P is for Privilege.

April 17, 2020March 16, 2021 ~ Becky ~ 2 Comments

In 2007, I was a 22-year-old college senior in “way-the-hell-upstate” New York. I was about to graduate school with a dual degree in Music Business and Mass Communication, lived in the residence halls all four years, had lots of friends, and I was registered through Student Disability Services because of my autoimmune disease and my disabled status.

I went to parties, cured hangovers with way too much Domino’s pizza, was a well-known campus drummer, and had several jobs. I also took steroids every day, became unnaturally acquainted with local and not-so-local emergency rooms, and was injecting myself with prescription drugs in my dorm room just so I could function.

I was always transparent about my illness, and I tried desperately to never let it hold me back from accomplishments in life that were important to me. Yet while I was doing the “right” things during the semester, informing teachers of physical limitations, dragging my arthritis-ridden ass through several feet of snow, and studying like a maniac to compensate for any time lost in the classroom, I received a C in Broadcast Journalism, only because I was unable to attend all of the lectures.

It’s something that burned my ass back then, and still burns my ass now, because I had As on all projects and tests, and I was open with the professor about my health. My grade was knocked down 2 letters. And 13 years later, because of a pandemic, the same school that reduced my score for not being well enough to show up in-person has determined that students will finish out the rest of the school-year online.

Will they get Cs, too?

I wish I could say that this is the only example of societal injustice that I’ve noticed during our current health outbreak, but it really only scratches the surface.

The whole idea that the world is losing its mind is based mostly on fear, but the result is self-fulfilling. And the idea that our society has allowed this to occur and has completely overlooked the impact on people with disabilities and/or people with underlying conditions really shows how out-of-touch we are. People who are able-bodied or otherwise healthy have gone scorched-earth on their own luxurious resources, and when shit got rough, they laid a massive dump on a lesser convenient version of their lives, (read: our lives), and managed to botch that up as well.

For example, I am not someone who just casually uses delivery services; I rely on them. So when people who are at a relatively low-risk are abusing the only systems in place that disabled people actually depend on for survival, it’s ableism for the ages. Because not only can we not just start physically hunting around the supermarket for toilet paper like the rest of America’s cavemen, many of us ARE the actual high-risk population that shouldn’t be going into a packed grocery store to begin with.

For as long as I can remember, as a person in the workforce who is physically disabled, immunocompromised, and medicinally immunosuppressed, I have spoken out emphatically on social media and in my blogs about how absurd and archaic it is that I have always had to physically go into an office every day. I work in the medical field, but there have been plenty of times during my career where I could have done my job from the moon if I needed to. There were also many times that I called patients from my bed while recovering from surgery or when I wasn’t feeling well, simply because I cared, and more pointedly – because I could. I always had to use “sick” time in these scenarios, but I found it to be strange that the basis for not being allowed to work-from-home was virtually (no pun intended…) non-existent. The accommodation was never actually considered, and it wasn’t even determined on the actual fact that it couldn’t be done remotely, given the actual fact that I was actually factually doing it… from home.

As time went on, I had managers that started off as supportive, and then when they realized that I had very little control over how my genetic disorder ravages through my body, it became inconvenient… for them. I’ve had supervisors tell me that I should consider a different career, and even one who told me I would never be promoted because “you need to be here to do the job.”

Planet Earth, Q1, 2020: “Hold my beer.”

When you flash-forward to the present day, where we are in the middle of a global crisis, all of a sudden the opposite is proving to be true. Thousands of businesses all over the world have not only figured out how to shift their brick-and-mortar operation to a laptop-in-my-underwear arrangement, they’ve also determined that it is necessary to do so, for the health and safety of their employees.

Yep. You read that right. When I have pleaded in the past for the “health and safety” of my own medical circumstance, I was ignored, and frankly, treated like a burden. But now, for the “health and safety” of their employees, thousands of companies proactively flipped their entire business models on their heads. People like me have been fighting the status quo and the stigmas surrounding being a sick employee for my entire adult life, and while I have been penalized for showing up late to work because I wake up most days unable to walk, able-bodied employees are now being MANDATED to not show up at all.

But what about those of us who are permanently sick? Sans the high-risk population who will be hospitalized or perish, the outbreak, at its’ worst, will inconvenience peoples’ lives for a temporary period of time. Emhpasis on temporary. Some of the group will be carriers without symptom, and many of the rest who do end up feeling traditionally ill will recover and be just fine. That is hardly the same thing as waking up ::every day:: and dealing with the physical, emotional, mental, and financial struggles that people who are chronically ill face without resolve.

