How US politics could be the death of me… literally.

It’s no surprise by now to my friends, family, and social media followers that I am a proud supporter of democratic presidential candidate, Andrew Yang, and a de facto emphatic member of the #yanggang. At 34-years-old, I have always been informed “enough”, brushing up on whichever Dem. and Rep. candidates ended up on the party tickets a few months before election day, and every once in a while, when I felt personal affection towards a candidate (Obama…), I would watch the bipartisan debates in a bar filled with like-minded suporters, thinking I was doing my part.

I wasn’t.

As I’ve gotten older, and life has kicked my ass in ways that other people my age can’t relate to, one thing about being in a democracy has become abundantly clear: not caring about politics is a privilege.

Of course, I’m self-aware enough to know that I am privileged in many ways, especially relative to other demographics that face social inequities that are unfathomable. But as a person battling chronic illness, many roads on the political front lead back to me, and being inside a body that isn’t typical for someone so young, it’s hard to not feel enraged by the struggles I endure as a sick US citizen, and frankly, struggles that probably don’t need to exist to the degree that I experience them.

Most people who have met me in any capacity know that I am rational and accountable for my life to the extent that it is within my control. I do not feel entitled to special treatment, I do not expect others to understand what it’s like being in physical pain every moment I’m alive, and I do not think I am “owed” a reward for my life’s circumstance. But when I work a full-time job, pushed myself to be master’s degree educated, and maintain a robust career in healthcare, regardless of invasive medical treatments (including chemo each month), the discrepanies between my quality of life vs. those who do not live with illness are demoralizing, overt, and impossible to ignore.

Every campaign season highlights relatively predictable topics: socioeconomic inequality, poverty, foreign policy, and the economy. But this year, the hottest topics include: 1) arguing for the “best” healthcare system for our country, and 2) the looming threat that climate change has on our planet as a whole. There are plenty of reasons why our healthcare system needs to be addressed (i.e. Trump proposing to hault medical coverage for those with pre-existing conditions, the country trying to salvage that which remains of Obama’s Affordable Care Act, and the rise in concern about what the FDA deems as “safe” to consume, as citizens become more educated about what they are eating.), and the natural disasters we experience regularly makes it hard to deny that the earth’s wheels are falling off.

And there are reasons why people are passionate about both. While I believe that climate change is a global threat, Andrew Yang highlights the inherent privilege in prioritizing that over other issues, when he discusses that people who are living paycheck-to-paycheck have more immediate issues they have to worry about. That’s not to say that global warming isn’t an issue, because it’s  a very scary reality. But it’s a luxury to care more about a problem that is a generation or two away when my rent is due next month.

The same is true when we consider most topics our presidential hopefuls discuss on the debate stage. When it comes to healthcare, whether the government decides it’s “best” to move to a single-payor system or not, and whether they are “right” or not, the only thing I care about as a sick person is that if they do get it wrong, it could impact my health to the point where I might not survive the fallout.

Based on the track record our country has exhibited, especially of late, when it comes to making unilateral decisions that aren’t best for its’ citizens, it wouldn’t be just a minor inconvenience for me if we elect someone who is out of touch with what my day-to-day needs are as a sick person. And again, it’s a privilege to not have to care. In fact, of all of the privileges one could possess, it’s one I wish I was on the right side of.

The reason I feel I am able to be diplomatic with friends and family who disagree with me, politically, is because I am generally an empathetic person. I am able to understand why someone might feel strongly about things that don’t impact me directly. After all, how could I possibly feel passionately about something that has no significant bearing on my life? But truthfully, I think lack of empathy, knowledge, and insight are the exact reasons why our country is so divided to begin with. What people need to consider is that something doesn’t always have to matter to you, it just has to matter to you that it matters to someone else.

When talking about healthcare, there is a huge push for a universal system, and in particular, only a universal system. This is a really difficult concept for me to wrap my head around, which I think surprises a lot of people, since medical coverage is arguably the most important factor in my life. However, when we look at broken programs like the VA Hospitals, which are constantly discussed as treating our country’s veterans as second-class citizens, or welfare programs that are nearly impossible to qualify for or are abused, it’s hard to imagine how someone like me could feel any level of faith that I will be properly taken care of if my current healthcare access is removed.

In addition to that, we have evidence in other countries that universal systems aren’t a perfect solution, either. In fact, a few years ago, I connected with a woman in Ireland whose sweet little girl has Blau Syndrome like me, and she had to go to the newspaper circuit to raise awareness about how ineffective their public option was for her chronically ill daughter. We hear general horror stories about other countries and even “joke” about Canada’s wait-times, but for those of us managing debilitating symptoms and in many cases, life-threatening ailments that require time-sensitive treatments, there is nothing funny about an interruption of care.

