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On my way home from work the other night, I was slumped in the back of an Uber, mindlessly wandering through my phone, as a relentless batch of precipitation said it’s overwhelming “hello” to my city. Water pounded on the outside of the vehicle, and it was damp, and I had forced myself to make a slight detour to the grocery store in an effort to avoid another night of playing “food delivery bingo” with my GrubHub app.

There are many times in life that am happy for the rain: when you can cozy up with your dog in comfy clothes, ideally, by a fire, grateful not to be “out there.” That day wasn’t one of them, though it matched my sentiments, regardless.

Since I am a project manager at the hospital I work at, a lot of my day doesn’t involve interacting with other people (which I sometimes prefer…), and since I live alone, the only time I need to speak is if I call someone or talk to my dog. The latter is arguably often, but I’m not sure it really counts as dialogue.

As a result of the aforementioned circumstances, it’s not often I hear my voice outside of my body. And since much of the time, I’m thinking about a lot of things that are heavy, like feeling unwell, or how dumb other people can be, or the feeling of loss when someone leaves you too soon, the voice inside my head seems reasonably consistent with the emotions that would come from the thoughts I just mentioned. It’s tired, and padded with sighs, and could possibly audition for the voiceover for Eeyore in a ‘Winnie the Pooh’ reboot.

But when I was exiting the car at the supermarket, that wasn’t the tone that left my mouth. Instead, my “thank you!” was light, and cheerful, and frankly, alarming to hear, because it’s not something I expected when it happened. Try to picture those body-swap movies, like ‘Freaky Friday’ or ’17 Again’, where the characters are taken aback when the outside isn’t matching the inside, except I’m both people in the equation.

To be honest, while momentarily jarring, this observation wasn’t really that shocking. I have said for years that there is a very different version of me – a darker version – that exists deep down. And even though I can usually stifle it, that version never completely goes away.

What worries me though, is if I am being disingenuous when communicating in a more vibrant way. I wondered if it was possible for my thoughts to be living in an environment like the Upside-Down from ‘Stranger Things’, but the presentation of my demeanor was more likely to be found in a field of flowers from a Cymbalta commercial. I thought about it for a long time while I threw items into my shopping cart, trying to determine which affect was more “me.”

And while I’ve been learning in therapy that everything doesn’t have to be “one or the other”, and I think it’s reasonable to support the idea that both versions of myself are a part of who I am as a whole, I would like to think that my sunnier disposition wins out, which is hopefully why it’s *still* the version my body defaults to when other options are available.

Or maybe that’s worse. Maybe hiding the darker version is what causes everything to crumble, because if the foundation isn’t stable, everything else on top of it will be more likely to crash.

Either way, this might potentially be an alarming post for some people to read, because I think it’s a little unusual for someone to vocalize these kinds of thoughts. But I think the most important thing is to stay tapped into them. I think being self-aware is the the ultimate practice of self-care, because by understanding how you feel and why, you will hopefully fine-tune the external factors that impact your internal existence.

So ask yourself: who are you today?

xoB

 

 

 

Dear, Lexi

Have you ever been nervous to meet a 6-year-old? It must sound absurd, especially coming from someone who is 34. But on August 26th of this year, I got the first-date jitters thinking about meeting Lexi Townsin, who as of that evening, was the first person I had ever met with Blau Syndrome.

“Will she like me?” “Will she be confused that her parents are excited to meet a stranger in NYC?” “Will she understand why meeting her will change my life?”

I often joke that kids tend to gravitate towards me, because at a “towering” 4’10”, they usually think I’m one of them. I’m immediately accepted into their world because we can have conversations at eye-level. And while meeting Lexi was a breath of fresh air because of how radiant she was, she was onto me. She knew I wasn’t a kid – not because of some unnatural intuition, but because she wasn’t completely a kid, either.

