Built to Belong Read online

  As a planner at heart, I knew that after our wedding we would start trying for a family. I was excited about the idea—maybe a little too excited, because in my typical overprepared, always looking ten miles down the road mindset, I already had a list of potential baby names stored in a note on my phone.

  [*Note: I realize this is cringeworthy and embarrassing; however, a quarter of you reading this have done the same thing. Be honest!]

  However, despite looking forward to becoming a mother one day, I had one significant problem.… I hadn’t gotten my period in more than a year. I was experiencing a few other symptoms, like weight fluctuations, chronic depression, and occasional migraines, so I did the only thing a rational girl would do in a situation like this—I took to Google.

  Retrospectively, this was without a doubt the worst possible thing that I could have done. The medical professionals in my family (and most of you reading this) are shaking your heads at me right now, but let’s be honest: I was on a quest to prepare myself for the worst-case scenario!

  Sure enough, the appointment with my doctor only amplified my fears.

  She ordered a blood test that revealed elevated hormone levels and immediately made me schedule a variety of endocrine tests, ultrasounds, and when all failed to find the cause of my hormone imbalance, a brain MRI.

  Every day that led up to that MRI, the people in my life did their best to mitigate my anxieties.

  As the scan started, the radiologist even joked with me about how they didn’t expect to find anything—a “precaution” was what he called it. I remember nodding, convinced that, clearly, he had to know what he was talking about.

  Midway through the scan, a voice came over the speakers in the MRI machine informing me that I needed to stay completely still as they rolled me out. The doctor needed a clearer picture, and a nurse gently inserted an IV into my arm with an intravenous concoction that made my stomach turn.

  Metal—everything tasted like metal.

  That false sense of security in the radiologist’s voice faded away. Something was wrong.… I knew something had to be wrong.

  After the procedure, I was escorted to a small room with my mom and that sweet boy who had been by my side for the last seven years. He reached for my hand. I squeezed it tight.

  There came a knock at the door—tap, tap. The doctor returned, and by his posture, I knew right away that whatever he had to say, it wasn’t going to be good.

  He sat in an old black office chair and wheeled it in front of an ancient computer monitor. With a few clicks, the doctor pulled up an MRI image of a brain on the computer, looked at me right in the eye, and said, “This is what a normal brain should look like.” He pointed to certain structures I remembered studying in college. The doctor took a moment to point out the pituitary gland sitting behind the optic chiasma—the X-shaped intersection of the optic nerves where all visual signals flow toward the back of the brain.

  Then the doctor switched to a second image of a brain and pointed, saying, “This is what your brain looks like.” On the screen, right in the center, where my tiny little pituitary gland should have been, there was a tumor.

  A benign mass nearly pressing against my optic nerves.

  It felt like the floor went rushing out from beneath my feet. I stood silently staring at the screen, but on the inside my mind was racing.

  That thing is in my head? MY head?

  I had studied the brain and knew that any pressure on optic nerves can cause visual changes, even temporary blindness. I also knew that if this tumor was already impacting my fertility, the path to starting our family was going to be harder than I anticipated.

  Questions started swirling around in my mind.…

  What would this mean for my life?

  Would I need surgery or radiation?

  Would I ever be able to have a family?

  Would I have to give up my career?

  Why was all of this happening to me?

  In a single moment, I went from planning my wedding to wondering what the rest of my life would look like. I swapped storing baby names in my phone to questioning if I would ever be able to get pregnant in the first place. All those inspiration boards, those little worries about flowers and dresses, were gone.

  In their place I had a scan of my brain with a diagnosis printed in big bold letters: “Tumor.”

  What wasn’t particularly clear was the course of treatment. Why? you may be wondering. Well… there was nothing immediate that needed to be done.

  The mass itself was just teetering on the edge of requiring intervention—nearly pressing on my optic chiasma, a millimeter or two away from disrupting my vision. The hormonal ramifications were also unclear. My hormone levels were off, but we were unsure of whether that was caused by the tumor itself or because of damage already inflicted on my pituitary gland.

  My doctor explained that neither the migraines nor the loss of hormonal cycles was enough to constitute needing surgery or radiation. We needed more data points.

  He also explained that shrinking or removing the tumor didn’t guarantee that my symptoms would fade or that my fertility would return. It wasn’t a surefire thing. In the case of removing a tumor from the pituitary gland, surgery could actually make things worse.

  As far as he was concerned, the plan was to wait and see.

  Yep… just wait and see.

  This jarring diagnosis did not come with a clear solution or finish line. That was the first difficult lesson that I learned in this season.

  I had to surrender my sense of normalcy and relinquish my perception of control without a clear end in sight. I had to reframe my idea of illness from something a pill or surgery could fix to something chronic, pervasive, and possibly lifelong. I had to settle into the discomfort of this diagnosis becoming a part of my long-term experience, potentially without ever being able to fix the underlying thing that was wrong.

  Nothing prepares you for being told you have a brain tumor.