Most chronically ill and/or disabled people in our country would probably not claim that our current situation is the best case scenario. The fact that being a full-time employee is commonly mutually exclusive to having the highest quality healthcare coverage is another one of our country’s deep-rooted privileges. It’s also one of our country’s greatest ironies, because if you can’t work due to poor health (which is circumstantial, not a choice…), you’ll no longer have access to the best resources that exist. And there are way too many factors that make this insurmountable. If you aren’t well enough to work, you won’t have access to the ideal care you need, and a lack of income will prevent you from being able to afford to supplement whatever (shoddy) government assistance you receive. Basically what I’m saying is this: if you’re well enough to work, you’re well enough to receive medical care that will keep you well. And if you aren’t well enough to work, well, you do the math.

This is easily one of my greatest fears as a sick person. Even though my symptomatic health ebbs and flows, I will always be in a state of decline since my disease is degenerative. As a result, I have no idea what I will do when I am no longer able to work. As it is, with a six-figure salary, my medical-related expenses (not to be read as “my medical bills…”), soak up 50% of my paycheck each week, when you factor in the out-of-pocket costs of taking cabs to and from work (vs. inaccessable public transportation), using a laundry service since I can’t carry it to a laundromat, getting groceries and meals delivered since I can rarely walk around a supermarket or carry shopping bags, and paying someone to wash and dry my hair since I am often too fatigued to maintain my hygiene at home.

But with that being said, this is the devil I know. I would far prefer a universal system that covers my healthcare the way my private insurance does, but I think it’s extremely naive to believe that it would be the reality, at least not immediately, especially when you have politicians like Elizabeth Warren “othering” the disabled population and not even realizing it, as she promises “affordable housing” for “them.” I don’t want “special” housing, honey. I just want my income that I’ve worked hard for to pay for my “cozy” 400 square-foot home (read: closet) that I’ve lived in for 8 years. I don’t want to be pushed into poverty so the government can give me subsidized housing; I need the economy to work for people in my situation.

And I don’t think it’s a coincidence that the people who are pushing for extreme and radical change wouldn’t be impacted negatively by the change if it didn’t result in a positive outcome. For example, Elizabeth Warren also loves talking about taxing the shit of the “wealthy”, but she considers the “wealthy” to have more than 50 million dollars. FIFTY MILLION DOLLARS. Why the fuck doesn’t she consider 5 or 10 million to be wealthy? Probably because she has 12 million in the bank. And it goes without saying that people with a fuck-ton of money don’t have to care about a broken healthcare system, because they can pay for whatever they need to out-of-pocket, anyway. So if she gets it wrong, no harm no foul… for her.

I’m not convinced that a lot of people understand the role anxiety plays in managing one’s health when it’s always a problem. You have to coordinate multiple medical visits a week, and if you’re working, it’s a real bitch to stay employed and stay sick. I know that I personally can run meetings, manage high-level projects, fix operational issues as they arise, and train new employees with ease, but if I have to flex my schedule by 30 minutes or use my lunch hour to go to an appointment, that’s what leadership will remember. We have to take medications that have grueling side effects, we have to push our bodies to function around the hours society expects it to (i.e. 9-5), and we have to fight with insurance companies to avoid delays in care. So while I appreciate the sentiment that Warren and Bernie promote, because medical care is (read: should be…) a basic human right, I need to feel secure about making that change so I don’t have a nervous breakdown in the process.

It is an unfortunate truth that the hardships we face in our life, especially those related to health, are the the exact misfortunes that are counted against us when it comes to having perceived value. As Andrew Yang also discusses, we have a GDP that states that “business is booming“, but we are at an all time record-high in this country of suicides, decreasing life expectancy, and depression. If America is considered to be the model, why are its’ citizens traded for dollar signs? Why is Mike Bloomberg pledging to spend a billion dollars on advertisements for his campaign when it’s estimated to cost only 55 million to completely fix Flint’s water system? 

Where are our values, America?

Furthermore, why are the people making the decisions about my health the same people who wouldn’t be directly affected by those decisions anyway? I watched an episode of The New York Times series THE WEEKLY last night, and it was a room full of people who are not impoverished, who are well enough to work, and who have a regular platform to speak in their editorial columns every publication, making decisions about who to endorse to best represent the most pressing issues of our nation – many of which did not exist in that room. Why are we not paneling a stadium full of sick people to find out what our actual needs are? Why are we not asking the lower/middle class what would be needed to climb out from underneath the rubble? It was yet another missed opportunity to capture the essence of what’s in the hearts of many. 

We Need a president who isn’t a lifetime politician. Experience is one thing, but a lot of the people running for the most important job in our country, the job that will hold our fate in their hands, have already been unsuccessful in the smaller roles they hold. We need someone like Andrew, with vision, and heart, and ability to make a difference. Because life is hard, and the mess we have in our country right now would probably cost a gazillion dollars to correct.

