convention because Becky's favorite color used to be purple.  The keyring on it was a gift from my cousin Daniel that is a photo (now faded) of Kashi and I at Becky's wedding.  The key on the keyring is the key to Becky's old house.

Once, when I was visiting and were out and about, her husband suggested I go ahead on to their home and he would follow.  I cannot remember the why of that suggestion, but what I do know is that I told him I would need a key.  He was surprised that I did not already have a key and promptly gave me one.  I remain floored by his actions and his attitude.  It remains one of my most prized possessions even if it would not actually open the door to the home where they now live.

After I graduated from high school, I never had a key to my parent's home.  In fact, after my parent's divorced, I never had a key to my father's home.  I also was never allowed to drive their cars, though they drove mine.  I was always a guest.

It is difficult for me to put into words how that makes me feel.  How I felt then and now.  Actually, perhaps, if I could remember, I should ask my counselor to help me figure it out, although we have not really made much headway into feelings ... into identifying them.  And I still do not do well having them.

I streamed Kelly Clarkson's American Idol's performance of her song "Piece by Piece," after reading an article about her breaking down whilst singing it.  I invite you to watch it.






And all I remember is your back
Walking towards the airport leaving us all in your past
I traveled 1500 miles to see you
Begged you to want me
But you didn't want to

But piece by piece you collected me
Up off the ground but you abandoned things
And piece by piece you filled the holes that you burned in me
At six years old and no
He never walks away
He never asks for money
He takes care of me
He loves me
Piece by piece
He restored my faith
That a man can be kind
And a father could stay

And all of your words fall flat
I made something of myself and now you wanna come back
But your love isn't free
It has to be earned
Back then I didn't have anything you needed
So I was worthless

But piece by piece you collected me
Up off the ground but you abandoned things
And piece by piece you filled the holes that you burned in me
At six years old and no
He never walks away
He never asks for money
He takes care of me
He loves me
Piece by piece
He restored my faith
That a man can be kind
And a father could stay

Piece by piece...

Piece by piece I fell far from the tree
I would never leave her like you left me
She will never have to wonder her worth
Because unlike you I'm gonna put her first
He'll never walk away
He'll never break her heart
He'll take care of things
He'll love her
Piece by piece
He restored my faith
That a man can be kind
And a father should be great

Piece by piece...

And listen to it again.
And read the lyrics.
And read them again.

Listening to her sing, I was reminded that she and Reba did a CMT Crossroads that I once saw, so I went looking for it.  Interesting that those two became friends and then family when Kelly married Reba's stepson.  Anyway, I streamed it.




Reba's favorite song that they did, that she wanted to sing was Kelly's song "Because of You":


I will not make the same mistakes that you did
I will not let myself
Cause my heart so much misery
I will not break the way you did,
You fell so hard
I've learned the hard way
To never let it get that far

Because of you
I never stray too far from the sidewalk
Because of you
I learned to play on the safe side so I don't get hurt
Because of you
I find it hard to trust not only me, but everyone around me
Because of you
I am afraid

I lose my way
And it's not too long before you point it out
I cannot cry
Because I know that's weakness in your eyes
I'm forced to fake
A smile, a laugh everyday of my life
My heart can't possibly break
When it wasn't even whole to start with

Because of you
I never stray too far from the sidewalk
Because of you
I learned to play on the safe side so I don't get hurt
Because of you
I find it hard to trust not only me, but everyone around me
Because of you
I am afraid

I watched you die
I heard you cry every night in your sleep
I was so young
You should have known better than to lean on me
You never thought of anyone else
You just saw your pain
And now I cry in the middle of the night
For the same damn thing

Because of you
I never stray too far from the sidewalk
Because of you
I learned to play on the safe side so I don't get hurt
Because of you
I try my hardest just to forget everything
Because of you
I don't know how to let anyone else in
Because of you
I'm ashamed of my life because it's empty
Because of you
I am afraid

Because of you
Because of you

Reba finds the song powerful and they talked about how it helps people to not feel so alone, to be able to talk about their struggles, to connect.  But it is a song that Kelly finds difficult to sing and is reluctant to do so, not wanting to weep on stage.

Watching the episode reminded me that Reba was one of the CMT Giants episodes and artists did her songs.  So, I went and streamed that.




I know I have seen it ... or maybe I had only seen pieces of it, such as Jennifer Nettle's performance of "The Night the Lights Went Out in Georgia" and Kelly and Martina McBride's duet of "Does He Love You?"  I did not remember any of the spoken parts of the night.

In watching the full episode, I learned more about Reba and something stood out to me.  Apparently she has this mantra that comes up again and again in the work that she does:  Everybody just wants to be loved and accepted.

The way she said it was so matter of fact.  Not like it was just a tag line or something like that.  Real. Honest.  Fervent.  And she just wanted to be loved and accepted.

In the song, "Piece by Piece," there is a line:  She will never have to wonder her worth.  The song says why, but just the concept of a child wondering her worth stood out.  Well, much of the song stands out.  And I was thinking how wild it is that Kelly Clarkson, with all her ginormous success, questions her worth, struggles with that.

I wanted a key.  I wanted a key to a family home.  I wanted to belong someplace.  As I said, I am still staggered that Gary so blithely and so freely gave me a key to their home because I was welcome there.  I didn't have to have permission to come inside.  I didn't have to stand on the outside looking in.

My house here, as I am wont to say, is my dream home.  Truly there is little more that I could want or would change.  It is beautiful and old and filled with history.  For the first time in my adult life, the antiques I have carted around from place to place to place finally look like they fit, like they belong.  It is palatial, really, for a single person.  I thought that ... well ... for years and years I wanted to have a home where folk could stay, that way station for visitors coming to church.  Funny that I finally have it and belong to no church.  SIGH.

It ... amuses me ... that I, being the poorest of the family, have the only home where our entire family could stay.  Having them all here at once was most difficult, but it was nice to be able to offer that, to be able to provide it, to be able to host.  I like that I have four spare bedrooms even if it is just Amos and I wandering about the place.

I think I have wanted Becky to ask me for a key, for her to want to belong in my home the way that I long to belong in hers.  But she has a home and family and numerous places and ways in which she belongs, where she is loved and accepted.  She doesn't need my key.

I tried to give my neighbor a key, but she didn't want it.  I have given out keys to my home here, but they have all come back to me.  I wanted ... I want ... someone to want to be able to walk inside, freely, to feel and to be at home.

I want to be their family.

Actually, Firewood Man has a key to the garage, which is also the key to the back door.  He likes to pretend that he does not know that because having a key to my home is quite scandalous to him.  However, when he has fresh GREEN eggs for me and I am not awake, he will use the key to slip them into my refrigerator.  I think that if he did not know that it would break my heart for him to give me back the key, now that there is no longer any need to get in the garage (the porch project being long over), he would do so.  If I were a nicer person, I would take the key back and relieve him of his discomfort.  Instead, I joke about him being the person most likely to find a bloated body in the house, long forgotten.

Tonight, I struggled to explain to someone why I had a key hanging from my rearview mirror.  Words failing me, I grabbed it in my hand, realizing how often I comfort myself that way.  When folk drive my car, they always ask if the key needs to be there, I suppose because they find it annoying to have a swaying lanyard next to them.  "No," I respond aloud, but inside I am begging, "Please leave my key alone!"

Despite the very good things I am learning about shame, the truth remains that I do not believe I am worthy of love and belonging.  But Reba is right.  I do just want to be loved and accepted.  And I want the keys to prove it.

New normal...

the grief that is the constantly changing "new normal"

I read that phrase today and thought about my conversation at the doctor's office yesterday with one of the nurses.

"Does that happen often?"

She was asking me about the flushing in my cheeks.  It started when the nurse was taking my vitals and she was surprised at how red I got, how hot my skin is, too.  Yes, it does happen often, with increasing frequency.  It has to do with vascular function going haywire, is neurological in nature, and often happens only in one cheek.

Why that stood out is that a "new normal" is looking in the mirror and seeing a rather ruddy complexion.  If I were an English boy, that would fit.  But I am not.  I am a Southern gal who's been pale all her life.  Until now.

What bothers me is my checks will now remain red even after the heat fades.  And, regrettably, there are very fine, dark red spider veins (I think you would call them that) in my cheeks.  For the first time in my life, I have actually wanted to wear foundation on my face.  Only I do not bother with make-up much, or a brush, or any sort of personal grooming beyond brushing my teeth and putting on a bit of mascara.  Maybe moisturizer and power if I want to be a bit polished.

