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I am Eric’s Wife. I am also mother to two teenagers on the very cusp of adulthood, the founding director of Scripture from the Heart, an avid world watcher, bold and insecure at once. I serve a merciful God and I love a guy who makes my knees weak. This is where I write about it all.  Thank you for reading!

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Amy is Going To Be Okay (part 2)

March 26, 2018

A steaming mug of coffee in the thickest possible ceramic was set in front of her.  A no brainer for most.  Just slip your fingers through the handle and around the warm cup, raise it to your lips, take a sip.  Easy.

Before the waiter can escape, “Could I have a straw please?”

Eyebrow raised in a question mark, “For your coffee?”

She raises her gnarled, limp, and useless hands from her lap to demonstrate and repeats a line she has said a million, “I have rheumatoid arthritis.”

I was four.  I wanted a straw for my chocolate milk.  I had no idea leading up to that moment that a straw was a tool for the disabled and required medical need.

“I also would like a straw.  I have… (pause for effect)…  tricycle disease.”

It was the biggest word I knew.  The waiter callously laughed at my very serious and possibly terminal condition, my grandparents laughed, they all laughed.  And I got my straw.

I don’t think that was the first time I fantasized about having some sort of dramatic illness.  It is just the first time I remember when the connection was made between being ill and getting special accommodations.

My grandmother was spoken of in my family as one speaks of war heroes.  Disabled since age 12,  she never stopped living and her glow and faith seemed to advance at twice the pace of disease.  She was a giant among men.

I wanted to be spoken of in the same way.  I wanted to be a giant.

I wanted to be ill.

It is not something I admit with ease and I am certain this can dissected in a thousand different ways for your own armchair psychological diagnosing.  I’ll just have to trust you with this confession because this story can’t be told honestly without it.

When I had my sensational daydreams about being ill, I had a few go to musts for my fantasy illness.  It had to be very serious, but not disfiguring.  It had to appear intensely painful, though I only imagined my heroically grimaced face, not actual pain.  It had to be an illness that would summon people to my bedside, where I would sit in a smart bed jacket and declare the wisdom of the ages.

Being ill was a role I was very well rehearsed for.

Until I was ill.

During the first days in the hospital, when nobody knew what was wrong, but only that something was very wrong, I was terrified that I may have gotten my wish for an illness and suddenly I didn’t want to play any more.

When it was diagnosed as transverse myelitis, and the prognosis was that it was a passing thing, I was desperately relieved and a little bit thrilled.  I would get my bedside visits, my wheelchair photo ops, all the glamour and praise of a real trouper, and still finish my senior year without much of a hiccup.

It was that numb forehead that undid me.

For months I had been stoically bearing the weight of illness and dispensing wisdom to all passersby like some sort of  undiscovered Oprah Winfrey.  I was brave, so brave.  If you couldn’t tell just by looking at me, I would do you the favor of telling you as much.  I knew it wasn’t going to last forever, so I was wringing the role out like I was Ted Danson and transverse myelitis was my Cheers.

While I was still in the rehab hospital I saw a PSA that haunted me.  A woman was sitting in a wooden chair, looking well, and then suddenly barbed wire came and wrapped around her hands, and then her feet.  I identified with the image immediately because that is what my condition felt like.  And then the barbed wire wrapped around her eyes and her mouth.  It was a PSA for MS.  I had no idea what MS stood for, but I knew that I was glad I did not have it.

When the neurologist called at 7pm and asked for an early morning visit, I felt barbed wire wrap around my forehead.  Whatever MS was, I was pretty sure I had it.  I lay in bed that night, coming to terms with it.

The next morning seemed like one long formality.  I sat in the exam room while the doctor talked with my parents, showed my parents MRI slides, told my parents about treatments available, explained to my parents my prognosis and then comforted my parents with the understanding that this must be very difficult for them.  I still am not sure why I had to be there.

While they talked, I floated outside of myself and took a good long look at me sitting there.  My fingers were a tangled mess in my lap; I had gotten good at lacing them together like a normal person, but I missed a few when going too fast.  I wore a dress that I hated and my make-up had been applied by my Mom.  Everything about me looked and felt like an invalid.  Invalid.

The scenes I had performed in my daydreams were always hazy visions of 1)me being terribly sick in a hospital bed or 2)me bravely doing whatever I have to do, exercise in a music montage, whatever, to get better and overcome.  There was absolutely no time in my fantasies where I had to do real life with hands that couldn’t even fold properly, wearing dresses others chose, and makeup others applied.

I was prepared for this role like a hipster in a hoodie is ready for a Siberian winter, but there was no way I was going to let on that I had no clue whjat the next step was.  I had studied under the greatest and I knew the words to say.  I leapfrogged all the stages of grief and jumped right to guru of acceptance.  A very keen eye might have spotted my clever performance for what it was, but I am really a very good actress.  Or, people are too polite.

I spent the remainder of my junior year at home.  My legs returned to a rubber like state and I was reduced to using a walker after two months of walking progress.  The school district sent a teacher to my house twice a week and I went to rehab weekly.  Occasionally, nurses come to the house to administer IV steroids.  I was prescribed a t-cell modifier which had to be injected every other day.

My life was not my own and I felt like an infant that had to be carted around, dressed, hair brushed, and then placed in a comfortable spot until I needed to be placed somewhere else.  From my perch I would wait for new faces to appear and notice my sad state.  The smile was always awkward.  Everyone wondered if I was going to be in this condition forever.  They all marveled at how brave and stoic I was about the whole thing.

What I said to them was always some practiced talk about how I absolutely knew God was going to take care of me and that I was prepared to go through whatever fire MS sent my way.

Oh, Amy.  You are just amazing, aren’t you?

Yes.  I know.

The real truth behind my amazing attitude?  Really?  The truth is that I was 17.  My perceived reality was that everything was going to be just fine and my parents were going to figure something out because they always did.  Also, God, as I understood Him to be, was well aware of my condition and He was going to get to me after I had twisted a bit and He felt I had learned my lesson.   In the meantime, I just had to keep it together and play the role I had been destined to play.

In the summer months before my senior year. my grandmother became very sick when an infection developed in her artificial hips.  The hips had to be removed, but her bones were so degenerated from disease that she could not get a replacement.  She chose to keep the hips in and stop having invasive procedures.  She did not get a quick death.

Days before she passed, she was in and out of morphine/pain induced comatose like state.  She looked to my mother and said her very last words and she said them with blazing wide open eyes, “Amy is going to be okay.”

“I know, Mom.”

And then, as though she feared she wasn’t believed to be speaking truth and had to be reiterated, “No.  Amy is going to be okay.”




2 responses to “Amy is Going To Be Okay (part 2)”

  1. Sandra Dodd says:

    I love you. What an amazing woman you are!

  2. Jennifer Mack says:

    I am trying to think of words to say, I am literally speechless from your story. That almost never happens to me!

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