Ever since my brain tumor was finally diagnosed, I’ve been told I was something of a medical miracle. Apparently, a tumor that size should have knocked me out for the count a lot sooner than it did. At the very least, I shouldn’t have been able to prance around in stilettos and constantly master the new technology necessary to do my job, let alone fly around the country as I’d been doing every week for five years.
More than three years later, I still have no idea how to feel about that. People always ask me how I could have not known that something was wrong. To be clear, I’ve never said I didn’t know something was wrong. I remember being super tired a lot, but I was living in North Carolina and working a project in Beverly Hills. I chalked the fatigue up to the stress of being bi-coastal, and the idea that I could honestly make that claim was so thrilling to me at the time that a little tiredness didn’t seem like such a big price to pay.
Of course, brain tumors don’t exactly tickle, but it wasn’t as painful as you might imagine.
Looking back on Facebook posts from the six months before my surgery, several crowd-sourcing inquiries make it pretty clear that I was experiencing discomfort. But they were headaches; the way I was brought up, you get a headache, you suck it up. Go take a nap or pop a pill if you have to. But unless it was a migraine or you were bleeding out of your ears, a simple headache wasn’t even a good enough reason to miss work or school. Seriously, who gets a headache and thinks they have a brain tumor?
The vomiting, vertigo and facial paralysis were harder to ignore, but easy enough to explain. A friend shared she felt vertigo every time her allergies started acting up. True, I didn’t suffer from allergies, but that still sounded good to me. I popped some Dramamine and chased it with Benadryl. Problem solved. When I woke up one day and the left side of my face was so paralyzed I couldn’t even drink from a straw, I can admit that was a bit worrisome. Nothing else was wrong as far as I could tell, but I did consider going to Urgent Care. Until my cousin called and mentioned he’d had the same thing happen to him during a bout of Bell’s palsy. Since he seemed fine, I decided I’d be fine too. No need to see a doctor.
I’m sure not many will be shocked to learn that the root of my reluctance to seek medical care was the same as the root of all life’s evils – money. More specifically, health insurance. I had none, and I’d just recovered from the financial set-back cause by a hysterectomy to treat endometriosis and fibroid tumors the year before. (Damn, I guess I was a pretty lumpy individual for a few years there.) Obtaining that first surgery without insurance had pretty much wiped me out financially; a second health crises so soon after the first simply wasn’t in line with my plan to re-balance my bottom line.
So I was determined to soldier through it. No matter what my family, friends or casual associates observed, no one could convince me that I was sick. So I had a headache? I wasn’t some pampered princess, thrown off her game because of a little pain. I’d just take an aspirin and keep it moving.
So I threw up a little at your party? Very sorry, but please get over it – vomit happens. Just give me some mouthwash and I’ll clean up the mess.
Anybody who tried to insist that I see a doctor stopped bugging me when I insisted they first give me a check to pay for it.
Obviously, if hard-headedness and wishful thinking cured debilitating diseases, a lot fewer people would suffer from them every year. But my attitude, foolish though it was, wasn’t completely out there. Millions of people gamble with their health every year. Especially the uninsured.
Even after my up-close-and-personal battle with this problem, I have no idea what the solution should be. I have always been a fiscal conservative, and my views on that haven’t changed. Any solution we as a country decide to pursue needs to be affordable and sustainable for everyone. The ACA, which helped millions of low income, uninsured people get basic care had the exact opposite effect in my life. I was enrolled while still making a middle class income as a contractor in the months leading up to my first surgery. Even the premiums for the least expensive plan hardly seemed affordable to me, and I resented the idea that I was paying far more to subsidize people I knew for a fact were choosing to do far less.
But the last straw was that I was unable to obtain the medical care I needed and was paying good money for. For months that year, I visited my gynecologist because of extreme pain and heavy bleeding. Every test or solution my doctor proposed was denied by the insurance carrier. After about four months of that, I dropped the policy altogether.
Considering what happened next, that may seem like a reckless decision. But I was hardly alone. I know many self-employed middle-income workers and small business owners for whom the Affordable Care Act proved to be anything but. According to a posting on The Henry J. Kaiser Family Foundation website, 45% of uninsured adults said that they remained uninsured in 2016 because the cost of coverage was too high. As critical as it is to make sure the most vulnerable among us are protected, can we really address that by putting the burden on the backs of the already struggling middle class?
I’m definitely not trying for any kind of ‘woe is me’ vibe here. I think I’ve lived a pretty comfortable life, riding along with every major trend since my career began in the mid-90s. I enjoyed the ride up and endured the ride down, and had figured out how to tread water until I became sick.
But let’s be honest, that ride down was a beast.
There are still a lot of people struggling to find their way out of the crater created when so many fell so far so fast. Those that landed well are often working for employers who already offer them health insurance. They have no reason to buy into the medical marketplace. Options like Health Savings Accounts offer those who can afford to adequately fund them tax breaks as they subsidize their own health care needs. They have no need to be in the marketplace either. As a result, the majority of the people paying higher premiums to prop up the inaugural version of the ACA were the middle-income participants of the new economy, who already work without the safety net of employer-sponsored benefits. You know, the people not rich enough to weather a major health crises, but not poor enough to qualify for subsidies. For many, like myself, it seems better to take the gamble and pay the penalty than be saddled with yet another, not unsubstantial, expense.
It was a gamble I obviously lost. In fact, I believe my overall story highlights the many reasons it’s in all of our best interest to get universal healthcare figured out. There has to be some way to fix what’s broken without throwing the baby out with the bathwater.
Because I was hit with two health crises back to back, I completely depleted my savings. While I managed to cover the first surgery without governmental assistance, I’m afraid you ended up paying for the second. And I do mean you – as hard as I’ve tried, I haven’t been able to find work in my field. Despite gains made since the ADA became law, many employers are reluctant to hire people once they are disabled. I have absolutely no desire to maintain this status, but right now I’m a tax recipient rather than a tax payer.
So the real cost of not providing for affordable health care extends way beyond paying the initial medical bills. My ability to continue to contribute to the system is currently compromised. Not only am I not able to add to the pot, I am consistently taking a cut of it years before I ever thought that would be the case.
In order to qualify for SSDI, I was determined to be permanently disabled. That also qualified me to sign up for Medicare. So now not only do I have subsidized healthcare, I could potentially receive a check for the rest of my life. While I am more grateful than I could ever express that this safety net was there to catch me, the fiscal conservative in me can’t help but wonder how my current situation could possibly be considered an acceptable outcome.
In 2016, 8,808,736 people received some kind of payout from SSDI, according to an unedited chart I found on the SSA website. Qualifying for this program isn’t easy, and I’m convinced it’s in our best interest to ensure every citizen can live with a basic level of security and dignity. But it makes no sense to allow tax payers to end up on disability rather than provide the means for them to get medical care before they become disabled. As we live in a civilized society, our hospitals are not going to simply let patients die if they can be saved. Which means we are going to pick up the medical tab eventually, and the cost of non-emergency treatment will be much more manageable than the cost of emergency care. And then adding the potential costs of government support and loss of tax revenue if the patient is disabled due to lack of timely medical intervention…well, emotions and morality aside, the way we are handling healthcare makes no dollars OR sense.
I want to say up front that I have never worked for the government and have absolutely no background or expertise on health care or how to develop public policy. My comments and opinions are based solely on my personal experiences. But considering what I had to face, I think my experiences serve as a decent case study, illustrating the fact that the healthcare debate is about much more than caring for the underserved, uninsured among us. It’s also necessary to get this right to help protect and preserve the middle class tax base that will likely be required to fund the ultimate solution.