Morgan Bolt's Blog, page 7
May 11, 2017
The Specter of the AHCA
Since I was diagnosed with Desmoplastic Small Round Cell Tumors in 2014 I have endured more rounds of chemotherapy than I can count, multiple stints of radiation treatment, over a dozen surgical procedures, and even an experimental clinical trial. Yet none of that filled me with as much dread or despair as the American Health Care Act that passed the House of Representatives last week.
Previously I have only needed to focus on dealing with whatever phase of treatment I was in, whether it was the constant battle to eat enough during chemotherapy, the physical struggles of recovering from major surgeries, or even finding that difficult balance between fighting to stay alive and taking time to really live. Now overshadowing all of that is the specter that soon my health issues might make it impossible for me to receive the healthcare my life depends upon.
Thanks to the random glitch that caused my extremely rare cancer I now have multiple pre-existing health conditions. These already add enough difficulty to my life without the added threat of making the care I need financially unattainable. The malevolent disregard for those of us with pre-existing conditions embodied in the American Health Care Act is an insult to those of us who simply are not profitable to insure and most need healthcare to have a fighting chance at just staying alive.
Last Thursday as I lay in a hospital bed following a procedure to deal with ongoing complications from my most recent surgery I was not worried about the fresh hole punched through my belly or why my abdomen continues to fill with fluid. Instead I watched on TV as group of smug-looking lawmakers celebrated prematurely that my health issues could soon leave me without affordable coverage options. And that was a worse feeling than any I’ve experienced in my two-and-a-half years of intense, ongoing cancer treatment.
Previously I have only needed to focus on dealing with whatever phase of treatment I was in, whether it was the constant battle to eat enough during chemotherapy, the physical struggles of recovering from major surgeries, or even finding that difficult balance between fighting to stay alive and taking time to really live. Now overshadowing all of that is the specter that soon my health issues might make it impossible for me to receive the healthcare my life depends upon.
Thanks to the random glitch that caused my extremely rare cancer I now have multiple pre-existing health conditions. These already add enough difficulty to my life without the added threat of making the care I need financially unattainable. The malevolent disregard for those of us with pre-existing conditions embodied in the American Health Care Act is an insult to those of us who simply are not profitable to insure and most need healthcare to have a fighting chance at just staying alive.
Last Thursday as I lay in a hospital bed following a procedure to deal with ongoing complications from my most recent surgery I was not worried about the fresh hole punched through my belly or why my abdomen continues to fill with fluid. Instead I watched on TV as group of smug-looking lawmakers celebrated prematurely that my health issues could soon leave me without affordable coverage options. And that was a worse feeling than any I’ve experienced in my two-and-a-half years of intense, ongoing cancer treatment.
May 2, 2017
In Response to Representative Mo Brooks
If the name ‘Mo Brooks’ doesn’t make you cringe, then start by watching this interview here: Let’s review that appallingly unempathetic barrage, shall we? He states that “those people who lead good lives, they’re healthy” and further claims that those without pre-existing conditions have “done the things to keep their bodies healthy.” While I am glad Representative Brooks has never encountered significant health issues and as such has been able to remain so woefully ignorant of how human health actually works, this level of idiocy should have no place among the people shaping healthcare policy. People shouldn’t have to personally get cancer to realize that people just get sick sometimes, but alas, it seems this is the state of things right now. If it isn’t obvious, there are a couple problems with Representative Brooks’ statements.First, one’s health has nothing to do with whether one has “led a good life” or not. Health and sickness are not handed out according to some moral point-keeping system. Sometimes illnesses just happen. Medically and scientifically this is simply a fact. My cancer has no known risk factors. It’s just a random glitch in DNA transcription. In fact, the only thing I’ve done in my life to be at a greater-than-normal risk for cancer is receive cancer treatment. That doesn’t mean that, should I develop a secondary cancer down the road, I didn’t “lead a good life” or “do the things to keep my body healthy.” Maybe you think I AM morally responsible for my cancer though. I was diagnosed at 23 after all, and certainly didn’t live a morally perfect life those 23 years. So what about the babies and children I know at my hospital in New York City? These kids got cancer at young ages. Some were even born with cancer. Can you really blame them? Their parents?I’ve seen too many people who do. People who ignore what we know medically point to Bible verses taken out-of-context to justify such appalling notions. But they ignore the teachings of Jesus, who specifically countered such ideas multiple times. I’ve written before about Matthew 5:45, in which Jesus explains that sun and rain come to the just and unjust alike. In short, it means that the systems of this world do not consider the morals of the people they affect; they simply operate as God created them to. John 9 provides another, even clearer rebuttal of the destructive thinking that blames the ill for their illnesses. This passage tells of Jesus and his disciples encountering a man who was blind from birth. The disciples ask “who sinned, this man or his parents, that he was born blind?” Jesus refutes their thinking, answering “it was not that this man sinned, or his parents.” There is simply no justifying a belief that people are morally responsible for their own health issues. Not