An Open Letter to Tom MacArthur and Congressional Republicans on the Affordable Care Act

Congressman MacArthur,

I was eight when I defecated in my pants while sitting on the floor watching Star Wars.

I was ten when I had my first colonoscopy.

I was eleven when I was diagnosed with Crohn's Disease.

I was twelve when I leaned against the window of my dad's car, on my way from my regular appointment at the Children's Hospital of Philadelphia, and looked at the people around the city and wondered how many of them knew how they were going to die, the way that I did.

I was thirteen when my mother had to start spending a half hour every evening placing a feeding tube into my nose and down my throat so that I wouldn't lose more weight. I was under sixty pounds.

I was fifteen when I was taken into the hospital and they poked a hole in my stomach and installed a plastic tube so that I could get the nutrition that I lacked.  I slept with a machine pumping a supplement that replaced the food that I could not eat into my stomach for five years.

I was eighteen when I was trapped in my college dorm room for two weeks because I was in so much pain that I was not able to get out of my bed.

I was eighteen when I was cut open in an emergency operation and three feet of intestines, so scarred and diseased that food could not pass through, were cut out of my body.

At 27 I've lived with Crohn's Disease for the majority of my life. It has been a life full of severe abdominal pain, weight loss, personal embarrassment, and fatigue so great that most nights after school I was passed out by 7:00. I wasn't able to concentrate on school work, wasn't able to get my homework done, have a social life, or play sports.

I wasn't able to be a kid.

I kept my shirt on for four years because I was so embarrassed by the feeding tube that stuck out of my stomach. Most mornings for twelve years the pain in my stomach was so great that I could not move for twenty minutes. I sat curled up in the shower desperately hoping the warm water would help alleviate the pain.

But I was lucky, Congressman, because I had health insurance and parents who were not struggling to survive. I was able to get the medicine I needed, the treatments I needed, the emergency operations I needed.

But as the end of my time at college came, I was horrified. Why? Because I graduated at 22, and back then, that meant I only had a few more months on my parents' health plan. And my job prospects were bleak at the time, because many in my generation were thrown into an economy destroyed by Republican economic policies. I was in remission after my surgery in 18, but without the five medicines I took at the time, there's a real chance I would become symptomatic again.What was I going to do?

The Affordable Care Act's provisions for pre-existing conditions and extensions for dependents to stay on their parents' health care plans went into effect just when I needed them to. Without it, I don't know where I'd be today.

I wouldn't have been able to give up a year of my life to volunteer in service to an inner-city high school in Los Angeles, because I would have needed to find a job immediately just to make sure I had health benefits. But even then, there was no guarantee I would be covered because I have Crohn's Disease and have had so many colonoscopies, x-rays, CAT scans, and surgical procedures that I could be deemed a liability.

After I finished my year of service, I was struggling to find a job. I was completely out of work for a few months, and then was able to find part-time employment. If I wasn't able to stay on my parents' plan, I would have been without health insurance, despite the fact that I was spending 40 hours a week sending out resumes, going on interviews, and desperately searching for gainful employment.

In 2015 I was a few months away from being booted off my parents' insurance--and I still didn't have a job. I was going to have to go into the marketplace. Without that marketplace I would have had no option...I would have to forego my medicine...because on a part-time salary wherein I made less than $1,000 per paycheck I was never going to be able to afford the nearly $9,000 price of my four (yes, I take one less now than I used to) medicines. But I would not have even been able to use the marketplace if it wasn't for the subsidies mandated by the Affordable Care Act. Without the subsidies that supplemented the marketplace, I would be without insurance. Without insurance, I may very well have ended up back in bed, in severe pain, exhausted, and losing weight rapidly.

I was fortunate again--I found a job in time and was able to get health insurance. And, because the Affordable Care Act mandates it, I was covered despite my preexisting condition. And, because the Affordable Care Act mandates it, preventative screenings are no cost to the consumer, and so when I need to have a colonoscopy (a too frequent occurrence for people with Inflammatory Bowel Disease) I do not have to pay so much as a copay.

