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

Chronic Motivation

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Dear, Lexi