from a Christian perspective, at least.Now, I’ll concede that our life choices can influence our health, to an extent. Sometimes lifestyle choices can contribute to some health issues, though certainly not everyone who drinks heavily is equally likely to develop liver problems, not everyone who smokes is equally likely to get lung cancer, and not everyone who exercises regularly will avoid having a heart attack. Nevertheless it can be true that our decisions and lifestyles play a role in determining our health, along with a host of other factors outside of our control. But even when someone’s actions have negatively impacted their health, should we really punish people who for one reason or another were unable to make the healthiest choices during their life? Apparently Representative Brooks and others backing this current “healthcare” proposal think so. I disagree.Another problem with Representative Brooks’ statements is that “pre-existing conditions” are not necessarily the same as “health issues” as we think of them. All kinds of things like pregnancy or having donated a kidney to save another’s life were considered pre-existing conditions before the Affordable Care Act came along. Does Representative Brooks seriously think that women who choose to be mothers or those who give their own kidneys to save the life of another don’t “lead good lives?” Does he realize that these sorts of things will be financially punished under the legislation he supports? I actually hope not, and that he is just sadly ignorant of the legislation he backs. It’s easier to understand that way.Now to be fair, Brooks does say later in the interview that many people with pre-existing conditions have them through no fault of their own. But that simply does not reconcile with his earlier statements. Worse, if he does understand that people often are not at fault for their health issues, then he simply does not know or care that the legislation he supports unfairly punishes people who happen to get sick by making the care they need unaffordable. Whatever the case, this latest attempt to gut consumer protections for those who need healthcare the most is at best misguided and at worst a monstrously Darwinian attempt to save those who are fortunate enough to be healthy a few bucks at the expense of the lives of those with health problems. I for one will fight such evil as long as I can.
May 1, 2017
Ableism and those Terrible CDC Anti-Smoking Advertisements
I didn’t even know what “ableism” was a couple years ago. The first time I encountered the word I initially thought it was pronounced “AY-blee-ism” and had to look it up. But throughout my cancer treatment I’ve encountered it more and more, or at least gotten better at recognizing it. And wow, is it everywhere.
It’s hard to blame anyone too much for this. If you go through life without ever having to consider your health or physical abilities, it’s easy to take those for granted. It’s easy, perhaps almost the default for those without disabilities, to develop dangerous ways of viewing health and physical ability. It seems to take either concerted intentionality or some significant change in health to remedy. But whatever the reason, there’s no denying ableism is an extremely pervasive problem in our society.
One of the most glaring examples of ableism I can think of comes from a deeply disturbing ad series put out by the Centers for Disease Control and Prevention concerning smoking. The general theme of most of them is that you shouldn’t smoke because smoking causes a myriad of health problems. There’s nothing wrong with that message, so far. But the ads often go further than that, deeper into more troubling territory. In one ad, a man on oxygen watches helplessly as his wife struggles with the lawnmower, the obvious implication being that he is no longer a “real man” or “useful,” due to his health. Another implies that if you simply don’t smoke, you’ll be guaranteed good health. If you don't know what I'm talking about, watch the most troubling and blatantly ableist one here. That’s right, he said “it’s hard to serve your country when you’re too weak to put on your uniform.” As someone who has needed help dressing in the last month during the aftermath of some major surgeries, I find this incredibly problematic.
The implication that people can only serve their country—or serve any purpose and be a useful member of society—if they are physically fit and healthy dehumanizes those with health issues and ignores the productivity and useful contributions from the differently abled. Stephen Hawking comes to mind, for one. Worse than that, it attaches value on one’s ability to be productive and serve a function others find useful. I reject such thinking utterly. Human value comes not from people’s abilities or perceived usefulness. Our value is inherent as beings fashioned in the image of God, whatever our particular gifts, talents, and abilities may be.
Yes, I understand the point of this ad campaign. Don’t smoke so you don’t have to deal with difficult health issues. That’s fine. It’s disrespectful towards those of us whose serious health issues have nothing at all to do with lifestyle choices like smoking, it ignores the fact that many people smoke because they’re unable to quit and only started it because of intense societal pressures, and it implies that health issues by definition ruin your life and make you less valuable, but the ad campaign isn’t completely devoid of redeeming qualities. If even one person stays away from smoking because of these ads and as such avoids unnecessary physical suffering down the road, then that’s great. I just think there are better ways to discourage people from smoking than to dehumanize those with health problems.
It’s hard to blame anyone too much for this. If you go through life without ever having to consider your health or physical abilities, it’s easy to take those for granted. It’s easy, perhaps almost the default for those without disabilities, to develop dangerous ways of viewing health and physical ability. It seems to take either concerted intentionality or some significant change in health to remedy. But whatever the reason, there’s no denying ableism is an extremely pervasive problem in our society.
