Prologue, Part 2: Life At The Start

Car Passing on Road Between Trees by Pedro Figueras from Pexels

“The eye sees only what the mind is prepared to comprehend.”

— Henri Bergson

I wish I could tell you that after they ran the tests, they found that I had indeed had a stroke. That I had been fortunate enough to survive a stroke at a young age. That because I got the help and care I needed, I had suffered a serious health setback, but was able to push through with grace and dignity, emerging on the other side with a newfound wisdom and purpose for my life.

I wish so badly that this was my story.

Because this scenario would have been simple enough.

What unfolded next was so much more complicated.

Complicated enough to explain that it has taken me the full twenty two years to find the words. Even still, I lose my words because I get overcome with shame and grief, anxiety and anger, and a host of other emotions that swallow my words.

I left the hospital with Edwin that night with no definitive answers. Only the standard “wait and watch and check in with your primary care physician” lines.

Pulling into our now darkened driveway, pausing to take in our tiny painted brick house, lit only by a dim moon, it was hard even in that moment to recall the flurry of lights and activity from only a few hours earlier.

Even in the most fearful part of those earlier moments, lying in the dark, afraid of what was the worst at the time, there was still hope. I was surrounded by lights and professionals who knew what to do to provide care for me.

But now, we sat alone in the same driveway, surrounded by darkness and shadows—both literal and metaphorical.

And just like that night, our journey into the complete unknown began with lights and resources, a flurry of activity and support, only to end with us sitting alone in the dark with only each other to hang on to.

By the evening of September 16th, it was clear that whatever had happened the evening before was not a one time event. By the end of the week, it was clear that whatever had happened was my new normal.

Over the next several months, my symptoms grew worse and my condition deteriorated. What had originally begun as brief episodes of uncontrollable movements grew into more serious movements, coming without warning and staying longer. I gradually began walking with a cane and finally a walker when the symptoms would come on, throwing off my balance and causing me to fall.

New symptoms also began to appear. Symptoms like my mouth locking up, mid-sentence, causing me to stutter or repeat the same words over and over. As the well-trained daughter of a career medical professional, I distracted myself, filling my days by charting all of my symptoms in a spreadsheet, documenting the parts of the body affected, the frequency, duration and severity of each one. By the time I was done, I had several pages of filled columns and rows that I have to this day.

My heart ached as I watched Edwin and my boys struggling to process my mysterious illness while also struggling to find a way to make up for my absence in their lives. The desperation to return to my roles and my function fueled my drive for answers.

From 2002 until May 2004, I was caught between two medical groups. On one side was one doctor with a dismissive, obnoxious bedside manner, insisting that I was having a “maladjusted stress reaction.” The second group was the neurology department, diagnosing my symptoms as a movement disorder called dystonia.

Even though my symptoms didn’t match this diagnosis fully, their conclusion seemed more professional than the abrasive jerk’s. Worried about merely reacting to the personality problems of the primary care doctor, I relied heavily on my mom, something I had done my entire life. After all, moms are usually a safe bet since they often have their kids’ best interests at heart.

In February of 2004, because I was not responding well to the drug regimens, I was offered the option of an awake brain procedure where surgeons would place a pacemaker in my brain to manage my movements. While I was terrified at the thought of brain surgery, the possibility of finally reclaiming my life gave me hope.

Given the ineffectiveness of the medications, I had frequently questioned my dystonia diagnosis, but my concerns were always dismissed as I was told to “stay off the internet.” While still feeling my doubts, I visited a third doctor to get his opinion on the surgery. He just so happened to have been mentored by the world’s leading specialist on movement disorders, so he offered to send a video of my symptoms to his mentor to ease our concerns.

Relieved to have this reassurance, we continued to prepare for surgery while we waited to hear what we assumed would validate our path forward.

But this new opportunity was not meant to be.

On a warm night in June, after weeks of waiting, Edwin took me out to dinner at a nice restaurant where he broke the news to me.

“We heard back from the specialist. It’s not a movement disorder.”

I felt the air leave the room.

The original, obnoxious guy had been right? Within the first couple of weeks of 2002, we had been given the right answer, even if it was delivered badly.

My head began to spin.

