I flash back to first semester, sophomore year in college, way too many years ago for me to acknowledge. I signed up for Statistics because my psychology major required it. Just to make the class more torturous for those of us who don’t love statistical analysis of data for the purpose of social sciences, it was only offered at eight in the morning.
My painfully honest yet wonderfully challenging cross-country friend Jo sat in the front-row desk directly in front of me. She was a classic front-row student, and I always gravitated to the second row, just off of center. While I was there 100 percent to learn and wanted to focus as much as possible, I did not enjoy the attention and labeling that being a front-rower carried, and I much preferred the identity of “who’s that?”.
“Anonymous over-achiever” was my game. Jo loved carrying on lengthy, in-depth conversations with the professors and carried herself with a sense of earnest and loveable curiosity. Her inquisitive nature often led her to turn her head and gaze directly into my eyes with fiercely personal but soul-piercing questions. This intense friend became one of my most enduring connections after graduation. Her sincere interest in every individual she connected with caused her to gravitate toward those who sought to be known and discovered.
As she leaned back in her desk to face me in the slow-motion early hours of the morning math class that made every other math class look like a trip to the beach, she declared pointedly, “Do you realize just how smart you are? Look at your grade on this paper. Look around this room. You are the only sophomore in here, and you are leaving us all in the dust. How did you even think to ask Dr. N that obscure question?”
I shrugged nonchalantly as the lie ran through my head, “Wow. I sure have her fooled.” These words came out of my mouth, summarizing that lie in a more acceptable way: “I’m not smart. I’m just lucky I guess.”
She looked at me with the eyes that seemed to gaze into my heart as i squirmed under her scrutiny: “Well then, the rest of us are idiots,” she said incredulously. “Have you even read your writing? You could graduate this program tomorrow.”
I looked down at my chewed fingernails and veiny thin fingers, not sure what to say. I had no idea how to positively absorb any positive feedback, especially feedback that challenged everything I had ever believed. But in the back of my mind, the reality of my higher than normal IQ did, in fact, exist. Lies can permeate many things, sometimes even facts and hard numbers. I lived a life, weaving in and out of the truth of my intelligence and the belief that I was an idiot. That tension created in me a deep desire and need to prove my academic prowess.
In the midst of the highs and lows of education (undergraduate and graduate), battling a life-long eating disorder, processing the pain of trauma, mental illness, and life with all of the above, I held on to my intelligence. I spoke very little about it, but it remained permanent, unshaken by the instability of my chaotic life.
In January of 2017, after several years of searching for answers surrounding my diagnosis of POTS, Gastroparesis, and Mast Cell Activation Disorder, and about a year before the unfolding of my diagnosis of Ehlers-Danlos Syndrome and Axial Spondylosis, I sat in the KU Medcenter office for Neuropsychology. A few weeks prior, I underwent extensive testing of cognitive skills, lasting between six and eight hours. Never before had I undergone so much neurological, cognitive, and psychological evaluation. As I faced the young neurologist, probably only a few years older than I had been in that college classroom with Jo, I pondered what type of answers I wanted. If the test confirmed cognitive decline, then we would have hard evidence for my symptoms. On the other hand, if the test confirmed cognitive decline, then I could find myself in a bit of an identity crisis.
As he leaned forward, he asked me what I expected the results to show.
I shared that memory loss is a major issue, attention, and executive functioning also are problematic. Word recall is a nightmare, and maintaining conversation requires excessive work and attention.
He shifted in his seat, glanced over to Jordan, and asked the same question. Jordan’s response went something like this: “What she said.”
The doctor asked us how the decline impacted our daily life.
As my husband and I locked eyes, we agreed: “Significantly.”
In the process of disclosing the results of my testing, he shared my IQ based on the tests, which though topped off the charts in the upward direction, did not correct my memory loss, word recall issues, decline in executive functioning, and attention issues.
“In essence,” he declared compassionately, “Your brain operates as someone with traumatic brain injury.”
He recommended compensatory skills to try to make up for certain deficits, but he also said, “I am not sure that this will help much because it seems that you are already using all of them. No one, to meet you and talk to you, would have any idea about your cognitive and neurological difficulties. You masterfully hide them, but they clearly impact your daily life, and you extend massive amounts of energy trying to counteract them.”
As I sat in the chair, not really in disbelief, because I knew it all already, I stared at the book in my hands: “Brain Injury Survival Kit.”
That appointment was three and a half years ago. There was no follow-up made because there was nothing that could be done.