But compassion? We’re in luck. Compassion is easy.

Compassion is free.

xoB

 

 

 

 

 

Meta

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

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

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

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

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

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

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

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

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

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

So ask yourself: who are you today?

xoB

 

 

 

Day 3 – The good, the bad, and the ugly cry.

Mornings are usually the most difficult time of day for me to ambulate. Since I have arthritis in every joint in my body, there is kind of a “wake up” period before I feel comfortable to move around and start the day. Because of this, I was really concerned that there wouldn’t be a “day 3” on my mission, but something really cool happened.

After my medicine kicked in, and I started to wake up a bit, I naturally felt pulled to sit down at my makeup table.

If you’re reading this and you follow me on Instagram (@chronicmotivation), you probably know that I’ve been working on an apartment decor overhaul for the last year. In that time, I had my eyes set on this beautiful white-laquer desk from CB2, but I couldn’t buy it initially because it was really expensive, and the delivery fees were out of control. After scouring craigslist for months, I ended up finding someone who was selling it for less than half of what I would have paid through the store, and I ended up bringing it home in mint condition within the hour.

With the new furniture addition to my den/get ready room/writing area, I was inspired to go out of my way to organize the drawers in the desk in a way that would be conducive to me actually using all of the makeup I have. I think like many women, we tend to have 24 blushes and 36 eye shadows, but since it might be thrown in a makeup bag, or even some kind of storage bin, it’s hard to see all of the options that are available. I’ve always been really big on keeping things visible in my home, because I believe that when you start to “store” things in a place that’s hidden, you forget quickly that they’re there, and you might as well not have those things in the first place.

I’ve had the makeup display setup for a couple of months, and I probably only used it twice in that time. But there was something to be said this weekend for being able to simply slide open the drawers and see everything in it’s place, and to have fun with the options laid out in front of me. Remembering the joy that it brought me, I was excited to sit down before work this morning and have some fun.

Day 3 makeup dog.jpeg

I went to work and did my thing, and then I decided to make a second trip to DSW to see if the location near my job had some other choices. It probably sounds like I’m a shoe maniac, but I promise I’m not. Buying shoes that are flat, that don’t look like they belong in the senior center or on a 5 year old, are comfortable, and that I can afford, seem a less likely find than a unicorn directing traffic on a Tuesday.

Even though I didn’t get exactly what I was looking for, I did up leaving the store with some cute new compliments to my collection.

 

And then, I did something fantastic. Part of this journey, since I’m sort of writing the rules every day as I go along, is to really challenge myself to step outside of my comfort zone (physically and mentally…), and to check something off that I either have been meaning to do for a while, or doing something in general that breaks up the monotony of my “wake-up, go to work, eat dinner, tv with the dog, sleep” routine. And today I really accomplished that.

Over the weekend, I had come across this really cool dessert place called, “Sweet Churros.” It basically is a homemade churro place that adds different toppings and some ice cream choices. Unfortunately, I couldn’t bring myself to pay for such an expensive cab downtown from my home, so I figured I would wait until I was in the area during the work-week. Even though I felt pretty crummy because it’s been really humid, and I was exhausted after working all day and walking around the shoe store, I forced myself to put “Sweet Churros” into the Uber destination and I just went with it.

The actual place would have been easy to miss if I wasn’t looking for it. I ordered a churro covered in Fruity Pebbles cereal, and had it sitting in a cold cup of vanilla soft serve. I was initally worried that I would be covered in the treat in a matter of seconds once it met the summer sun, but whatever this place is doing is working out perfectly, because I was able to enjoy my food without wearing it.

Day 3 churro.jpeg

 

Even though my trip was successful, something snapped inside of me on my ride home. I got a lump in my throat, and all I wanted was to be on the other side of my apartment door so I could cry my eyes out. I’m not sure if other sick people can relate to this, but sometimes it feels easier to just go along with the status quo instead of reaching certain milestones, because it shouldn’t be a big deal for a 34-year-old to get ice cream on a hot day. I was so grateful to be able to follow-through with my detour, but it also took so much energy out of me that I fell asleep about 30 minutes after I got home.

What kind of life is that?

Anyway, tomorrow is another day. I have some other things contributing to my shift in mood, but I really hope that I’m able to leave that sadness in today’s history and feel a bit more hopeful for a better tomorrow.

Until then.

xoB

Day 3 work clothes

Day 2 – Summer Feet.

I wasn’t really sure how today would turn out, since all things sound great for about 24 hours. I thought maybe I would wake up this morning and tell myself, “well, that was fun. I’m just going to lay in bed all day instead.”

But I didn’t.