I have never been a particularly vain person because I have long had my unattractiveness drilled into me.  But the state of the skin on my cheeks bothers me.  Embarrasses me and I cannot really pinpoint why.  Other than it doesn't " look nice."  And, oh, have I ever learned how the importance of  appearance!

You could say that a "new normal" has been the constant evacuation of thick, bloody mucus, but I have been in denial about just how long that has been.  I am just so weary of it, but I am afraid to hope that this sinus infection might actually be wiped out.  The GP is doing three blood tests to see if this might be an autoimmune problem connected to/co-morbid with dyautonomia.

There are so very many "new normals."  Some I acknowledge.  Some come without my being completely aware of them.  Either way, there is that constant sense of loss, of having to re-adjust again and again and again.

I was surprised and a bit put-off, when my counseling started with session after session about living with chronic illness.  However, now, I find I want help with that as much as I do with healing and with shame.

Get over it.
Move on.
Let it go.

Those are some of the cruelest words spoken in the English language when it comes to trauma, loss, and grief.  They are not simply ignorant or insensitive.  They are brutal and harmful.  There is nothing well-meaning within them, no matter how one might try to paint them to be.

Instead, simply acknowledging the grief that is the constantly changing "new normal" can and does go a long way toward providing support and encouragement toward those battling chronic illness/bodily decline.

Trauma is trauma...

Yesterday I was a bit productive, between making caramels to take to the doctors' offices over the next two weeks, making hummus, brewing tea, and watering the plants wintering in the solarium.  Of course, tried to juggle a phone call whilst making the caramels, which resulted in the cream spilling over, a colossal burnt mess, frantic addition of cream to make up for the loss, and a slow, worrisome set in the end product.

Today, I had a doctor's visit, a post office stop, and a prescription pick-up.  On top of that, I am getting ready for mother's house cleaning treat again on the morrow.  As I did last time, I am working on laundry, the dishwasher is running, and I set out fresh bedding.  I like the idea of having nothing that needs doing after the maids leave so that I can just bask in a clean house.  I am looking forward to having the kitchen floor super clean since I spend so my time lying on it, riding waves of nausea.

I am often still battling nausea when I get up to feed Amos in the morning.  I stumble out of bed for fresh ice packs.  He leaps off the bed and frolics downstairs.  I moan and groan and pour food in the bowl.  Amos wags his tail and spins in happy circles.  I lie down and watch him scarf up his food.  Sometimes we stay down there for a while, but, fully sated, Amos just curls up next to me and waits.  It sure is great, though, when the floor is clean, clean, clean!

Last time, I also set a fire so that it was all ready to light, but that left a load of wood that the maids kept pushing around.  So, before I go to bed, I will clean up the ash, but wait to bring in wood.

I was so very nervous about the second visit with the new GP, worried that all the hassle with my prescriptions meant that I had already used up all my good will from her staff.  Really worried.  Plus, she told me that she would like to work through things a few at a time with repeated visits until I feel more looked after, having been without a GP for a while, and until she understands my condition better ... what it looks like to me.

She said to start with one or two things, but I've had so much I've been waiting to discuss, I couldn't decide.  What's a gal to do?  Create a summary sheet and ask the doctor to pick!  Actually, she went with my top item:  green and bloody nasal discharge.  Ick, I know.  But I have been battling this since November 2014 when I had that bad cold.  I have long LONG thought that I had a sinus infection but my old GP said it was nasal allergies and prescribed fluticasone.  That does help me breath better, but I blow crap out my sinus, from up in my head, all day, every day.

Well, the upside is that I (eventually) came home from my outing with three weeks worth of strong antibiotics!  Yes, I have a sinus infection and probably have had one since then.  I might, having had some relief after the pacemaker surgery, gotten a bit better from those two days of antibiotics, but I most definitely have one now.  I am not sure I have ever picked up a prescription more gladly, more excitedly.

Anyway, I've been busy.
But I have also been thinking.

I still do not know how to write about Chapter Three of Dr. Brown's research on shame.  I have been thinking especially about something that my counselor highlighted.  [We exchange highlights each week.]  I want to type it all out later, but the gist is that the brain stores trauma as trauma; it does not differentiate between a small (or lesser) or large (or greater) trauma.

I know a pastor whose daughter was abused by a neighbor.  His response was that he was thankful that it was only molestation, not rape.  Only is a Four Letter Word when it comes to sexual abuse/sexual assault.  Yes, it is good that his daughter did not have to endure the trauma of rape, but that does not make her assault any less traumatic as far as the brain is concerned.  It was/is trauma.

Minimizing trauma is something I have experience and, subsequently visited upon myself.  That is something I am learning in counseling ... to not minimize.  Mostly, I am observing the counselor not minimize, but I am trying to learn.

The information about how the brain stores trauma was before and aft the bit on the page that leapt out at me:

"After studying Dr. Uram's work, I believe it's possible that many of our early shame experiences, especially with parents and caregivers, were stored in our brains as traumas." (I Thought It Was Just Me [But It Wasn't], p. 89).

That has given me pause.

In the shower...

I moved my toothbrush and toothpaste to my shower a while ago.  I moved it back whilst my family was here because I didn't want to hear criticism against it.  And I didn't want to defend it.  Mostly, I don't want to think about why I need my toothbrush in the shower.

I have mentioned having difficulty swallowing before, way back with my original GP.  Perhaps a couple of years ago, now, I started noticing that I had to work at swallowing.  Not always, but enough that I noticed.  It bothered me because I know that can grow to be a big problem.  I have noticed it recently with swallowing pills. I have noticed it because of a problem I have not yet tried to discuss with a doctor, though maybe with Becky. I cannot remember.

My gag reflex has become yet another part of my body that has an exaggerated response.  I try to brush my teeth and, if not very, very, very careful about the placement of my toothbrush when trying to brush my tongue or the inside of my back teeth, I gag and even vomit.  So, I moved my toothbrush into the shower where, if I vomit, I can clean myself up more easily than standing at the sink.  And, in a way, brushing my teeth in the shower is a reminder to me, since I feel ... discombobulated ... about doing so, to be very careful with my toothbrush.

I have started gagging when I swallow my pills.  It drives me a bit nuts, because I think I should be able to swallow them without gagging because I've been able to do that all my life.  I have to take the larger pills one-by-one now, and I have to work really, really, really hard not to gag swallowing the liposomal vitamin C, something I could swallow fine last summer.  SIGH.

Sometimes, I cannot finish swallowing.  I work and work and work and whatever I've swallowed is somewhere in my neck. I can feel it and sometimes massage it from the outside.  Sometimes it happens with just milk.  I try to swallow it and then I cannot really finish swallowing and it is a bit hard to breathe.  It hurts, too.

Part of the reason I haven't tried to talk about it because I don't have good words to do so. I don't have the right descriptive words.  I try to concentrate on how it feels, but I disturbs me so much that all I can really do is try to finish swallowing.  As for gagging, what is there to describe!

I shy away from criticism, especially over decisions I have made to make my life easier.  But even keeping the decision hidden, I feel as if it is just plain wrong to brush my teeth in the shower, that a normal person wouldn't do that.  I feel shame and brush my teeth in shame.

I am hoping that writing about it ... trying to write about it ... I can reframe my thinking into not fear of disconnection but focusing on how, instead of wallowing about the matter, I made a change to help me.

Of course, I also made the change because I realized that I was avoiding brushing my teeth.  You know, despite being raised in a family where you NEVER did not brush your teeth, it is far easier to just avoid the whole process than to deal with gagging.  But rotting teeth in my mouth is not something I need.  After all, I need less problems, not more.

I think, too, the whole gagging thing makes me feel as if I failed, somehow.  Like, Gee Myrtle, you can't even manage to brush your teeth?

SIGH.

Raking...

My little fluffernutter is just fine.  He ate and drank well yesterday, as if spewing up everything in his stomach the night before had not happened.  Gosh, I really wish that I knew what to do about his infrequent episodes of emptying his stomach.  He's not regurgitating.  He doesn't have intractable vomiting.  He doesn't even have sustained vomiting.  Just ... I-ocassionally-don't-like-something-in-my-stomach-vomiting.

It doesn't help that his puppy momma is a worry wort.

Today, he pooped on the sidewalk, after many aborted attempts to do otherwise, because he could not find a place in the yard that was free of deposits, which he very understandably desires in a location for them.  The problem is that the leaves were not tended to this fall.  Honestly, I hoped that with my family here someone might have asked me if there was anything I needed about the house and I would have very promptly said, "Rake the leaves in the back yard."  That never happened.  The problem with the leaves is that I cannot see well enough to distinguish the deposits among them.