When it comes to the procedural 180 degree turn, it’s hard to ignore how dramatically things have shifted, like the fact that I keep hearing from people all over the place that it’s “unfair” that they have to pay for car service because they don’t feel safe taking the subway. While a warranted fear, it’s also a privilege for it to be a choice. As someone who is physically disabled, skipping public transportation is something stopped being a choice for me a few years ago when my health rapidly declined. I pay NYC taxes like everyone else, but I also pay about $1,000 a month in Uber fares just to get to and from my Park Avenue post. And yet now, while I’m working from home and not needing cabs every day, ride share companies have suddenly implemented discounted transportation programs for healthcare workers who, ironically, are physically able to take the transportation available to them.

Why is it that when the majority of the world wasn’t needing this resource, spending 20% of my paycheck to commute wasn’t ringing any alarm bells, but now that a lot of people are feeling helpless, it’s making the nightly news?

I’ve also seen several instances of organizations and fundraisers putting aside money for employees who contract the virus and can’t afford to be out of work. I found this to be a really great societal moment, but I also couldn’t help but think about all of the times I’ve gone without pay because I’ve been hospitalized, or because I’ve had to recover from monthly chemo infusions. As I’ve mentioned in previous blog posts, most employees are allotted sick time each year. But while our culture understands that people get sick and get better, we seemingly haven’t figured out how to give a shit about those of us who get sick and get sicker. This is a hard truth to digest for many of us, when our allotted time banks disappear, but our ailments unfortunately don’t.

Circumstances surrounding Rx refills have changed as well. When I’ve needed pain medication in the past, my pharmacy strictly adhered to an internal (read: unecessary) policy that limited me to specifically pick up my meds on the last day of the prescription. In order to be available, I’ve had to change shifts at work, leave my mother’s comatose hospital bed to travel back to the city, and just a few short months ago, in order to be with my family on Christmas, my pharmacy forced my doctor to send a letter releasing my medication 2 days early since they were closed on my normal refill day due to the holiday.

But as a result of the pandemic, the medicine that I rely on to function is now available 5 days before the end of the script, no holds barred. How is it possible that I have been shamed and treated like a drug dealer every single month for years, and now, the rules are relaxed overnight, almost as if they were completely arbitrary in the first place. (See what I did there?)

**Update from March 15, 2021 – this only lasted for 2 months. It’s important to note that my pharmacy seemingly did not put the aforementioned system in place to help patients during a pandemic at all, but rather did this in error and punished me for their mistake. Making matters worse, they then refused to work with me during the pandemic, forcing me to physically come into the store to pick up this prescription on weekends since they only do deliveries during the week and would not change my refill date to accomodate my need to avoid public settings.

Sick people need medications and often have to jump through hoops to get them. Do you know who doesn’t? Otherwise healthy people who are now the reason these restrictions are being lifted. Which is ironic in its own right, since the change was implemented solely to give peace of mind to those who are afraid of getting as sick as those of us already living the life everyone is freaking out about.

In a short month, we’ve moved quickly from businesses offering simple, low-level niceties to a robust carte blanche list of accommodations that, frankly, make me want to bash my head against the wall. It’s wonderful to see that these things are happening of course, but our country’s baseline of inaction and lack of compassion for those who experience medical hell on a full-time basis makes me have absolutely no faith that this sentiment will continue after we’re able to resume our lives as usual.*

(*”As usual” = society going back to treating the chronically ill like we “earned” our circumstance, suspiciously soon after accommodations were made globally for those who didn’t “earn” this one.)

In addition to the early steps taken at the beginning of March, we have since seen our entire healthcare system overhauled to a telehealth setup, while the physically unwell and disabled have had to previously rely on family and friends, public transportation, costly car services, or complicated state programs to get to and from appointments (usually to sit for 2 hours in the waiting room, just to see the doctor for 3 and a half minutes). Now, to have a visit with a clinician, all anyone has to do is pause the Price is Right, and from the comfort of their own beds, “meet” with their doctors with the least amount of physical stress imaginable. Again, this is mind-blowing to me when I think about how I’ve had to juggle my professional career, working full-time as a sick person, anxiously running back and forth to medical appointments multiple times a week, while trying to avoid being known for THAT vs. known for the job I do well. This is especially offensive, since the majority of the people this virtual resource benefits are those who don’t have any physical limitations in the first place. And those of us who have always had physical limitations couldn’t get access to anything even remotely close to this standard, before the physically well felt entitled to it.

