Tears and Fears

“But I, being poor, have only my dreams. I have spread my dreams under your feet; tread softly, because you tread on my dreams.” ~ W.B. Yeats.

There’s a reason I chose this quote to go on the header of my blog––ever since I heard Sean Bean recite this snatch of poem in the movie Equilibrium, I’ve loved it. It’s just so me, that sense of desperate dreaming. I’ve never been rich and occasionally I’ve dipped below the poverty line…but I’ve always had my dreams. Now, more than ever, I cling to this poem. I am not okay and I cannot pretend to be. I’m doing better than I was in the first three days after the vote to begin defunding the Affordable Care Act…by this I mean that I am no longer swinging from raw anger and helpless weeping. But just because the tears are now controllable doesn’t mean they have dried or that the fear is gone. “Don’t be afraid,” I hear people say. “Be brave,” I tell myself. But courage is not the absence of fear, but the overcoming of it. When repressed, fear does not vanish but instead transmutes into despair. They say confession is good for the soul so I will make a clean breast of it, hoping that in the telling of my fears, I will find my courage. And maybe, along with it, my hope and a way to move on––a way to cope with the new normal that has been forced upon me. I am giving myself permission to cry one more time, now as I write this. So if this is a little less coherent than my usual, at least you’ll know why.

On November 9th, during Hillary Clinton’s concession speech and in the middle of my work day, I broke down. “There goes my brother’s health insurance,” I sobbed, shaking so hard I thought I was going to throw up. I knew that repealing the Affordable Care Act was at the top of the Republican agenda…and they had just won control of Congress and the White House. I knew what was coming. Many people tried to tell me it would be okay, that the Republicans wouldn’t repeal the ACA without a replacement plan in place. They told me I was over-reacting, that things wouldn’t be as bad as I was saying. “Repeal and Replace” is the motto I have heard since the election. And yet last week, both the Senate and the House of Representatives voted to defund the ACA…with no replacement plan in place or even drafted. When I called my representatives and senators and asked if they had a plan and what it would be, I was told “Oh, it’s coming, just wait”. There is no plan in place. They will repeal the ACA and then, maybe, come up with a replacement plan. Eventually, after they push it through all the levels of government.

And I am afraid.

I am afraid for the present because I have a brother with autism and a mother with auto-immune diseases. I remember the days before the Affordable Care Act. I remember the discrimination, the outrageous premiums, the denial of services. Finding insurance companies who would even cover their diagnoses was difficult, painful. Those that would charge outrageously high premiums…and they would often deny services. Anything related to autism (or be linked by the most slender of threads) was often refused, leaving us being charged out of pocket, while still paying for insurance. I remember laughing aloud with joy when the ACA passed…because now we had options. I know that the ACA isn’t perfect, and I’ve never claimed that it was. Still, it gave me something precious: it gave me hope and help.
Now that it is being gutted without a replacement waiting in the wings, that help is gone…gone with the suddenness of a rug being ripped out from under me. Now it is back to the bad old days of unchecked greed and discrimination. Without the ACA to help, my brother’s insurance will go from a little over $100 to half my monthly paycheck. And what about Mom…will she be able to get treatments now if she needs them again? What about all the other people I know who depended on the ACA even more than I did? What’s going to happen to them now? How many will suffer?

I am afraid for the future. I am afraid because I have begun to think about starting a family of my own. Now…now I don’t know what to do. You see, statistically any children I might have are pre-disposed to have something on the autism spectrum. I am not afraid of having a child with autism: my brother has it and even if I could, I wouldn’t exchange him for a “normal” one. I know autism is not a curse and that levels of ability do not determine a person’s worth to society, or make them broken in the eyes of God. An autistic person’s full potential is not to become neurotypical.
But while I know the joys that come with autism, I also know the challenges. I know what it will take to give an autistic child the best shot at a good life: early intervention. If I have a child and that child has autism, I want to be able to give them every opportunity to make the most of their unique gifts and limitations. Good prenatal care, holistic environment, good diet, early access to therapy and personalized education––the works. All that is obviously quite expensive, ranging from difficult to impossible when you aren’t wealthy; but the ACA and similar programs made them more accessible to low income families. With the ACA, I thought that I would be able to focus less on the basics of good health care and focus more on education for any children I might have.
Could I live with myself, knowing that my finances and the political climate placed more limitations on my child than nature did? It’s a question without a wrong answer––which makes it more difficult. I don’t know what I’ll decide, but my decision will be made on a knife’s edge between fear and recklessness, hope and naiveté. It’s one thing to say that children are a blessing and quote all the pro-birth slogans…but I could very well bring a child into this world that would never be what we call “independent”. That is the reality of the choice I face.

