I told you I was sick
Almost seven years ago, I got diagnosed with multiple sclerosis. I was relatively lucky; I received a diagnosis fairly quickly, after three months of CT scans, MRIs, and other various tests. I had health insurance, but It took me two full years to pay off a single emergency room visit. Still, I consider myself lucky, but that shouldn’t be surprising. In America—especially when it comes to healthcare—we’re taught to be thankful for scraps.
With every diagnosis comes a “Why me?” period of grieving, and I still have days where I feel sorry for myself. I get overwhelmed by the not knowing. MS is an unpredictable disease, one that could eventually rob me of some of the basic functions that I value most. I try to stifle the fears, the endless “What ifs?” What if I wake up tomorrow and can’t walk? What if I eventually lose my already compromised vision entirely? What if I lose control?
I try very hard to focus on the positives. I have had only a few minor physical challenges and my yearly scans are consistently promising. But as a woman, I’m used to bearing pain in silence, dismissed by male doctors and told that I should just grin and bear it. As a queer woman who has made the conscious choice not to bear children, society says I matter even less. If I were to become physically disabled, my currency would dwindle even further. But I am very, very white. I have a job with flexible hours and adequate medical benefits. I live in New York City and have access to some of the world’s best doctors and hospitals. My disease is very real, and very scary, but for the time being it’s under control.
I take one pill every night that suppresses my overactive immune system enough that it no longer attacks itself. I don’t get sick as often as I expected, but when I do it can be dangerous. Extreme temperatures—within my own body and outside of it—exacerbate my MS symptoms. Stress is very, very bad for me.
Every month I get thirty pills with a total sticker price of eight thousand dollars. Every night I take a pill, and if I skip seven days in a row, I could go into cardiac arrest (for reasons that are still unclear to me). Yet nearly every month some unforeseen glitch in America’s shameful healthcare system forces me to negotiate with either my insurance company, my personal doctor, NYU Hospitals, a large pharmaceutical company, a specialty pharmacy, and FedEx (sometimes all six) just to get a 30-day supply of my medication. After these lengthy negotiations, I owe nothing, but like so many Americans, I pay in other ways: with my time, with my elevated stress levels, and—if I’m not very careful—with the very thing I’m fighting to protect: my health.
Again, despite these inconveniences, I still consider myself lucky. So many people do not have the privilege of being inconvenienced by insurance. Healthcare should not be a privilege—it’s a basic human right. Any setback in wealth, employment, health, etc., disproportionally affects the most vulnerable segments of the population: women, the LGBTQ community, any non-white person, and people with disabilities. The same people who have been taught their whole lives to grin and bear the pain inflicted on them by those with the most privilege and power; to not only put up with it, but to smile politely and be thankful for scraps.
At the beginning of November, I went to D.C. somewhat impulsively—inspired by Jane Fonda’s bravery and passion—to join a Fire Drill Friday protest. The topic was ‘women,’ and during the rally, I decided that I had no choice but to start putting my body on the line while I could still do so. I got arrested with 46 other similarly-moved people and I intend to do so at least once more (after two civil disobedience arrests within six months, the consequences are more serious than a standard $50 post-and-forfeit). Today I’m in D.C. again and the FDF topic of ‘health’ resonates deeply with me for obvious reasons. Only now, it’s our entire planet that is sick. Greedy corporations and short-sighted politicians have pushed our Earth to the brink—and it’s up to us to save ourselves, something we’re unfortunately all too familiar with here in America.
As a civilized society, we have the moral obligation to help those who are more vulnerable than ourselves, in whatever way we can. We are, and always have been, stronger together and our planet needs us—all of us—more than ever.
I’m done smiling politely and dismissing the pain. We have to stop settling for scraps.
Resources:
Text ‘Jane’ to 877-877 to get updates and information about starting a Fire Drill Friday in your own city.
This book is great if you want to more about the climate crisis.
This book is a good place to start if you’re new to activism.