I think it definitely helped that my hair was still looking nice from last night’s shower. I was able to just brush it quickly, and a good chunk of my get-ready process was done.

It was really, really hot in NYC today. It ended up working out well, though, because I had a dress in mind that I wanted to wear, and the weather supported that decision. It was really awesome to grab an article of clothing from the closet that a) still had the tags on it (are you catching the theme with that, yet?) and b) I could actually consider since my legs were smoothly shaved. Many of you might be thinking, “but Becky, it’s the summer – you have to at least keep up on that, don’t you?” And the answer is, “no.” I have blonde hair, so I get away with whatever I can get away with.

With that said, it was also really nice to get a pedicure today without worrying about the nail girl getting a rug burn on her hands. There’s a first time for everything.

Day 2 white pedi

(Don’t mind my summer feet. Sum’er here, sum’er there…).

I think I’m going to have to consider buying some more cute things to wear over the next few weeks, since nothing in my closet seems to be safe from being pulled out and worn. And honestly, one of the things that has kept me excited about continuing on this journey is being able to wear new things – feeling the joy of running around in an outfit that hasn’t seen the light of day.

An observation that I had today that’s pretty similar to yesterday is that I was noticed for the clothes I had on. I went to the pharmacy, which is a very normal trip for me, but today, the salespeople paid attention to me differently. I was barely inside the sliding glass doors before some girl yelled across the aisle, “I love your dress!” When I picked up my Rx, the pharmacist gave me a look that sort of read like, “who are you, and what have you done with the lump of a person I normally see here?” But the best and most blatant reaction to my dress (boobs) happened when I was at the checkout spot. As the guy was ringing up my items, some other employee a few registers down took some people out trying to get to my lane, just to jump in front of my cashier to ask if I had a store rewards card. Swiping my card took $10 off the total, and then I blinked and another $15 came off the total after jumping jack flash waived some paper in front of the scan gun. “This is another coupon for you today.”

OK, so a few things. First of all, I feel like I’m playing out some forgotten scene from Beauty and Beast, because I’ve been in that Walgreens nothing short of 896 times in the last 7 years, and no one has ever offered me a discount that I didn’t ask for. In fact, half the time they can’t even get their shit straight enough to give me the discount that I actually inquire about.

Next – society clearly favors the beautiful (again: boobs).

I have some anxiety bringing this plan into the work-week, because I have a lot less control over my time since I spent the majority of my day on someone else’s clock. Mornings are really hard for me, and I usually feel accomplished if I get to my job with something other than pajamas on. To consider being “done-up” for the next 3 weeks feels daunting to say the least.

But maybe – just maybe – I’ll surprise myself.

xoB

Day 2 Blue Dress

 

Day 1 – Empower

As part of my 21-Day challenge to be more presentable in public, I will be documenting things that I’ve noticed that I might not have experienced if I hadn’t embarked on this journey.

Since I normally spend my weekends lounging around and recovering from the work-week, it took a lot of mental prompting to get me out of bed and into the shower. I slept late, watched some movies, and enjoyed some downtime with the dog.

But since I really care about moving forward with my plan, I pushed myself to follow-through, even if it was with a late start, because any progress is better than none.

I get a lot of anxiety at this point about bathing. I don’t even think it’s the actual act that scares me as much of the discomfort I feel just IMAGINING the act. When you are physically disabled, everyday things can feel really overwhelming. Taking off clothes, stepping over the side of the bathtub, turning on the water, lathering up the shampoo, rise, applying the conditioner. Shave, soap up, wash face, rinse conditioner. And that’s only the beginning. After that comes brushing through a full head of hair, eventually blowdrying, drying off, getting dressed, and if you’re feeling like a real champion – makeup.

I always really feel great after taking a nice long shower, and I have had a bench in the tub for the last 10 years (which is a total game-changer if you have issues standing). And while I initally thought, “OK, I can do this!”, I woke up this morning completely zonked after sleeping through a post-cleansing coma. This is also what contributes to me being hesitant to committing to plans, because before I even get to the event, I need to take a nap.

I knew that I wanted to go out into the world since my hair and makeup were done, so I put on a flowy (read: comfy) tiered, off-the-shoulder dress from Express that I bought to wear to my mother’s graduation in May. I loved it when I wore it back then, and honestly, if I hadn’t worn it yesterday, I might have watched it sit in my closet in a quasi-retirement until it didn’t fit me anymore or my style changed.

At about 8pm, I hopped in an Uber and went over to DSW. Because my feet are deformed, shoe shopping is usually a giant pain in the ass. But I figured it was late, and the store would likely be pretty empty, and it always feels better trying things on when you don’t NEED to find something for an event. I always seem to get luckier in that scenario.

