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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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Watch That First Step (part 1)

March 23, 2018

“Hey Amy, watch that first step!”

I had fallen down three concrete steps in a slow motion tumble on full display of all who were attending that Friday night football game.  It was an obvious joke to make at such a fall and I can’t blame the joker.  My cheeks burned and I felt myself do a full play by play review of what went wrong.

I was at the middle of the stands, coming down the steps.  My hand is on the rail, I take a step, and there!  There!  Back the film up and zoom in on those feet.  See!?  See!!!???  I did watch that first step.  It was clearly an equipment malfunction.  My left knee was badly scraped up. though it was thankfully hidden by my black tights and faded black denim skirt that I was wearing because 1994, that’s why.  I remember the fall well because it was the first time I remember ever being fully aware that my legs had simply quit on me mid step.

When I got home I put a bandaid on my knee.  Something about the fall and wound seemed significant, like a dark cloud.  I couldn’t express those feelings to anyone because I was already a known drama queen who could put a Rod Sterling stink on just about any kind of moment.

Weeks before my fall I had been complaining about my hands feeling numb and clumsy.  This got me two visits with two different doctors who officially diagnosed me as a drama queen.  I couldn’t argue with them.  I AM a drama queen, but deep in my gut I felt like drama queen was a co-concurring condition with something else and I knew there was no way I could convince anyone because I had already overused my fainting couch moments.

Sigh.  It is a burden that few understand.  My salts, please, and a water before I continue…

I was a junior in high school, just turned seventeen, and I had great hair.  Great hair is not all I had going for me, I just feel you should know that I was 17 and aware that I had great hair.  That should pretty well button up my character mock-up.

I was one of an ensemble cast in our school’s production of Neil Simon’s “Rumors.”  It was my first big role in a grown up play and I was confident in a way that could easily be confused for extreme narcissistic diva, but you would be wrong.  You’re always wrong.  Where’s my water?

My role in the play included pouring drinks for all the other characters using a very heavy crystal decanter and glass set.  During rehearsals we would have maybe ten glasses strewn across the set.  The decanter seemed to get heavier and heavier.  I asked if we could keep it a little less full and was again diagnosed as a drama queen.  A drama queen among drama queens is a distinction that I do not bear lightly.

Opening night was one week after my fall.  By then, I simply could not lift the decanter any more, so I cleverly searched for drinks that others had already poured and simply used that one.  So smooth.  We had three glasses on the set at the end of the night and everyone learned that they had been sharing.  The show must go on.

I may have performed that play only once, but it was possibly twice.  My Grandmother was visiting from Lubbock, TX and she did not like how I was looking.  She was a dear figure in my life and I remember going in to her room one night during that visit and crying because I felt like I had been ignoring her, but I was just so tired.  She patted my head and said that she knew something was wrong.  She was always good for seeing through my drama.

The next day after my crying spell she took my parents out for lunch and told them to get me to another doctor, offering to pay if finances were in the way.  This was back in the day of good insurance, so the only real hurdle was believing me.

They came home from lunch to find me asleep on the sofa, having come home from school and deciding to stay home and sleep until my performance that night.  I was asleep, but I know Grandma gave side eye to my parents.  Not that they deserved it, but I feel certain it happened and that needs to be a part of this story.

Grandma had an idea that my problem was multiple sclerosis, not that she said a word of that to me.  She told my Mom to get me in a nice hot bath, telling me that it was to get ready for the play, telling my Mom that heat would make MS flare momentarily if that is what it was.  She was always good for going behind my back and talking over my head.

I washed my hair, the water was way hot.  Seriously, Mom, why is it so…, slap on some condishuner, slap, slap, slap.  Ugh.  Why are my hands so heavy?  And my tongue teels tick.  Head underwater and spaghetti fingers uselessly tangle up in my hair.  I should get out.  This bath is so hot and I am dizzy.  Why am I so dizzy?  My hand slips on the side of the tub and I slide out onto the floor.  I don’t remember calling my Mom into the room, but she was there in an instant.  Of course, she had been waiting right outside the door, aware of the experiment, though unaware of just how well it had played out.

I was helped to my bed where I laid under the ceiling fan.  Getting cooled off helped considerably and I got up to prepare for the evening’s performance.  I found that I couldn’t comb my hair and asked my Mom to assist.  I imagine now how well she played along with my last moments of false reality.  Oh sure, Amy, I’ll comb your hair for you.  Lookie here, you have all the conditioner still on your head.  Let’s go get that rinsed off.  Oh?  You want to just leave it in and go to the play like this?  Okay.  That’s normal.  Let’s get you dressed.

All dressed and with my shoes Mom tied, my parents and Grandmother tell me that we are heading to see my Mom’s auto-immune doctor and the play’s director has already been alerted that I will not be performing that night.Sure, but we all know I am a drama queen.  I was certain I would be sent home with a third doctor telling my parents that I was putting on a show.

