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

 

 

 

 

 

 

 

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?