Now if you think we’re off to a rough start, buckle up. Some of the more recent additions to this list may be the most unsettling of them all.

Have any of you ever been discharged from an unexpected week-long admission to the hospital, only to be welcomed home by an eviction notice on your door? Spoiler alert: I have. I don’t need to tell sick people this, but even with health insurance and a decent salary, medical bills and health-related expenses can totally obliterate a person’s financial stability. However, if you live in the country’s virus epicenter like I do, there is a 90-day moratorium on evictions as a result of the pandemic. So even though I’ve struggled because of a health problem I already have, there was zero protection for me (other than a gracious landlord). But now that many are struggling and facing a potential risk vs. the hardship I face every day, help is on the way (dear).

And student loans are no different. I have been paying off my graduate education for a third of my life, and I’ll likely be paying it long after I’m dead. As my health has fluctuated, I’ve had to resort to whatever I could just to stay afloat. Sometimes that meant lowering the monthly payments, and other times it meant serious anxiety-driven denial and dodging calls from the lenders altogether. What it’s never meant, however, was last week’s experience, getting a heartwarming call from the debt hunters, asking if I’m OK as a NYC resident, and my account automatically transitioning into an indefinite forbearance status without the penalty of interest accruals. When I have called in the past and inquired about my options, I’ve been asked 45 questions surrounding my medical circumstance, which never matters anyway after my salary is disclosed. And now, just existing in the state that is being pummeled was the event deemed deserving of aid vs. my lifelong debilitating illness that will be with me long after this moment in history has passed.

I would also be remiss if I skipped over the hypocritical behavior of all of the people, especially during the presidential campaign season, who outwardly spoke negatively of anyone in society needing help, like those on welfare or receiving unemployment benefits. It’s those exact critics who have supported our current administration in the reduction or elimination of those programs (even if unknowingly), who were also the exact people who were not exempt of the financial fallout from the pandemic. Better yet, these people were SO not opposed to these programs as a whole that they contributed to websites crashing when they needed to apply for assistance after their jobs were lost with the rest. I definitely don’t want to make this post political, nor do I want to have a heavy hand in condemning the oversight of those who couldn’t relate until now, but it is my sincere hope that experiencing hardship first-hand will help American citizens be more compassionate in the future.

Speaking of financial resources, in spite of all of my extra medical expenses, I am one of many who doesn’t even qualify for the stimulus check, because according to the parameters (2 questions…), I make too much money (which is honestly way less egregious than disabled dependants who won’t get a check because of their physical inability to work… ). I am so grateful to still be getting a paycheck, and as long as that continues, I should be OK. But how short-sighted is our government that they only consider your marital status and a salary reported in 2018? What about all of the people who filed their tax returns on time last month who lost their jobs this week? Or how about those like myself, who, in addition to excessive medical bills, spend thousands upon thousands on health-related expenses, that somehow never get counted when it matters? The latter expense alone is 87% higher than my peers who pay $127 a month for an unlimited metro card, and I definitely don’t make 87% more than someone who got their check this week.

It’s truly unbelievable to have all of these resources suddenly available to me after years of some serious self-advocacy. But it also really reiterates my earlier point, that our society treats chronically ill people like our health is a circumstance we can control, and it treats people who are sick who will get better (or die quickly…) as victims of a circumstance that was unforeseeable. It’s basically the difference between believing a sick person happens to society vs. understanding that the sickness happens a person.

Our country is so good at discrimination that we even assign different kinds of sick people different kinds of credit.

You might find it interesting that I wrote the shell of this blog post the week of March 9th, which was the last week I was leaving my house to go to work, or for anything, really. I held off on publishing it, mainly because things spiraled so quickly in NYC that my anxiety prevented me from being able to process my reality (and also, because the original post admittedly didn’t age well). But I am sad to say that in only 3 weeks’ time, I felt I had to come back and finalize my thoughts, before people are far enough away from the impact that they are no longer in a place to receive them.

Unlike ever before, we are currently living in a society whose sole developing interest has been to help people who have been (or might at some point be…) uncomfortable for 5 minutes. And what that really means is that the perspective of being a sick person is so horrifying, that healthy people will do just about anything to prevent it from happening to them. This isn’t really brand new information, but this is the first time in recent history that we will all be on the same page about this notion, and unfortunately, once the imminent threat is gone, the sentiment will no longer be shared.

