Sunday, September 11, 2016

The Invisible Woman

This post was going to be about my almost perfect day!  I was going to spend an hour or more talking about Saturday when Spencer and I ran away to Bannack State Park in Montana.

I was going to say how happy it felt to be in the middle of nowhere walking through a completely abandoned town that was once a flurry of life during the late 1800's and the Gold Rush.

History stood still and if you were quiet, you could hear the walls, whispering promised secrets of the people who lived there.  The floors bowed and groaned under pressure from the intriguing stories the walls were built upon over the years since it had been forgotten. And Grasshopper creek looked more like it should be named Coffee Creek as it crept along in deep rich tones of gold and copper and birds hid in the tall grass and my world was quiet and still and worries floated down the creek and around the bend from where I stood.

And, I would have spent a dozen paragraphs in thought about how wonderful it was to see Spencer enjoying the day too and sharing in this memory and getting the coolest video clips for his next video masterpiece.  He has an eye for the art of video.

Instead, of that story, another story is begging for attention.

The story of how Shelbie was living life and loving life and laughter and fun, filled her Saturday night until it was bulging with happiness.   That is, until she was struck with overwhelming, knee dropping chest pain that led to her arm and into her jaw.

I was calm, maybe too calm to instill confidence that I would and could take care of her.  Even though her history of arrhythmia, holes in her heart, pulmonary embolisms begged a different response, I was calm.  I felt like things would be okay but all the same, what if it wasn't.  I didn't want to be responsible for her demise because I watched and waited one second too long. After nearly an hour, as it was, we headed to the ER.

They did their thing.  The process seemed slow and tedious and we had been burdening them for hours already when the doctor came in to deliver the diagnosis.  He was a new doctor.  One we have never met and my heart felt a little disappointed that he didn't know us but maybe that really didn't matter.

Shelbie was not having a heart attack and there was no sign of a blood clot passing through either.  Instead, the doctor began a soapbox of convincing rhetoric on the virtues of panic and anxiety and it really isn't something to feel ashamed of so he loaded her up with an IV full of Ativan.  Surely, in such a condition, this would be the correct  treatment.  But, it wasn't.  Her pain increased and spread and it was like nothing she had experienced before and she repeatedly offered that information.

Still, he was not convinced.  He began again, to preach on how it makes sense she would be so out of control and panicked, who wouldn't be given the life she lives and the complications?  But she wasn't panicked and out of control.  She wimpered softly to herself, not in heaves of drama.

And so I said, "I agree that anxiety and panic can have the effects you describe but this is real pain not caused from anxiety or panic.   She handles her life just fine.  She was having fun.  I don't see this as an anxiety issue."

Immediately, he raced to dismiss my thoughts and the last thing I will do is engage in a fight with an ego.  I retreated to myself and in that moment, I realized that he wasn't even seeing us.  We were invisible to him.   His ER wasn't about speaking your truth, it was about validating his.  He was good at his game and soon, I felt small and embarrassed and too big to be in that room and my elbows wanted to stretch through the walls and when he stepped out, I wanted to explode and ricochet against the walls .  I wanted to make sure he saw us and heard the ruckus and rumble I was capable of.  I wanted to rip out her IV and snatch her from the bed and storm out with my daughter in my arms.

I felt like I was going crazy and I doubted everything I knew about my life, about her life about the disease.  I wasn't even sure what was real and what was not.  My insides did not match my outsides and down the rabbit hole we went.

I am so very tired of every discomfort we feel, being wished away by the world and the people around me. I am so tired of being invisible to people.   I'm tired of the shoulder shrugs and the distance people keep from us.  I'm tired of people walking around us like we don't exist because they don't want our messy life encroaching on theirs.   It's the equivalent of people saying how are you, and when you say you are falling to pieces and dying inside, they say, "Good.  Good to hear."  They didn't hear.  They didn't see.  They didn't care.

And when he came back in for round two of his argument for anxiety, all I could do was wish his mouth would stop running.  He was condescending but sweet.  He was passive and knelt beside her bed yet aggressive and he was right and I was wrong and Shelbie was sick.

"Listen, you are going to go home and get some sleep but if anything doesn't feel right or doesn't go away, then you need to get in here right away.  I can't guarantee you won't have a heart attack or pass a blood clot.  Okay?"  With those completely stupid words, we were handed the discharge papers at nigh on 3 am.

And in the folds of my angry breath, I said, "She didn't feel right.  She still doesn't feel right and all the Ativan in the world didn't change her symptoms."  But those words coiled back into my throat and I choked back the tears as I left to get the car.

There is nothing worse, when living with a chronic disease such as this, in feeling 'other'; invisible. We walk with one foot in your world because we have too and cling to ourselves in our lonely other world and that is harder than anything else we have ever had to do and I don't quite get it. And this may very well be the most raw, honest words I have ever uttered about living this life and I may live to regret it.

But alas...such is life...raw, real and honest.

Shelbie is still not doing well and I don't really know how to keep her comfortable.  Maybe this disease has finally gotten the best of us, grown beyond what we are capable of caring for.

I will probably retreat this week from too much writing and gather some strength for our nail biting trip to Utah at the end of the week for Spencer's pace maker/defibrillator consult and his bone marrow biopsy.  When interactions like we had this weekend happen, I get easily lost in the mix and quite honestly, lose faith in humanity for a while and it's just better to be alone.  Sometimes, I don't recognize this world or the people who inhabit it and I wonder what in the world I am doing here.



  1. Kathy...I wish I was as good with words as you are. I wish I could express to you how much I think it sucks that you all have to go through all that you do. It just sucks.I don't get it. I so wish Spencer could be in Utah with Kellon going to school and "hanging out" and doing all the things that someone his age should be able to do. And the same for Shelbie and Sam. I wish I could take some of the heaviness away for you all. I wish it was easier for you. I can and will continue to pray for you. You are all amazingly strong people...this I know. I wish I had better words...

    1. Thank you Suzann...I have the same wishes; that Spencer could rewind his life to a simpler time and being down in Utah with Kellon would be awesome! We will get through, most days, it's okay. Today has been better. Thank you so much for the prayers and your thoughtful words!