Congressman, as you can see, I have benefitted from the Affordable Care Act in many tangible ways. Your party's proposals for repealing and replacing the ACA remove almost all of the benefits that have made insurance tangible and affordable for people like me and people who have not been as fortunate. The mandate for all people to be covered keeps premiums down--if the healthy people are not in the market, then the people like me who rely on insurance to pay for our outrageously priced medication will have even less to spend on things like housing and food.

Without the subsidies, people working part time or underemployed will not be able to afford insurance at all. 43,000 people will die annually if the ACA is repealed and the major benefits like coverage for pre-existing conditions, subsidies, extensions for dependents to stay on their parents' plan, lack of lifetime limits, and the individual mandate are removed. All of these things work together to keep costs down and have led to the lowest uninsured rate in American history.

All of these preventable deaths and the loss of insurance will be on your hands and on your conscience if the ACA is repealed. It is not only morally bankrupt, but it it is fiscally irresponsible. Repeal will lead to a $353 billion increase in the national deficit over ten years. This is forgetting to mention the countless jobs it will cost. Here in South Jersey in District 3, Urgent Cares and new labs like Quest Diagnostic and Labcorp have popped up all over Route 130. Should your constituents lose their healthcare, these jobs will be lost, and Route 130 will be spotted with even more empty strip malls, which will drive more businesses away.

Congressman, I have to assume that you have never had to worry what would happen to you if you were denied your insurance. I have to imagine that when you were thirteen you did not have the horrible sensation of knowing that this disease with which you suffer every day is going to be the same thing that kills you one day. I have to imagine that you never had to worry that you would make a mess of your pants in the middle of class because you could not control your diseased intestines.

I have to imagine that you were always able to imagine a future for yourself. I was not. I never assumed I would be able to work a day in my life. When I was thirteen I just assumed I would be trapped in my home, trapped in a failing body. If I even lived past twenty.

I implore you, Congressman, fight to keep and strengthen the Affordable Care Act. There are issues that need to be resolved and it's not perfect, but it has made life so much better for myself and millions of others. Throwing it all away is going to hurt millions and kill tens of thousands. Can you live with that?

Signed,

Tim Rooney

My Letter From the President

It was a cold night in a cold, empty room. Like many nights in my first year of college, I was by myself in my single room. I was very sick, and though I didn't know it at the time, about to get a whole lot sicker.

But tonight--this night--felt warm. I had voted in my first election, and I had voted for the first African American President. I was excited--and scared. I felt that this was an election that mattered, because it was about change, even though  plenty of people said that this kind of promise was dumb and naive. Barack Obama had no platform, they said, he just threw around nice words and made promises he couldn't keep.

But I heard plenty that was completely different than what came before. It was a call for diversity and inclusion, a call to replace war with diplomacy, and to set aside mistrust of other races and religions. In his acceptance speech that night, this is what President Obama said:

It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen, by people who waited three hours and four hours, many for the first time in their lives, because they believed that this time must be different, that their voices could be that difference. 

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states.

We are, and always will be, the United States of America.
It's the answer that led those who've been told for so long by so many to be cynical and fearful and doubtful about what we can achieve to put their hands on the arc of history and bend it once more toward the hope of a better day.
It's been a long time coming, but tonight, because of what we did on this date in this election at this defining moment, change has come to America.

I am not, and wasn't then, stupid or naive enough to think every promise would come true, or that any change would be easy...but these are the words and the dreams that defined everything about who I strived to become. Though it is not until I sat down to write this that I truly understood.

Just as my adolescence was inextricably linked to the disastrous policies and presidency of George W Bush, my adulthood has been inextricably tied to the presidency of Barack Obama and the world view that America can be better than it is now-- that America is an unfinished project that calls upon each of us to commit to its deepest values of liberty, diversity, and inclusion.

I went into college in the midst of the earth rattling recession that turned the world on its axis. My prospects were dim. I saw the ongoing wars in Afghanistan and Iraq throw away people's lives and accomplish nothing. I saw anger at Muslims creep into our cultural consciousness. I saw a president ineptly out of touch with the needs of the country's people, ignorant of the disastrous economic policies he and his congress had put forth. I didn't fully grasp it all, but this was the milieu in which I grew up. The challenges felt insurmountable.