So, I got out the rake.
And fainted.
Eight times.
And filled three yard waste bags of leaves.

Amos was rather happy to be able to walk on that part of the yard again.

There is no way for me to safely squat and rise, bend over and rise, sit on the ground and rise.  Gravity is too much for my failing autonomic nervous system.  When we came inside, Amos went and fetched Beaver Baby and then crawled into my lap with it.  He was all about consolation and comfort.

Raking the leaves got me thinking about my desire to have visitors come and ask me if there are things they could do for me.  It is what I want but it also seems inordinately selfish.  It doesn't happen that way.  My main progress is asking visitors to change their sheets they day they are leaving because that is very helpful for me.   But asking for help with things always ends up with others things taking place.  My goodness, I think every single person in this house I've asked to hold Amos' paws so that I can trim the hair around his pads.  And I've asked several to vacuums the servant stairs.  That, however, is now being taken care of by the maids my mother hired to clean my house once a month.  Thankfully.

Anyway, I have this deep desire to have help with the things that are difficult for me but I do not consider as being too much to ask.  And yet I think that is proof positive that I am a horrible selfish human being who just wants to manipulate others into doing the things I'm too lazy to do.

Words I've heard.
Words I cannot un-hear.
Word I seem to let define me.

I asked a while ago, "What is identity?"  Oh, how I wish I knew that question is answered.

Mostly, I am conflicted.  Because if folk do visit, I want to provide a pleasant and relaxing time for them, filled with tasty foods and their favorite treats. Given that I cannot go out and do entertaining things with folk, I want the time they spend in the house with me to make them feel pampered and relaxed.  Somehow, raking my leaves or scrubbing my tub or vacuuming a staircase doesn't really fit in with that goal.

I really did want someone to rake my leaves in the back yard. I do not actually like fainting.  I tried to get Firewood Man to do it, but he never had the time.  I hoped and hinted whilst my family was here, but that didn't work out.  I asked at a church down the block for me if there were any youth who were interested in odd jobs.  There were not.  That was all the courage I could muster.

So I raked.
And fainted.
And took care of the poop problem.

Puking puppy dog...

Amos spent the evening throwing up, so I spent the evening worrying.  He threw up his dinner in five spells and then begged to go outside, where he ate dirt.  Yes, dirt.  Then he came back inside and threw up three more times before settling down in my lap.

How do you know if a puppy dog is ill?

Every once in a while, Amos will throw up what I believe is bile ... foamy yellow stuff.  It comes in spates and then disappears for weeks or months on end.  And every once in a while Amos will eat greenery outside and then come back inside to throw it up.  It seems to me that he is purposefully eating something to empty his stomach.

For a while there, he spewed foul stuff on the carpet upstairs more times that I cared to experience.  Then ... nothing.  Every time I start to think I should take him to a vet, he is then fine for so long I forget about my worry.  He has also never throw up after two meals in a row.  By that I mean, once he eats again, Amos is fine.

He poops and pees and drinks fine.  Is that an indicator of health?  He frolics when  I am not too weary to play.  He will squeak one of his babies for well over an hour.  Mostly, it seems that Amos, who believes everything in the world is up for consumption, will sometimes eat something that his stomach doesn't like so he will vomit until it is gone and then a bit more just to be on the safe side.

Does it make me a terrible puppy momma for not rushing him to the vet tonight?

I never knew that one could become so attached to a dog.  Really, I thought I had a strong connection to Kashi and I didn't.  Not like this.  I was so ... afraid ... that something would be wrong with Amos during his first vet visit that I actually just didn't take him to the vet after I got him.

He was this ENORMOUS fluff ball, way bigger than any 10-week-old bichon poo ought to be.  I was even shocked when I first saw him and wanted to protest his age.  But I have the papers from his parents, 8 and 10 pounds.  Somehow, they produced a 22-pound son, at least that's what Amos weighs now.

Even though he was GINORMOUS for an itty bitty puppy, Amos felt so fragile to me.  I was scared to hold him or pick him up and fretted about him lots.  My plan was to crate him, as I did Kashi, because I believe crating is good for a puppy.  Amos, having never been confined in his life, was terrified and pooped and peed his crate and knocking against the sides to roll it over three different times before I gave up.  Three baths.  Three periods of hysteria.  After the third bath, I thought:  What is the worst that could happen if I put him in bed with me?

I was fearful I might smash him to smithereens, but I never did.  Amos had plenty of siblings to drape himself over at his previous home and so he just did that in his new home until he got too big and decided curled up at my side or tucked up beneath my arm with his head on my shoulder was the place to be.

Yes, he has me wrapped around his little finger.

Still.

Anyway, Kashi was terribly ill the first year I had him, nearly dying until I discovered he had an hepatic shunt.  I had a warranty on him, being a purebred, but the warranty consisted of them killing him and giving me another puppy.  I stuck with Kashi and learned how to deal with his chronic illness.

[Hey!  I just realized Kashi spent 15 years teaching me how to live with chronic illness!]

So, it might be a bit understandable that I was nervous about that first vet appointment, the one that was supposed to take place the first week I had him.  I actually put it off and off and off until it was time to neuter Amos.  Poor pup.  His very first visit was filled with shots and a snip job.

All that is to say that I ... I ... I absolutely cannot fathom living this wretched life without Amos.  I worry about that in small, quiet moments here and there.  It crops up each time Amos throws up and I hold my breath for hours on end until I can convince myself that he is okay.

I don't mind a puppy dog whose place of safety is perched atop my shoulders, even if, as he has grown, that perching has become a bit more precarious.  He makes do, though.  Every time.

Amos has been sleeping for a couple of hours now.  I have been watching him sleep, trying not to worry.  I'll be glad when the morrow comes and he scarfs down his breakfast in record time, as usual, so that I can relax once more, knowing that my beloved Fluffernutter is just fine.

I hope....

Since time is so very fluid with me, I just thought to create a file in my MOST FAVORITE APP Awesome Notes under the Medical folder I keep.  "Amos Vomiting."  I recorded tonight's episode and will try (please help me remember this) to start a log of when he vomits so that when he sees the Vet the first week of May for his annual check-up I can be more specific about the frequency.  I know he puked a short while ago, but then I think it hasn't happened since last fall, pre-pacemaker.  SIGH.  I sure do wish I had thought to start logging this rather disturbing event sooner.

Better late than never??????

Days...

What did you do today?

Held Amos.

No, really.  What did you do today?

I held Amos.


Yes, that is what I did.  When I tried to shift him out of my arms, Amos protested.  After a few times of that, I gave up.  Really, I didn't try all that hard because of the crashing waves of violent nausea tossing me about most of the day.  You would think, with several years of practice, I would be better at handling the nausea, but it just catches me off guard.

I had thought I might go back to Target, now that I have a gift card, for the three things that were on my list but I somehow forgot even though I was checking my list whilst fetching prescriptions on Wednesday.  One of the times, conditioner, is very much needed.  Only standing leaves me dizzy and I just don't concentrate much when I am nauseous.  Basically, I let Amos' preference rule the day because it was my preference, too.

I did find a video on Facebook that I thought was rather helpful.  A young woman was filming and her blood pressure drops.  It provides an opportunity to see what pre-syncope looks like.  Syncope is the medical term for fainting.  Pre-syncope is what most folk term near-fainting.  It is wretched.  Both syncope and pre-syncope from dropping blood pressure can come on suddenly, especially with someone with Dysautonomia.  Watching it was hard for me, but also very much welcome.  She knows!  I am not alone in this wretchedness!

In my head, I know that millions of people have one or more forms of dysautonomia, but millions is so far from my small world.

I also added a few more dates to this (temporarily) free app that I found:  Days Left Widget.   It is a simple way to count down to a date or count from a date. For example, just 470 days remain until I can get the shingles vaccine (I had full-blown chicken pox twice as a child and live in fear of shingles). In 154 days, I will have finished paying off the sewage repair bill. And I have just 20 more days of freedom until my next torture session (interrogation) at the pacemaker clinic.

Today marks 216 days since I weaned myself off Xanax and moved to coping with the symptom of anxiety holistically (an achievement I am most proud of). It has been 51 days since I last resorted to my poorest coping mechanism that I am working on setting aside. And ... well ... I am trying to decide the date for my last meltdown.

I would put it at 37 days, at the integrative medicine specialist visit (I only just managed to finally talk about it in counseling yesterday, but only as I was literally walking out the door—such a bad experience it was for me). However, I did scream at the Medicare company supervisor who called me and my GP's nurse liars last week and then ended up phoning Mary weeping because I was so defeated over my screaming; I did not calm down until she started reading to me from the book of John. I don't know if I would term that as a meltdown or just inordinate upsettedness. Still, maybe the latter is just 8 days.

