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.

 

 

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On Fear

never be afraid to fall apart

Honey child, this post is about to be served two-ways. We are going to go from the angle of taking a risk that has the potential to blow up in your face, and also the direction of having the guts to walk away from something that you know will cause some serious heartache. If you haven’t figured it out by now, both outcomes could leave us in a broken mess on the floor, but when talking about life and personal growth, that can be really hard to avoid.

Hope you’re hungry.

Let’s start off by discussing why this quote spoke to me in the first place. Lately (this year…), I’ve noticed that a lot of my decisions have been dictated by fear. But different than most “fears,” I’m not afraid of failure in the sense that one would fail at a new job or hobby. I have pushed through monthly chemotherapy infusions for my chronic illness, applied myself to challenges at work, and held on strong with my weekly personal training workouts, even when I just wanted to sleep until tomorrow. Where I haven’t been able to really gain stability has been in regards to challenges of the heart.

Failure to “fall apart” can manifest in many different ways. First of all, let’s say you’re in a situation where you find someone who you connect with in a way that you haven’t found in a really long time. The back and forth is easy, you make each other laugh, you understand each other intellectually and you motivate and support one another to achieve greatness. But both of you aren’t whole. One person is carrying the other along, hoping it’s enough to bring you both up to speed. Because one of you cares so deeply about the other,. you start to overlook basic needs, a respect level, and before you know it, you’re so far gone you have no idea how to get out. The red flags are everywhere, but there’s progress, and when you’re happy, you’re a “this doesn’t get any better” kind of happy. You want to jump in, dive in, head first, even though there are sharks in the water. Wait, sharks? Did somebody say sharks? Yes, sharks. But you can handle sharks, right? Just don’t think about it. You’re a strong swimmer. And if you can just swim to the other side of the pool without getting eaten alive, you could be the happiest person you’ve ever been in your entire life. But what if you don’t make it? What if you decide to go for it and you make it seconds to the finish line before getting swallowed by the first shark you snuck past when you got into the water? Are you brave for trying, or are you just insanely stupid for thinking you could just ignore the warning signs that were there right from the start?

When it comes to this scenario, the issue I’m finding for myself is that I’m standing on the ladder, getting used to the water, going one step deeper at a time, and as soon as I see a shark, I jump right the hell out of the pool, screaming, “see! I told you this was dangerous!” But then the waters calm down, and my confidence comes back a little bit more, and maybe the next attempt brings me 1/4 of the way before spotting trouble, but I still revert back to what I know – ditching the progress I’ve made in the process. As it relates to the quote, I need to figure out if getting ripped to shreds is worth what’s waiting for me on the other side and commit to that, punching some sharks in the face.

And if not, the courage to….

For me, walking away would be equally scary and anxiety ridden. If you decide that you deserve more than putting yourself through hell in order to be “happy,” it’s also a decision you have to make and really own once you’ve made it. You can’t just say, “OK fuck this, I’m not going to deal with that BS” and keep looking back wondering if you could have made it across with all your limbs. Fear on this side of the coin is actually much louder for me, because there’s nothing more that I try to avoid than emotional pain. For whatever reason, I can handle getting the shit kicked out of me at the doctor’s office, but don’t try to watch me get over someone I care about. I’m not exactly sure what scares me the most about this, but I do know that it is this fear that prevents me from taking care of my heart the way that I should.

But think about all of the possibilities that could come from biting the bullet and really just walking away with your big girl pants on. Sure, it’ll hurt. Probably a lot. OK, maybe more than a lot. But what will you really be losing? Insecurity? Doubt? Disappointment? I think the key to this avenue is probably really focusing on that “big picture” people like to reference so often. Scenario one is likely to be a little more tuned-in to instant gratification. “I’m not ready to put myself through THAT level of pain, so I’m just going to continue to hurt myself in doses at THIS level.” But maybe we can just rip off the band-aid and replace it with a clean one. Really let the wound get exposed and cleaned up and start to heal in a healthy way – one that will certainly take time, but one that has a chance nonetheless. 

So which will it be? Just go for it? Really commit to just going into war, battlewounds and all, maybe not even arriving on the other side with a heart left to beat with? Or will you be strong enough to realize that when it’s right, you won’t be the only one fighting off the sharks (if there are any). You should never have to prove anything but love, and love should not hurt like this. One day I’ll be able to take my own advice, and you will be nothing but my muse. I’m ready to fall apart.

Will you catch me?

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.

Chronically Becky

For as long as I can remember, writing has always been my therapy. I’m not really sure why it started or how old I was when it did, but I think it had something to do with having a lot going on at such a young age and not knowing any other outlet to express what I was dealing with, since looking to my left and right, there was no one I could relate to. For those of you who are only just meeting me, I was born with quite the unique auto-immune disease. It wasn’t really determined that anything was wrong for the first year or so of my life, because the way my parents figured out I was in pain was by the way I screamed during diaper changes. I think there was a strong component of screaming generally in just about everything I did (not unlike me at 30 years old…), and then when I wasn’t walking with the rest of the kids my age, I was evaluated and misdiagnosed as having JRA (Juvenile Rheumatoid Arthritis). I had a Rheumatologist at the time who wanted to give me gold shots, which thankfully scared the shit out of my parents, and after getting a second opinion, I was diagnosed with the disease I called myself for the next 25 years: Sarcoidosis.

If you are reading all of this and thinking, “who cares what the fuck she has – these conditions are hard to pronounce and I’ve never heard of them, anyway,” I have to say that you aren’t so far off from the way I was treated for most of my life by hundreds of doctors I had the “pleasure” of meeting. I spent many days sitting in doctors offices, getting poked and prodded and put on display at teaching hospitals for residents and students to gawk over. It wasn’t until I was about 26 that I got my last (and hopefully, final) diagnosis, which is known as “Blau Syndrome”, which is really just a fancy way of saying, “rheumatologically, you never had a chance.”

The way my medical condition and I “hang” is basically by planning out every second of every day in every way possible; you know, so I can be a normal spontaneous individual. I have arthritis in every joint in my body, degenerative osteoarthritis in pretty important spots like my knees, hips and spine, orthopedic deformities (which I actually think are unrelated and just an added bonus to all the fun…), and eye disease (Uveitis) to round things out. The biggest problem I face is managing the inflammation that is caused as of a result of the arthritis, and when you have it every place you possibly can in the machine you’re living in, it can be pretty difficult to figure out how to how to make it through the day successfully, let alone accomplishing basic tasks like getting ready for work or washing dishes.

There are many layers to my chronic illness, and as a result, many layers to me. Rather than sit here for the next 45 hours and type out a rough history of the craziness I’ve been through, I really just meant this post to be a mic check, if you will. You know, to see if this thing is on and if anyone is interested in staying for the live show. It’s more in my nature to reference specific events in my life as they relate to how I’m feeling on a certain day or how I can tie them into a point I’m trying to make. It is my sincere hope that this blog provides some source of comfort for those who have been sick their whole lives or recently diagnosed alike, and for those who aren’t sick, to just really consider this: waking up every day with an illness that won’t ever go away was certainly not my choice and is not the choice of others who are the same position. I do not need you to feel bad. I do not need pity. I am a strong, capable, grateful young woman who is appreciative of every good thing I have. But compassion seems to be a lost quality in many people I meet. All I ever want is to be understood.

But will you take the time?