Crohn's was an enormous burden then; it felt like it separated me from everyone else. I often felt that my time in college was a waste since there was no way I would be able to  hold down a job with this illness. I didn't believe in much of a future for myself. And with the economy falling apart, and the television reporting that things had not been this bad since World War II, I had even less to look forward to. But my illness has also provided me with a unique perspective and empathy that has served me well and opened my eyes to realities of inequality. My own roadblocks and difficulties have kept me grounded enough to realize that there is nothing in this world that is promised, deserved, or guaranteed. Good person or bad.

When I awoke from my surgery in January of 2009, having just gotten three feet of my small intestine removed, I had the great privilege to spend the next two weeks with a cavalcade of temporary roommates who were admitted and released in a matter of days. There was the guy who suffered from such chronic diarrhea that the room smelled of feces at all times; he spent his entire two days shouting about all that had gone wrong in his life. To be fair, he did seem to have a severe issue, but also, I had just had my stomach cut open and couldn't move. There was another dude who was unhappy with our nurses for not reacting enough to his needs, who moaned and groaned constantly.

My favorite roommate, though, was a fellow who had been taken to the ER because, I think, he had complications with his diabetes. He spent this entire time explaining to people on the phone how horrible his ambulance ride was, that he didn't even want to come to this hospital, but he had to. Everything--from the food, to the great tribulation of receiving his prescriptions--was a personal slight against him. He demanded and deserved only the best and greatest attention at all times. Then he went on and on about how Obama was a sleeper agent for the Muslim Brotherhood, in the pocket of the Saudis, and was planning to overthrow the country.

So that was fun.

I was lying there, the thought slowly dawning on me how fortunate I had been to even be stuck in this bed. I had almost been set home, which may very well have cost me even this very uncomfortable moment.  It had only been a few days since my surgery, and I still had my catheter, I still had an IV inserted into my forearm, wires attached to various places to monitor my vitals, I still could not sit up, but I felt better than I had in years. I could not stop thanking God and the universe and every abstract concept of creation for this unbelievable feeling of... Nothing. I was not in the constant pain and exhaustion that had accompanied my every waking hour for so long. I resolved, then, that there would never be a moment that I would not give thanks, where I would not remember where I once was and never again take for granted the simple pleasure of waking up and not being in pain.

But those two weeks, I learned very quickly that those who did not know what it was like to not have everything at all times could not be thankful for what they did not realize was not there right. I realized that the hope I believed in and voted for, that I was experiencing vividly was virulently opposed by cynicism, selfishness, racism, and classism. Those who have and have always had do not feel for those who have not.

I left that hospital and it still took me a long time to reach my footing and come to grips with this grand epiphany, to even fully appreciate how deeply I felt it. But this healing came at the same time as this new presidency...and I was on fire with that three word mantra: Yes We Can.

I could live a life. I could pull myself together and overcome what had defined everything about who I was. Maybe I did get to have a future--something I never dreamed for myself.

And so I put myself out there. I went on a retreat that gave me the chance to turn the page on that previous chapter in my life--I literally saw those fears and doubts go up in flames. I took my first trip to West Virginia for a weeklong service immersion experience. This was mostly as an opportunity to meet other students and try to find my place in the world--but what I encountered was so much greater.

For the first time I stepped outside of the metropolitan area which was everything I knew. I spoke to people suffering--no, not suffering--enduring and overcoming poverty. I learned about the destructive practices of the coal industry on the environment, individual health, and the local economies. I was aware that the world was not a fair place--I knew that in my own life-- but I saw vividly for the first time the interconnected pattern that weaves every American individual to the other, how our broken societal compacts inordinately burden those who are already disadvantaged.

From then I devoted myself to service; I felt a responsibility to understand more about inequality, to be an advocate, and to help where I could. This culminated in my service with the Jesuit Volunteer Corps, where this blog first began. I was propelled by the president's call to get involved in the world, I was propelled by the responsibility I felt to make the most of my second chance at health.