This also meant my mom had guided me wrong. But it wasn’t just that she had been wrong. It was how she had warned me repeatedly to not allow anyone to tell me that this was psychiatric. How had she been so sure?

All along, there had been a few whispers among certain members of our extended family and in our church community, whispered suspicions that I had been “faking” my symptoms, selfishly bidding for attention.

These whispers now held terrifying weight.

Had we suffered for those two years for nothing? Could I have stopped it had I chosen differently? Who other than a crazy person would subject their loved ones—especially their children—to such a terrible ordeal?

What did that say about me as a mother that I had been willing to let my children suffer and my husband struggle for two full years simply because I needed attention?

I could see no other alternative other than that I was a horrible human being. How could I ever make this right?

The only logical next step was to go to the mental health side of our health system and be evaluated there.

In the way to my appointment, I cried quietly as I voiced my fear out loud. “What if they commit me?”

This fear didn’t come from informed understanding. Rather from what I feared I deserved. I wanted to know if he felt the same way.

Edwin didn’t hesitate.

“I will never let them take you away for good. I will always come for you.”

I quietly sobbed with relief.

The appointment lasted a little under an hour, with the doctor announcing his decision in a few sentences at the end. He confidently declared that I had bipolar disorder, PTSD, a conversion disorder (now known as functional neurological disorder) and an eating disorder not otherwise specified (now known as other specified feeding or eating disorder).

I felt the air leave the room again.

I didn’t know what to do with any of these diagnoses. All I heard is, “You’re diagnosable—which means you’re crazy,” after which I was dismissed with a slip of paper with a phone number to call to set up a treatment plan.

Within a week, I was sitting in an emergency room watching my hand from a safe, dissociated distance as it wrote, “I don’t want to live.”

(To be continued....)

Prologue, Part 1: Life At The Start

“The eye only sees what the mind is prepared to comprehend.”

— Henri Bergson

Ambulance, Photo by Matt Gush from Getty Images

On a beautiful September Sunday morning in 2002, I did my usual Sunday morning routine. I had three little boys that I had to get dressed, fed and out the door on time to our Sunday church services. Because my husband, Edwin, was a full time youth pastor in the church he had grown up in, Sundays were especially hectic for us.

We had already had a full weekend, playing miniature golf with members of our extended families, celebrating our oldest son’s upcoming birthday. He would be turning 7 the next day, and, as always, I was looking forward to making his birthday as memorable as possible. My boys were my world in those days, and any chance to celebrate their special days were the highlight of mine.

I’m assuming that we did our usual Sunday meal after our morning service, followed by naps. We would have headed to church early, since Edwin and I were singing a duet in that evening’s service, and we always rehearsed again before the service.

I remember singing my duet with Edwin and returning to our seats in the third row, not knowing that that was the last normal moment we would have for the foreseeable future. As soon as we sat down, the upper right corner of my mouth, suddenly disappeared. No buzzing or tingling. Just gone. Not checking in.

Outwardly, I was still calm, but only for a few more moments. Only until the right upper corner of my lip began to slowly pull upward, coming to a stop in a snarl. I leaned forward and tapped my mom on the shoulder as discreetly as possible. She turned to look at me and immediately zeroed in on my curled lip. She was a highly trained nurse who had been in charge of a couple of different Intensive Care Units specializing in neurological care. Her eyebrows raised in concern, then she motioned for me to join her in the foyer.

Fortunately we were still able to exit discreetly from our seats near the front. In the foyer, my mom went into her familiar nurse mode. I could see the mental gears turning as she assessed me.

She finally said, “Wait here. I’ll go get our stuff and the boys and let Edwin and Dad know that we’re going to your house.”

No argument from me. I wanted whatever was happening next to happen in my house.

She reappeared a few moments later with our stuff and my three boys in tow. Arriving at our house moments later, I changed into sweats while she put in a video for the boys, hoping to distract them from whatever was going on with me.

I was no sooner settled on our couch when my right eyebrow “disappeared” just as my mouth had done earlier. Then they both slowly drew upward in unison as if pulled by an invisible string, stopping at their highest points. Seconds later, my head began to slowly turn to my left, also stopping at its farthest point.