As I mentioned in my original post about this challenge, there is a component for me that is interested in seeing if it’ll affect anything for me socially. But what I didn’t consider was that attraction doesn’t discriminate, and I ended up winning the attention from a woman who I can only guess was on a day-pass from the looney bin. Her process of introducing herself included asking me if I knew my dress was so long, and when I said, “yes…”, she said, “of course I know you know, but it’s dragging behind you and I want to know why.”

“Because I’m short. My dress is long and on the ground because I’m short.”

I don’t know if she expected me to melt into a ball of insecure tears or if she was hoping to get a lawsuit out of me after punching her in the face, but I sort of regret not resorting to one of those options, because my kindness and patience with her bizarre character resulted in her spending the next 20 minutes following me around and asking me to give her advice on the boots she was trying on.

After walking around for about an hour and a half, I left with a fun new pair of Keds (which are cool again, apparently, and at “cool again” prices…) that have the word “Empower” printed on top in rainbow colors. It’s a little particular for my taste, but given that I think I’m going to need an extra little shove each day to accomplish my 3-week goal, I thought that it wouldn’t hurt if my shoes were cheering me on.

Day 1 - Empower shoes

On my ride home, I was thinking about what, if anything, felt different on day 1. The first thing that came to mind was being able to smell Central Park, even if it was from a cab. The temperatures have been a little more mild recently, and though it was still kind of humid out, it was nice to drive home with all of the windows down, with my newly cleaned hair blowing in the wind.

It also occurred to me that I had written a blog post for the first time in about 9 months, had made use of my new desk that I’ve stocked with all of my nicely organized makeup, and noticed that my “comfy” clothes felt more comfortable than ever, when changing out of the dress I had been wearing all evening.

I have always felt that contrast is an important part of life. It’s why I believe I can tell when someone in the chronic illness community online isn’t being authentic about their experience, because anyone who has truly suffered the way that many us have, would also be able to appreciate much more than what I see being posted about each day.

To me, people who are not able to be grateful for basic things have not experienced pain or loss to the extent that makes them aware of how lucky they are when terrible things aren’t happening.

And with that, on to day 2!

xoBDay 1 Fkowy Dress

#sickpeopledoingthings™

January 12th, 2018, was a really normal day: wake up, go to work, look at the clock, panic, hail a cab, apply excessive pressure to the driver to fly over NYC skyscrapers to get me to my appointment on time, check-in (late) for said appointment, get vitals taken, and wait.

And wait.

Waiting is something that a lot of sick people do. We wait for test results, for medicine to kick in, for prescriptions to be ready, for someone to help us with whatever we need in that moment, and as in my case that day: we wait for the doctor to come into the exam room.

And while I waited under the familiar hum of the offensively bright overhead lights, intrigued by the blue accent wall in an otherwise cookie-cutter clinical quarantine, I decided to kick my feet up, since I already felt at home.

I was thinking about my job, about what time I’d be able to get back to my office, and out of the corner of my eye, I saw my shoes, elevated and crossed, one over the other: rose-gold pointy-toe work flats that I was proud to have found for $18 on Amazon.com, and it occurred to me: waiting is not the only thing sick people do.

Sick people have careers. Sick people get manicures. Sick people volunteer. Sick people walk their dogs. Sick people dance around the kitchen while making dinner. Sick people go to school. Sick people play music. Sick people clean. Sick people get married and have kids. Sick people travel. Sick people participate in sports. Sick people go to the movies. Sick people read books. Sick people WRITE books. Sick people overcome whatever they need to. I am sick people.

I am a sick person doing things.

As I’ve talked about in length on my Instagram account, it’s truly bizarre for me to see how the current chronically ill community behaves, with the introduction of social media. When I was a kid (it’s official, save me a seat at the buffet, I’ll bring my senior citizen discount…), technology was more or less used for the shit it was intended for. A phone’s purpose was to call people, computers were for typing up reports in a word processor, and televisions aired 22 episodes of a program that was properly spaced out throughout a season, which went from early September all the way through the end of May.

Summers were meant for playing outside. Imagine that.

With the undeniable growth of technology, we’ve gained a lot in the way of efficiency and access. But we’ve lost much of what makes living on this planet important and tolerable: the value of hard work, human interaction, and being able to communicate effectively altogether.

So it really shouldn’t be surprising to me that when I hop online and I view social media accounts for the “chronically ill”, I’m met with immaturity, co-dependence, competition, and frankly, a false representation of the community I know and am a part of.

Chronically ill people aren’t whiny. We aren’t passive-aggressive or malicious. We aren’t hyperbolic when we report symptoms, and actually, we tend to downplay and hide what we have going on, just to avoid being a burden. We are tough, and resilient, and we have goals that we’ll meet or die trying to meet. We don’t make excuses, but we also don’t glamorize what being sick is really like by overcompensating with peace-signs or a thumbs-up or muscle making from our hospital beds. We are a healthy balance of graceful and assertive; we know how to appreciate what we have because we’ve had less, and we know how to speak up because we’ve been invisible.