The Obama presidency coincided with a time in my life where I was, for the first time, getting the chance to discover and define who I was above and beyond a sick kid. It coincided with my first real experience of being healthy. I saw that progress was difficult and obstructed by hate and narrow mindedness, but I also knew that even the smallest victories were worth fighting for--and every day for the first 18 years of my life I had to find those kind of small victories amidst struggle. I had the chance to see a president who fought for those who struggled--who advocated for the poor and the immigrants, the gay and the sick. It inspired me to figure out how I could advocate for what is right--and it challenged me to go out and discover where I fit, how my life fit into the complex pattern of injustice. I faced the hard truths that though I have struggled in life in many ways, I am also gifted --undeservingly -- with many advantages. And with these advantages come responsibilities.

In 2010, the Affordable Care Act passed, guaranteeing coverage for pre-existing conditions and allowing dependents to stay on their parents' healthcare until the age of 26. As someone who lives with a chronic illness, both of these things were such a weight off my shoulder that I nearly came to tears on multiple occasions--when it passed, when it was challenged, and when it was affirmed. The 26 provision proved to be huge for me, given how hard it had been to find a job. And the fear that I could be denied coverage because I am a sick is a fear that has plagued me since I was a teenager. The relief I felt was like finding out I was in remission all over again.

In the early days of 2016, President Obama passed executive orders to increase gun safety measures. It was this, following yet another senseless attack, that inspired me to write to President Obama. I had never written any such letter, and I certainly did not expect the president to read it. I don't know why I wrote it; I guess it had begun to dawn on me that his term was ending and I wanted to say thanks, even if I was shouting into the wind.

I thanked him for his fight to curb gun violence--I told him that my parents were educators, and so was my fiancé--and the NRA and the GOP supposition that we should arm teachers to protect kids horrified and sickened me. I thanked him for working to make our country safer. I also let him know that while I admired so much of what he did, I was disappointed in many of his education policies.

I thanked him for the Affordable Care Act. I told him how much peace of mind it brought me, a young adult who had been without a job for nearly a year, a person who lived with a chronic illness for his whole life. I told him that this legislation was a weight off my shoulder that I did not even know I carried.

I told him that his message of hope and optimism helped inspire me to serve in the Jesuit Volunteer Corps, where I encountered young men who deserved more opportunity, many of whom are the children of immigrants. I told him that I  appreciated his work to provide clemency for thousands of undocumented immigrants and opportunities for DREAMers. In Los Angeles, I also became keenly aware of the importance of representation in media, as I wrote about on this blog, and I recognized how much it meant for many of those students to see a president who liked like them in the office.

Months passed and I totally forgot I had sent that letter. And in September I received a FedEx envelope from the White House. I assumed it was a form letter. It was not.

This letter, maybe actually by Barack Obama, maybe not (I'll choose to believe it is) encapsulates so much about these last 8 years of my life. From that empty room in East Residence Hall on the night of my first election, to Casa Dorothy Kazel the night of Obama's second victory, sitting around the living room TV with my fellow Jesuit Volunteers, to now: months away from the future with the woman I love that I did not dare imagine that cold November night.

I'll hold this letter and treasure it for as long as I live; it is a message from a person that inspired me to dream beyond cynicism, to serve and to advocate, and who fought to provide me my right to be healthy.

For all that you have done for me and for this country: Thanks, Obama.

The Questing Beast

The morning of September 11, 2001 I was in my seventh grade geography class. Our teacher came in a few minutes late, and announced very simply, “Well, it's a bad day for this country. Someone flew a plane into the World Trade Center.” A room full of 12 year olds was silent. We were too young to process this. But we tried. My first thought was, “the same one we were just in last year for a field trip?” I had to contextualize it in my life. A thing that I had been in fairly recently had just been destroyed. The why of it all was completely beyond me at the time. It continues to be beyond me. The shock of it was clear on Mr. Forney’s face. Like many things in my young life, I had experienced far too little to realize how abnormal it all was. I just took it as a fact.

