“Yes, I am the Lorax who speaks for the trees, which you seem to be chopping as fast as you please…” — Dr. Seuss
Like many people, I’ve been silently (and not-so-silently) seething for months. I tried to passionately separate facts from lies in the recent election with family and friends. I invested time trying to repair relationships that were hurt from political misunderstandings and diabolically-different ethos. I avoided all talk of political leanings with family members and business contacts: I stayed the course.
But tonight, I broke.
It wasn’t the sexist remarks of Trump’s speeches and tweets from months past, nor was it the GOP’s determination to defund Planned Parenthood. It didn’t even happen when Trump mocked a differently-abled individual, or when I heard President Barack Obama give his final speech.
It was a realization in a single instant where I said out-loud to a quiet house, “No one cares anymore.” And, let’s face it, we really, really, don’t. We’ll share a few messages on social media, or use a hashtag and give an exaggerated eyeroll- but for the most part, everything that’s happened in the past week, from golden showers to C-Span cutting out to a Russia Today (RT) broadcasthas been met with jokes and gifs.
Some of us resigned ourselves to humor to cover the loss of our hope, while others simply ignored anything political, demanding we keep politics off social media. We’ve all had our own way to deal with it, and in the meantime, we’ve grown stranger- more bitter and less patient.
I too, recognized my passiveness with it all. Sure, I’ve been quite vocal on Twitter and Facebook for months- but outside of social shares, have I done anything worthy of saying that I stood for what I believed my country to be? I’m not sure I have. I too, shared the memes and produced legendary eyerolls. I promised myself, “we can get through four years!” I covered myself with every possible comfort blanket I had- focusing instead on the silver linings. When someone said, “we’re screwed” I said, “let’s try to find something to help us get through.” Despite my social updates asking people to “please share!” and “act now!” I hid in a Pollyanna world where I just couldn’t believe that the people in charge wanted to hurt me. Even as an extremely vocal supporter of Planned Parenthood and refugees, I found myself making excuses.
That was, until today.
The impetus for this moment came out-of-the-blue, when Speaker Paul Ryan looked a cancer survivor in the eye and said that the gentleman’s cancer was causing higher premiums for the rest of America- and those that didn’t have cancer, “deserved lower premiums” and more choices. I want to re-iterate: He said this to the man’s face and the man, simply stood there listening.
I must have watched the video, three or four times- first in shock then as the disbelief subsided- anger. Paul Ryan blamed the individuals who survive cancer (and those who did not) for causing premium hikes. He said, cancer patients deserved an insurance exchange of their own- that cancer as a disease, was causing other Americans financial trouble. He didn’t mention insurance company greed, or bogus pharmaceutical pricing- no, Paul Ryan did something much more sinister: He blamed cancer patients.
He said, that cancer patients and survivors were a drain on the society to which they pay bills. We weren’t worthy of the regular insurance market- we deserved something, “on the side.” Speaker Ryan stood not for cancer patients and survivors, but for the profits of insurance and pharmaceutical companies. My stomach turned.
And was I really surprised? Really? No, I wasn’t. So why did this pain me to this level?
“We don’t want to destroy the rest of the healthcare system for everyone else.” — Speaker Paul Ryan spoke, when describing the debt that cancer patients give non-cancer patients to cover in the insurance exchange market.
Last week, I shared a transcript of my cancer battle and Affordable Care Act gratitude, which was read on the Floor by Sen. Amy Klobuchar. I thought my words might make a difference- but, in the end, as passionate as they were, they were merely strings of syllables and sounds. I wondered if it was worth it anymore- the speaking, challenging and otherwise trying to get people to understand. Everything abnormal- the carelessness, racism, sexism and fear now just flows through our daily lives without much of a second thought. I saw a comic today that made fun of our next President being urinated on. This is now a thing- we make something unbelievable understandable through humor. Our disbelief turns to jokes to even the playing field for our emotions. Somewhere in it all, I think we lost who we used to be.
I was once a cancer patient. Now a survivor, the ACA repeal would affect myself and my cancer survivor friends and family directly.
I’ve been vocal about the Affordable Care Act for years. Between lobbying on Capitol Hill in Washington D.C. to protesting outside our Minnesota State Capitol, I found my cadence, marching for women and men who like me- never asked for their world to be turned upside-down with a cancer diagnosis. I paid over $80k of medical bills out of pocket in-between my insurable and uninsurable periods. When the Affordable Care Act was passed, I felt hopeful about my future for the first time in years. I received new treatments and had a baby- our last, before a radical hysterectomy would take my fertility. I wrote in 2011:
My insurance company said my “pre-cancer” and “cancer” were pre-existing conditions. This meant, I had to pay $2k or more out of pocket for each check-up. I couldn’t afford a hysterectomy to make it all go away. I couldn’t even afford to keep my body healthy enough to have another baby I desperately wanted.