At the doctor’s office I had to be helped out of the car and walked with like a three sheets to the wind drunk.  I remember that I was wearing red sneakers and I watched them get tangled up with each step, marveling at how awful it was and wondering why I couldn’t just snap out of it already.

It took the doctor about three minutes to say he was hospitalizing me and about four minutes to say he wanted  a spinal tap.

All I heard was spinal tap.  Didn’t he know I was just putting on?  There was nothing wrong with me that would require a spinal tap.  I had read books, man.  I knew things and I knew I had no time for that in my life.  He offered me a wheelchair to get back to the car.  I accepted, but only because I committed to my character, not because I needed a spinal tap.

At the hospital I had my Mom dial and then hold the phone to my ear while I called my school friend to say I would not be at school the next day and could she please gather my homework for me.  I told her I would be back on the following Monday.  I felt my Mom’s hand tense next to my ear.

It was a Thursday night and my three brothers had various football related activities.  My parents left me with my Grandmother just as I had gotten settled into my gown.  She was no novice around that place, having been plagued by raging Rheumatoid Arthritis since she was 12 years old.  At more than sixty years old, her spine was fused into a straight rod, her every joint touched by some sort of surgery or procedure.  I remember her taking in the view of me in that bed like a tired marathoner watching a fully rested youngster line up to start.

A nurse came in the room to start an IV.  She announced her intentions very casually, as though I had been informed.  No, ma’am.  No, ma’am, indeed.  I have already agreed to let that voodoo doctor do a spinal tap.  I do not intend to let him go around doing IVs as well.  I simply will not stand for this.

“Amy.  This is happening.  Hold my hand and squeeze as hard as you want to.”

And then, my Dear Grandma put her hand with paper thin skin and fingers twisted beyond use into my hand.  I couldn’t squeeze her hand anymore than I could have accepted that offer from a baby chick in my hand.  Focusing on not destroying her hand helped me get through that first IV.  She was always good for putting her very life on the line to risk helping me through hard things.

My evening was pretty eventless, as all tests were scheduled for the next day.  I was stressed out about the spinal tap, feeling more and more certain that I could just snap out of it if I could quit playing around.  Every time that hospital door was knocked on I began to shake all over with fear that it was time.  I think my door was knocked on eleventy billion times that day.  The spinal tap guy did not knock.

After I survived that, it was decided that I needed a neurologist on the case and that pain medicine should be held off until he could see me.

The stress of waiting for the spinal tap, followed by the hours of unmedicated pain once more woke up the beast that had been nudged by my hot bath.  I lost motor control hour by hour.  My nurse came into the room like a vigilant soldier and harassed the neurologist to come quickly.  He came, saw me, agreed that something was going on, and asked my parents if maybe I was sometimes a little dramatic.

By Friday night I was unable to walk.  My spinal tap showed a high count of chicken pox virus, so I was diagnosed with some sort of spinal infection and treatment was started.  On Sunday morning, the neurologist, who had realized that I was a drama queen, but also very sick, called us to announce that he had called in some favors and got us in for an MRI.  At that time MRI was still very new and there was one single unit that traveled central Texas on an eighteen wheeler.  The waiting list was a mile long.  Providence saw to it that the machine was in town and my doctor knew the strings to pull.

I was wheeled into the MRI lab and the tech commented that it was wildly unusual that I had gotten in.  He had lots of questions about how I was doing and said that he felt certain the MRI would give answers.

Three hours later he pulled me out of the machine with a practiced smile.  He helped me back into my wheelchair and pushed my back to the hallway by my parents.  He told us that he could not diagnose anything or even tell us what he saw, but he felt confident that he could show us the MRI and let us easily draw our own understanding.  Just below my brain stem we saw a huge something on my spine.  He assure me that he did not believe it to be a tumor, but that my doctor would be able to easily tell what was wrong with the images in hand.

Back in my hospital room, my nurse was there with an IV bag waiting.  High dose steroids were started.  My neurologist arrived a few hours later and says that I have Transverse Myelitis, more of a symptom than an actual diagnosis.  He suspected MS, but kept that to himself, knowing that steroids would be the protocol either way and there was no need getting the drama queen worried.

One week after that, I watched the scab on my knee flake off and remembered how it all started.

Two weeks in the hospital and three months of outpatient rehab saw me walking again.  My hands were very slow in coming back to full usefulness, so I continued occupational rehab for long while.  One of my therapist’s favorite games for me involved the task of removing nuts from bolts.  One afternoon I was diligently working in this task when I felt my furrowed brow go numb.  Ha ha.  Nervous laughter.

I answered my questioning therapist by telling her that my forehead had suddenly gone numb, but that was not possible because my spinal injury should not affect anything above my neck.  Clearly, I was drama queening again.  She excused herself to make a phone call.

Two days later I was once more enjoying a three hour MRI in a once more providentially immediately available machine.  That night, my neurologist called at 7pm to ask us to come in first thing in the morning.

They never do that for good news.  Drama queen or not, I knew that much.




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