Somehow, we went through a full day. Some people were taken out of school early. I was not. I am not sure how our teachers made it through the day. I cannot conceive of what it took for Mr. Forney to step into that classroom, knowing that a world changing event this was, how horrific these events were. How do you walk your young students through hearing and digesting news you yourself cannot fathom? How do you explain terrorism? I have grown to admire Mr. Forney for his handling of this event. As the days went on, he continued to help us through it. I suppose he figured that, as the person responsible for teaching us about the world in which we lived, it was his responsibility to help us understand this strange moment. He walked through the fear, anger, and confusion with us. When a student suggested that when the people responsible were found (did we know it was Bin Laden yet?) we should put them in an airplane and crash it. Forney shut this down. We as a nation were better than that, he told us. We do not partake in cruel and unusual punishment. He empathized with the anger this student felt; I am sure he felt it too.

Following the events, he decided he was going to change the curriculum. When it was clear that this was terrorism, and war was, for some reason, called on Iraq, Mr. Forney felt  that it was important for us to understand the culture of the Middle East. He did not want us to demonize the region, or to hate and fear it for no reason. It was critical that we had some kind of knowledge about this area of the world that continues to impact our foreign policy and world events. It was not something he had to do--but as an educator, he decided it was his moral obligation.

Immediately, the rhetoric was that the world was changed. But I felt the same. My world was not changed. I felt ashamed that I did not buy into the sudden surge of patriotism and renewed flag waving. One of my teachers had us sit and listen to the maudlin song “Where Were You When the World Stopped Turning?” by Alan Jackson. It was too on the nose, too simple. I was embarrassed by it.

I did not feel that I had been personally affected by this day. I did not know anyone in New York that day, I did not have a connection to the city at all. Not until very recently did I realize I was and continue to be touched by it every single day. So was every other adolescent who came of age in a world scarred by the sudden absence of the Twin Towers in fire and smoke, like the world’s darkest magic trick.

I see it every day in the fear that is peddled about those who are “other.” I  see it in the bombardment of stories of veterans torn apart and disembodied, who return home only to be without home. I see it in the ever further encroachment of our privacy and civil liberties. For those who were teenagers then, the last generation to have lived life before cell phones and the internet, we have seen the promise of infinite knowledge and connection become the looming presence of corporate and government interests sorting through our most private information. I see it in the continued empty flag waving patriotism that demands more war, more martial law, more freedom for the white man to do as he pleases, at the expense of every brown man, woman and child. The cooption of national pride and the national anthem as some kind of slavish devotion to white identity--because ever since 9/11, to be brown, to be turbaned, to be anything but white and Christian and moneyed is to be an affront to American hegemony and its unique brand of Exceptionalism.

Since that day, this America that I love and do not love, has been at perpetual war, has seen the lives of countless men and women taken based upon lies and the premise that the white American Republican virtues of commerce, consumption, and righteous anger should be spread. Our major export has been drone strikes and ammunition--and the lives of our soldiers.

I struggle with the concept of patriotism, because I know that for some it is identified by maudlin country songs about the day the world stopped turning and beer and the idea that we can kill more brown people than any other country--and fuck you, I do what I want. That is American patriotism that we cherish. It is the American patriotism of Donald Trump and Paul Ryan

America’s ideals were not founded upon this idea that might makes right. But we have become King Pellinore--and war is our Questing Beast. War is our eternal hunt, and so we have had to define an “other” to oppose. Over and over. War on drugs. War on terror. War on poverty. War on Christmas. War war war. Just as Pellinore's search for the Beast spanned generations, so too does ours.

From our earliest days, our founders viewed America as a haven for the outsider, George Washington himself opined, “the bosom of America is open to receive not only the opulent and respectable Stranger, but the oppressed and persecuted of all Nations and Religions.”

How can one be proud of a nation that has betrayed every promise it has made? These truths that we claim to hold as self-evident-- that all men are created equal, that they are endowed by their creator with certain inalienable rights, that among them are life, liberty, and the pursuit of happiness-- these truths do not hold. When patriotism is conflated with blind loyalty to morally reprehensible status quo and the premise that strength is to be admired above all, then patriotism has no meaning. This American patriotism is synonymous with American masculinity--it is fragile, aggressive, threatened by that which betrays vulnerability.

