Fork Your Spoons.©

Hello from Chronic Motivation land.

I am here to tell you a story about my interpretation of the reaction to “The Spoon Theory”, and how I feel it applies to me (and doesn’t apply to me).

In an Instagram live chat I held on April 21st, 2017, I was discussing some of the content that chronic illness forums put out into the universe, with derivatives of “The Spoon Theory” being at the top of the list. For those of you who aren’t familiar, “The Spoon Theory” is an essay that was written by Christine Miserandino, in an effort to help one of her friends understand what it was like to live with Lupus.

To read “The Spoon Theory”, click here.

In abbreviated terms (this is paraphrased), it’s basically understood in the chronically ill community that spoons are used as an analogy for levels of energy, or units to be doled out for anything requiring exertion of any kind. It was basically created to help people who aren’t chronic illies to understand that there is a limit that we hit every day, that more or less becomes our “shutoff point.” Do not pass go, do not collect $200, head straight for bed (and don’t forget the ice cream and the remote).

The theory also does a really good job of explaining how different activities cost us in different ways, and that if there is something we are really determined to do (like go to Prom and dance the night away, for example…), we can “borrow” from tomorrow’s reserve, but we’ll pay for it, and ultimately be laid up in bed recovering from overdoing it the day before.

I have been sick for my entire life – 32 years – and it was only when I saw Instagram’s chronically ill community of accounts that I became acquainted with “The Spoon Theory”, “spoons” and “spoonies” (a name chronically ill individuals call themselves as a result of the theory). It blew my mind to see how many people, people who more often than not are so passionate about not being “defined by their illness”, would label themselves as something that so specifically defines them, and of all things, by their illness.

(Note: I feel like this is the appropriate place to say that, as mentioned above, I do appreciate the Spoon Theory. I think finding a way to articulate, quantify and qualify what we experience every day, in tangible terms, no less, is long overdue, and for me, feels right. I don’t want my thoughts proceeding this statement to come across as an attack on a piece of prose that is warranted for receiving a lot of positive attention. I do, however, have some concern about the way this document has impacted the stigmas surrounding chronic illness, but only as a result of getting into the hands of some bad apples.)

For me, the Spoon Theory is what I think it should be – it’s effective and to the point. Referring to “spoons” isn’t too far behind it as far as my interest-level is concerned, but it does start to make me feel a bit uncomfortable. Finally, referring to myself as a “spoonie” is not something I’m attracted to at all, and I’ll explain why.

As someone who has only ever been battling a debilitating rheumatologic disorder (Blau Syndrome), I have accepted that the life I was born into is the life I will be living until there’s no life left in me. I didn’t have a choice in the matter, but I also have had nothing else to compare to. For this reason, I’ve always said that I give a lot more credit to those who were diagnosed later in life (my definition of later = past the point of remembering not being sick), because they know what they are missing. For example, I will never be sad about not being able to run the same way a runner diagnosed with RA at 25 years old will be sad about not being able to run. Of course, there have been moments in my life where I’ve felt out of place because of my physical limits (field day in elementary school was a major one), but I’ve never sat at home longing for a function that I never had.

With that said, since this is the only life I’ve known, it is what feels normal to me. I know that on paper, compared to every other 32 year old on the planet, there is probably not much “normal” going on for me physically, but all that has ever mattered to me (and will hopefully ever matter to me) is that relatively speaking, I’m living a normal life. And I think that’s sort of the key point that makes me hesitate when starting to label myself as anything other than what I am – which in my case, a physically disabled young woman. I think what many people fail to understand, whether it’s a result of a denial, a need for attention, or otherwise, is that everything is relative for everyone. I might have an autoimmune disease that roughs up my life in some ways, but other people my age might have lost both of their parents in a car crash as a child, or maybe they are sorting out navigating through life as homosexuals, or better yet – maybe their sore point is the fact that they’ve been exposed to no hardships at all, and they are just shitty human beings because they don’t know how to appreciate things.

