Worth...

It has really bothered me ... what Becky said about not realizing that I do not believe that I am worth care.  Not that she said it.  I remain deeply ashamed that she and my counselor were there that Thursday night in the hospital to witness my meltdown and failure to contain my fear and shame any longer.  I wish there was some way to erase that moment, the witness of my naked soul.  SIGH.

But I do not mind that she said it.  I even mentioned it to my friend Mary and her response, in a way, was even more disturbing ... along the lines of my being surprised at what (all) I think toward myself.  That might not make sense, but the way I read the single, devastating (but truly welcomed) sentence was this observation that if I were to examine what I think and feel about myself even I would be surprised.  Probably by how much I ... well ... maybe I shouldn't fill in whatever her words might be.  But I have been thinking about both what Becky said and what Mary wrote in response.

To her credit, my counselor has not talked to me about that night because she knows how much the thought of her and Becky and the nurses seeing me like that fells me.  I mean, I hinted and hoped she would come.  I wanted her to put the proverbial finger in the dike that was my cracked self I feared would shattered.  And, when it did still waiting for her to arrive, I hoped she would come and DO SOMETHING.

She did.  She got the charge nurse to come in so that I could stumble my way through saying that I couldn't bear the night nurse.  Maybe ... maybe if I had not had the interrogation and if I was not bearing the burden of what happened in the procedure room and if I had not spent nearly two days having to ask folk to take me to the bathroom, I might have been able to spend the night with someone I found so ... combative.  But not then.  Definitely not then.

The thought of the long night and asking that person to take me to the bathroom was the proverbial final straw and, in the spate of a short period of time, I shattered and was helpless to pick up any piece of me.

The Parkview nursing staff were (aside from that one woman) very determined to help me feel safe, to preserve my modesty, to let me navigate my struggles with holistic means, and to maintain my daily routine (where possible).  It is ASTOUNDING what they strove to provide for me.  But even experiencing all that, I did not believe (nor do I now) that I am worth the bother of changing nurses.  You should have just bucked it up, Myrtle.

This article is not exactly what I am thinking, but it gave me pause.  It is about dignity and the chronically ill.

I wish I could use the author's words to help find a way to say what I want to about worth.  Because worth remains very much on my mind.  I am all tangled up between worldly worth and Christian worth and —I guess—what the author writes about dignity:  the state or quality of being worthy of honor or respect.

Do I deserve dignity?  From experience, I would most decidedly and emphatically shout, "NO!"  The author mentions an experience in the hospital where she was shown no dignity and how that affect her view of her worth.  It is not that I am discounting the worth of Jesus dying on the cross for mankind, but when mankind treats you horribly, it is just very difficult for the weight of Jesus' loving sacrifice to be greater than the wounds and burdens the world inflicts.

And, to me, wounds and burdens that are deepened and made greater when folk start telling you what you "should" be doing or thinking or believing without stopping to try and understand how that might be near impossible for you.  All those "should" become more failures to pile upon the failures you already face and the worth of your life shrinks to the minuscule, the microscopic, the inconsequential.

Today, I was trying to finalize some small gift orders and a comment about my changing the order several times was passed along.  Those words hurt.  They shouted that I was not worth the effort to work through finding the right combination of items for each package.  They screamed that I was being a bother and should have done a better job figuring things out for myself, remembering for myself.  I held my nausea in check to finish the order and then raced to the bathroom once I hung up.  Only I didn't make it and ended up puking in front of the Christmas three since I cannot really race anywhere.

I lay on the floor, weeping, wishing I could be anyone but me, wishing Georgie would stop working and so my heart could slow to a stop the way it is trying to do so every darn day.

I tried to be organized and helpful by creating an email of all the things I needed in a sub-divided list rather than a flurry of texts.  Emails can be edited in response as orders are finalized.  Emails can be printed and used as a check list.  Emails, to me, were a way to make my orders easier and less of a bother.  But what I heard ... not, mind you, what was most likely meant, was that my multiple emails with changes were ridiculous and and the very opposite of what I intended: bothersome.

It was weird for me to read the actual definition of dignity because I am not sure I would have been able to define it properly.  And it has melded into the scattered and disturbing thoughts I have had about worth.

What is the truth about me?

As a child, I was not worth rescue. I was not worth help.  As a teen, I was also not worth rescue, not worth help.  When I told of an incidence of abuse that happened in my first church after I became a Christian, the response was the admonition that surely I did not want to hurt Jesus by hurting His church.  If I spoke further about what had happened in that Sunday school classroom, I would be hurting the church.  What good Christian girl wants to hurt Jesus?

I told, here and there, though I am not sure why.
I told and nothing happened.
I told and learned my worth.

Even though I know that I did not deserve what those men dealt out to me, I believe that I did.  I do not know how to change the belief, or the thought.  That is part of the teeny, tiny steps my quaking self is trying to take.  What my counselor was trying to say about my wanting to talk to Dr. Kennedy about the pain.  I am worth her time and attention, her medical care.