Recently, my doctor has suggested we reassess, scheduling follow-up testing: Another six to ten hours of agonizing tests, hitting the weak places in my exhausted brain. She suspects further cognitive decline, and she seems to think that this would alert the neurology world to take my case more seriously.
“But,” I tell her, “The reality of further decline brings further loss, further grief, and further identity crises for me.”
I know that the results of neurological testing of 2020 would show increased injury. I scarcely evaded death through near acute respiratory failure twice since that first test. That will mess with anyone’s brain. I have lived on pain killers in order to have quality of life for nearly three years, and though I don’t regret it, I know that it brings with it cognitive consequences.
Memory loss, neurological decline, and “brain fog” often present in persons who are diagnosed with Postural Orthostatic Tachycardia Syndrome. At this point in research (or sad lack of research), there is no known evidence that supports to reversal of these cognitive deficits caused by decreased blood flow, low blood volume, lower oxygen levels, and bouts of syncope (fainting).
What do we do when part of our identity is built up by a certain quality that begins to fall away? How do we cope when our sense of self is threatened by disease, trauma, loss, or death?
First, I believe, that it is appropriate to grieve in the presence of Jesus. I’m not sure that I could sustain graduate work in this season of my life or in any seasons to come. That breaks my heart, because all my life I envisioned myself moving into the position of professor or doctor. The fact that my recall is limited, my word bank is hard to access, and my ability to finish a sentence is sometimes stymied is heartbreaking. I grieve the books that I could have been writing over the past five years, the research I could have accomplished, and the scholarly work that I could have pursued. I put those broken dreams into the box where my old running shoes lay, discarded when I was told that the best I could do was a few minutes on the recumbent bike. I grieve the life that I once clung to, and I let Jesus know and hold my broken heart.
Second, I let Jesus heal my broken heart and create new dreams.
I also let Him speak truth into my grief. Is it all true? Am I allowing any lies of the enemy to sneak in as I sit with my hurt? Am I indeed stupid, forever destined to communicate via grunts and motions, spending ten minutes trying to recall the word “refrigerator?” Many loved ones in this season of my life have, in fact, validated my intelligence, my wisdom, and my insight, saying that they learn many things from our conversations. This gives me hope. I also look to the nearly 100 pages of single-spaced text that I have typed into a word document since September of 2019, the nearly 200 blog posts in my current blog that I started just before my journey as a mom of two and my journey with chronic illness began. I think about the Bible studies that I lead: That though I often go down rabbit trails, God is often working healing and beauty along those trails as well as in the traditional and written content of Bible Studies. I remember the times that I responded to the call to preach sermons over the past couple years: That each time, individuals approached me in the moments afterwards, with tears streaming down their faces, moved by the words I boldly shared. As I examine the lies that the enemy sends with a physically broken brain, I hold them up to the truth of the reality that I am living. The neurologist sat in that office, leaned forward, and declared that in spite of my marked deficits, no one would know by speaking to me.
And God whispers into my ear, “See what I do in weakness?” And then my fingers relax, dropping my false identity to the ground.
“Smart” was never my true identity. “Beloved” fits much better.
I don’t know how this condition will progress. The world has declared that at best, it remains as it is today. At worst, it progresses and my brain continues to deteriorate with the rest of my body. On the external, I seem to be collecting diagnosis like dresses, and any doctors who ever questioned the presence or severity of my disease process have held up their hands in surrender and declared me one of the sickest, most complex patients they have ever worked with: Talk about too much validation.
But here’s one thing I know: It’s not about me. It’s not about my limitations, my gifts, or my determination. It’s about my God.
I am reading a book by Katherine and Jay Wolf called Suffer Strong, and if another thirty-something year old miracle woman can ride around in a wheel chair with virtual loss of control of half of her body, writing, speaking, and impacting the world, then I can certainly carry this cross as well. I look around the world at the miracle men and women and babies and children who, in the face of impossible, not only rise above, but accomplish, through the power of God, more than any able-bodied genius could on his or her own. I see the mommas on their knees, raising up a rally-cry against the darkest prognoses imaginable. I see the couples at the end on their knees, being lifted as only the loving Father can. I see families reconciled and forgiveness embraced in ways that no one can fully grasp because it is not of this world.
The capacity of my brain has nothing to do with the impact of my life.
Brain fog, poor recall, short attention, poor executive functioning, short-term memory loss, traumatic brain injury: They don’t define me. They may be realities in my life at this point, but they do not, in any way, influence my value as an individual. We pray for healing. We beg for clarity. But my identity now and always, rests in the arms of my Father. My identity is a position, not a name, and my position is always and forever in His arms.