It’s Personal Now

If you have or have had cancer, most likely you have been told you are brave and that you are a fighter. Sometimes, it’s tough. I didn’t realize how tough it would be until last week, when I discovered I would have to fight even harder for my life and my healthcare, as the government prepares to repeal the Affordable Care Act.

I have heard a few say that they don’t want to talk politics. Don’t worry; I still share my kitten photos. But it’s not just politics. It’s my life. I would say that’s personal. People who say it’s whining or that I am being a sore loser don’t quite understand. In one sense, cancer patients are dying, so they have nothing to lose. Without healthcare, they also have everything to lose. Combined, I would like to think even if we might not be as physically strong from disease or cancer treatment, we’re a powerful group.

I often write when I’m upset, and so you know I’m sad that I will probably be sicker than I planned, and at a relatively young age, and that there’s a good chance I won’t live as long as I thought I would. Through it all, though, I’ve tried to maintain a sense of humor and peace about it, even when I’m sad and angry. There’s no cure for cancer. Cancer can happen to anyone—the type that I have now is the type that Steve Jobs had. If it’s my time, I can accept that and do what I can to survive and treasure the time I have.

However, I won’t accept that I should die sooner or should be denied healthcare coverage so that households with the highest income can get a $7 million tax break. I have to talk politics, because my life depends on it. Some senators don’t want to get “bogged down” with people (people like me) dying.

I first heard the phrase “wallowing in their complacency” in my A.P. English class my senior year of high school. I can’t even remember which poem or book we were discussing but that and the idea of shaking people from their complacency stuck with me. Or at least I thought it did. I had become complacent. I voted for my senators and representatives, who are standing up against the ACA repeal, but I haven’t done enough. I’ll do the occasional donation to someone running or biking for a cause or an animal welfare group, or do a feel-good proceeds-benefit workout class or event. (I drank a lot of beer for Hurricane Sandy recovery several years ago.) I need to do more for things that I believe in.

I find myself thinking about what I could have done and what I should have done—not just for beliefs but for how I can help others. I need to take things personally and fight for them. I’m not going to be quiet anymore.

So many of you have done so much for me, but some people have asked me to let them know what they can do. The options are looking grim, and it looks as if things are going to happen sooner rather than later. Help me fight the ACA repeal, call or write your senators and reps. If you don’t do it for me, do it for children who won’t be insured, for the fight against the growing opioid crisis, or for anyone else you know who has had cancer, diabetes, Alzheimer’s, or other conditions that could be considered pre-existing.

Earlier today, my foot cramped up into a painful claw from dehydration due to the side effects from the chemo. Today, I am drinking a lot of water and taking some potassium to prepare for tomorrow. I am going to first do a cycling class to benefit a women’s organization and then I am going to the New York City Women’s March, despite the fatigue and cramping. If you think I should rest for my health, then I have news: I cannot afford to rest. I’m not going down without a fight.

I have been shaken from my complacency. I hope it’s not too late.

What’s the Point?

A few days ago, I was about to caution someone about being dishonest about something. Halfway through, I stopped myself. The words died in my throat. It doesn’t always pay to be honest or to do the right thing. I used to believe that being good is the right thing to do, but lately, it doesn’t seem to matter either way. Bad things happen to good people, and good things happen to bad people.

You can rape someone and get away with it if you are moderately OK at something sports-related. (I already knew this though, because I have already seen people get away with rape, cruelty and even murder.) You don’t always earn a six-figure book deal through hard work or talent, but by being a terrible person. Some of the most incompetent people I’ve ever worked with update their LinkedIn profiles with new positions because they are good at B.S. (They never fooled me, though. I don’t understand how people overlook their blatant lies. Until I realized…) You can become one of the most powerful people on the planet even by being so arrogant as to blatantly mock the people who would put you in power, as long as they don’t understand that you’re making fun of them. People admire someone who doesn’t pay taxes and doesn’t respect women. As a Hispanic woman who needs healthcare for cancer, I am terrified, but people think I am less of a person.

But I knew that too. I’m from Ohio, where I inexplicably see Confederate flags. (I don’t understand the Confederate flag thing in Northern states. It obviously has nothing to do with the Civil War. Why don’t they just make a flag that says “I Heart Racism!” and end the charade?) On the drive on I-71 from Cincinnati to Columbus, there’s a barn with a Confederate flag and a big wooden cross, the kind I imagine that would be burnt at a KKK event. Years ago, driving back late from Cincinnati one night, I turned to my friends—a black man, a Jewish man and an Indian woman—and said, “If we broke down here, we would all die.” I always would joke when I passed that place, but it’s to come to terms with my disgust, fear and anger.

I can’t joke my way out of this anymore. I can’t laugh anymore.

Sometimes, late at night I hold my breath for a few seconds and think about not taking another one. I don’t know if I have the courage to move forward, with this illness, in this world. I feel weak and helpless. I am physically drained and emotionally beat up.

I was emailing with someone about hope for my health and how I felt I had lost it, and she wondered, “Hope is a funny thing—is it fickle? Or is it paradoxically strong?” I think it’s both. Just as you can’t hold your breath until your body forces air into your lungs again, it’s extremely hard to completely give up hope. It’s a survival mechanism. Even if you’re told your time is running out, you hope for a good day, some extra time, something good for your loved ones.

At low points, when I think there’s no point in doing what I think is right, a tiny bit of hope nags at me. I have to think about what I think is right. My mom worries that she didn’t raise me correctly, with the right beliefs. She worries about my soul. I refuse to hate people based on sexual orientation or race, or believe that women shouldn’t have equal rights. I don’t see how that makes me a bad person. However, while I try to love people as a whole, I have a lot of trouble loving people as individuals. I try to make peace with the concept of loving People, but I can’t love people often on an individual level. I was bullied a lot as a kid, and I don’t believe that people are basically good. People cut you off in traffic, push you on the train, say terrible things online. I find myself thinking things like, “Who IS this terrible person? I’m trying to be NICE.” With lots of expletives thrown in. I am not very good at being nice.

When everything seems pointless, I know that it makes me personally feel better to try to do the right thing. (Sometimes.) Maybe it is completely pointless to be “good” or to even try. The bad guys often win. Bad things happen to good people. Good things happen to bad people. Life isn’t fair, but I already knew that too. However, bad things often happen to good people because of bad people. Others are exploited so few can make money. Some people don’t want others to be equal because they feel threatened. People slap a religious or idealistic label on what war has always been about—money and power. Many people are bitter and feel the world owes them something.

On some days, everything—every single thing—looks bleak. Hope is fickle, and it can be dashed by one more piece of bad news, yet it’s paradoxically strong. One day—sooner, as it turns out, than I’d hoped—I’ll die and my name will be forgotten. As long as I exist here, though, I will try to remain strong enough to try to do the right thing. I won’t always, but when my time is up, I hope that I will have done my best.