Next, my right forearm developed the same absent feeling, followed immediately by my arm slowly turning inward and drawing up towards my face, my fist coming to rest near my chin.

No sooner had my arm stopped, a section of my right thigh disappeared, followed by my right foot slowly turned up and inward, coming to rest like every other part. My anxiety peaked as I waited in anticipation for the next body part to go rogue.

A few contortions earlier, my mom had seen quite enough. She was on the phone with a 9-1-1 operator, describing to the dispatcher what she was observing. The paramedics had been dispatched earlier and were already on their way.

Once they arrived on the scene, there were so many bodies packed into our tiny living room, I easily missed the arrival of my dad and Edwin. However, even with the blur of paramedics, busy assessing me, one thing did not escape my notice: My boys. To my relief, I saw that their focus stayed glued to the television set, with only the occasional glance back in my direction.

After what felt like an eternity, I was loaded onto the stretcher and wheeled out to the waiting ambulance, where a single paramedic finished hooking me up to all the necessary equipment. I strained to hear the discussion happening near the back of the open ambulance, as the other paramedics spoke in hushed tones, only a few key words carrying back into where I lay.

“...rule out stroke...31 year old female...trauma center....”

Those few words landed hard. Everything had moved so quickly up to that point that I had only been preoccupied with whatever was coming next. Now for the first time, unwelcome thoughts found room in my anxious mind. A quiet tear rolled down my cheek as I stared back at our tiny, white Cape Cod house, traced against the black sky by the flashing lights.

Is this what dying feels like?

Will I ever see my boys again? What about Edwin?

Everything that mattered to me was tucked behind those painted brick walls. I strained to remember the last thing I had said to each of them.

Did I tell them I loved them? Had I hugged them?

I couldn’t remember. I wondered if they could. I wondered if whatever I said or did would comfort them—or possibly haunt them—for the rest of their lives?

I was relieved when the paramedic spoke again. “Ok, Mrs. Hargis. I need you to stay calm. We’re going to go really fast to the nearest trauma center.”

I know it’s something that people like him say to people like me in situations like mine, but I’ve always figured that “stay calm” was one of the silliest things you could say to someone like me in moments like this. There might be sillier things, but none come to mind.

How could he know that “staying calm” was not something I did well? For calm, you would have wanted Edwin. He was always the level-headed one when things got wild. From the first moments I had known him, he was the calm one. It’s why I sometimes called him “Steady Eddy.” For as badly as I wanted him with me in that moment, I knew exactly where he was. Inside, being calm for our boys.

I think he was so calm was because he is intensely practical. The wilder the scene, the more practical he becomes. I pictured him calling someone to come stay with the boys, making sure they were fed and getting them to bed. Thankfully, his mind worked like that.

Someone’s should.

Meanwhile, the ambulance doors had closed, and we were racing to the nearest trauma center, sirens wailing. I was relieved when the paramedic riding with me distracted me with small talk about Edwin and the kids, giving me the calm he’d requested. Before long, I was wheeled into a trauma room where an astonishing amount of people were standing by, ready to get to work on me.

Once again, I was mercifully distracted from my own anxious thoughts by a fresh blur of people around me. In fact, I was so distracted that I barely noticed that my symptoms had quietly subsided, leaving as mysteriously as they had appeared.

(To be continued....)

My Why

“The truth is, most of us discover where we are headed when we arrive. At that time, we turn around and say, yes, this is obviously where I was going all along.” Bill Watterson, creator of Calvin and Hobbes

My only recollection of wanting to be a writer was when I was 12 years old and was chosen for a special assignment by a teacher at the K-12 school I attended. I was to gather the notes from the other elementary teachers and compile them into a column for our local newspaper.

For a kid like me—a kid who never seemed to fit anywhere—to be asked to represent our small community to the larger community formed an instant core memory.

A kid like me.

A scrawny kid, born in the South but still “not from around here.” The youngest of three kids, the only girl. Bullied daily from my earliest memories, attacked most often for a body I never chose. Parented by two people with generations-deep wounds, living at a time when the only known remedy for pain was to insist that what didn’t kill you would always somehow make you stronger, while no one ever paused to address those things that didn’t kill you.

Why risk looking weak when you could simply insist that you were strong?

