To everyone else on the streets of Philadelphia that morning, the day must have looked like any other. Dogs dancing and pacing the streets with their owners. People stopping at Starbucks before they start their work week. Some were likely conjuring the ghosts of the weekend with friends at a local breakfast spot. But my mom and I were not there to while away the weekend like the others. We were there because I had an enormous, engorged fluid-filled cyst on my spinal cord and was having surgery that day to resolve it.

We got to the hospital, and my tears still ran fresh from a cry I had in the bathroom moments earlier. I remember walking into the hospital and thinking, “Ugh. I have to do this again.” The only thing getting me through was the fact that I liked this doctor, and there was a Miley Cyrus concert coming up in a few days that I hoped to attend. 

I was checked in for surgery and had a “talk” with the doctor before returning to the OR. He joked that he didn’t have gifted hands like Dr. Ben Carson does after my mom shared that my sister has had this surgery once—and it was successful. He started giving me the old-man talk asking what I wanted to do with my life. Entering the OR, the anesthesiologist congratulated me on not being pregnant. Without a shadow of a doubt, two faint lines wouldn’t be waiting for me.

The doctors were unsuccessful in intubating me. Therefore, the neurosurgeon decided they would abort the surgery temporarily and try again on the following Tuesday.

Monday was the Miley Cyrus concert. It was supposed to be the perfect medication for my sadness and worry. Miley Cyrus’ words rang through the star-flecked night sky. She sang loud enough to drown my thoughts. She came sliding onto the stage on a tongue while wearing a hot dog costume. I’m sure her outfit would be considered by many to be the holiest in the hotdog pantheon. Her performance was the distraction I wanted to get through the next few days. 

People looking at my Instagram picture that day might have thought they were witnessing a regular mother-daughter concert date. Miley is one of the world’s most evocative singer-songwriters and can put on a memorable show. They could not see the collection of fluid built up on my spinal cord, and they could not know the last few days were stressful, at best. They could not know I surrendered in a heap of lethargy that night. They could not see that I had my sister text regular updates on the Keeping Up with the Kardashians episode that night so I wouldn’t fall behind and could feel a sense of normalcy. 

After the Miley concert, I posted a picture of the stage on my Instagram. 

“I’M SO JEALOUS.” I remember reading the comments and thinking, “Sometimes, I wish I was honest about my life, but if I was honest, no one would like me. Having a “normal” life has granted me acceptance, and I will not jeopardize acceptance for being understood.” 

Tuesday morning came. The neurosurgeon called and said there was no way I could have this surgery performed without getting a tracheostomy.

Overcome by fear, I distracted myself the best way I knew how. I wanted to get this surgery over more than anything, but I wasn’t going to put myself in a situation where I would require another tracheostomy. The news was filled with tiny sonic pricks of dread but also a sense of relief. If the number 1 hospital in the nation failed at intubating me, then this surgery wasn’t needed—right? 

My mom and I left the hospital and sat on the swings and swapped tales about the Miley Cyrus concert and if I wanted to move forward with this surgery. 

I suppose this is the theme of my life. I’ll sacrifice just about anything to have a “normal life.” I stared at the ground, and the sound of the brisk air seemed to speak to me. It’s been a challenge to balance it all. But throughout my life, I have found a rhythm. I’m OK with my sacrifice of not being understood because it’s afforded me a life I’m proud of. It’s afforded me a semi-normal life.

If you follow me on Instagram or know me, it will be no surprise that I’m a proud farmer’s (and shrimper’s) daughter, a St. Helena Island native and a staunch defender of the island way of life. My family has been here for generations, and I’m irrevocably attached to the land and the people. The soil on St. Helena Island has always been conducive to agriculture out on the islands.

I detest the development in Beaufort County, and I hope it doesn’t bleed into the Island. If you spent your childhood on the coastal waterways, there’s no reason you shouldn’t be outraged.

Last night, I could’ve cried. Over 300 people in attendance proved that the people of St. Helena Island will always be at odds with development, and we must resolutely dig our heels in against all gates and golf courses for fear of losing our souls. Queen Quet of the Gullah community described her misgivings. Many others gave impactful speeches inviting us to fight back against future development that could jeopardize the livelihood of farmers and shrimpers alike. The fear of more action resides in each of us. A development like a golf course also opens the door to fracturing the Gullah community’s culture and plagues their way of life entirely.

I am a hard person to take seriously for a myriad of reasons. I might not have the typical résumé of someone passionate about the conservation wars. But trust me, I care. I stand with the Gullah community. I stand with the farmers. I stand with the fishermen. I stand with the people of St. Helena Island.

My family and I have endured a torrent of heartache and loss, including my dad passing away and the ongoing medical complications accompanying my sister and I. It would be forgivable if we chose to wallow in the pain, but I always say this: by some cosmic stroke of luck, I was given my strong and dedicated mom and three of the best human beings on the planet as siblings. My vigor is due primarily to the energy of my siblings that back me in everything I do. And I owe them a lot for that.