Either way, all I know is that before this election, I didn’t think I would have to choose. With the ACA and the legacy of Obama’s progressive equality, I liked my chances of protecting and expanding my family. And now it is going, going, gone. My trust has been shattered and along with it, the dream that I could have it all, the dream that I wouldn’t have to struggle like my parents did to raise a wonderful person with ASD. The dream in which a child of mine would be valued by society at large the way they would be valued at home––no matter how their brain was wired. No matter where they fell on the spectrum of human sexuality or what color their skin. And maybe this “amazing” new program will be unveiled in a year’s time, or six months…maybe it will even be the ACA, just repackaged under a new president’s name. But even six months without insurance can be a literal case of life-or-death, financial ruin or success.
This vote has taken from me my peace of mind and replaced it with only a promise…but a promise won’t help me in the meantime. A promise from people who dismissed my concerns does not compare to the lifeline they ripped from my hands.

What’s a dreamer to do? I guess I just go on. I have my family, my friends and my God; I have my dreams and my words to describe them. I guess I step up and try to throw myself into the ACA-shaped hole in our lives: I tighten my budget and I decide what I am willing to sacrifice for my dreams. It’s Martin Luther King, Jr day…today of all days I have no excuse for allowing fear or the political climate to kill my dreams. Today, I am reminded that I am not the only one with a dream or the only one hurting right now.

It’s just so hard. There. That’s all my tears and fears laid bare to the world. Tread softly, because you tread on my dreams.

A Conversation With a Republican

I had a conversation this past week with an older woman who is more politically conservative than me. We got along well, however, in spite of our differences: besides our political differences, I’m young and healthy while she’s older and in chronic pain. It’s always good to talk to people who do not share your exact views: conversations like that always seem to shape and sharpen perspectives more than a continuous chorus of agreement…as long as everyone remains civil, that is. I just wish I had initiated the conversation in a more graceful way.

A TV was on in the background, and of course, the news of the hour was Donald Trump’s transition team. More specifically, they were discussing whether or not Trump’s appointment of men with close ties to white supremacy movements means that this administration will be racist. I don’t remember giving my mouth permission to open, but nevertheless, a certain comment that has been ringing around inside my head somehow made its way outside.
“Well,” said the woman, “I guess I know who you voted for.”
Damn. Way to be subtle there, Hannah. I sighed and trotted out the explanation I’ve been using since the November 9th (the very same explanation I would have used had things gone the other way): “I voted for clean energy initiatives, the preservation of the environment, and for the dignity of all people to be respected and upheld. I felt that those values, at the very least, stood a better fighting chance with her than with him.”
“That’s probably the best argument I’ve heard for voting Democrat this election, but I just couldn’t stomach her,” she said in reply.
There was silence for a few moments…and then the news switched to coverage of the Hamilton/Pence/Trump on Twitter drama.
“I just don’t understand,” she went on, “why all these people are so frightened. I just want to tell them not to be afraid; there’s nothing to be afraid of. They should just calm down. Everything is going to be alright.”
There’s three possible answers to that kind of statement.
1. Make some non-committal sound, and change the subject.
2. Disagree violently: “Don’t you dare tell me it’s going to be okay!”
3. Try to explain your viewpoint in calm, respectful tones.