Also, it has been 158 days since I met this confusing and interesting counselor who believes that there is healing for everyone, even folk named Myrtle.  Maybe I should figure out the date that I started reading the book on shame.  Already I know that it is important!

I did hint on Facebook it would be dandy to add a date for when I might have a visitor.

Wait, I just thought of another date to add:  The day I met Amos!  It's been 1,832 days that I've had my beloved Fluffernutter in my life!

Yes, I clearly like the app.

I think it is a fun app to have, but I also think that it might be a bit more important to me since time is so fluid between my broken rememberer and days and days and days of nausea or writing or dizziness.  What day is this?  What month?  Has it really been five years plus since I moved here.  There's a date.  It's been 1,885 says since I was felled by food poisoning and the malfunction in my innards was triggered.

1,832 days since the pit bull attack.  SIGH.

Perspective, though.  It's only been 88 days since I got Georgie.  No wonder I am still struggling with living with a pacemaker.  My pacemaker.  Interrogations.  Nightly testing.  The accelerometer.  The hypertrophic scarring.  The pain.  The pain.  The pain.

Days where life has shaped me.
Days where I am trying to shape life.

Following a carrot...

I found an image on the NCS group on Facebook that struck home for me:

This is me, what I try to explain and explain and explain ... to no avail.  This is what makes life so very difficult for me.  This is what I grieve.

I have been studying the second chapter of Dr. Brené Brown's book on her research about shame.  Here is a bit that is a good example of how I will come across texts now that simply make no sense to me, where I cannot string together meaning in one sentence, much less several sentences grouped together, where I once would have breezed through such a text with great ease:

In a section of their book entitled "Does Shame Serve Any Adaptive Function?" Tangent and Dearing explain how earlier conceptualizations of shame may not take into consideration the current way people self-evaluate and relate to one another.  They write, "With increasingly complex perspective-taking and attributional abilities, modern humans have the capacity to distinguish and to empathize with others' distress.  Whereas early moral goals centered on reducing potentially lethal aggression, clarifying social rank, and enhancing conformity to social norms, modern morality centers on the ability to acknowledge one's wrongdoing, accept responsibility, and take reparative action. In this sense, guilt may be the moral emotion of the new millennium."  (I Thought It Was Just Me [But It Wasn't], p. 93).

I read that many, many times to no cognitive avail.
SIGH.

On to things which I do understand from the second chapter:  Empathy, courage, compassion, sympathy-seeking, and several examples of what not to say when one is in shame.  The bit I liked best, because it was me writ out on the page, was one of the five interview excerpts given in the section about working to understand the experiences of others to hone the skill of empathy-giving:


Experience:  When I think of shame I think of being sexually abused when I was growing up.  I think about what that's done to my life and how it's changed everything.  It's not just the abuse itself.  It's everything you have to deal with the rest of your life.  It's like you feel different from anyone else; nothing is ever normal for you.  Everything is about that.  I'm not allowed to just have a regular life.  That is the thing that make me who I am and so everything is stained by that.  That's what shame is for me.

Emotions:  Feeling labeled, dismissed, misunderstood and reduced.  Emotions might include grief, loss, frustration and anger.

Dig Deep:  Have you ever been defined by an experience?  Found yourself unable to get out from under a reputation or "an incident"?  Have you ever been unfairly labeled?  Have you ever had people attribute your behaviors to an identity you don't deserve? Have you ever fought to overcome something, only to find others less than willing to move past it? (p. 60)


I think, for me, what has been less bearable for me is the repeated attribution to a history of sexual abuse the Dysautonomia symptoms I have.  When I go to see new doctors, because that label is in my records, I am almost always greeted by:  "I see you are a sexual abuse victim."  BAM.  That's the sound of the door to hope slamming shut.  It's the sound of the doctor shutting the door to any physical ailments you might have having attributive them all to your label, the stress of it.  Reading this was a balm to my soul.

I AM NOT ALONE.

One of the things that surprised me in the chapter, but also made perfect sense to me, was the story of a man named Ron.  He hit his wife and was ordered by the court to attend therapy sessions.  He resisted being placed in a group of batterers, but was willing and interested in joining a group of men who had trouble controlling their anger.  Translate that:  Ron refused to accept the label batterer.  He was not a wife abuser; he was someone whose anger made him do the unthinkable.

Dr. Lerner, the social worker presenting Ron's case,  concluded in her book, The Dance of Connection:  "We cannot survive when our identity is defined by or limited to our worst behavior.  Every human must be able to view the self as complex and inter dimensional.  When this fact is obscured, people will wrap themselves in layers of denial in order to survive.  How can we apologize for something we are rather than something we did?" (p. 66)

Having been labeled, often, in the medical world and in the church, in school, at work, I have railed against and yet been felled by the identity laid upon me.  Ron's stance gave me food for thought, because I know, were it something I read online, the commenters would be lined up from here to China lambasting his desire to be in an anger management group rather than a batterers group.  But there is, actually, a difference between someone who hit his wife and someone who beats his wife.  That distinction matters.  Our world, however, likes to tar and feather first and not ask questions later.

It is this ... conundrum ... not wanting to be defined by a label, have my very being rather unfairly and wrongly weighed and measured against that label and yet wanting to be understood that my experience colors my life, informs it.

I also liked what Dr. Brown wrote about her research:

Stories require voices to speak them and ears to hear them.  Stories only foster connection when there is both someone to speak and someone to listen.  In sharing my work on women and shame, I hope to accomplish two things: give voice to the voiceless and give ears to the earless.  My first goal is to share the complex and important stories that women often keep to themselves because of shame.  I want to share these voices because their stories are our stories.  They deserve to be told.  My second goal is to relay the stories in a way that allows us to hear them.  Often, the problem isn't with the voices, but rather with our ears.  The voices are frequently there—singing, screaming, yearning to be heard—but we don't hear them because fear and blame muffle the sounds. (p. 42)

And I appreciated what she writes about courage.  I think I shared this before, but back in the introduction, Dr. Brown first addresses the etymology of the word courage:

Courage is a heart word.  The root of the word courage is cor—the Latin word for heart.  In one of its earliest forms, the word courage meant "To speak one's mind by telling all one's heart."  Over time, this definition has changed, and today, we typically associate courage with heroic and brave deeds.  But in my opinion, this definition fails to recognize the inner strength and level of commitment required for us to actually speak honestly and openly about who we are and about our experiences—good and bad.  Speaking from our hearts is what I think of as "ordinary courage." (p. xxiv)

Etymology comes up again in Chapter Two:

In her article on ordinary courage in girls' and women's lives, Annie Rogers writes, " One way to understand the etymology of courage is to consider its history as a series of losses.  Over the course of five centuries, from 1051 to 140, courage was cut off from its sources in time, in the heart, and in feelings.  In other words, courage was slowly disassociated from what traditional Western culture considers feminine qualities, and came to mean 'that quality of mind that shows itself in facing dance without fear or shrinking,' a definition associated with the bravery and heroism of boys and men.  The patter of losses in the history of the word courage seems to reflect an increasing invisibility of girls' and women's courage in Western culture."

Without courage, we cannot tell our stories.  When we don't tell our stories, we miss the opportunity to experience empathy and move toward shame resilience. (pp. 43-44)

The thing I learned recently, though, about this is that Facebook, at least for me, is not the place to either practice courage or seek empathy.  I have so much that I wish were not secret, wish were not just with me.  So, on Saturday, when a cashier at Walgreen's, when seeing my purchase of three gallons of milk, asked me, "How many children do you have?"  I posted how much that hurt.  I posted that were life different Avery would be turning five-years-old soon.  I know miscarriage is pretty much a taboo topic.  However, it seems as if miscarriage from a rape is a forbidden topic.

I told my family about the baby, the baby my friend Becky helped me name Avery in addressing my grief (and guilt) over the loss.  But it is a baby that basically never existed.  Since revealing my loss, I have still heard comments about not understanding because I am not a parent or about abortion or someone else's miscarriage ... but not mine.

It is something that, even shared with a pastor, is a silent topic.  Silence breeds shame.  As if the life that briefly existed shouldn't have.  And I shouldn't try to make others acknowledge it.  Granted, certainly not all think that way, but it feels that way and that is the message that come across.  Don't talk about rape.  And, if you make the mistake of doing so, never talk about a baby conceived from a rape.