We can handle our own.

We might have moments of weakness, we might break down, we might cry, but in private. We know what it’s like to not be taken seriously, or worse, to be disregarded even when our full picture is understood. We don’t want to jeopardize that, and we won’t.

#sickpeopledoingthings is for the old school and new school, alike. It’s for those who learned how to live life before having to share it with people they don’t know, and it’s for those who have fallen down the rabbit hole of feeling like their illness is only real if they take pictures of it.

#sickpeopledoingthings is about highlighting us not being sick at all – not in a shameful way, but in a way that helps people become clear about the fact that, without shoving it down anyone’s throat overtly, we matter, and we are a force to be reckoned with.

#sickpeopledoingthings represents that while we are doing all of the things that the non-chronically ill people do, we are also superheroes who lead a double life. We are managing pain, coordinating our medical care, and mentally processing an extra layer of heavy shit that those without illness don’t have to consider. Except we aren’t Clark Kent in one place and Superman in another – we. are. both. all. the. time. We don’t get to choose when we want to be one or the other. It’s the thing that makes us suffer, but more importantly… it’s the thing that makes us great.

#sickpeopledoingthings is about the beauty that comes from those around us not needing to know of our dual identities. No one knew about Clark Kent’s alter ego, but it didn’t stop him from moving faster than a speeding bullet, did it? People getting a medical play-by-play doesn’t make our illness more real, and people not believing we are sick doesn’t make it less real. If anyone has a problem with that, that’s THEIR shit, that’s not OUR shit.

#sickpeopledingthings was created so we can start feeling motivated and empowered to live the lives we want to live. That doesn’t mean that we’ll do it the way it’s commonly done, and it doesn’t mean we won’t have to make modifications along the way. What it DOES mean, is that our strength will come from pushing past our illness, and not losing who we are in the process of dwelling on it.

A lot of people think that being inspirational happens when you simply intend to inspire, but that’s not even close. There’s nothing special about preaching to the choir. People are most inspired when they see others doing things that bring them joy, and doing it in the face of adversity. No one wants to hear us talking about the things we want to do, they want us to see us get up and do the things we want to do. They want to see that there’s hope for them in us.

#sickpeopledoingthings is not about posting about another visit to the clinic, or another blood draw, or another sob story about how being sick is holding us down. It’s also not about warrior poses and “raising awareness” and all of the ridiculous self-indulgent and misguided behavior that has infiltrated the internet. It’s about absolutely none of that, while being something in between.

We need to stop trying to inspire, and start being inspirational.

Go outside. Write in a journal. Make time for the people you love. Work hard. Earn the things you have. Explore your passions. Experience new things. Protect the things you’re grateful for. Draw. Help others.

Help yourself.

In the last 9 months, #sickpeopledoingthings has been used more than 1000 times, which means we now have an active record of the things we CAN do, not the things we can’t. Instead of freaking out the newly-diagnosed with over-the-top memes and selfies that scare them into being bedridden shut-ins, let’s use #sickpeopledoingthings as a roadmap of options to the dream(s) of their choosing.

Get that virtual degree. Start that business from your bed. Organize your closet when you can’t sleep at night. Rent a scooter on vacation. Start dictating that first novel. Get comfy with online shopping.

Be creative.

Chronic illness shouldn’t prevent you from thinking that your life matters or that it will amount to anything important. If you want to be more than your illness, take the steps necessary to say that proudly. If you want something bad enough, figure out a way to make it work for YOU. Be a sick person doing things.

Everybody has shit. This just happens to be ours.

xoB

@chronicmotivation

“With Passion.”

#sickpeopledoingthings est. 1/12/2018 by Becky aka @chronicmotivation

I am not the problem.

I am not someone who uses my disease as a “card.” And I am not someone who uses that card to feel entitled to special treatment. I believe, seemingly way more conservatively than many, that while certain accommodations are necessary for me, physically, I don’t feel my struggle is worse than someone with different problems that I’m lucky enough not to have.

With that said, on Tuesday night, I impulsively bought a ticket for a concert that was scheduled for the following evening. I do a lot of things impulsively (read: last minute) – mainly, I think, because I get so much anxiety about making plans too far in advance, in case I’m not well enough to attend when the actual date arrives. The concert was for a band that had been my favorite growing up, and I took it as a sign that less than 24-hours in advance, there were still seats available.