Perhaps I cannot buy into this brand of American masculine patriotism, because I have struggled with this toxic masculinity for much of my life. I have stood outside it, wondered at it, been hurt by it, tried and failed to attain it, and been destroyed by it. This toxic masculinity is fueled by the persecution of the weak by the strong. This masculinity is affronted and appalled by that which it does not recognize in itself. Because this masculinity is embraced by men who have never been betrayed by their bodies, by their society, the sick and the poor disgust them. To be sick or to be poor or to be Muslim or gay is simply the result of weakness and disorder.

This masculinity views justice as a set of transactions which presuppose they deserve to be rich, to be powerful, to be strong. And when they see those who are not rich, or powerful, or strong, they oppose it. Not as an abstract set of societal forces, but as a group of people who must be set opposite of them. And because these men have never felt their bodies fall apart and weaken them, have never had their stomach cut open and their insides removed, they see it as justice for the sick to pay their own way. These men received the strength and the health that they deserved, and so they do not need to worry about the cost of a failing body. They work for their money, and how dare the sick and poor who do not deserve their money insist that the health of the individual is the burden of the nation.

Their money is their strength, and those who are on the street deserve their lot. By God, they pulled themselves up by their bootstraps and bought a house and got a job. So woe upon the millennials born into the worst economic downturn since the second World War, for they are not responsible enough to afford a home. They do not deserve it if they couldn’t afford to pay for their unjustifiably inflated college tuition. 

And damn the poor black man, condemned to Camden and Kensington, Watts and Compton, who did nothing but be born the wrong skin color in the wrong part of town. Damn the heretic Muslim, for their religion is a religion of death. Not at all like their supply side Christianity, that tells them, “woe to those who are poor, for the rich shall inherit the earth.” Their Christianity is the religion of the Chosen, and those who are not Chosen are enemies--and their Jesus compels them to hate their enemy, not to love them as they themselves wish to be loved.

This patriotic masculinity founded upon the idea that men should be strong and opposed to anything that is not is the same force that empowered the boys who locked me out of school in the rain and laughed when they finally let me in, wet and ashamed. It was their masculine duty to  be opposed to me because I was weak and small and did not like sports. I was an unacceptable reminder to them that their health and strength was not deserved, and so they tortured me, reminded me every day that I was different and less than them. My body did not work correctly, though they did not know that, and so I was marked at an early age and set aside as a different breed. I was not tough or masculine, and so I was defined as tiny and short and weird. Those masculine boys set the rules, and so the girls followed, and so I was alone. This masculinity meant that those boys who reveled in my quarantine were not punished, because that is how teenage boys behave, and so the teachers and the counselors and the principals confirmed that might, indeed, does make right.

And so our country enacts laws and conducts diplomacy in this masculine way and calls it patriotism. Strength is the same as knowledge, might the same as justice.

I cannot love this nation. I cannot wave a flag or support a government that conflates patriotism with the domination of the weak by the strong.

But if patriotism is linked to the values that were laid out in those earliest days--values that even those who wrote it knew that they could not live up to--then patriotism means questioning and dissent. It means standing outside of this destructive code of masculinity and saying that our nation’s strength has always been in its unfinished promise that those who reside in this place deserve the liberty to live their life without persecution. This justice--a justice that says our resources are to be apportioned so that those who are born with less can provided an opportunity for more--this justice is worth calling patriotism. It is a patriotism that says this is the land of the free, and I have the right to speak out against policies and politicians who try to make it otherwise.It is a patriotism that says “America is better than this, we do not believe in cruel and unusual punishment.” And that does not make me Unamerican or less of a man; it makes me patriotic, and it makes me fully human. And you cannot call me, or my fellow Americans--the black, the Muslim, the Latino, the homeless, the gay, the woman, the sick-- less than. You cannot wage your endless war upon us. We are this tapestry of a nation just as they are, and that is an America that I can love. That is a maudlin song that I can sing, even if it may never be in my lifetime.