Silence.
Shame.

I've tried to be braver here, of late, to be more honest, to have less secrets.  I am in awe of discovering a book about shame, a research book nonetheless, after longing to understand my own shame, to be free of it.  I very much long to start building shame resilience, but I am wondering how that can really happen being a person without much connection and no place, really, to be courageous and vulnerable, no place to receive empathy to drown my shame.

I guess one way to put it is that I felt a bit like a horse following a carrot dangling on a string.  Tantalizing hope, but always out of reach.  Still, I look forward to talking about this chapter at my next counseling appointment (rescheduled to later this week) and delving into the next chapter, which is the first on the four elements of shame resilience.

The Martian...

I have posted on Facebook several times about the movie "The Martian."  When I finally saved up enough Amazon promotional credits (they recently changed the name of those to "benefits") to purchase a recent movie, I was all set to buy the sequel to "The Best Exotic Marigold Hotel" (I keep forgetting the name of the sequel).  Really, I was just about to click and suddenly I found myself buying "The Martian."  Given that the last three recent sci-fi movies that I was able to stream for free were rather disappointing ("Elysium," "Oblivion," and "Interstellar"), I honestly am not sure why I made the purchase.  But I am glad that I did.

I have watched it at least four times now, but I think it might be closer to six or even eight times.  I cannot remember!  Back in the dark ages, my best friend Becky and I would watch "Independence Day" each time we got together.  It is a movie that didn't get old and that had great one-liners in it that we could speak to each other.  We also sometimes watched "iRobot" or "Minority Report," but "Independence Day" was our go-to movie.

When I first saw "Blind Side," I sat at the end of the movie staring at the TV just thinking. I sat so long that the DVD actually started the movie again.  So, I sat and watched it a second time.  I have the movie, but it is also one that I will stream when it pops up as available.  I like it.

The thing about "The Martian" is that it has the feel of "Apollo 13" although it is fiction.  It is good fiction, realistic fiction, plausible.  It has, to me, a rather engaging sound track that I find myself enjoying each time I watch the movie.  It is dialogue is oft funny.  The plot is oft poignant.  And the movie as a whole is quite interesting.

However, I have wondered if the reason I find it so incredibly re-watchable (I just got the movie on January 8th) is that I do not remember the whole of it each time I watch it.  It has become familiar, but still remains unfamiliar, if that makes sense.  I know that I will be moved. I know that I will laugh. I know that I will be left feeling hopeful.  I know that Mark Watney does not die in the opening scene and I know that he is rescued.  But all the in-between stuff is mostly vague.  When it comes around, I find myself saying, "oh yeah, that's what happened," but I still find myself wondering what comes next and, each time, I find myself holding my breath to see if he makes it from his precarious position in space in the tip of the MAV back to the Hermes.

So, is the movie as great as "Independence Day" or is it that my difficulty remembering makes it a great movie for me but not for others?


P.S.  I had to Google: tom cruise movie about knowing about crime before it happens in order to "remember" the title of the movie Becky and I used to watch a lot.  My rememberer would be much, much, much worse without Google.  Thank you, Google.

Nothingness...

Every time I pull the computer into my lap to post, Amos crawls in, too.  It is near impossible to type with my arms around a fluffy white puppy dog.  Really, though, I have been riding waves of violent nausea and have little to say ... little to remember at the moment.  

My counselor tried to help with my longing to hear the Word of God by loaning me a set of CDs of the Bible.  However, I find them to be ... distracting.  They are narrated, scored, and acted out.  So, it technically is the Word of God, but is like listening to a movie of sorts.  It simply isn't the same as being read to ... at least to me it's not.

I have not read any further in the research book on shame because I cannot concentrate.  I actually have several pages of text someone is waiting for me to edit, but I try to do so and get nowhere.  That is one of the greatest changes in me since being felled by Dysautonomia.  Concentrating on something, studying or editing, writing even, is the most arduous activity I face other than trying to go up more than one flight of stairs at a time.  Really, concentrating is as physically arduous as my aching, feeble, quaking legs walking up stairs.

Back when I was a professor, I would often grade papers whilst listening to music or watching something on television.  The simple task of grading was not enough to really keep me occupied.  Now, the simplest distraction is enough to completely derail any task I am trying to accomplish, such as following a recipe.  It is why I become quite agitated whilst cooking if someone tries to talk to me about anything other than the recipe ... if I am concentrating on a section of it.  I know what will happen if I become distracted and, especially with baking, it is hard to get all the ingredients right ... near impossible to remember what I have added if interrupted.

Sometimes, the main problem is that I simply do not understand what I am reading.  That could be because I cannot hold one sentence in my mind long enough to connect it to the next sentence I am reading.  Or it could be that what I am reading makes no sense to me.  A part of me knows it should make sense, but it doesn't.  Frustration leads to an even greater difficulty in concentration and the act of reading or studying or editing becomes another experience of failure and an excruciating reminder that I am no longer the person who sailed through 50 graduate hours in her first calendar year of her Ph.D..

In this regard, sometimes I welcome the nausea.  I welcome a legitimate reason for not being able to read or watch television or edit something, as much as I desire to do anything that would make me feel useful.

This afternoon, I watched four episodes of the first season of Major Crimes.  I saw them all in the past year.  And yet there was not a single aspect of any of the cases that I remembered.  I vaguely remembered two scenes with Rusty, one with the insensitive D.A. and one with him regarding a threatening letter he received.  Odd that I remember something about what I would consider a minor character.

Now, I am simply lying in the GREEN chair, typing around my beloved Fluffernutter, having sat in silence for a few hours.  I do not believe I have ever found the right words to express just how ... blank ... my mind can be.  It really was staggering to not remember any of the plots of those shows.  I like "The Closer" and "Major Crimes."  I have watched the whole of "The Closer" three times through.  I should remember it, I think.  However, having just finished "Fringe" for the fifth time, I did not remember its ending at all.  In fact, the few things I remembered from the last season were that Etta dies, that the bridge had to be closed, and that Peter ran away for a bit during an episode that speaks to a longing to belong.

Gosh, I really didn't remember those shows!  

I think my remember is getting worse.

Sometimes I think it ... giving up ... for me to re-read as much as I re-read now.  Only, I find reading not pleasurable when I cannot follow a story and I think I have enough displeasure in my life now.  Reading ... books have been my closest companions, my family really my whole life.  It is hard to lose that ability, in part, now.  So, I stick with what I know ... knowing I will not really remember the stories anyway.  Some more than others, depending on just how much re-reading I have done with them.

Last night, in bed, feeling a bit guilting about simply restarting the Chronicles of Elantra series once more, I switched to Anne McCaffrey's early books about the FT&T.  You cannot go wrong with vintage Anne McCaffrey!

Yesterday, I drove to my new GP's office to pick up the samples of my inhaler that the nurse left for me at the front desk—six months of samples!!  That's it.  After sitting here, twining my fingers in Amos' curls and struggling to concentrate, that is all that I can tell you that I did in the past three days.  I try to picture Friday and nothing comes to mind.  I try to picture what I have eaten and nothing comes to mind.  

I could get up and go look at the dishes piled up in the sink, but I am not sure there is enough residue to ferret out my culinary consumption with a fluffy white dish pre-cleaner living in the house.  The dishes are piled up because I am so much more exhausted these days so I will wait until the sink is a bit full before standing and addressing dishes.  But I don't really want to play detective in my own life.

It is, now, 8:54 PM.  This day has been filled with four episodes of "Major Crimes" and ... and ....  I don't know.  I don't know what I ate either.  Nothing lingers on my tongue.  Not having any contact with folk until Tuesday, I have not rehearsed my days or taken notes to help me in conversation.  No alarms or remainders have told me that things need remembering (other than my daily medication alarms).  So, it is not, apparently, needful for me to be present or engaged.  Really, these days, I often exist in nothingness.  What I cannot decided is whether or not it is a good thing that I have become less upset about that state.

I could also point out, though, that I have become less upset about my hair falling out.  The integrated medicine specialist wanted me to try lowering my thyroid medication on the weekends.  What I have learned over the past eight years is that whenever my thyroid is lower than my body prefers (forget about the charts), my skin becomes ashy, my nails become brittle and start peeling, and my hair falls out.  

Oh, how I used to crumble over the latter. I know somewhere in these archives are a gazillion posts bewailing the loss of my hair.  However, when it started coming away in my hands this week, my very first thought was:  Maybe my head won't hurt so much if my hair weighs less.  Plus, I know that when I have my next appointment, I will be able to bring in a bag of my hair and the dosage will be changed back.  I have such a thick head of hair that I can go a couple of months like this and still have plenty of hair left.  This is also round 101 with strands in my hands, all over my body, and filling up the catcher in the drain.  

