Fear, Failure and Freedom

The semester was winding down when we learned that our body was revolting, our mind was damaged, our house was trying to kill us, and we were not the man we'd been trying to be our entire life.

We learned all these things only after we'd suffered a severe mental health crisis. In an incredibly dangerous but necessary stunt, we'd packed up our dog into our 5-speed manual small truck and drove 5 miles to the county hospital's Emergency Room, demanding an answer to what was happening to us, because we had become convinced that death was better than living another day with our leg in its swollen, angry state.

We lay in a hospital bed in the psych ward listening to the psychiatrist explain that the artery supplying blood to our left leg was completely blocked and would need surgical treatment. Oh, and we had an "abnormal EEG" that meant ... something. These newly discovered conditions were piled on top of the various mental health diagnoses we'd already received. Multiplying trauma upon trauma, doused with 20 years of alcohol abuse -- we are now almost 6 years from our last drink -- had also left us with a host of underdiagnosed mental health issues, including Major Depression, Anxiety Disorder, Psychotic Break, Schizo-affective Disorder, ADHD, PTSD and Dissociative Identity Disorder, which is why "we" use the collective pronoun - to acknowledge the alters that have appeared unbidden at times throughout our life.

It took a month of tests, appointments, phone calls, medical history forms, blood samples, and medication adjustments before we were put under anesthesia for a femoral artery bypass operation. All the while, we leaned on friends who drove us all over central Illinois to various hospitals and continued gritting our teeth while the Leg continued to scream out in agony.

The Road to Hell

We've been through fake breakdowns

Self-hurt, plastics, collections

Self-help, self-pain, EST, psychics, fuck all

I was central, I had control, I lost my head

I need this, I need this

A paperweight, a junk garage, a winter rain, a honey pot |

Crazy, all the lovers have been tagged

A hotline, a wanted ad, it's crazy what you could've had

- R.E.M., "Country Feedback"

For at least five years, we'd been living with a pain in our left leg. It started in the calf muscle as a searing pain whenever we walked more than 100 feet or so.

Diagnosed as "sciatica" - a non-descript medical term which means "we don't know, but something's fucked up in your nerves" it had grown to become a constant, intense pain that started at our hip and screamed down to our absurdly swollen foot.

We'd been regularly taking prescribed Nabumetone to reduce pain and swelling, but the pills, which never really did much to begin with, weren't even registering, as our system was overloaded with painful sensations coming from the Leg and various other damaged parts of our body.

We can't even remember now when we first noticed that the pain was affecting our "executive functions," meaning we were struggling to Get Things Done. We began to lose track of meeting times, conversations we had or didn't have, people, places and things we interacted with.

For us, this was terrifying. We feared we were showing signs of dementia and would soon lose our ability to remember, to function effectively, eventually to be consigned to a hospice somewhere while our mind raced our body in decline.

We had spent most of our 53 years in this meat suit surviving based on our mind's quickness, problem-solving ability and grasp of complex concepts, first as a journalist, then photographer, designer and, finally, a tenured college professor.

We had remarked numerous times that our worst end-of-life scenario would be to lose our mental abilities, knowing that it was happening, but being unable to stem the tide. And now, here we were, seemingly unable to spell common words when we typed, jumbling sentences, misremembering facts during conversations, becoming frustrated with computer commands we'd once known by heart.

And the worst of it was, we were losing the ability to do the things we loved to do.

We have loved music since a child, absorbing the swelling notes and internalizing the lyrics from numerous musical acts across various genres. We took pride in being able to conjure up an appropriate lyric at a moment's notice, for occasions joyous or sad. Now, we were uncertain of lyrics we'd known for years.

Two years before Covid-19 drove us into isolation, we'd joined a band, Altared Ego (Facebook link), as bass player, and we were finally becoming at ease with our bandmates and the instrument we'd forgotten we loved. Now, we were losing phrases, missing choruses and, finally, afraid to even get on stage.

We could not focus long enough to sit through a 30-minute sit-com, much less a feature-length movie. We had long dreamed of writing screenplays, novels, plays, documentary scripts and thought pieces for fancy publications. Now, we struggled to write simple e-mails that we'd been writing for years.

And we could no longer create art.

In 2016, we'd rediscovered our childhood passion for drawing almost by accident, enrolling in a basic drawing class at our place of employment in 2016. We'd gradually worked our way through courses in art history, painting, metalsmithing, sculpture, 2D and 3D fundamentals, printmaking and computer graphic arts.

