The Land of Confusion

Shanna and I discussed CONFUSION this week. EMDR brought me back to a time when I saw people who were supposed to love each other fight like maniacs – screaming, yelling, violent shouting that went on and on and was often caused by insignificant conflicts. I hid in my closet. I was 10. I wondered if the police would come and break it up, like I saw they did for the neighbors sometimes.

1) Was this how people who loved each other were supposed to communicate?

2) Where was the parent in the room? The parent who should have had some control, who should have been acting mature? 

If I had been the adult ME there…I would have thrust myself in between them. “You – go to your room! You – go to your room! Both of you stop this! You’re acting like imbeciles and need some cooling off. Can you not hear yourselves?” But there was no adult there. No parent. It was unsafe. And it makes me angry, frustrated and upset. Could something like that situation occur in our home now – with our family unit? I believe as a mother I have lost my shit many times with both Marc and the kids. And often over stupid stuff. Did it ever turn into a verbal screaming match that lasted an hour and could be heard by neighbors? No. Absolutely never. 

That place of confusion is one that makes me very uneasy: I long for structure, for schedule, for lists, for goals and plans to take in pursuing goals. I’m a nursing care planner, a mother of many. I do not exist well in the state of chaos. To some, it is their comfort zone. But not for me. 

While I’m a planner and implementer, I do not view the world with rigidity: things are GRAY. Sometimes someone oversleeps and we have to adjust the plan. Sometimes someone gets sick, something gets forgotten, the weather gets in the way…it happens…and I adjust. Pretty easily. Plans are already forming with adjustment in place. It’s all good. Everything is a work in progress.

Shanna challenged me to think about the confusion of chronic pain…as soon as I walked out the door, an outline with bullets was forming, the soundtrack was Phil Collins “Land of Confusion”

Too many men,

There’s too many people,

Making too many problems.

And not much love to go round.

Can’t you see 

This is the land of confusion?

Was that song always playing in there? Hmm.

Anyway, as Phil whines away, I see clearly, confusing issues I’m dealing with:

*There’s this point in Chronic Pain…you’re sure you’re in pain. Sure of it. But it goes on and on. And as it does, Pain becomes a normal state. So then, you’re questioning the pain – is it real? Of course it is. But can people exhist with constant pain? Have you heard of that? How can they not get better? Have you heard of that? Are they just grouchy complainers? I don’t think I am a grouchy person. Or a complainer. But I keep falling back into pain state. Why is that? How did that happen? Despite carefully replanning my life to avoid pain and things that might cause me pain… It’s there. Almost always, a dark passenger, a shadow behind my eyes. What is that?? 

*You see doctors, therapists, practitioners of all kinds…take medicine that will fix you, do therapies that will fix you, follow treatment plans/diets/regimens…and you don’t get “better.” But you’re supposed to! They said you would! You must be doing it WRONG if it’s not working – right? Because I was raised in a place believing everything was my fault. 

“See what you made me do??”

*And above all Phil Collin’s plaintiff wailing, is the recurring question… What did I do to make this happen to me? Where did things go wrong? I have one friend who says everything was fine until a few months after her Gardasil vax, she fell ill with CM in college and has never recovered. Another friend says it was an ER visit – she was controlling her migraines pretty well until one landed her in the ER where she fell asleep in a funky body position and she hasn’t been able to recover from CM. All these stories…all these attempts to pinpoint the thing, the moment that sent us into Chronic’s chaos. Was it because I was taking too much ibuprofen? Or was I taking all that ibuprofen because of the pain? A-ha. See the dicotomy? Can it ever truly be one thing that caused it all? No one knows. Or if they do know, they aren’t telling me. I just read an article on Facebook today blaming root canal for incredible maladies – including breast cancer. So…who knows? All I do know is I don’t have any cavities and I’ve always wanted to avoid root canal. So there’s that, Phil.

Confusion. How do I get control? Or surrender it? Am I in control? Are we ever? What am I supposed to do with the pain? Am I supposed to be doing something I’m not? What the fuck happened to my life?

This is the world we live in.

And these are the hands we’re given.

Use them and let’s start trying

To make it a place worth living in.

My head was decent Wednesday (the kid’s first day back to school) and Thursday and even this morning. But it’s smoldering in there as this Friday moves on and I cannot ignore it’s painful wails and migraine symptoms anymore. Friday migraines. Always fun. I have errands to run and a wine tasting party tonight at our friend’s.

“Land Of Confusion”

I must’ve dreamed a thousand dreams
Been haunted by a million screams
But I can hear the marching feet
They’re moving into the street.

Now did you read the news today
They say the danger’s gone away
But I can see the fire’s still alight
There burning into the night.

There’s too many men
Too many people
Making too many problems
And not much love to go round
Can’t you see
This is a land of confusion.

This is the world we live in
And these are the hands we’re given
Use them and let’s start trying
To make it a place worth living in.

Ooh Superman where are you now
When everything’s gone wrong somehow
The men of steel, the men of power
Are losing control by the hour.

This is the time
This is the place
So we look for the future
But there’s not much love to go round
Tell me why, this is a land of confusion.

This is the world we live in
And these are the hands we’re given
Use them and let’s start trying
To make it a place worth living in.

I remember long ago –
Ooh when the sun was shining
Yes and the stars were bright
All through the night
And the sound of your laughter
As I held you tight
So long ago –

I won’t be coming home tonight
My generation will put it right
We’re not just making promises
That we know, we’ll never keep.