I am definitely more sanguine about some of the wretchedness I face.  Does that mean that I have matured or that I have given up somehow?  I honestly don't know.

Hey, I just thought of something.  If I want to remember what I have to eat each day, I should just start having pulled pork tacos every day!  Mmmmm...

I suppose I will stop rambling about nothing, really, and get back to twining my fingers in curls.  Or maybe I will light a fire for the rest of the evening.  Or watch some more of a show that is brand new for me once again.  Whatever I decide, chances are I won't remember on the morrow unless I take measures to ensure that I do.  With the fate of the world not hanging in the balance ... I doubt that I will.

A start...

At one point, this afternoon, I found myself screaming at a supervisor from the Medicare company because she was insisting that all my doctor had to do to submit the tier reduction request paperwork via fax.  Since January 27th, the doctor's staff has been doing just that.  Finally, last Friday, the paperwork was faxed back with a hand written note saying it wasn't the way to submit the paperwork.    Two weeks, more than a dozen phone calls, more than a dozen faxes, four different phone numbers, three different fax numbers and I was nowhere.  I just lost it when she told me that I was lying about how many calls I had made because "one call is sufficient" and that my doctor's staff was lying about faxing the paperwork.  I screamed.  She hung up on me.  I wept.

I very, very, very much dislike my absolute and utter inability to handle great frustration.  I get to a tipping point and I find myself screaming.  And then I find myself wanting to die, filled with self-loathing.

Granted, it was two weeks of beating my head against a brick wall.  I did not scream immediately, but I did scream.  "I AM NOT LYING!"  I know that her callous and careless words are a trigger for me.  With dyautonomia, being seen as "faking it" is par for the course.  And, as a child trying to talk to adults about the bad things happening to you, you oft hear that you are imagining things or making things up.  You are disbelieved because to believe is to admit the unthinkable.

But I didn't used to scream.

SIGH.

I called my friend Mary so ... sad and embarrassed and defeated and disappointed in myself.  I bewailed my misery a bit, wending my way to saying how much I miss hearing the Word of God.  I was just about to ask her what she thought if I had my counselor read it to me before I leave each week, if that would be weird or wrong or whatever, when Mary interrupted me and asking me if I wanted her to read to me.

I did.

She did.

My tears dried.  My body relaxes.  Peace washed over me.  Five chapters of John later, I was ... better ... and past the moment of overwhelming feelings.  Such mercy.

I am always welcoming of Mary's  ... input ... when I talk with her.  I oft seek it.  But, whilst I may be forgetting elsewhere, I believe this is the first time I had my heart's desire:  no words of trying to "fix" me (Mary doesn't do that) or well-intentioned human words, just the Word.

I've said it before; I will say it again:  The Word of God is sufficient unto all times and places. It is powerful and performative and will not return void.  It is not just comforting; it will actually actively comfort a person.

After such a boon, I Googled and Googled and Googled until I found a number for my doctor's nurse to call.  She did.  The requests were submitted.  Something like two hours later, they were denied.  All three.  I had hoped for respite on at least two of them.  I shall appeal, however the nurse told me that the technician said that the hormones and the inhalers are two classes of medications that never get tier reductions and that Celebrex/Celecoxib will not either.  

It was such discouraging news.

Later, I gathered my frayed and sorrowing nerves together and started reading the second chapter of the book on shame research.  I am just a third of the way through it, but already I have much to ponder.

Do you remember the petri dishes from high school science lab—those little round dishes? If you put shame in a petri dish and cover it with judgment, silence and secrecy, it grows out of control until it consumes everything in sight—you have basically provide shame with the environment it needs to thrive. On the other hand, if you put shame in a petri dish and douse it with empathy, shame loses power and starts to fade. Empathy creates a hostile environment for shame—it can't survive.

When I asked women to share examples of how they recovered from shame, they described their shame with someone who expressed empathy. Women talked about the power of hearing someone say:

"I understand—I've been there."
"That's happened to me too."
"It's OK, you're normal."
"I understand what that's like."

Like shame itself, the stories of resilience shared a common core. When it comes to shame resilience, empathy is at the center.

Real empathy take more than words—it takes work. Empathy is not simply knowing the right thing to say to someone who is experiencing shame. Our words are only as effective as our ability to be genuinely present and engaged with someone as she tells her story.

...They describe empathy as "the ability to perceive a situation from the other person's perspective. To see, hear, and feel the unique world of the other." I believe that empathy is best understood as a skill, because being empathetic or having the capacity to show empathy is not a quality that is innate or intuitive.  (Dr. Brené Brown, I Thought It Was Just Me [But It Isn't], pp. 32-33)

Dr. Brown breaks empathy up into four components and begins to explore them.  I have yet to really absorb that part, but I was glad to see that she views empathy as a skill that can be learned, honed.  Reading through the components first off, my thought was how very much I have to learn.

She also begins the chapter with a very vulnerable story about herself, one with a whopping lie and spiraled her into shame abyss.  She reached out to a friend and that woman responded with empathy.  Dr. Brown talks through the whys of her response but she also concludes with:

I kept asking, "Are you sure?  Are you sure?"  She finally said, "Look, I know you don't think you're going hold it together for the next three days, but you will.  You may not do it perfectly, but you're going to do it. I  know that was probably really hard for you, but we've all been there and it's really OK."

In that split second, the shame turned into something else.  Something I could handle.  Something that moved me away from "I'm so stupid—I'm a terrible mother" to "That was pretty stupid—I'm an overwhelmed mother."  She dropped just enough empathy in my petri dish to make it start fading away.  She wasn't judgmental.  She didn't make me feel I had to keep silent about my misstep.  I really felt she had heard me and cared about me.  She validated my fear of "barely hanging on" and she acknowledged how much I like Ellen's teacher. Most importantly, she saw my world as I was experiencing it and she was able to express that to me. (pp. 35-36)

I found all sorts of comfort in reading this, especially the specificity.  But what comforted me the most was seeing that Dr. Brown needed to hear the words she was seeking more than once, that she asked again and again.

Who does that sound like?

These days...

It's been days and days now.  Okay, three days.  But that is three days longer than I wish.  I can face the violent waves of nausea.  I can face the overwhelming pain in my abdomen. I can face the new waves of dizziness (from the blood pressure medicine).  However, I am finding it difficult to face all three together.  And my abdomen, whilst always painful now, has been swollen and so tender that I cannot really bear to be long away from my heating pad ... a heating pad I keep on high.  SIGH.

I find it rather interesting that the only other way I can ease the pain a bit is to curl up in a ball.  I have learned that others with dysautonomia and abdominal pain do the same.  Kind of flummoxes me, though.  Curling up in a ball seems the very opposite of what you would want to do with a swollen abdomen.  However, if I draw my knees toward my shoulders and lie on my side, the pain is more bearable.  Lying flat on my back with my legs straight is the absolute worst.

I've spent hours and hours on the bathroom floor and hours and hours in bed.
Hours and hours moaning and groaning.
Hours and hours trying to distract myself by streaming  S.H.I.E.L.D..

I stopped watching before the end of last season because I just cannot bear shows where the brilliant, psychopathic bad guy just won't go away.  Ward.  ARGH.  However, I started watching it again mid Fall, so I thought I would start from the beginning and re-watch until I got to the parts I miss.  Funny, I never thought about this as a show about trust and forgiveness, but it is.  Not to the degree that the remake of Battlestar Galactica is, but it is the same ... betrayal, fighting for your life, sometimes trusting your enemies.

Right now, Gemma is dealing with Fitz' loss from his brain damage.  I know that he is better from what I saw last fall, but it is heart-wrenching to watch.  Both his struggle and hers ... watching her friend suffer.

Today, I was going to start Chapter Two of the research book on shame, but I have not been able to concentrate enough to read ... even read on my Kindle.  Re-read on my Kindle.  My favorite books.  My comfort books.  I just finished the tenth (and latest book) in my beloved series (Chronicles of Elantra) and after trying two different new (free) books, I went back to the first in the series.  For once, I do not mind my faulty rememberer.

But I didn't hang out with Kaylin, either.
I moaned and groaned.
And fiddled with Amos' curls.

Tonight, I've been having chest pains.  That's par for the course with Dysautonomia.  Wonky nerves malfunctioning in your chest.  Fearsome because you worry, constantly, about having a heart attack.  In fact, if you hang out on forums and Facebook groups, you will see posts about going to the ER again and again with chest pain.  Frustrated posts because nothing is done.

