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 cliché 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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Dear God

I got on my knees and prayed tonight. Like legitimately fell crashing down to the worse-off part of my body (after my heart, clearly), and sobbed into my mattress. And as I unloaded 31 years worth of you-name-it, my dog came up behind me and started sniffing my butt, and it occurred to me that he really is my spirit animal.

He likes assholes as much as I do.

I have had sort of a breakthrough the last few weeks. I’ve always been that person that pushes people around me to do what they love, because I figured out very young that the secret to life is to be as happy as much as humanly possible, yet some time ago, I seemed to have lost what that means for me. On the surface, I have maintained pretty well, but what does that really mean? I went to grad school immediately after college and plowed through, continued with a career that I’m passionate about and am connected to in a personal way, and have managed to stay above water enough to take care of myself physically and prioritize my physical health.

Notice that I just said, “physically” twice.

I mean I guess for someone who has a disease more rare than finding pierogies in trail mix, it probably is warranted that I care so much about my body. It’s not even in a superficial way (usually…), it’s more about the fact that it hurts to do basic things, and in a world where you’re nothing if not “normal”, I just work at being able to grab groceries and get dressed for work.

But along with spending so much time not paying attention to your mental state comes the deterioration of it. I believe I’m quick-witted, motivated and determined, but it can feel daunting, even considering how much it really matters, to take time out of your already exhausting day to fix your life.

Fix. Your. Life.

It’s amazing how three little words can be so powerful when you put them against a white background, yes?

Let’s break that down for a second. First, I’ll tackle “fix” – fix? Like in what way? When it comes to your life, there are no instructions, there is no diagram of what the project looks like when you’re done, and it’s not like I can go into a hardware store and find a tool dedicated to this specific job. Fixing something requires a lot of moving parts, like identifying what’s wrong in the first place, what things would look like if they were OK, and finally, how to get from the former to the latter.

Then there’s the word, “your.” This one isn’t usually difficult for me because I have always naturally been a very compassionate and giving person. It’s kind of a strange imbalance because I really dislike being around people for extended periods of time, but I am abnormally interested in aspects of their lives. For example, some of the best starts to my day are when I’m in a cab with a driver who has had a particularly fascinating story. I like making people feel special by expressing a real desire to learn about them. But does that mean I want to spend time in a room full of people and interact with them for hours on end? Not at all. But the 23 minutes it takes to get to work is just enough time for me to have a substantial conversation and dip out right at the point where enough’s enough.

The problem that I face with, “your” is when I AM the “your.” I don’t use the words “my” or “me” or “I” half as often as I should, and so much of what I’m committing my energy towards is building others up, pushing them to reach their potential, and focusing on how to get them there. But where am I in all of those scenarios? Not fixing or youring.

And then finally, there’s “life.”

The beauty of living alone is always having the ability to sit around my apartment and let my thoughts wander. I was enjoying this the other night when it occurred to me that life is actually really hard. People say, “life is hard” in one variation or another every day, but I’ve never really examined the truth behind it. I began to analyze it and all of these things started hovering around me, like how difficult it is to be healthy, stay healthy, find a job, let alone a job you like, make friends, keep friends, lose friends, earn money, invest money, invest in relationships, heal from relationships, etc. And then I thought about juggling it all in the air at one time, trying to figure out the right percentage of each that warrants your attention in a way that doesn’t screw up the entire equation.

And even if you are lucky enough to figure out how to successfully accomplish the list above and end up with a reasonable life, “reasonable” isn’t “great” and sometimes it isn’t even “good.” It’s just the result of things falling into place, in whatever spot they land, usually without your control or consent. Like right now, I live in Manhattan with my dog and I go to work every day. I could have moved to NJ or Long Island – I just wanted to be closer to my family when I made that decision. I didn’t go out and buy a dog or rescue one from a shelter – I decided to help out a friend, which turned into me acquiring a new pet. And the career I have was a result of getting a job after college that made it possible to pay my rent. I ended up loving what I was doing and I still stand by that, but being good at and passionate about something are much different than doing something every day that truly gets you jazzed. I didn’t intentionally go out into the world looking for work in healthcare. It’s the job I got. The career sort of chose me.

Since I started to realize after being hospitalized and almost getting evicted this year that I wasn’t doing much more than getting by, I decided to make a conscious effort to try to break down the things that make me happy, and more than that, bring me joy. I’ll admit, when I started on this journey, I don’t think I even realized that there was a difference between the two, but after hitting some sweet spots with some of the choices I’ve made, it’s become more apparent to me that the two ideas are miles apart.

I think happiness can be a few different things. It can be perception from what’s learned as being “happy”, like a kid growing up in a home with a lot of things vs. a lot of people, or scrolling through Instagram pictures that exist on everyone’s pages and comparing what your life looks like vs. what someone else’s looks like. It can also be fear-based, which is what I experience, because I’ve had so many bad things happen to me in my life that I feel like if I’m not grateful for days that are arguably average, I’ll be struck with days that are bad, and wish I had appreciated things differently . So I often associate consistency or lack of difficulty with happiness, because in my mind, it still beats the alternative.

Finally, I think there is true happiness, but I think the real feeling behind this last version is motivated by joy more than anything else. To me, joy is what you feel when you are experiencing something that is so undeniably you, like riding a roller coaster feels to thrill-seekers, or when a green thumb sees the beautiful garden blooming that she spent hours planting. I imagine it’s the feeling tattoo-enthusiasts get when they get new ink, and maybe the feeling a fisherman has when he feels something tugging on his line (and also when he catches a fish, HO!)