We'd gleefully gotten immersed in the complexities of color theory, the world of art history and the characters both famous and infamous who had added to the universal language of art through their works, their words and their actions.

We were thrilled when we had pieces accepted into student shows, and we'd begun to dream of our final year of classes and our final BFA project. Ironically, our ideas centered around themes of isolation, masks, baggage, memory and the plasticity of reality.

Now, we were unable to paint. We could not remember how the pigments fit together to make skin tones, how cool and warm colors interplayed in shadow and light to represent a 3-dimensional object on a 2-dimensional space.

While all of these joys were being stripped from us, we were facing an identity crisis quite different from our physical degeneration.

Who am I?

We've read many accounts of how the Pandemic and subsequent quarantine and isolation had led people to question their relationships, their priorities, their spiritual foundations, their values. These accounts resonated with us, as we were facing a similar reckoning - one that simultaneously destroyed our identity and freed us to be our true self.

We have long had a fascination with the trappings of Death, the way we mortal beings remember, avoid, commemorate and represent the End of life's rich pageant. Now, facing our own mortality in a way we had not previously done, we began to take stock, and what we found was depressing, to say the least.

We began to put together signs, memories and struggles that had long been hidden in the recesses of our mind, symbols that pointed clearly for the first time to an understanding of our identity that was radically different from what we had grown up with.

For the first time, we accepted that we do not fit the binary gender norms of our society. We realized that our identity had been perverted and distorted by a system that demanded certain things from a Man, and others from a Woman, and anything outside that binary was Sinful, Wrong, and probably Evil.

We'd never bought into all that bullshit, but we had never figured out how to escape its oppressive presence, and we struggled through a lifetime of spiritual and mental exercises trying to circle the square. Sadly, our attempts to try to fit into this false identity, this mask, had left a trail of broken relationships, hurt feelings and, ultimately, isolation and a complete destruction of our self-worth.

But during our latest dark night of the soul, we discovered resources, people, and organizations that provided us with information we'd never really had access to before. We learned that there was a name for our nature - Nonbinary.

We remember clearly when we first heard the term and read its definition. It was as if someone had opened the door to our windowless gender jail cell.

We learned several terms that we found "fit" us in ways that the binary social construct had not: Our Pronouns (they/them), Nonbinary (Enby), Assigned Male At Birth (AMAB), Genderfluid, Genderqueer, Transgender. Please visit the National Center for Transgender Equality for more resources. Truly an invaluable resource.

We learned that our identity wasn't something we had to prove to anyone. Our soul felt as if it had been given water in the desert as it was about to perish. We chose our name: Egg E Berry, after a beloved character in a John Irving novel, The Hotel New Hampshire.

There are creators, volunteers, health care professionals and people too numerous to mention whose stories, examples and empathy have carried us when we couldn't keep going on our own.

We could never hope to repay all of this love. We only hope to share it with the next human striving to answer that question: "Who Am I?"

The beginning, not the end

Now, any good evangelist would wrap up this conversion tale in a nice little bow and talk about how the journey has been nothing but sweetness and light with an occasional hiccup since.

But we're not an evangelist, and we aren't interested in converting anyone to our identity. That's between you and your true self to work out.

The truth is our life has become more of a struggle in many ways since that fateful day when we limped up to the doors of the ER with gritted teeth behind our COVID-19 Mask and tears in our eyes.

The surgery was successful, and our foot has now shrunk to where it "matches" the right foot. The gaping holes in our groin and knee have healed to scars. The angry pain signals from the leg have mostly leveled down to a dull roar. We are beginning to walk again.

Our life hasn't returned to "normal," because normal isn't a human condition. The truth is each and every one of us human beans has been bent through the distortions forced on us by oppression, including the oppressors.

Rather than live in the stigma a corrupt culture tries to assign to our existence, we choose to let our freak flag fly. We have spent too long carrying baggage that we didn't ask for, trying to fit into some form and function constructed by social systems we had no say in constructing.

And we've only just begun to dismantle and repair the devastation within us, body, mind and soul.

We hope that anyone reading this who has struggled with any of this great big ball of confounding human condition might find something that resonates, and find some comfort here.

Know that you are not alone.

There is hope.

You are worthy of love.

One last thing. If you are having thoughts of suicide, please, reach out and talk to someone. Call the National Suicide Prevention Hotline at 1-800-273-8255 or go to the Suicide Prevention Lifeline website at suicidepreventionlifeline.org. The Lifeline is a national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week.