My sister was in Charleston with my brother, and someone was staring at her, and my oldest brother was bothered by it. My sister said, “They’re just curious.” My brother kindly replied, “Staring is rude, though.” My sister, “I deal with this always; it’s not that big of a deal to me, I promise you. I am OK.” She said as she tried not to crack a smile and laugh. 

At an early age, my sister and I came into possession of thick skin most of the time and an understanding that curiosity is normal. This life begets tight lenses on what matters, and someone expressing interest doesn’t make the list of “important” to my sister or me.

My sister and I believe it’s natural to be curious, and not one person in my life would know where all of my scars come from, what the scars reveal, how that scar up and down my neck was what had prevented me from going fully blind in my left eye after having optic nerve damage. Each scar on my face, head, and body has a story and a reason. Sometimes, I have to remind myself that, too. I have endured a lot, and the scars are just tangible evidence of it.

In general, I avoid thinking about the things I don’t like about my face. Most of the time, it’s because I choose not to dwell on the things I don’t have. Sometimes, though, I’m afraid to know how long the list is. My dad, Southern to the bone. He was tall, and many would have described him as handsome. My mom is every bit of pretty.

This isn’t the life I would’ve chosen, and it’s certainly not a life I would wish on anyone. But I can’t fault anyone for being curious and for people “staring.” It comes with the territory. Trust me; there are days I have the same questions. “What happened?” Of course, I would love to know, but then again, the damage is done. It doesn’t matter if it was a weird alchemy of environmental factors and genetics. Or what it was. My sister and I don’t look like our parents or brothers. I’m not going to lose my mind trying to understand what happened. The damage is done, and we have scars to prove it, and now everyone wants answers.

A medical condition with intense complexities is currently the greatest wound in my life. People “staring” is a painful reminder that my life isn’t ‘normal’, and it never will be. It’s just a condition among those people like me who seem to lose an identity after birth and become a full-time novelty.

Maybe, one day, we won’t attract an obsessive amount of attention. Maybe one day, we may finally put our endless — endlessly fascinating—- story and curiosity to rest.

People like me grow hoisted up to the criticism of everyone on how we handle our lives. We are expected to have a certain mindset. For my parents and everyone whose hearts had been intimately and permanently changed by the arrival of my twin sister and I on that fateful day in September, the loss has taken them on a journey beyond grief.

I’m sure you think, “They didn’t die; in September of 1996, the twins were born.” But, that day also was a day where my parents were forced to memorialize the ebullient spirits they had, and dreams of having a ‘normal life’ was snatched from them in an instant. It was the day my brothers became glass children, and everything now revolved around my twin sister and me. It was the day everything changed.

After we were born, we were diagnosed with Pfeiffer’s Syndrome. Our parents knew their daughters’ paths would not be traditional, but they never imagined the grief attached to everything we do.

There are no rules on how to navigate grief while being alive. Somehow, I have made myself believe I am only allowed to focus on the fact that I was alive- and mostly unscathed- despite almost slipping off the mortal coil copious amounts of time. We all have this image of what grief is and what can constitute a form of suffering. In my mind, I always pictured someone being overcome by fear, falling to their knees right in front of the sink and choking sobs filling their throat as they tried to figure out how to move on in the days after tragedy struck.

The truth is, tragedy struck on that day in September 1996, one of the craziest years to record for my family, and not because of a lousy year in farming. Like a movie, my parents watched their lives flash before them. We were my dad’s 40th birthday “present,” the youngest of his four kids, and he got a girl, actually two girls, something he always wanted. On his 40th birthday, my mom came in with the magic wand with an announcement. She was pregnant.

Years later, my grief looks a little different. It’s more complicated than it was when I was younger. There’s no room for sadness about my day-to-day reality or frustration over how I was born because I was alive, which outweighed everything else. There’s no room for my parents to be pissed off or space for my brothers to be awarded emotions that are less than pleasant and grateful. That gratitude for my life is what fueled my delusions and makes my reality inspirational to many, but I realize now that this mindset stunted my emotional growth. Talking about grief usually results in awkward silences and half-hearted platitudes. Talking about grief concerning medicine makes things just a little more awkward, in my opinion.

“You’re here now! You and your sister are outgoing and friendly and have experiences people only dream of having.” Ah, yes, and I’m grateful for that, honestly. When you’re experiencing grief, most of the time, all you need is someone to listen. Not someone to feel sorry for us. Not someone to give advice. Not someone who will try to one-up in pain. It’s well-documented that talking about grief is dangerous. I know better than trying to understand it. Grief isn’t something I can speak of conclusively. I will love to know if my disappointment, heartache, and sadness have a finish line. I’ll likely be holding onto something that is not even real and will never be forever. I’ll never get the life I should’ve been given. The only way to heal is to forget, but the truth is, I live with the consequences of that fateful September day every day. And will for the rest of my life. Eventually, the funeral has to end, but I don’t think the grief ever will.

So, on most days, grief doesn’t consume me. Most days, you’ll find me among my favorite people, with breaths bated for a future I hope to have. And I hope I get what I want and think I deserve.