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

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

I wasn’t.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where are our values, America?

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

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

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

Compassion is free.

xoB

 

 

 

 

 

I am not the problem.

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

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

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

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

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

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

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

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

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

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

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

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

I’m just saying.

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

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

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

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

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

But this is where my issue got real.

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

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

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

But I am not the problem.

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

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

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

It’s a viscous, viscous process.

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

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

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

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

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

I am not the problem.