  It isn’t like the movies. The protagonist doesn’t always charge forward with fearless determination and admirable wit.

  Sometimes she stumbles, shaken and afraid. Sometimes she tries to hide her diagnosis from the world. Sometimes she believes that if she doesn’t admit it to others, she won’t have to accept it herself.

  For the five years that followed, I kept my diagnosis completely hidden. Only our closest friends and family members who needed to know about my benign brain tumor were told.

  As an otherwise fairly public person, I had never consciously hidden anything like this from the people that I loved before. This was uncharted territory. There was so much fear and shame wrapped up in sharing my personally painful and unsettling reality with others. I didn’t want my diagnosis to be a burden or to change the way people saw me and the impact I was striving to make.

  I longed for a sense of normalcy.

  I worried about what others would think.

  I feared being perceived as weak or in need of sympathy.

  I think, most of all, I feared acknowledging my truth. I was in denial, and keeping this secret meant that I didn’t have to face my diagnosis.

  So for more than half a decade, my benign brain tumor was something I worked incredibly hard to hide from the world. I covered up my appointments, excused away my migraines, and buried my worries deep.

  In order to keep that secret, I created a mask.

  Not a literal mask—there were no feathers, glitter, or a masquerade gown to match. I’m talking about a metaphorical mask. One that hides the pain, guilt, and shame that you’re feeling on the inside.

  Masks are created to not only hide the darkness that lies within—insecurities, pain, and trauma—but also to display a version of ourselves to the world that we want people to perceive. We become better and better at crafting these facades as we learn which parts of our story we want to hide and what will make us more socially accepted. Carefully, we construct a public identity that displays the parts of our lives that we
want others to see and hides the truths we wish to keep private.

  Think about it. When was the last time you asked a friend “How are you?” and she responded with, “Truthfully, my life feels like it is falling apart. I just started medication for anxiety, but I’m not sure we have the dosage right. The baby hasn’t slept through the night in three weeks, so I’ve been a real jerk to everyone in my life—you know, sleep deprivation and all of that. Oh! And I just found another gray hair this morning, which has me questioning my own mortality. Let’s just add on to the list of things I don’t love about my postpartum body, shall we! How about you?”

  By the time we’re adults, we aren’t only putting on a mask in our most difficult moments, but we are wearing them to model the expectations, behavior, and “highlight-reel reality” of the world that we live in. We create them for our physical interactions with others as well as in the virtual space.

  And because we live a large percentage of our lives online, we have additional opportunities to carefully craft our masks. The internet has created physical distance and therefore the ability for people to pause and reflect before deciding what to share. It also gives us an opportunity to hide behind curated feeds, beautiful photographs, and witty captions. When we no longer have to show up in person, it becomes easier to hide what is truly going on deep within our hearts.

  We, as a society, have become cultural chameleons—changing our external appearance for safety, acceptance, and success in a cutthroat world. We develop communicative camouflage to hide what’s truly going on in our lives because it is easier to bury the truth than it is to risk ostracism or judgment of any kind.

  Even in spaces where we are encouraged to speak authentically, the concept of vulnerability is diluted so that it is still palatable. We are taught to be honest, just not too honest.

  Vulnerability has been redefined.

  Vulnerable adjective ′vl-n(-)r-bl, ′vl-nr-bl capable of or susceptible to being wounded or hurt; open to moral attack, criticism, temptation

  showcase just enough to be perceived as authentic without truly letting others see the mess, the muck, and the trauma that you’ve buried within; a socially acceptable amount of honesty that won’t raise eyebrows

  If you could have heard the run-on sentence of fear and shame running through my head during the half a decade that I hid my diagnosis, you would have been completely confused by what you were seeing on the outside.

  Perception: Married her high school sweetheart. Left a six-figure freelance photography career to build a thriving community of more than fifty thousand people. Moved across the country to pursue her dream job in San Francisco. Traveled to exotic places, finally discovered dry shampoo, and was living her best life.

  Y’all, my mask looked pretty damn good.

  Reality: Worried every single day that she would wake up blind. Dreaded routine MRIs and doctors’ appointments. Struggled with strange symptoms. Afraid that others would find out about her diagnosis and simultaneously felt shame for not telling them. Cried every time a friend announced that she was pregnant. Hated her body for failing her. (Oh, and then felt guilty for feeling all the above.)

  The hardest part to admit is that I became so good at wearing my mask that sometimes I even forgot what was beneath it. Some days I even forgot that I had a brain tumor.

  My half a decade of hiding my diagnosis ended the day my doctor spoke four life-changing words after seeing my MRI in the fall of 2017:

  “I am recommending surgery.”

  Um, rewind… Surgery? Like, on my brain? You really want to go into my brain?

  The walls of the little San Francisco office where I was sitting felt like they were closing in. Halfway across the country from my family, sitting alone in a cold sterile room, the day I truly thought would never actually come arrived like a flash flood.

  The doctor’s words came barreling into my life, tossing all of my plans aside and leaving a trail of uncertainty in their wake.