So if you are reading this, and you are someone who is simply counting down the days until your life returns to “normal”, I ask you to consider this: there is no countdown for a lot of us, and our “normal” is still pretty fucked-up. Need proof? Our “normal” is your quarantine. The fear that you are feeling right now about the unknown is a constant in the lives of those who are chronically ill, and when we run into financial or physical barriers, there are no pauses in what society expects of us. In fact, it pretty much becomes the opposite.

When this pandemic is all said and done, and you are able to go back to work every day, consider your employee, who still Needs to telecommute, the way that you did so you could keep doing your job in the midst of a medical crisis. Consider your neighbor, who still wears masks after her treatments for her rare disease, like you did so you could keep yourself safe from infection. Consider your tenant, who will still struggle to pay rent after The Care Act is no longer in effect, the way that you struggled to pay rent when your job was furloughed. Consider your family member, who is not well enough to attend special events or holidays, the same way you were unable to be with your family during Passover Seder or when you had to get married in a desolate field without your loved ones over Zoom.

Consider how lonely you’ve felt being contained in your home, and that the regularly homebound people feel LESS alone during the pandemic because everyone else is finally in the same situation we are always in. Consider that, when the world came crashing down and you needed help, you received it, quickly, simply because so many people could understand your pain. Consider that, when you had to be safe, there were solutions, and prompt ones at that.

What if this situation we all find ourselves in only happened to you? What if your job didn’t send you home when the death toll skyrocketed in your city? What if you were the only one in your office with a compromised immune system, and you were told you weren’t allowed to wear a mask, or that you had to use your vacation time to keep yourself safe? What if you were furloughed, or worse, lost your job, and your bills were still expected to get paid? What if the virus prevented only YOU from missing springtime holidays with your family or events that had been planned for a year? What if when it wasn’t safe for you to go into the grocery store, you had no way to get food?

Would you have been able to get through this nightmare… alone? Without other people truly being able to comprehend what it was like to experience this first-hand? Without compassion and accommodation and camaraderie? Without millions of people cheering collectively each night, in order to recharge your morale?

What if this experience we’re in was uniquely specific to you, and rather than everyone else on the planet understanding what you’re going through, you were judged, left behind, called flaky, or blamed for this life?

Since it seems like humanity is only humane when our immediate privileges are threatened, I hope with all hope that now is the time when people will be able to empathize with the fact that it’s not a “what if?” for many of us. It’s our reality. And we have to fight to make sure that when society resumes “business as usual”, we take the time to remember how unusual our “business” has been.

Consider that.

xoB

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

January 23, 2020January 24, 2020 ~ Becky ~ Leave a comment

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

Dear, Lexi

October 21, 2019October 22, 2019 ~ Becky ~ 6 Comments

Have you ever been nervous to meet a 6-year-old? It must sound absurd, especially coming from someone who is 34. But on August 26th of this year, I got the first-date jitters thinking about meeting Lexi Townsin, who as of that evening, was the first person I had ever met with Blau Syndrome.

“Will she like me?” “Will she be confused that her parents are excited to meet a stranger in NYC?” “Will she understand why meeting her will change my life?”

I often joke that kids tend to gravitate towards me, because at a “towering” 4’10”, they usually think I’m one of them. I’m immediately accepted into their world because we can have conversations at eye-level. And while meeting Lexi was a breath of fresh air because of how radiant she was, she was onto me. She knew I wasn’t a kid – not because of some unnatural intuition, but because she wasn’t completely a kid, either.

When I was growing up, my cousins used to make fun of me, because at family gatherings, rather than playing tag or Barbies, they would find me sitting with “the adults”, propped up next to my aunts and uncles, having conversations about life as though I had already lived it. But when you’re born with an incredibly rare disease like Blau Syndrome, you, for better or for worse, have already lived it… and a lot of it.

It would be impossible to suggest otherwise. When you have to experience adult-like scenarios like swallowing pills, taking eye drops, getting poked and prodded, going to countless doctors’ appointments, and waking up in the middle of the night for a special pancake breakfast because you have to fast for a hospital procedure, it almost makes more sense when a sick child reaches greatness earlier than most.

