“I’ve known since I was 8 that I couldn't have kids. I was born with several problems and physical differences like a cleft palate, crossed eyes, and malformed ears that made me essentially deaf. I've had over a dozen corrective surgeries, seven of them before I was a toddler, and that was supposed to be the end of it. Then I stopped growing. It took a while to figure it all out, but I was finally diagnosed with Turner Syndrome. I've spent a lot of time in Philly at CHOP getting tested, participating in a brand new growth hormone study, and just generally being poked and prodded since it's such a rare disorder. The testing showed that I have nothing to make babies with. My reproductive system is barely present and does not really function. Much like the rest of me, I guess.” That last part I can tell she added for some dark humor, to deflect from the rest of what she said, but I'm not laughing. This woman. This brave, strong, beautiful woman.
“Lyra,” I almost growl. “Please don’t ever talk about a wonderful woman that I really like that way. I've heard of Turner Syndrome. When my sister-in-law Sienna was pregnant with my niece Addy, genetic testing showed Addy had a 50% chance of being born with it. We all did a ton of reading about it.”
Her lips part in surprise, another array of different emotions flitting through her striking features more quickly than I can catch them. “Was she born with it?”
“No, unsurprisingly. I know the numbers. We were even mentally preparing for Sienna to lose the baby. My brother Seth was a wreck through the whole pregnancy. She was born with no issues.”
“I’m so glad she's ok. I’m honestly shook that you know what Turner Syndrome is, in a good way. It makes talking about it much easier," she says sincerely.
My mind is racing with questions, but I don't want to interrogate her. Our drinks and arepas arrive then, so for a couple of minutes we eat and sip our drinks in easy silence. Then I decide to get the conversation going again.
"Tell me more about what you had to go through, if you don't mind. I want to understand," I say instead of asking one of my million questions. She looks at me like she doesn't believe I want to talk about this, but I raise my eyebrows back, asking for her to go on. She sits back and crosses her arms after taking a long sip of her margarita.
"Well, I was extremely lucky. A lot of the girls have heart and kidney issues, learning difficulties, coordination issues, webbing in the neck, hands, and feet, it can be hard for a lot of them to function. My heart and kidneys are fine, I was always a straight A student, I've danced for most of my life pretty successfully, and no webbing. My issues were mostly growth, my eyes, mouth, and ears. In the study I was in, I had to take an injection of growth hormone every day for well over a decade. I still to this day struggle with social anxiety too, I'm very introverted. That's a very common thing among Turner girls because the differences can make us feel isolated. There's a big mental health aspect to growing up with so many medical problems. I was bullied mercilessly because of it. The kids beat me up, mocked me for not being able to talk clearly after I had a palate expansion surgery, for not developing like the other girls my age, you name it. That was worse than any of the physical differences.” There’s a bitterness to her tone that I have never heard before, and it speaks to how hard it was for her to relive those memories. Sheseems surprised that all of those thoughts rushed out of her mouth.
I'm just staring at her, absorbing everything she's been through. I think she interprets it as being bored stupid or something because she looks away, embarrassed.
“I’m sorry, aren't you tired of my medical nonsense now? I keep blabbing, I don't know how you get me talking so much. Talk about you a little. Tell me more about your family.” Then she mimes zipping her mouth and throwing away the key, which is pretty adorable.
“Stop it, you're not blabbing. I want to know these things, because I want to know you,” I tell her gently as I reach for her hand to squeeze it. “Anyway, there's not too much to know about my family. We're close, especially me and my mom. Seth, Sienna, Addy, and my nephew Mason live near Silicon Valley and he's my only sibling. My mom is much better now, but she had a stroke a few months back, so that's been a lot. I told you about my dad already.” I shrug a little. “That's really it about my family.”
“You said you might go back to school? What do you want to study?” She doesn’t remove her hand from mine.
“Before my Dad passed, I wanted to go to school to become an architect. I'm trying to figure out if that's what I still want. A lot changes from 18 to 28, you know?”
She nods thoughtfully. “I love the idea of architecture, but what are some other things you might want to go for?”
I take a little breath. “It might be silly, but I'm looking into how much schooling it would take to maybe become a nursing assistant or an occupational therapy assistant. I wish I had been able to do more to make my dad comfortable, and helping my mom through her stroke has inspired me. I love watching her home health aid work with her.”
Her face completely softens. “That's a passion for youright there, it's not silly at all. I see it when you talk. That personal experience would fire you up. I think it's a great idea.”
Who knew that getting an endorsement like that from her would feel like winning the lottery? “Yeah? I've never done anything but what I'm doing now, I don't even know if I'd be any good at being a healthcare professional.”
“If it's something you're passionate about, that's half of it already. I think you'd be great at it, Taran.”
“That means a lot,” I tell her, my throat a little thick. “It's so stupid, I've delivered your work to you several times now, but I don't even know what company you work for, or what you do with it? I know you said you review marketing materials.”
She chuckles, and unfortunately takes back her hand to tuck a few stray curls behind her ear. The clink of glasses, boisterous conversations, and music around us are all faded to the background as we talk in our own little bubble. “It's nothing too exciting. I work for a small, local pharmaceutical company called Kirotech. Anytime our marketing team wants to promote a drug, I'm in the department that has to make sure they don't say anything in the promotions that are against FDA regulations. It gets especially busy when there is a convention with booth setups, or the launch of a new drug with completely new ad campaigns. Basically, we're the ones that make sure the ads list all of those lovely side affects that sometimes sound as bad as the disease it's treating,” she jokes.
“Do you like it?” I ask on a laugh
She tilts her head as she considers the question. “I don't love the corporate aspect of it, and I don't always love the meetings where we have to tell the marketing department that their new ad violates a lot of regulations. That's notfun. Working from home has made the corporate aspect much better though, and I love helping get life saving drugs on the market. I think it's similar to you having personal experience making you want to go into healthcare. My hormone therapy changed my life, so I enjoy the idea of getting needed therapies like that out to others. The company is a good company to work for, they treat us workers well, and there are fantastic perks and benefits. The way drugs are priced is a whole other discussion, though.”
“How did you end up getting into it?”
“I needed to support myself after college and get out of the house. I had a random job at an insurance brokerage right out of college that was fine, but it was definitely time to leave after 4 years and nothing to really show for it. I applied at this place, started at the bottom and worked my way up. I've been there for just over 10 years now. I sort of stupidly fell into it, and it stuck. It's steady, the science behind the drugs is really interesting, and my other reviewers that I work with are all great.”
“Nothing wrong with that!”
She nods in agreement. “So, um, would you potentially be going away for school, or would you be staying around here?”
I kind of love how aloof she is trying to be, even though I see through it. A completely smug grin overtakes my face before I can even think. “Would you miss me if I left, Firecracker?”
She glares daggers at me as she does that gloriously defiant chin lift. “Just asking if this dude who keeps trying to date me is going to up and leave. Long distance sucks.”
I can't help but chuckle. “I’m not going anywhere, mywhole life is here. I'll still need my job during the day and will probably take classes at night.”
She tries to mask it, but I see the relief in her shoulders relaxing. “Good,” she says simply. The live band has been warming up for the past few minutes, and now they're starting. We've finished our drinks and arepas. So I get up and offer her my hand.