It confuses me why they go.  Even when I am gasping for breath against the pain and out of my mind with worry over keeling over dead, I would never go to the ER.  I would never spend the time and energy and expense to get a cardiac workup for something that is neurological in basis ... something for which there is not much you can do.  The ER isn't about managing chronic illness anyway.  It is about stabilizing patients so they can get treatment elsewhere.

To me, those posts are like Amazon.com reviews where folk get all mad at a product for not doing what it wasn't designed to do.  For example, I bought the Oxo shower caddy some time ago.  It is designed for a traditional shower head, not one that detaches from the wall.  The bad reviews were all about how it didn't fit those shower heads.  I see that type of review frequently, just as I see that kind of anger post about the chest-pains-ER-visit.  They don't make sense to me.

It is something I have talked with two doctors and my counselors about.  I am content with my diagnosis.  I am not interested in genetic testing to narrow down the exact cause the way that most dysautonomia folk I see in those forums and groups do.  I am also not interested in repeating tests over and over and over again.  The tilt table test, for one, is quite dangerous.  And repeating tests still will not cure an incurable disorder.  Why waste the money?  Why put hope in the futile?  Why go from speciality clinic to specialty clinic when there is no real treatment, no cure.  There is just what works for one ... which will most definitely not work for all, or even most.

One doctor and the counselor said that I have already moved toward acceptance and that chasing cures is about denial.  Only much of the time I feel as if I live in denial.  After all, I still struggle to treat myself with the care my failing body needs.  I push and push and push.  Or at least I did up until a few weeks ago.  I'm trying to change.  And then I have days likes these, which often lead me to thinking I am useless and lazy and should just go out and force myself to accomplish something.  Funny, I think I might have done that tonight had the chest pains not started.

At least the chest pains are random and not constant.
Now, at least, I better understand what is happening physically.
I fear them less, even if I do not find them easier to bear.

So not much reading or studying or learning.  Not much of anything but moaning. Of course, I have been pondering what I have learned and what I might learn next.  And I have been in the company of my Fluffernutter whilst writhing with innards misery.  No fire tonight, but maybe again on the morrow.

Three things and five...

Today has been a physically miserable day, one that started at 2:00 AM.  Violent waves of nausea.  Overwhelming abdominal pain.  Dizziness.  UGH.  The nausea finally waned to a manageable point around 6:00 PM.  My abdomen is still rather sore.  Actually, it never not hurts anymore, but the pain does lessen at times.

Up until about 10:00 minutes before my appointment, I was planning on staying on the bathroom floor.  However, I really, really, really wanted to talk about the first chapter of I Thought It Was Just Me [But It Wasn't].  I reminded myself that my counselor has repeatedly assured me that she does not care if I show up in my pajamas.  I wore them today.  She also does not mind if I moan and groan whilst I am there.  I moaned and groaned today.

We talked primarily about the top three bits of Chapter One in which I found the most comfort.  The first being that learning that shame can cause the fight/flight/freeze response.  When I was in the integrated medicine specialist's office, I was so incredibly ashamed at what I read about myself and very frightened.  All I wanted ... all I wanted was to get out of there, only I was weeping rather hysterically.  I wanted to flee.  I did.  Flee.  Stumbling about with my cane.  Falling to the ground.  Weeping.  Insensible.  Terrified.  Reading about how shame can cause the brain to bypass the neocortex and go into that primal, self-preserving state was an immense relief to me.  I understand that that moment in her office was out of my control.  In fact, I have been able to identify several of my meltdowns being from shame.  Understanding is ever so helpful for me.  If nothing else, it helps me to shift the "blame" for the "weakness" off of my already burdened shoulders.

Next is learning that shame comes from outside of us.  That deserves repeating:  shame comes from outside of us.  What is on the inside that responds to shame is the basic human instinct for connection.  We are driven to connection and we greatly fear disconnection.  It is understandable and human to react to shame in fear and to become overwhelmed by the intensely painful emotions shame evokes.

Clearly, by now, a reader is well aware of my awe for the Psalter and for my love of John 1:1-5.  If you were to ask me, Myrtle, what verse I found most hopeful in the Bible, and I were honest with you, in fear and trembling, I would ... eventually ... answer:  Mark 7:15 "...there is nothing outside the man which can defile him if it goes into him; but the things which proceed out of the man are what defile the man."  Remember, it is me answering.  The one who has felt dirty and filthy her entire life, the one who learned, once in church, that she was no longer pure.  Things outside of me, coming into me, not defiling me is important.  Too, outside of me, coming into me, healing me is important.  That's why I crave hearing the Word of God even when I am too afraid to read it myself.
Third was learning the connection between shame, fear, and blame.  As I wrote last time, it becomes a vicious cycle and can send one spiraling into despair.  Learning that shame is from outside of me, as I mentioned above, eases the blame and helps to break the cycle.  At least, in her office today I entertained non-Myrtle-blaming thoughts for the first time that I actually did not scoff at!

I am looking forward to reading Chapter Two, especially now that my counselor has a copy of the book and will be reviewing it with me.  She has been excited that I found my way to Dr. Brené Brown's research on my own, even it was a bit earlier than she had planned.  Not that it matters.  I was ready, which is what matters.

On a separate note, I realized that when I wrote a list of Go-To Psalms up for someone, I do not think that I posted them here.  But maybe I did and forgot.  Anyway, I wanted to do so again:


Psalm 27: You're being assaulted on all fronts and want relief and all that desire is boiled down to just one thing: to dwell in the house of the Lord forever. Focus. Focus on what you need in the midst of the maelstrom swirling about you. But, hey, it's okay to also ask that God doesn't forget about rescuing you and defeating your enemies.

Psalm 42: Why is my soul in despair? You long for the Word of God, but your soul in is despair. You know these good things of God to be true, but your soul is still in despair. Well, hey, that's okay. God gave you a prayer that lets you know that He knows that even knowing Him and all that He has done for you you can still find yourself in despair. That's life in a fallen world. God understands.

Psalm 51: You're forgiven. God doesn't need you to go out and make yourself better. He knows you've messed up and forgives you. Knowing, actually, that you are going to mess up, God gives you the words to pray to be renewed, to be cleansed ... to be forgiven. To be forgiven and to know that you will be forgiven. The promise received and the promise to come all in one.

Psalm 77: It can happen. You can start thinking that God has left you and that nothing is going to be okay, that He's changed. Then, you realize that it is your upsettedness that is making you think God changed, not that He actually changed. So, remind yourself of who He is and what He's done. It's okay to find yourself having a wrong thought, a bad thought, just follow the plan of the prayer and replace the wrong thought with what is true.

Psalm 104: Man! God is powerful and mighty and cares about every facet of this world. He cares about it and cares for it. And so sing about it. Sing about of all those wonderful things until the wonder dispels the darkness within and leaves you with the glorious and comprehensive reminder of just how connected God is to this world ... and likewise to you.

Not alone...

As I have been reading I Thought It Was Just Me [But It Isn't] a few things have resonated with me, some deeply.  One example is how Dr. Brown states that what some experience as devastating might only be mildly upsetting for others.  Thus, you cannot measure another's shame by what affects you.  An example of this came up recently when someone was trying to tell me that label's don't mean anything.  She shared a label placed on her that was ... not positive ... and how she doesn't feel shame or let it define her.  The very label spoken is yet another one that bothers me and just hearing the label upset me, made me recoil a bit.

I think, now, I have better words to use were the topic to come up again.  It's not about what bothers you; it's about what bothers me.  Likewise, what bothers you, I need to honor and respect the same I wish for others to do.

I've mentioned that Dr. Brown repeats things.  I like that.  I like it because it is reassuring to me.  For example, she writes in the middle of the first chapter:  If we want to successfully deal with the shame in our lives, we have to understand why we feel it and how it affects our lives, including the behaviors, though and feelings we deal with every day.  (p. 17)  That builds upon what I have already quoted from the introduction and the beginning and the end of the first chapter ... all pointing toward how to develop shame resilience.

So, to me, it is not important for me to agree with you about which labels are shameful or not, but rather why a particular label is shameful to me.  What it makes me feel.  How do those feelings affect me?  I am not good at recognizing such or asking such, but I want to learn.