But I digress…

The way I am trying to think about it is by picturing a board of buttons behind my chest wall that exists, where each button represents something different. Something magical. Like “joy buttons” that get pressed when I do something that warms my soul and radiates comfort and excitement throughout my body. Playing the drums again has given me a glow that I haven’t seen on my face since the “Bottle of Wine for Breakfast” days after my divorce. It’s something my Dad says he hears in my voice over the phone, and I can tell by the way I’m smiling when I watch the playbacks of my videos that it’s coming from my stomach, not from my head.

I think the best way I can explain what I’m saying is that when you’re happy, going through the motions and thinking about a state of mind, the smile is being pulled from your mouth upwards by your frame of reference about what happiness is. Joy, on the other hand, is when you feel so elated that it explodes from within you and pushes the smile up from from your gut to your mouth. Happiness, like the analogy, feels more forced, while Joy is there to provide a good foundation.

Now, with all of this said, it occurred to me that if I have 8 buttons on this internal grid and just one of them can make me feel such delight, imagine the gratification and pleasure I’d feel if I had them all tagged with something special. What if every time I opened my eyes in the morning, there was a way to push at least 4 of them before even starting my day? Or better yet, is it possible to have them all pushed at the same time? I can’t say I know that answer, but I DO know that trying to accomplish that sounds way more rewarding than settling for being happy in a way that’s safe and socially suggested.

Life can be many things. But one thing it isn’t is pre-determined. You can be dealt a bad hand and choose to trade your cards in for some new ones. Or you can survive with what you have and hope for the best. Either way, both options start with “you”, and the first step to creating the life you want is understanding that it will be your decisions that ultimately paint your picture into a reality.

Don’t forget to add your happy trees.

Amen.

 

 

Touchsick

physical touch quote

Wouldn’t it be great if it were just this easy? If those whose immune systems didn’t know how to behave could just get some good old-fashioned TLC and call it a day? No steroids, no endless explanations to the bosses that never seem to get it, no monthly infusions? I have to say, I saw this quote and I was pretty mindblown at the thought.

But then I started really thinking. And maybe finding the alternative isn’t easier at all.

A few years ago I got divorced, and in talking to one of my friends, it occurred to me that one of the worst parts of leaving a 7-year relationship was getting used to sleeping in a queen-sized bed alone. There’s something physically uncomfortable about regular human touch being ripped from your life, and it’s something I started chasing immediately (in all the wrong places). While it probably took me 6 months or a year for that to feel less strange, it’s still an anomaly to me.

I learned about this approach to becoming my “whole self” by this theory I read in a book a while back, and it’s a method I’ve tried to apply to my life ever since. The general idea is to think of owning a pizza shop. It happens to be the pizza shop of all pizza shops, with the best pizza, with an unlimited supply, and it’s free. Now, if someome came to your house and knocked on your door, saying, “hey, I have the BEST pizza on the planet – just do whatever I want and I’ll give you some…” how would you respond? Would you run laps around the living room? Give him your new pair of shoes? Pay his rent? Even more, would you sacrifice parts of who you are, emotionally, for the pizza this person was offering? Of course you wouldn’t, because as I mentioned, you already have an endless quantity of the best motherfuckin’ pizza on the motherfuckin’ planet. You’d say, “No, I’m really good, thanks. I got my OWN pizza. Keep it moving.” :::snap:::

But what if you didn’t have that pizza shop? What if you hadn’t eaten in a week and you answered the door really fucking hungry? Now the circumstance has changed. You no longer have the upper hand, and you’d be inclined to do whatever was asked of you, because you weren’t able to provide yourself with what was being offered.

So if you were to apply that analogy to relationships, you can either be answering the door as a boss-ass-bitch, providing yourself with everything you need, so no one else could be used to fill your voids (read: make you happy), or you can have holes in your happiness, leaving yourself room to let other people break you down in order to survive. With this idea in mind, I spent the next few years trying to figure out where I wasn’t “complete.” I discovered that I’m independent, resilient, and educated. I have a fulfilling career and can provide for myself financially better than many people my age can. My healthy lifestyle is on point, I can cook, I speak a few languages, and I know my way around the city I live in. But there was always one piece of my life that I was never able to figure out.

I know how to make myself happy. In fact, every once in a while I’ll throw caution to the wind (ignore my bank account balance) and have a “Becky day.” This usually involves getting my nails and/or hair done, maybe adding a few cute pieces to my wardrobe, stopping at Starbucks for something sweet, and dancing around my apartment while I wait for Seamless to deliver me something I shouldn’t be eating. But the mystery for me remains: how do we re-create human touch? How do I show myself affection? Sex I can figure (finger) out, but I can’t hold myself in bed or rub my own back. I can’t kiss my neck or play with my hair. I’m not even trying to be a smart-ass; this is something that has tortured me for the longest time because I know for a fact that it’s this one missing fucking piece that keeps me at a disadvantage. And while I do believe that I’ve gotten significantly better at determining when someone is worth keeping around (Lord, have I…), I am scarred so badly from my past and so accustomed to going it alone that the thought of becoming the kind of close to someone again in a way that I really want absolutely terrifies me, because with pleasure comes the risk of loss, and pain, and pain.

And pain.

And so after reading the quote above, I wonder if all of us “chronic illies” are even more drawn to intimacy because of the emotional crosses we bear every second of every day. I’m not sure about everyone else, but I can tell you that for me, it’s not even just about being touched. It’s also about having someone around that matters to give it back to. I’ve always said that being sick makes me a compassionate person, and it’s here especially that this is true. I love loving. I know that when I touch someone, I have the ability of telling them how important they are without saying it with words. I don’t just touch with my hands, I touch with my mind. I think about how I want to be touched, and how the person I’m touching deserves to be touched. And all of the stress of my day seems to just bleed out when I have someone to connect to like that.

… which is so much better than connecting to an IV line.