And Lexi surely did. Anyone that knew her was so fortunate to have been blessed with that gift. I only had the opportunity to spend a few short hours being captivated by her personality in-person, but since she overflowed with wit and sass, I left our meeting feeling lighter. She made me laugh. She knew the sweet look she could flash her parents when she wanted a meal they knew she wouldn’t be able to finish, which was proven as I watched her father snack on a larger-than-life portion of fish and chips while I spoke with them about all of the great work they’ve done for the diagnosis I shared with their daughter.

Most importantly, she had a voice. And not just the voice that knows how to speak up when something isn’t right, or that charms passersby on the sidewalk, selling lemonade for the foundation her parents created out of devotion to their child – she was also vulnerable, and kind, and knew how to express herself when she was scared, or in pain, or tired. She had learned so many hardships about life at such a young age, that it’s a wonder she had any joy left in her at all.

But that’s what speaks to Lexi’s spirit. Even though so much of who she was can be attributed to how she was raised by her amazing parents, it was always so evident that they felt they were the lucky ones, having a daughter whose laugh scared the clouds away each day. I think it’s pretty common to see siblings fight, especially at the ages that Lexi and her older brother, Felix were. But witnessing their bond, again, showed that her affect transcended any social norms that could be assumed of a 6 year-old.

After meeting Lexi, I had envisioned my future relationship with her. I pictured international phone calls when she was struggling to adjust, or confused about dating, or if she simply needed an ear when she had any concerns about life that I would have hopefully figured out by the time of her asking. I wanted to give her the understanding that I so desperately could have used at her age, and frankly, could use now. But most of all, I was excited to watch her grow. I decided that if someone so young was already such a bright light, how lucky the world would be to have her in it.

And it was.

Even though it’s an understatement to say that Lexi’s time on this earth was cut short pre-maturely, it’s pretty unbelievable to think about how many people felt who she was, even just by watching her videos. Social media can be a sterile place, but somehow, Lexi managed to break that barrier as well, with her touching attempts to raise awareness surrounding her circumstance.

I’m not sure why I’ve been afforded the opportunity to be granted more physical years than Lexi, and as I sit here, living with the same medical condition plaguing my body, the anger, and disappointment, and true heartbreak are overwhelming. During a time where not much makes sense in my life, she did. In a quick encounter a mile away from my apartment on a routine weeknight after work, she helped me understand why people don’t generally see my physical deformities the way I once saw them, and for the first time in a long time, I didn’t feel so alone.

It’s hard to reconcile why something so terrible had to happen to someone so special. Maybe we won’t. And I’ll refrain from saying the cliché thing, about how we can “learn” from Lexi’s passing, because I’m not yet in a place to accept that this is our reality, or that there is anything we can possibly gain from her absence that is of greater value than being able to get more time.

What I can say, however, is that for reasons that I’ll probably never know, I am still here, and I am still fighting this unfortunate illness, and I will do everything in my power to continue to forge ahead with the grace, and warmth, and valor that Lexi applied to her courageous daily fight being a patient with Blau Syndrome. And now, as I’m writing this from the “comfort” of a familiar Rheumatology waiting room, I’m thinking of Lexi. And even though the hole in my heart is great, I can picture her toothy grin cheering us on from wherever she is, and reminding us that while it might be difficult right now, tomorrow is only a day away.

xoB

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

August 20, 2019August 20, 2019 ~ Becky ~ Leave a comment

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.

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.

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 2 – Summer Feet.

August 19, 2019August 19, 2019 ~ Becky ~ 2 Comments

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.

(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 1 – Empower

August 18, 2019August 18, 2019 ~ Becky ~ 2 Comments

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.

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!

xoB

21-Day “Beauty-Binge”

August 17, 2019August 17, 2019 ~ Becky ~ 2 Comments

I haven’t felt like myself for a very long time. In fact, I’m not even sure anymore of what my “self” looks like at it’s core. There are pieces of me that have stayed intact because they are so crucial to my existence, like compassion and intrigue, but the rest just sort of feels like it’s been on auto-pilot.

A lot about being a sick person is doing things every day that you don’t physically and mentally feel like doing. It’s getting out of bed, bathing, contributing to society in some way (going to work or school, for example…), and it’s checking off items on a list that prevent you from failing at life completely. Do laundry. Pay rent. Feed the dog. Feed yourself. Even typing this out feels monotonous. And what I’ve learned is that you can go into a downward spiral quickly if you aren’t aware of how unintentional your habits have become.