Too many men
There’s too many people
Making too many problems
And not much love to go round
Can’t you see
This is a land of confusion.

Now this is the world we live in
And these are the hands we’re given
Use them and let’s start trying
To make it a place worth fighting for.

This is the world we live in
And these are the names we’re given
Stand up and let’s start showing
Just where our lives are going to.

“It’s just a bad phase”

I’ve had 2 practitioners mention to me lately: “This is just a bad phase you’re going through. These migraines will not be like this forever.” (Mariah, Neuro PA, Shanna, LPC)
And just cuz I am the obsessive chica I am, these remarks have unleashed overthinking in my pea ow brain.
It took me years to comprehend the concept of “chronic” meaning, it cannot be cured but managed. Every bleeding day I try to muster my way around the amount of fight, acceptance, or whatever to make room for this dark passenger Chronic Migraine. Everyday I work on the Hope factor.
But never had I been told: “this is just a bad phase.”
I feel like such an idiot. Didn’t I realize in the last decade of living hell that this was “just a spell” and it wouldn’t be like this “forever.”
Well…what the fuckity fuck?
When does it end? Tuesday? Next year? In 5 years? In another 10? 
I am such a rockstar patient. Always willing to work with my practitioners, try my hardest to comply and succeed in their ideas and efforts. I keep on top of the data. I’ve switched my diet to a dozen different things – drank the magic juice. I even have a churchload of people praying my migraines away.
I thought I was “handling with Grace.” I thought I was “managing with faith and hope.”
Turns out… Well I don’t even know.

Childhood trauma leads to lifelong chronic illness — so why isn’t the medical community helping patients? | ACEs Too High

I both appreciate and detest this article for it’s truthfulness and validity. When I think of what it means, I feel like I can barely breathe. Invisible hands close around my throat – it can’t possibly be all that simple, can it? Can it?

This is much of the premise of my therapy Integrated EMDR for CM. When I met Shanna a few months ago, she stated the premise of the article as casually as describing the weather. I was doubtful. It couldn’t be that simple – could it? What about genetics? Illness? Diseases? Was it all really just from a childhood trauma? When I named the trauma to her, she didn’t blink. And she’s been only the second therapist in my life to validate my bizarre experience.

Through EMDR, there’s a plain little girl tucked into the back of the wood rectangular family dinner table. I can feel the way the table felt, I can smell it. I can see the dinnerware I ate on/drank from every night. Tucked in the back end of the table – where no one else could fit. In my large family, I would participate. I would talk and engage. But it felt like only my mouth was moving… no words, no noise – like a mute. While I wasn’t heard, I certainly wasn’t invisible… No, not at all. Had I been absent from the table, there would be hell to pay. And I was so hungry (from not being allowed to snack), I would’ve showed up to eat anything. I would be seen but not heard. When you’re born into this game, you don’t know anything else, and your whole life revolves around these basic human needs. The need to feel loved, to be acknowledged, to connect with your loved ones. 

And I would go inward… Where I could be with my dreams. When you’re brought up to believe everything is your fault, you believe there’s something inherently wrong and bad about you. It would be decades before I discovered that “black thing deep inside me” that I hid from the world, was really me – the real me – and I was kind and compassionate and talented and smart and loving and curious and funny. Nothing black or evil about me at all, in fact. On the outside, I kept up the facade. And oh my, was it a lot of work. Because the rules to being the perfect daughter were always changing – that’s what they do. How can you “win” a game where the rules always change? There was this small part of me that knew something wasn’t quite right about all this… I referred to it as a bad feeling. And it would stop me in my tracks occasionally. 

We all played our roles in the Game: the golden one, the scapegoat, the lost one, the funny one, the quiet passionate one, the troublemaker, the caregiver. And of course the personality disorder and a whole lot of codependency. We were pitted against one another and didn’t know it, we were pawns. The other children would be told about how great we were – it was kept a secret from us.

And now there’s this: Chronic Migraine, Rheumatoid Arthritis, Sacroiliac Dysfunction, Depression and Anxiety. Do I wear my childhood as a Chronic Illness??Does that make the illnesses real or some kind of psychosomatic bullshit? And if it is the stupid ridiculous trauma, how can I fix it? Can I ever be well? Or am I made *more* well simply by the fact that I can acknowledge my childhood had a huge role to play in my Illness? And how foolish does this make me feel? How many tears are enough? When don’t he stop coming? When does the jail sentence expire? When do I allow myself freedom? 

No one has answers. Or do I just not understand the answers? 

There is a real reason I state adamantly that none of my children will ever develop a chronic illness. A real reason; I will never allow it to happen; and their childhood is meticulously void of the trauma I faced. They are cherished for exactly who they are, not who anyone decides they’ll be. Everyday, every single day, I strive to learn more about them, I listen to them, I ask them about their dreams and thoughts. And I know and believe with all my heart, that they are absolutely PERFECT just the way they are. They are separate individuals from me – not extensions of my life. God has blessed Marc and I with their care until they go off into this wide world to live their adventures. They saved my life, by ripping open the box of my childhood and exposing it. They made me face my demons. They helped me learn how to parent and love unconditionally. They saved me from myself and my pain. Every single day of their lives, I fret and fuss (“am I doing to them what was done to me??”)…the anxiety is incredible. I’ve been assured by many wise people: “By the simply fact you worry about this, you are NOT doing it. If you were, you wouldn’t be worrying about it.”

So now… Am I cured? Am I better? What’s the deal?