Of all the above options, I think #3 is the hardest…which is of course why it is the option I committed myself to.  You know, that pledge I’ve been struggling to keep.
“Well,” I said slowly, taking in deep breaths around the word and willing myself to be calm, “I guess it almost doesn’t matter.”
Judging from the puzzled look she gave me, I guessed I wasn’t doing a very good job explaining, having been so focused on staying calm.
“I mean,” I hastened to add, “that whether or not there is actually something to concerned about, you can’t just dismiss someone’s fears out of hand. It’d be…it’d be like me, a young woman who hasn’t lived a single day in non-stop pain, telling you not be depressed by the chronic pain you live with. ‘Keep your spirits up, you’ve got to remain cheerful! That’s the important part!’ You’d probably stop listening to me, because I’ve just demonstrated that I really don’t know what it’s like to be in chronic pain. It would seem like I’m just not interested in putting forth any effort into understanding what it’s like for you to be in constant pain––I’ve just offered a glib little cliché. I’ve basically just told you that you don’t have the right to your feelings about your own body and the pain you suffer.”
“I hate it when people do that,” she said, very quietly.
I nodded. Working as a CNA has given me front-row seats to the way people react to another’s pain, and the anguish that many of those approaches leave on the one who can’t walk away from the nursing home…or walk at all. If I’ve learned nothing else in my six years in Long-Term Care, I ‘ve learned just how damaging it is to deny people the validity of their own pain. “Telling people not to be afraid, or concerned,” I continued, “isn’t going to erase or ease their feelings of fear. It’s just going to make them feel ignored as well as threatened, angry as well as afraid. What we feel is very real…at least to us…and to just dismiss those feelings…”
After a long pause, the Republican turned to face me fully and asked: “So why do you feel concerned? What is it that makes you react as strongly as you do?”
“I’m just afraid he’s let the genie out of the bottle,” I replied softly. “This was a very emotionally charged election on both sides, but the rhetoric he used was pretty fear-based…and the fears of one particular group over all others. I just worry that now the vindictive expressions and extremist attitudes have been, well, normalized to an extent they weren’t before…Genies don’t usually want to go back into the bottle. Once they get out, they tend to run amok. Hate-speech is hard to control, once it has got a foothold. And I don’t like what I’m seeing, where compassion is being equated with weakness. If we can’t be kind and show empathy towards one another without being labeled a security risk and a dangerous flake…God help us all, but what do we have left?”
“We won’t let that happen,” she said firmly. “Even if he tries to do all that, which I don’t think he will, we won’t let it happen. You’ll see.”
I smiled back at her, a bit sadly. “I hope so,” I said.
The conversation was over and we each had to go our separate ways. During my drive home, I wondered if I should have made her stay longer, cited historical precedent for the populace allowing acts of oppression against minorities to be carried out by their government. Argued longer, better, more forcefully. Perhaps I should have––after all, those who don’t know their history are doomed to repeat it. But talking about genies and bottles put me in mind of another myth: Pandora’s Box. In that story, the last thing to be released from the box was Hope. Hope was smaller than everything that had been trapped in the box with it, but Hope was also the only one that could make the new world bearable.
Among my many flaws is impatience: I want things to change, and I want them to change now. That’s the crusader part of me, wanting to be united with the dreamer; the two extremes of my being desiring to be reconciled, knowing they can only do so in a world where justice and mercy dance in harmony.
But change, lasting change…that doesn’t usually happen overnight. It doesn’t happen in a single conversation.
In all the great stories, the ones I turn to for both solace and strength, there is a common theme. What is it that defeats the darkness, that turns back the tide of hate? It’s never just one single act of defiance. It is always the innumerable tiny acts of kindness, the little loves and minute mercies we offer to our fellow human beings every day. When it comes to kindness and courage, there’s no such thing as a wasted effort or insignificant gestures. All our small gestures run together into a stream that trickles through the dam until finally, one more act, the culmination of all that came before, smashes through.
Nothing I do, say or write is ever likely to be that culmination. That’s not an excuse to shut up, sit back and swallow my words. I may never be the culminating act…but I might be the catalyst for other small gestures of kindness. Ending that stimulating conversation with hope…doesn’t feel wrong. I gave her something to think about. You can’t really expect more from a fifteen minute conversation.

Misunderstood Millennials

This is a post originally published on my old blog. However, I feel like it is appropriate to bring over here, to this blog. 