Many people who don’t face a life-consuming illness would think that was the end of the story. But for me, that’s where the stress began. Once the commitment to something has happened (especially commitment to something that I’ve paid money for), the planning process ensues. Thinking about navigating through the next day, I took a shower before bed, picked out an outfit that I could go from day to night with easily, put all of my potentially needed medications in my travel pill case, and planned to leave some things at work, so I wouldn’t have to carry them in tow.

I woke up feeling proud of myself. Proud to have challenged myself to step outside of my comfort zone, and proud that I put myself in a situation of readiness, so my anxiety, (while still present), wouldn’t completely overshadow my interest in going to the event at all. And as usual, as the day went on, I started having doubts, taking the cold weather into consideration, and the fact that yesterday was also my long day at work (a 10+ hour shift), but I swatted those thoughts away, reassuring myself that I had done my part.

So as the sky started getting dark, and my day was winding down, I started to feel like maybe I didn’t have to leave anything behind. Perhaps, if I consolidated my things well enough, I could bring everything with me to the concert and go home knowing I wasn’t without anything I might need. Innocently (read: stupidly), I went to the venue’s website to see if I could bring in my lunch bag. And as I scrolled to the bottom of the page, my heart sank when I landed on the following statement:

“No Drugs or Paraphernalia. (Prescriptions Drugs will not be allowed into the venue unless they are in a prescription bottle. The ID of the person holding the prescription must match the name on the bottle).”

First of all, let’s address the fact that “Drugs and Paraphernalia” are not the same as “prescription drugs”, nor is the connotation attached.

When thinking of the casual usage of “drugs”, especially next to the term, “paraphernalia”, we automatically think of something negative – drug addicts, drug abusers, and drugs that are illegal, used illegally, and possessed by someone who obtained them in a less than honorable way. However, when discussing prescriptions, or “prescription drugs”, as it’s stated on the website, the definition already explains that the drug is on a person who was prescribed to take them. And not just anyone can prescribe “prescription drugs.” Dog walkers can’t prescribe drugs. Bus drivers can’t prescribe drugs. Nor can circus clowns, accountants, or the girl who cuts your hair. Only a licensed medical professional is able to prescribe “prescription drugs”, which means there must be a good reason for doing so, other than “the patient wants to smuggle something into a concert venue.” Someone carrying prescription medications did not do anything wrong.

Next, let’s discuss the fact that I decided to be pro-active, because I was afraid I wouldn’t get into the show, and called the box office directly to ask about this “policy.” (I put policy in quotes, because I think it’s really nothing less than a scare-tactic, which I’ll explain later…). When talking to the numbnuts who answered the phone, he reiterated that the “policy” was true, and that it was enforced. After I explained that I am chronically ill, take many prescription medications every day to function, and that I don’t carry around 11 orange and white bottles to go with it because I’d need a sidecar to do so, the guy continued to repeat that the “policy” had no exceptions.

Because I’m me, I pushed back, which made the guy on the phone go talk to security. When he got back on the phone, the story was the same, except for the fact that now I was being told that I would “not be admitted into the concert with ANY pills on my person.” Woah, woah, woah. “‘Any’ pills?”, I asked? “Do you have doctors searching people at the entrance to the theater? Because I’m curious about how your security guards are qualified to determine whether or not the medications I’m carrying are over-the-counter or prescription.”

The guy on the phone continued to say, on repeat, “you will not be allowed into the theater with any pills that aren’t in a prescription bottle.” When I asked why it specified “prescription” on the website and if people carrying Tylenol were being sent away, he knew he had screwed up, and his method of avoiding it was to just stay committed to the phrase he had been using.

So I asked for my money back. I told the guy that I don’t ever use my medical condition as a button to push, but in this moment, I felt that I was being discriminated against, because nowhere during the ticket-purchasing process was I informed of this “policy.” The guy tried to defend this by saying it is “clearly” stated on the website, to which I replied, “when’s the last time you bought tickets for a concert and decided for ‘funzies’ to get check out the ‘Frequently Asked Questions’ page? Also, I think it’s also probably very unlikely that someone who was carrying illegal drugs would call the music venue to ask for permission to bring them in.”

I’m just saying.

I continued to offer solutions, like bringing a copy of my medical records, or better yet, going to the pharmacy and getting printed proof for the prescriptions I was carrying. No dice for any of it. And obviously, I was told that they would not refund my ticket, so I got off the phone because I knew I wasn’t going to get through to this asshat.

Now, I’m staring at the clock, trying to figure out if I’ll be able to get home in time to get the pill bottle(s) and get back to the concert, and considering if it would even matter. “Would I feel safe enough to bring NO medications with me?” No. “Do I need more than one medication?” Yes. “Do I need to take a pill bottle for each RX?” Who the fuck knows? “If I decide to go the safe route and bring several bottles with me, will my bag then be too big to bring in without checking it, ultimately losing my access to my meds, anyway?” Probably.