Shame is all about fear.  As I wrote in the introduction, we are biologically, emotionally, socially and cognitively wired for connection.  For many, there is also a deep need for spiritual connection.  Shame is about the fear of disconnection.  When we are experiencing shame, we are steeped in the fear of being ridiculed, diminished or seen as flawed.  We are afraid that we've exposed or revealed a part of us that jeopardizes our connection and our worthiness of acceptance.   This fear is fueled by the sense that we are somehow trapped in our shame. (p. 20)

Shame is all about fear.  Wow!  I actually found that both hopeful and reassuring.  I mean, I know that I have been drowning in shame for years and years and years, but only (relatively) recently have I acknowledged the fear that cloaks me so much of the time.  Right there in black and white tells me why!

When we are feeling shame and fear, blame is never far behind.  Sometimes, we turn inward and blame ourselves and other times we strike out and blame others.  When we blame ourselves, we often find ourselves in a cycle of self-loathing and shame.  Quietly, we emotionally implode.  We lash out at our child, our employee, our partner or maybe even the customer service person standing in front of us.  Either way, imploding or exploding, we are mostly unaware of what we are doing and why we are doing it.  We used blame to deal with our feelings of powerlessness. (p. 23)

I think I would put it that shame is a self-fulfilling prophesy.  Take the idea that we deserve our shame.  Couple it with the idea that blame follows shame.  I am ashamed of the acts my body has been involved in over the years.  What I have done.  [Telling me it was done to me is not all that helpful at the moment.]  What I have done is seen as impure, not worthy of being a good Christian man's wife.  Unclean, even.  Shameful.  I did those things so I am unclean and should feel ashamed.  I didn't stop them from happening. I didn't get someone else to stop them from happening.  It is my fault.  I don't want others to really know me, to really see me, the girl who did that.  Revulsion and disgust cycles with shame and I know that I am bad.

When I wrote about power-over (I'll define who you are and then make you believe it's your definition), the example I should give is how, effectively, I have put that false definition of purity upon myself now.  I have taken on the condemnation for not being a virgin.  But, as I have tried to write before, it is deeper than that.  I am ashamed that I have no desire to take upon wifely duties.  Yes, I absolutely would love to have a husband, to have someone to share my life with, but I do not want to have sexual relations at all.  What I think about that is as revolting and disgusting to me as what I think about myself.  I get that my thoughts are what a young child would think, but they are the thoughts that I have.  Heck, it isn't even lying with a man; it is kissing.  I never want to have to endure that again.

What kills me is, as I have tried to say 1,001 to my close friends, is that what I hear about faith is framed by being a wife and mother.  I am neither of those things and being a wife to a man is something that is akin to horror to me.  It seems to me that I am rejecting everything that I was created to be if I listen to what I hear about faith and women these days.

Even if, somehow, the idea of relations was changed, what cannot change is my lack of virginity.  What cannot change is that I am not pure.  See ... that definition is drilled into me.  "Oh, it doesn't matter, Myrtle."  But it does.  There's a whole industry about it mattering in the Christian world.  And outside the Christian world, too.  SIGH.

What I liked best about the introduction is that Dr. Brown states that she believes that everyone is capable of developing shame resilience.  I have had folk tell me that I will never ... never be a part of a community, never be able to have real relationships, never be able to heal (that was a rape crisis counselor), never ... never ....  My counselor oft repeats that she believes everyone is capable of healing.  I like that and I need to hear it.  So, I liked the particular emphasis in the introduction that shame resilience is not just for the strong and mighty, the fearless and confident.

What I liked best about the first chapter is two-fold.  First, it was an abject relief to learn that shame can cause one to go into fight, flight, or freeze mode, especially having experienced this very recently without really understanding why.  Second, I liked hearing all the things that fit me:

• shame is filled with fear
• shame feels deserved
• shame is like a prison
• shame makes you feel alone, even isolated

Those might seem discouraging, but they are actually encouraging in a way.  You see, reading those made me feel normal in the way that reading The Courage to Heal does.  In that book, I learned the whys and wherefores of much of what I think and how I behave (or behaved in the past), learning that I am par for the course for a survivor of sexual abuse.  I am not crazy or mentally ill; I am normal.   In this book, I am learning what is par for the course with shame ... what is primal and normal to humanity.

And ... oh, my! ... shame may make me feel alone, but I am not alone in feeling and battling shame.

Community...

I found this article yesterday about Isabel Laxamana, a thirteen year old girl whose father cut off her hair and filmed her to shame her after he discovered that she had texted inappropriate photos to a boy.  Izzie, after learning the film was sent to her peers at school, wrote notes to loved ones and then killed herself.  Lord, have mercy.  Christ, have mercy.  Lord, have mercy.

The author points out that suicide is an inherently complex issue and no one can say for certain just how much her father's actions contributed to her desperate decision.  But it is certain that shame is devastating, despairing, and destructive.  Dr. Brené Brown notes out that shame does not change behavior and the author provides historical examples of that.  Truly, Dr. Brown is not remiss in saying that shame is an epidemic, a statement also backed-up by the content of the article.  It is a read that should not be missed.

Again

Lord, have mercy.
Christ, have mercy.
Lord, have mercy.

SIGH.

I know I am not far enough into the book to make such a recommendation, but I am already thinking that everyone should study shame.  For me, I long for my friends to read it.

One thing about trying to heal is that the message I have heard consistently and repeatedly is that I need to be in community.  That I need friends and family to help me heal and help me deal with living with chronic illness.  This is particularly true, I heard, with PTSD ... having folk to help you understand PTSD and your triggers so that when you are caught in the maelstrom of a trigger then you can have a voice outside all that to help you get through it.

I tried to get friends to read The Courage to Heal with me, to be a part of recovery, but I do not have community in that way.  The thing I am learning in counseling now, which is confusing but also resonates, is that healing happens in relationship because the trauma happened in relationship.  Davis and Bass talk about that, but I didn't get it.  I am beginning to now.  One relationship is being built with the counselor.  I will admit that I become very, very, very frustrated when I get told about needing a support group.  You just cannot manufacture one.  And, I'm learning, you cannot manufacture vulnerable and trusting relationships, authentic relationships.

I have trying to be more ... honest ... here.  Dr. Brown would say more authentic.  I write because that's how I process the world.  I write because I am learning more and more how important it is to have things outside my head.  To not foster secrets.  I write to rehearse what I am learning.  And I write to feel less alone, even though my online rememberer is not one that seems to foster comments or engagement.  Really, even though I can see the page views, I still think of this primarily a private journal.  I feel no less isolated for those views because they are, save for three folk I know, like phantom views.  Just me and my thoughts and the things that fascinate and frighten me.  The quotidian and the questions I have.

As I wrote before, because Facebook is a community, I have written as naked posts there as I have here.  And, as I have said, it guts me when I stand naked without notice.

An example of a post trying to speak about the things in my head these days is below:

I put off watching "Longmire," Season Four, as a treat for later. I am not sure why. I just did. Oh, how I wish I knew Episode Six was about rape. I stopped watching "Downton Abbey" because of Anna's rape and the storyline. I know that denial, that pretending nothing happened is accurate, especially from an historical standpoint, but I just couldn't bear it.

I found this episode to be gut-wrenching and very much a trigger for me. The worst part was something I wonder if others even stopped to consider: Henry tells the woman helping the survivor that there is a sweat for women who had been assaulted. She is dumbfounded that there is a sweat just for that. Almost as if there could not possibly be such a need. All I could think is that there is most likely a need for more than just one regular sweat even in that small community.

I have tried, rather unsuccessfully, to find a sexual abuse support group in Fort Wayne. The only ones I have found are private practice one that cost money. It staggers me that with the reported sexual abuse rate being 1 in 4 females and 1 in 7 males, why there are not as many sexual abuse support groups as there are AA meetings! Not even the local hospitals run sexual abuse support groups, but by golly they run groups for everything else! SIGH.

I have actually wanted to find an Al-Anon group, too, that I could try because more and more I think that it is important to consider what it was like growing up with alcoholics in my family, especially the ones who were violent and angry drunks.  It is not something that my family ever talks about nor something that I thought about until recently in my life (after moving here).  I think the alcoholism is a few (if not dozens) of the puzzle pieces of me.  

One reason I think this is because I saw this al-anon meeting in a fairly realistic movie and one of the speakers talked about how children of alcoholics struggle to learn that they are not responsible for the feelings of others.  Oh, my!  I heard that and literally did not hear anything for the rest of the movie. I just sat there thinking and thinking and thinking.  And at my next counseling appointment, we talked about it a bit ... but I need much, much, much more talking and thinking about it.  Because.  Because do I ever have a problem that ... battle it ... have not a clue how to not be responsible for the feelings of others.  SIGH.

I very, very, very much want to stop feeling responsible for the feelings of others.

And I want to heal.

And build shame resilience.