Two days after the election, I found myself on my mother’s bathroom floor, trying to put words to the anguish churning within me. I had just seen the break-down of the vote, that showed that the majority of Millennials had voted for Clinton, but that Trump had the vote of the majority of the Baby Boomers. Then I had read a social media post from a person over 65 mocking my generation for our protests of the election of a man who believes global warming is a hoax.
I was shattered.
I am a caregiver, and I have sacrificed so much of my youth to care for my elders. I have given so much of my heart and my energy to making sure that the dignity of their sunset years is respected. And I am shattered by the blatant disrespect that so many (but not all) Baby Boomers hold for Millennials.
“One day soon, a lot of these people will have depend on Millennials to be their caregivers,” I said–or sobbed. “They will entrust us with their dignity and their bodies…so why don’t they trust us with the planet? The long-term environmental repercussions of this election will left to the Millennials to deal with. In fifty to a hundred years from now, when the environmental debt comes due…the Baby Boomers won’t walk this earth. But my generation will. We will be the ones who are stuck with a consequence that we voted against…and we are mocked for the horror we feel. We are called stupid kids. How is that right? How can I be okay with this?”

The next day, my mother published a post on her blog. Among her beautiful, raw words I found this:
“I am publicly apologizing to my children and the children of the world for an older generation who seem not care that we are leaving a desperately ill planet full of problems for them to sort out.”

And I am reminded that among those who come before me, there are those who have fought bitterly for the environment all their lives. I am reminded that they have been mocked and belittled for daring to turn their backs on what was easy and “making life harder than it has to be”. They have been made fun of all their lives, far longer than I have been called a stupid kid.

I say no more. I say enough. Preservation of the environment is not the stance of one political party or one generation. Climate change is not an opinion. Responsibility and sustainability are not optional.
To all those who have fought for my future before I was born, I say, “Thank you for your work.” I honor the sacrifices you have made and I promise, your struggles will not be forgotten. I am building off the foundations you helped to lay. Without your struggles, my future would be bleak indeed.
To all those who do not understand my passion and my protests, I say, “Thank you for your respect.” I get how I may seem strange, out of touch and consumed by things you do not understand. The life I live is so different from the style of your youth. I understand. But please do not mistake my passion for my future as a rejection of the memories you hold most precious. I do not believe that we should sweep aside the past, but I cannot live in the idealized dream of an age gone by. When I am your age, I want be able to enjoy the same beautiful planet you do now. I want to be able to go to the ocean without seeing large, floating islands of trash. I want to be able to walk outside without choking on air gone foul with pollution. And I want to be able to go to a zoo and not have to tell my grandchildren: “What you see in front of you is the last of its kind”. I just want the same things you have enjoyed all your lives and I know these things will not happen on their own. The pictures I see, of islands of trash floating in our waters, of the ice-caps melting, of dying polar bears…these pictures break my heart. They motivate me to vote the way I do, to think the way I do, to act the way I do. I want to grow old on a planet as beautiful as the one you have grown old upon. To do so, I believe there must be short-term sacrifices so that there can be a long-term future where my grandchildren can enjoy both a pristine natural world and clean energy.

So that is why I am standing up for what I believe in, why I am involving myself in the politics and direction of this country. And I promise I will still be there in the end for you, even if we do not see eye-to-eye. Even if you cannot understand why I am upset, I will still be there, as your compassionate caregiver. I will always fight for your dignity, even when you cannot. Especially when you cannot.
Trust me then and trust me now. I swear to you that I will always strive to be intelligent instead of ignorant, respectful instead of resentful, compassionate instead of cruel. All I ask is for you to listen to me, to hear me out even if you disagree. I promise to do the same for you.

To all those of my generation, I say, “Don’t give into complacency.” This is our fight now, this fight for the future of this fragile bouncing ball that we call home (God, I love Five For Fighting). We cannot afford to sit idle, to grow complacent, to sit on the side-lines. It’s our future, our planet, our lives.
We are the generation raised on Harry Potter and we have no excuse to forget these words that we absorbed in our childhood:

“Dark times lie ahead of us and there will be a time when we must choose between what is easy and what is right.”

If we must be Dumbledore’s Army, then let us remember to seek out the Order of the Phoenix. Let us not forget the wisdom and struggles of those who have come before. I promise: not all of them are going to shame us for being young and full of passion.

And even if some of them do, than let us consider this our chance to prove, once and for all, that we Millennials are not stupid and self-absorbed. Let us be compassionate as well as passionate.