  We were no longer waiting to see what would happen. We needed to act. Five years of denial, half a decade of trying to push my diagnosis to the farthest depths of my mind, were now over.

  “I am recommending surgery. The tumor looks bigger. I truly believe it’s our best move.”

  • Brain surgery

  • Six to eight weeks recovery

  • Short-term disability

  • List of risks and complications

  The entire conversation was a blur after those first four words. I walked into what I thought was going to be my routine annual appointment with my neuro team and walked out with instructions for when to schedule surgery to have a benign brain tumor removed.

  That mask that I had so carefully constructed to help me cope with the reality of having a brain tumor was no match for this moment—the facade that I had built was crumbling.

  I walked to the curb outside the hospital and fumbled through my backpack, trying to find my phone. My hands were shaking as I called an Uber to take me back to the office.… No, I couldn’t go to the office.… I needed to tell Hugh.

  Hugh—my stomach dropped.

  How could I possibly look my husband in the eye and tell him that our entire world was about to change? He was about to become a caretaker for… a month? Two months? The rest of our lives?

  Tears flooded my eyes and flowed unceasingly from the moment I stepped out of the car, walked into our building’s elevator, and then through the doors of our tiny city apartment. Hugh was standing in the kitchen preparing lunch.

  The minute our eyes locked, he knew.

  In an instant, Hugh was across the room and his arms were wrapped around me. Sobbing into his chest, I told him the news. He held me as I cried. I can’t remember whether it was a minute or ten minutes.… Maybe it was an hour.

  There was no more pretending, no more hiding this diagnosis. Surgery meant that our lives were about to change in a big way, and although I didn’t know what the future would hold for our family, I did know one thing:

  I couldn’t do this alone.

  I wasn’t strong enough to face the future without the support of my friends and family. It was going to get harder before it got easier, and we were going to need a lot of help.

  I couldn’t bring myself to even write the words down, so I called a very close friend. “Can you help me? Can you get these words onto the page, because I know that if someone doesn’t help me, I’ll never get the courage to do it.”

  I read and reread the post a hundred times over. Hours later, I hit publish. Alongside a photo of my husband, I finally opened up about my diagnosis for the first time.

  The vulnerability hangover hit me instantly. I set the phone down and walked away. It was done. I was done.

  Sharing about my diagnosis was not the brave act of a victorious protagonist pushing past her fears to share her story with the world. It is easy for people to make that assumption in moments like these, but in my case, that’s not precisely true.

  It took me five years to finally take off my mask, and I didn’t do it because I was courageous. I took my mask off because I needed brain surgery.

  No… that’s not honest enough.

  I took off my mask because I was going to need to take a lot of time off from work, and I didn’t know how to explain that.

  No… still not the entire truth…

  I took off my mask because the only thing that terrified me more than telling the world I had a brain tumor was the thought that something might happen to me, and my last words to the people I cared about would have been a lie.

  That’s not the legacy I wanted to leave behind. I didn’t want my fear to have the final say.

  So I did it. I hit publish. And in the days, months, and years that have followed, here is what I have discovered:

  When you take off your mask and allow your truth to shine through, you give permission for others to do the same. Vulnerability inspires more vulnerability.

  People I thought I knew well reached out with t
heir own stories of struggle. Friends who I admired for “having it all together” revealed hardships that I never knew were going on beneath the surface.

  They were human too, just like me.

  Message after message came pouring in, and I realized that all along I had known only half the story. There are so many of us struggling in silence because when we look around, the only examples of vulnerability that we see are carefully crafted and curated. We see perfect depictions of everyone else, we feel the pressure to compete and measure up, so we shove our struggles down deep.

  But wearing our masks and hiding our hardships only keeps us farther apart. It makes it harder for us to connect, to walk alongside one another, and truly do life together. Barriers not only keep our worries out, but they keep the good from getting in. They keep others from getting close.

  By being yourself and telling your story, you will make it easier for others to do the same. Vulnerability doesn’t have to remain a buzzword. Vulnerability can become the catalyst that changes everything.

  STEPPING INTO YOUR VULNERABILITY

  In writing about my experiences with vulnerability, I come to you not as a qualified expert but rather as an imperfect student. I have made more than my fair share of mistakes in struggling to chip away at the temptation to appear to have it all together.

  Along the way, I’ve learned that vulnerability isn’t a destination. There is no arriving, only becoming. It’s a slow and often uncomfortable journey that we all embark upon in our relationships with others.

  Sometimes it can feel overwhelming to see just how forthright and public people are able to be with their trauma and hardship. Sometimes we feel called to share our hearts but are unsure of how to begin. Sometimes we’re not ready to open up, and the external pressure we feel to be vulnerable leaves us struggling with anxiety and fear. Sometimes we share what we are walking through and are not met with the kindness or the response we were expecting.

  All of these experiences around vulnerability are valid. There is no single path to opening up about what you are walking through—no perfect recipe with precisely measured ingredients and meticulous steps that will get you there.