What I’m really trying to say is that we all go through something; none of it is fair, and not all of it is out in the open. There is also a lot of discussion on social media about how chronic illies live with “invisible illnesses”, but the last time I checked, many illnesses, whether chronic or not, are not seen (headaches, stomach bugs, pulled muscles, etc.), and when walking through the streets of Manhattan, I’ve never seen “I just lost my job” or “I got an eviction notice” stamped across anyone’s forehead, either. There is nothing special or unique about being chronically ill – what makes chronically ill people special or unique has nothing to do with the chronically ill part at all… we are just another group of people, like any other group of people, facing a hardship, which in this case, manifests for us in a physically detrimental way.

It’s funny, because as I’m playing these typed words back into my head, it doesn’t sound like someone who is painfully struggling has written this at all – and that’s exactly what my intention is. I will not start using cutesy words like “spoons” to describe something that isn’t cute at all, and I will certainly not refer to myself as a “spoonie”,  since frankly, I think it’s a word that has become epidemically used and in many cases, abused. Because again, for a group of people who advocates so much to try to be seen as equals and not “disabled,” why would we go out of our ways to highlight the fact that we are different than the rest of the socially accepted population?

And this is when I say: “Fork your spoons.” ©

I don’t mean for that to sound aggressive, and again, I am not trying to discount or discredit the Spoon Theory in any way. I mean for that statement to be empowering, and to motivate the chronically ill population to really accept and appreciate their lives for what they are. We can’t sit here and denounce that we’re different, and then go to great lengths to identify ourselves as such. I say we be exactly who we are: chronically ill. I am a sick person. I am defined by my illness. I am physically disabled. These are just words, and words that, in my case, represent facts.

When I say I am a sick person, it’s because that’s exactly what I am. I am a person who is sick. Every second of every day. There are days I feel better than others, but even on good days, I am medically compromised. My autoimmune condition is always inside me, ready to fight, and just when I think it’s under control, it rears it’s ugly head. Knowing that, alone, humbles me constantly, because I know what a good day looks like, and when it’s happening, I savor it and pray to God it never goes away.

When I say my illness defines me, I’m saying it shapes me. It makes me a better person. My illness has made me tough, articulate, passionate, and wise. I am able to read people well, I matured at lightening speed, and I am more independent than anybody I know. I am so grateful for these character traits that I sometimes wonder if when people get upset by the idea of being “defined by” their condition (but label themselves as “spoonies”), they might not have fully come to terms with or accepted the fact that this is their permanent situation. Because once that epiphany presents itself, it isn’t hard to see the positives at all.

When I say I’m physically disabled, I’m saying I have physical limitations. Again, as someone who has truly accepted my fate, I am not afraid to use words that sound scary if they represent the truth. There are things that I know I just can’t do, and I’m OK with that. I’m sure there are things I think I can’t do that if I cared enough about, I’d do them, but I feel satisfied with that list at this moment. It’s not about a lack of confidence or downing myself, it’s about understanding what is actually within my reach, and not holding myself accountable for the things that aren’t. If there’s anything I’ve ever wanted to do badly enough, I’ve done it, regardless of my setbacks in mobility. This part of my life is what gives me drive and determination, and as a result, I know what hard work and perseverance look like.

The reason I’m explaining all of this today is because a) I am a passionate person, and b) I wanted to express my thoughts in a way that was thorough and representative of the entire picture. My experience utilizing social media to advocate for others suffering has been overwhelming, and not always in a good way. I am vulnerable and open about what my experience has been as a patient, but I also want to be clear in saying that I have, at times, been disheartened by the misrepresentation of how strong chronically ill people really are.

We are tough cookies, stronger than your average bear, feisty, brave and resilient. We’ve been through a lot, but the ones who have the best handle on it also know that we’re blessed with a lot. (And if there are some out there who haven’t reached that point yet, I hope it comes for them soon). We live our lives on purpose, with meaning, full of zest, and with the intention to do as much good as possible. We don’t need to feel validated by others, because we know the darkness that we keep locked away for no one to see. And the only attention we ever want, is not the kind that feels pity for our differences.

It’s the kind that celebrates them.

© Becky Lewand

 

 

 

 

 

 

 

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.

 

 

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?

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?