I needed to tell you I was scrawny because kids who were small or weak in my time had to learn to run fast or talk fast. There was one other option, should you find yourself unable to do either of the above. Learn to hide well.

Being small and weak, I became proficient at all three.

When people asked me what I wanted to be when I grew up, I gave odd answers since I didn’t know how to say, “Alive and anywhere else.” Since I was the scrawny kid who couldn’t mount a decent defense, the bulk of my energy was devoted to running fast, talking fast or hiding well. I could only imagine a life for “future me” that involved some version of those three options.

I was surprised to find out recently that adolescence is a lot like sharing your computer screen with tech support. You know how you share your screen with someone who knows how it all works, and they direct you to all kinds of secret menus where you adjust the settings so that your unit works like it was designed to? They don’t have control of the cursor. You do. They simply guide you to solutions, tell you what settings are making your life miserable and show you a side of your computer that you had no idea existed. A real peek under the hood.

This is adolescence at its finest.

If you’re disappointed, so was I.

My adolescence, the part where I was supposed to learn how to function as an adult, was less about me developing as I was meant to and more about having my settings changed in an effort to produce a redesign that better matched polite society’s standards.

Instead of following the manufacturer’s operating system and original design, tech support changed the settings to “swallow your voice and distract yourself from your deep longings to be seen, known, and loved for who you are.”

I now grieve for the parts of me that I had to bury in order to prioritize satisfying needs that were never mine to meet.

So why write? And why now?

Because of what Bill Watterson said.

I have finally arrived at adulthood and discovered where I was headed.

For all the years I’ve been in adulthood, I’ve been blaming myself for not showing up better. True to my re-programming, I have scoured my soul, searching for how I could have been less of a disappointment.

Only to turn around, look back at where I’ve come from and realize that this is where I was headed all along.

This has never been about assigning blame thereby staying stuck in those powerless places. Rather, there is a deep relief for me in this work.

This is about how far back I had to go as I searched for who I was meant to be. When I went looking for the last time I felt any scrap of a desire for who to be, I recalled this scrawny little girl who got a chance to have a voice that one time. I saw this shiny core memory, lodged in a place she hoped I’d come back to.

She remembered being asked to be a voice, representing a community.

Going back to go forward is a life hack that is having its day. Going back to the place where you got off your path in order to get back on.

(Something that makes me a fan of treadmills, by the way. Boring? Yes. Backtracking? Avoided. Realistic? Not even a little.)

And so I have returned, again and again, to the places where I felt promise and felt hope and believed I could be something more than so many people’s “greatest disappointment.”

I use my imagination—that always only used to find new ways to run faster, talk faster and hide better—to imagine a life where I don’t have to survive, evade, resist and escape.

Because we were all made to be seen, known, heard, understood and loved.

Because I was never meant to merely survive, evade, resist and escape.

To honor that scrawny kid, I am picking up the trail that she should have been resourced to walk. I am working to emerge from my well-imagined hiding places. I am learning to walk, not run. To talk, more slowly, with more intention. To say what I was meant to say, not simply what will appease others.

She deserved to be seen for who she really was instead of being told who she was allowed to be. She deserved to have people she could trust. People she could safely share her screen with to get better guidance and direction, instead of being hacked and locked out of her own operating system.

I honor her because when she was stripped of certain resources, she used what she had left to find a way forward. She buried the right parts, waiting for me to come back for them.

I honor her now by finding her, remembering the smallest moment where she found joy and, once again, doing what she learned to love in that small bracket of time.

To write.

To be a voice.

Even then, she knew the power of words because some words nearly destroyed her while still others gave her small infusions of life and hope.

As she struggled under the spoken words of so many in-person encounters, she then read the hopeful words of people she would never meet in real life.

This also fueled my desire to write. Someday maybe I could write words that would give total strangers the same lifeline of hope that had floated me forward.

This is my why.

As you read my story, you may never know what it was like to be me. But my hope is that, through my words, you may know better what it is to be you. That through my words, you will know that it is possible to be seen, heard, known and understood as you are, for all you have been and could be.

And that knowing that can bring you hope as well.

The Flunky Chicken, age 12

Excerpt from the school news section of the Rocky Mountain Sunday Telegram, March 13, 1983