My son, now four- hasn’t lived in a time where his mother was unable to receive care. Our lives are so vastly different than they would have been without the ACA. We own a house now. My older child, his resilient sister, remembers her mother frantically trying to work through surgeries and treatments, and the terrible apartment we had in the wrong side of the city where loud men screamed near the door, and the smell of stale smoke that always seemed to waft in from the balcony. My medical bills and the job I was constantly trying to keep between doctor’s appointments were far more damaging than my cancer ever was. My daughter remembers my days in tears, on the bathroom floor- wildly throwing up and deeply stressed. My son only knows a yellow-painted bedroom with a Pottery Barn rug and a mother who has time to cook homemade orange rolls to Spotify playlists.
I don’t want to go back. I’m terrified to go back.
I imagined tonight, what I’d say if I met Speaker Ryan. After strenuous use of my backspace key, I settled on this:
Speaker Ryan, what you want to repeal, gifted our family with a little boy who delights me with his 4-year-old wisdom and humbles me with his perfect nose kisses. He knows nothing of the struggle before he came into the world in January, 2012.
Obamacare, (or the Affordable Care Act) didn’t give us hope in the traditional sense- our hope came in three ways: I gave the world a miracle-child, conceived and birthed after cancer. I received treatment and became cervical-cancer free because of a radical hysterectomy in 2013. When my cancer turned from cervical to anal pre-cancer, my treatment path was never questioned, or held back by insurance fears in 2014- I simply walked my path. I became whole again, paid taxes and parented two, beautiful children. I grew my business. I paid over $80k of medical debt off to purchase a home.
I lived- the only way I knew how: With all I have.
If you repeal the ACA, I am one of millions who will be affected by preexisting conditions- through no fault of my own. I never asked for cancer, nor did I ask for help with my cancer. All I’ve ever wanted was to be afforded the same opportunity as my peers- to breathe, love and experience what years I’ve had left.
The ACA gave me a safety net that eased my deepest and darkest fears. When you take that away, millions like me will be less productive, less passionate and less whole human beings. If our lives are not worth protecting, then the oath you’ve claimed as a public service will be for naught.
I don’t want to destroy your health system, I want to simply breathe the same air as you, and exist here- for this is all I have.
That’s what I’d say, if given the chance. I’d say it for my dear friend Dawn Hicks, who passed after a cancer reoccurance. Bankrupted by high insurance costs and denied treatment- with the only option of being put in hospice, Dawn told me before she died, “Never give up.” And I haven’t, that was, until I stood at my parent’s kitchen counter.
My father told me tonight in his own Irish-Catholic and very Republican way- that I shouldn’t worry. He cited my grandfather with a famous family saying, “Don’t worry until the snow is in bed with you.” The only problem is- my father can’t feel my cold and can’t see the ice creeping in each welcoming window pane. I tried to tell him, “Dad, the snow is already here,” but he smiled and walked away to get ready for a Knights of Columbus meeting.
Maybe we’ve just all become so resigned to our fate, that the “isms” of the world don’t seem to matter. We’ve certainly glossed over the racist, sexist and homophobic actions of recent years- which is depressing and mind-blowing when I think of everyone who’s been crushed under the shoe of the Alt-Right. I just never thought I’d live in a time when healthism became a thing: A special insurance pool for the untouchables. Cancer patients and survivors, grouped together in their own network as if not to touch those that are healthy- for fear we might cost our fellow human beings precious dollars. And in all my musings- all my intellect, I cannot imagine ANY insurance company that would be willing to touch us. We’d effectively have a caste system in our healthcare- where the untouchables are banished- all for the sake of wealth.
And no one is batting an eye. (And why should they?) When we’ve resigned immigrants and minorities to less superior schools. Women to fewer health care choices. The GLBT population to question whether or not their rights will be upheld. What right do I have to even question my fate?
One thing I can’t wrap my head around: While cancer tried to take over my body, Speaker Paul Ryan tried to take my dignity. The second is much, much, worse.
Here are three things you can do (right now!) to help the Affordable Care Act:
1 — Call Senator: 202.224.3121
2 — Tweet #ProtectACA
3 — Email your Senator: http://www.senate.gov/senators/contact/