As a last ditch effort, I called my regular Pharmacy and spoke to a Pharmacist that has been helping me for years. He felt badly about the situation, and even said that if I was closer to his store, he’d have made me a prescription bottle with my name on it to throw my pills into, but unfortunately, the store is on the block I live on, so I figured I might as well go get the real ones at that point.

After deciding that I wasn’t going to lose this fight (meaning, I was still going to go to the concert), I hauled my ass home in a cab (which I shouldn’t have had to pay for), quickly decided to take one pill bottle and risk throwing multiple meds in, changed my clothes, and ended up having to take the subway back to Times Square, because I knew I’d never make it in rush hour traffic. I rarely take the subway because of all of the walking/standing/stairs, but as a physically disabled person, I was unnecessarily inconvenienced further, because our country has no way to monitor the abuse of narcotics.

After trekking across the city underground, I ended up just barely getting to the concert on time, and when I showed up and told security that I couldn’t stand on the line waiting to enter, they moved me right in, which was helpful.

But this is where my issue got real.

I was taken through the red ropes to bypass the queue, and before entering the building, they asked that I show them my bag. (This was it. This was what the previous two hours would amount to.) I stood there, so pumped and so ready for them to see the medication bottle and to confirm that it was my name on the label. But as I expected, the man doing the check only opened one of the two zippered sections (the one that didn’t have my medication in it…), pointed his flashlight on the top of my purse, and said, “Have a good night.” I could have had a bag of weed or a handgun in my bag and they would have let me through.

And this is why I’m frustrated. Not only did I figure that the “policy” on the website was garbage, I was repeatedly told on the phone that I “would not be admitted in without the appropriate proof” of medications I need to function. I was able to walk up to a security guard and ask to cut a whole line of people without showing proof, so why in the world should I be questioned about pills in a pill case?

Do I understand that there is an opioid epidemic? Of course.

But I am not the problem.

A few years ago, when they started cracking down on the narcotic prescriptions, it was a horrible adjustment period for the chronically ill. My specialists no longer wanted to manage my pain, because they feared being audited by the FDA. I had to start seeing a pain-management specialist, which was another copay from my wallet.

When it came to actually filling my prescription, many drug companies pulled way back in the production of these medications, so I spent hours calling a bunch of different pharmacies in New York to see if they had the pain medication I was prescribed. To make matters worse, I often wasn’t able to get accurate information on these calls, because pharmacists would either give me shit for calling about a narcotic over the phone (making me seem like a drug seeker, because in that moment, I guess I technically was), or they would lie and say they didn’t have it because they didn’t feel comfortable giving out that information. As a physically disabled person, I had to run all over Manhattan, walking in and out of storefronts, showing them that I had the paper prescription (to prove that I was legit), and question whether or not they had enough to fill the script. The anxiety I would get every month was absolutely absurd.

When they mandated that controlled substance RXs could only be sent to pharmacies electronically, my anxiety about this heightened, because at least if I had the physical prescription and the pharmacy didn’t have the medication, I could go somewhere else. However, if an electronic prescription is sent to a pharmacy and they don’t have the drug, they can’t transfer the prescription anywhere else because it’s a controlled substance. You have to then go back to your doctor and beg him/her to send it to a different location.

It’s a viscous, viscous process.

So my final question is this: At what point will it be enough for me to just be sick? To have to wake up in pain every day? For me to have to figure out how to be a contributing member of society, working full-time in an effort to keep my medical insurance and pay for all of my medical bills, while also juggling several doctors’ appointments each week and acute issues that come up, like visits to the ER or recovering from monthly infusions? When will it be enough that I have to plan every second of every day unless I want to face failure? And plan it to the point where it often overshadows any fun I could possibly have, and often makes me not commit to anything at all?

Why, on top of my horrible misfortune, should I have to do a song and dance because people are abusing the system? I’ve always been transparent about my illness and I am never defensive about proving that I’m sick, because I have plenty to provide in the way of clinical documentation since I’m ACTUALLY sick. But when I get up the courage to commit to an event, spending money I should be spending on medical expenses, and then have to be put out and basically treated guilty until proven innocent for a disease that I am just trying to navigate through, it’s frankly, bullshit.

As a manager, I always tell staff and coworkers that if you have a problem, you should come to the table with a resolve. So I propose that maybe we create some kind of ID card or wristband system that says that we are diagnosed with an illness that requires us the following:

  • prescription meds
  • narcotics (if necessary)
  • accommodations (a seat, low lighting, dietary specifications, etc.)

We have handicap tags for the cars we drive, why can’t we have something on our person to do the same function? I don’t care if I have to hang a huge sign from my freaking ponytail; we just need to find a way to address the issue without harming those who are already suffering.

I am not the problem.

 

 

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.

 

 

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?