When you are chronically ill, and these things that you don’t feel like doing still have to be done, there is a lot of energy that gets used just accomplishing these and other basic tasks. I have always had a theory that it takes more energy to do the things we don’t want to/feel like doing than things we want to do, because we also have to compensate for the lack of motivation that exists when a general interest or desire isn’t present to push you. So when we’re just getting by, and we’re trying to make it through each day, what happens to all of the expendible activities that we simply don’t have the energy to accomplish?

What happens to our joy?

It’s sad, but because I live alone in NYC, I very much depend on going to work each day so I can support myself. I don’t think that this is a different fact than other people who have to work to survive, but other people aren’t completely depleted just getting ready in the morning. For me, there are many days when I have to pick between going to work and taking a shower. Other people might argue that both are non-negotiable, but if you know that after you’ve hit a certain wall that nothing else will be possible, you have to prioritize the things that will immediately cause big problems, and that might come at the expense of things that seem unfathomable to put off.

So then as your health declines, you start to become a robot in a sense. You start to feel like everything is a race against time, trying to get the bare minimum done before your body closes shop for the day. And when you’re living in that mentality – survival mode or bust – it feels like anything “off the list” so to speak, feels like a luxury. It starts to feel like the things that you once loved are very much out of reach, as long as you want to stay afloat in the areas that truly require your attention.

But that’s no way to live your life, when there’s no “living” involved.

I have always had a pretty extreme personality. I’m usually either completely invested in something or it practically doesn’t exist. So when I started to go down this path of maximizing my time, other things were sacrificed that I couldn’t have anticipated in the very beginning. You figure that small things can be skipped, but small things add up.

So with that said, I decided I’m going to spend the next 3 weeks tackling a small piece of the puzzle. I’ve heard many times through the years that it takes 21 days to make or break a habit, so I will be spending that many days assigning some time to doing my hair, doing my makeup, and putting together an outfit that makes me excited to walk outside my front door. I want to feel put together. I want to feel approachable. I want to feel worthy of being seen.

At first pass, it might seem that this is a superficial challenge that I have set my eyes on. However, I think there is a lot to be said for how we present ourselves to others. I don’t think that a full face or big hair is the reason others should value us, but if we aren’t putting any effort into how we look every day, it could be perceived by others that we don’t value ourselves. And if we send the message that we don’t value ourselves, how can we expect others to think we have value?

This is basically a social experiment.

We have clothes in our closet that we reserve for special occasions – I would like each day in the coming weeks to be special. I also am interested to see if my committment to something so basic trickles into other aspects of my life – will I be encouraged to try new things, or be more social, or get to work on time, simply because looking nice on the outside makes me feel better on the inside?

I will be journaling about my experience and will be tracking things that are seemingly unrelated (i.e. my weight) – because my gut tells me that deciding to make my appearance a priority will open up new doors an opportunities for me, even if they are only benefits that I am able to see.

This mission that I am about to embark on is not about other people. It’s not about being attractive, and it’s not about pretending like I’m not sick every day. In a way, it might remind others that even though I am sick every day, I’m worth spending time on. With this journey, my goals are pretty simple. I intend to live with intention. I want to find purpose on purpose. And I want to teach myself and others that I deserve to be loved by first loving myself.

Ultimately, there is absolutely nothing that I can lose by doing this. All I know is that I have no idea what else I’m supposed to do, other than to fake it until I make it. It’s a notion that I’ve tried in the past and in my recollection, has had a pretty high success rate. Also, I think it’s important to mention that for me, even though it will be physically daunting to accomplish this level of vanity, this is something that I’m actually interested in doing. I think it’s fun to play with makeup. I love my hair. And I also appreciate fashion. The only thing that I have left to do at this point is to do these things that I actually enjoy.

If other people are inspired by this and are feeling a bit lost in life like me, I hope it’s also understood that this is MY version of a “beauty binge.” I am not trying to perpetuate the idea that women are only beautiful if we have makeup on or that we have to be an “enhanced” version of ourselves to be valued in society. Beauty to someone else might mean drinking a ton of water to promote glowy skin, or it might mean sleeping more to prevent bags under the eyes. I only promote that we each determine what feeling beatiful looks like for each of us, and that we don’t discount the impact that ignoring that feeling has on other areas of our life.

So here goes, my dear friends.

All my best,

xoB

Chronic Motivation

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