When I was growing up, my cousins used to make fun of me, because at family gatherings, rather than playing tag or Barbies, they would find me sitting with “the adults”, propped up next to my aunts and uncles, having conversations about life as though I had already lived it. But when you’re born with an incredibly rare disease like Blau Syndrome, you, for better or for worse,¬†have already lived it… and a lot of it.

It would be impossible to suggest otherwise. When you have to experience adult-like scenarios like swallowing pills, taking eye drops, getting poked and prodded, going to countless doctors’ appointments, and waking up in the middle of the night for a special pancake breakfast because you have to fast for a hospital procedure, it almost makes more sense when a sick child reaches greatness earlier than most.

And Lexi surely did. Anyone that knew her was so fortunate to have been blessed with that gift. I only had the opportunity to spend a few short hours being captivated by her personality in-person, but since she overflowed with wit and sass, I left our meeting feeling lighter. She made me laugh. She knew the sweet look she could flash her parents when she wanted a meal they knew she wouldn’t be able to finish, which was proven as I watched her father snack on a larger-than-life portion of fish and chips while I spoke with them about all of the great work they’ve done for the diagnosis I shared with their daughter.

Most importantly, she had a voice. And not just the voice that knows how to speak up when something isn’t right, or that charms passersby on the sidewalk, selling lemonade for the foundation her parents created out of devotion to their child – she was also vulnerable, and kind, and knew how to express herself when she was scared, or in pain, or tired. She had learned so many hardships about life at such a young age, that it’s a wonder she had any joy left in her at all.

But that’s what speaks to Lexi’s spirit. Even though so much of who she was can be attributed to how she was raised by her amazing parents, it was always so evident that they felt they were the lucky ones, having a daughter whose laugh scared the clouds away each day. I think it’s pretty common to see siblings fight, especially at the ages that Lexi and her older brother, Felix were. But witnessing their bond, again, showed that her affect transcended any social norms that could be assumed of a 6 year-old.

After meeting Lexi, I had envisioned my future relationship with her. I pictured international phone calls when she was struggling to adjust, or confused about dating, or if she simply needed an ear when she had any concerns about life that I would have hopefully figured out by the time of her asking. I wanted to give her the understanding that I so desperately could have used at her age, and frankly, could use now. But most of all, I was excited to watch her grow. I decided that if someone so young was already such a bright light, how lucky the world would be to have her in it.

And it was.

Even though it’s an understatement to say that Lexi’s time on this earth was cut short pre-maturely, it’s pretty unbelievable to think about how many people felt who she was, even just by watching her videos. Social media can be a sterile place, but somehow, Lexi managed to break that barrier as well, with her touching attempts to raise awareness surrounding her circumstance.

I’m not sure why I’ve been afforded the opportunity to be granted more physical years than Lexi, and as I sit here, living with the same medical condition plaguing my body, the anger, and disappointment, and true heartbreak are overwhelming. During a time where not much makes sense in my life, she did. In a quick encounter a mile away from my apartment on a routine weeknight after work, she helped me understand why people don’t generally see my physical deformities the way I once saw them, and for the first time in a long time, I didn’t feel so alone.

It’s hard to reconcile why something so terrible had to happen to someone so special. Maybe we won’t. And I’ll refrain from saying the clich√© thing, about how we can “learn” from Lexi’s passing, because I’m not yet in a place to accept that this is our reality, or that there is anything we can possibly gain from her absence that is of greater value than being able to get more time.

What I can say, however, is that for reasons that I’ll probably never know, I am still here, and I am still fighting this unfortunate illness, and I will do everything in my power to continue to forge ahead with the grace, and warmth, and valor that Lexi applied to her courageous daily fight being a patient with Blau Syndrome. And now, as I’m writing this from the “comfort” of a familiar Rheumatology waiting room, I’m thinking of Lexi. And even though the hole in my heart is great, I can picture her toothy grin cheering us on from wherever she is, and reminding us that while it might be difficult right now, tomorrow is only a day away.

xoB

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