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.”
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....)
