#sickpeopledoingthings™

October 24, 2018February 27, 2021 ~ Becky ~ Leave a comment

January 12th, 2018, was a typical day in my world: wake up, go to work, anxiously manage my time, (panic), hail a cab, apply unwarranted pressure on the driver to scale sidewalks, barrel into my rheumatologist’s office like a bat out of hell, get vitals taken, and wait.

And wait.

Waiting is practically a prerequisite to being a sick person. 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 a given moment, and as in my case that day: we wait for doctors to grace us with their presence in exam rooms.

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, 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 sick people 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 members of the chronically ill community behave once they are introduced to social media. When I was a kid (it’s official, save me a seat at the buffet, I’ll bring my senior citizen discount…), electronic devices were more-or-less used for the shit they were intended for. A phone’s purpose was to call people, computers were for typing up documents, and televisions aired 25 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.

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 content procured by the “chronically ill”, I’m met with a narrative that grossly misrepresents that which defines me.

Generally speaking, 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 minimize 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 warrior poses. We are a healthy balance of grace and assertion; we know how to appreciate what we have because we’ve had less, and we know how to speak up because we’ve been played-down.

We can handle our own.

Moments of vulnerability are few and far between, because we cannot allow ourselves to be perceived as weak or incapable. We’ve been ignored, or worse, disregarded, even when our full picture is “understood.” We don’t want to jeopardize our care, so we’ll stifle tough emotions so we don’t get labeled as difficult.

#sickpeopledoingthings is about highlighting the parts of our existence that don’t directly correspond with our illness – not in a shameful way, but in a way that helps people become clear about the fact that we matter, and we are a force to be reckoned with.

#sickpeopledoingthings represents the dichotomy of a circumstance we can’t control: that while we are going through the motions of an everyday existence on the outside, 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 strong.

#sickpeopledoingthings is about the beauty that comes from those around us not needing to know of our dual identity. Offering others a medical play-by-play doesn’t make our illnesses more real, and people not believing we are sick doesn’t make them less real. If anyone has a problem with that, that’s THEIR shit, that’s not OUR shit.

We are not to waste time proving anything. To anyone. Ever.

#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, however, is that our victories 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 back. It’s also not about warrior poses and invasive awareness raising 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. Find joy in little moments. 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.

December 2, 2017December 2, 2017 ~ Becky ~ 2 Comments

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.

Dear God

June 17, 2016 ~ Becky ~ Leave a comment

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.

Chronic Motivation

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I am not the problem.

Dear God