Even typing that makes me snort.  I think that I should just buck up and swallow this like all the other  wretchedness that is life with Dysautonomia.  Don't bother anyone.  Just endure, because nearly all of the time there is nothing to be done and with most of my pain, that is the case.

Dr. Kennedy ... she treats me with dignity, by definition.  What if, really, all I want to do is say to her:  I hurt?  To have the terrible pelvic pain acknowledged outside of my own person?  Is that worth the cost of the appointment?  Is that worth time in her rather busy schedule?  I don't think so.  My counselor does.

I hurt.  I hurt and some days I struggle to bear that hurt because I am oh, so weary of all of this.

When I was a summer camp counselor, I was the only non-college-athlete counselor at the sports camp.  I taught outdoor adventure (canoeing, repelling, and archery ... I left the snorkeling to others because the fish in the water terrified me).  That summer, several of the counselors were injured.  The others were taken by ambulance to the hospital.  I had to take myself to the camp nurse, who was actually a pre-med college student, and who dismissed my injury as being whining.  I walked around on a fractured ankle until my inadvertent cries of agony when I moved it just so because too disturbing to the campers and I was called into the director's office.  So, I drove myself to a doctor in town and learned that there was little to be done because I had let the injury go for too long.  He sent me home with a walking cast and dire words about the future stability of that ankle.  Not only did I not receive the same care as others, but I was never told that my injury would be covered by worker's compensation and I was entitled to medical care if I wanted it.

Some of those ambulance rides came after my injury.  Those hurt.

There were lots of lessons about worth.  That summer, I learned my worth once more.  And those lessons, as much as I wish they wouldn't, crowded out anything that you tell me about my worth in Jesus.

That used to be a secret, private, never-to-be-spoken or even thought thought.
But now it are not.
And I don't know what to do with it.

I have been watching this new show.  It is not exactly a good show to be watching, but it is about very, very, very broken people.  In it, there is this episode where the adult child is being humiliated by his parents telling horribly embarrassing stories around the Thanksgiving table.  The parents proffered absolutely no dignity to either adult child, who bore the wounds of having such a negative narrative built out of their lives ... for their whole lives.

My sister taught her children that to be wildly upset was to be a ________, where the blank is my legal name.  Yes, when I was young, I fought with my siblings.  That was wrong and I am deeply ashamed of that time.  But what I am learning to acknowledge is that fighting was something that I could do in the midst of the chaos and trauma of my life.  My name has become a pejorative:  You don't want to be a _________, do you?

I hear, often, from one family member about my only eating white bread.  I was a youth at the time.  I started eating different breads thirty years ago.  But my narrative has never changed.

Watching that episode, I thought about all the people who will be visiting their families this holiday season, girding their loins so as to bear such negative narratives being told and re-told about them.  I wish for them a cessation of embarrassing stories and, instead, a celebration of their lives.  And I think about how easily that sort of narrative is told from table to table,  school to school, office to office,  church to church.

Repeatedly hearing your flaws and failures teaches you your worth.  A wrong lesson, to be sure, but one that makes hearing about your worth in Christ both painful and (secretly) incredulous.   How can that possibly be?

Why do you tell such a negative narrative about yourself, Myrtle?  Because it is the one I was taught again and again and again.

Tuesday, only because I brought it up, my counselor said she was glad I was there that night.  "In the hospital?" I asked.  "Yes," she answered.  Unspoken was the next part ... because you were not alone when you shattered.

I have thought, often, about Becky's observation.  And I have thought, often, about the replacement night nurse.  That very young woman who, essentially, took up the shattered pieces of me and held them until I could take them back.  She spoke to me over and over the words I wanted to hear, the words I needed to hear.  Each time I apologized for all the bother, she cut me off.  She cared for me as best she could that night and, in doing so, mitigated much of the ... harm ... of my meltdown.

What I spoke to her, over and over again, were my fears ... all of them welling up and spilling out and drowning me.  She did not tell me I had already spoken them.  She did not ignore me when I spoke.  She got right down next to my bed and listened to me and then addressed each fear with alternative thoughts.  She did that many times, each time almost as if it doing so was the most important task of her night.  It was confusing and it was comforting.

She did not "should" me a single time.

Why then ... O my soul ... can not that be the lesson of my worth? Why can not Mary's unwavering support over the past few years be the lesson of my worth?  Why can not Becky's friendship of more than two decades be my worth?

No, I think.  My worth is the girl who was taken for sailing lessons and was given, instead, still more lessons on the male anatomy and why she was born into this world ... to service men with needs.

Mary is right.  I would be horrified to know, to really examine, what I think and feel toward myself.  I don't want to know.  But if I do not examine the whys and wherefores behind my own measure of my worth I will never have a chance to escape the negative narrative of my life.  And I very much want to leave that language behind ... especially because I no longer have the strength to keep it hidden deep inside.  Maybe my façade was not all that great, but it was something.

Being clothed in your fear and shame for all the world to see is as wretched as living life with Dysautonomia.