One of the most glaring examples of ableism I can think of comes from a deeply disturbing ad series put out by the Centers for Disease Control and Prevention concerning smoking. The general theme of most of them is that you shouldn’t smoke because smoking causes a myriad of health problems. There’s nothing wrong with that message, so far. But the ads often go further than that, deeper into more troubling territory. In one ad, a man on oxygen watches helplessly as his wife struggles with the lawnmower, the obvious implication being that he is no longer a “real man” or “useful,” due to his health. Another implies that if you simply don’t smoke, you’ll be guaranteed good health. If you don't know what I'm talking about, watch the most troubling and blatantly ableist one here. That’s right, he said “it’s hard to serve your country when you’re too weak to put on your uniform.” As someone who has needed help dressing in the last month during the aftermath of some major surgeries, I find this incredibly problematic.
The implication that people can only serve their country—or serve any purpose and be a useful member of society—if they are physically fit and healthy dehumanizes those with health issues and ignores the productivity and useful contributions from the differently abled. Stephen Hawking comes to mind, for one. Worse than that, it attaches value on one’s ability to be productive and serve a function others find useful. I reject such thinking utterly. Human value comes not from people’s abilities or perceived usefulness. Our value is inherent as beings fashioned in the image of God, whatever our particular gifts, talents, and abilities may be.
Yes, I understand the point of this ad campaign. Don’t smoke so you don’t have to deal with difficult health issues. That’s fine. It’s disrespectful towards those of us whose serious health issues have nothing at all to do with lifestyle choices like smoking, it ignores the fact that many people smoke because they’re unable to quit and only started it because of intense societal pressures, and it implies that health issues by definition ruin your life and make you less valuable, but the ad campaign isn’t completely devoid of redeeming qualities. If even one person stays away from smoking because of these ads and as such avoids unnecessary physical suffering down the road, then that’s great. I just think there are better ways to discourage people from smoking than to dehumanize those with health problems.
April 18, 2017
Quick Update
It's been a while since I've written here, so I think an update on how I'm doing is long overdue!
I had surgery on Thursday the 6th to remove the last remaining nodes of concern showing up on my scans. This surgery went pretty well, and the radiologist was able to perform intraoperative radiation treatment on a few of the spots, which is great! Some of the nodes they removed were cancerous, and a couple were not, which isn't terribly surprising, but the main idea is they got everything that seemed suspicious. It took six days before I was recovered enough to leave the hospital, and in that time I watched all 7 Fast and Furious movies for the first time (thanks to my pastor who lent them to me!). They were fun, ridiculous, and surprisingly good at times; definitely the right kind of movie to watch during a surgery recovery! Though I got out of the hospital last Wednesday I had to go back in on Thursday due to a buildup of fluid in my abdomen. They drained 1.5 liters and I felt instantly better. Saturday evening I went back in to the hospital for the same exact thing. They weren't able to drain the fluid until Sunday morning, but it was the same amount again, and so this second time they left a drain in. The fluid has been slowing down a little I think, though the drain will have to stay in for some time yet. I should be able to go home tomorrow though since I can have the drain taken out back home once it slows down enough. For now, I'm enjoying the NHL playoffs, trying to get a little writing done, and resting and recovering.
I had surgery on Thursday the 6th to remove the last remaining nodes of concern showing up on my scans. This surgery went pretty well, and the radiologist was able to perform intraoperative radiation treatment on a few of the spots, which is great! Some of the nodes they removed were cancerous, and a couple were not, which isn't terribly surprising, but the main idea is they got everything that seemed suspicious. It took six days before I was recovered enough to leave the hospital, and in that time I watched all 7 Fast and Furious movies for the first time (thanks to my pastor who lent them to me!). They were fun, ridiculous, and surprisingly good at times; definitely the right kind of movie to watch during a surgery recovery! Though I got out of the hospital last Wednesday I had to go back in on Thursday due to a buildup of fluid in my abdomen. They drained 1.5 liters and I felt instantly better. Saturday evening I went back in to the hospital for the same exact thing. They weren't able to drain the fluid until Sunday morning, but it was the same amount again, and so this second time they left a drain in. The fluid has been slowing down a little I think, though the drain will have to stay in for some time yet. I should be able to go home tomorrow though since I can have the drain taken out back home once it slows down enough. For now, I'm enjoying the NHL playoffs, trying to get a little writing done, and resting and recovering.
April 3, 2017
Love Trumps Hate. So Let's Act Like It.
“A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another. By this all people will know that you are my disciples, if you love one another.” John 13:34-35
By such a litmus test a lot of us are failing to show ourselves as disciples of Christ, myself included. When I think about the discussions I have been part of lately and the conversations I see and hear on the national stage, hatred, not love, is the common theme. To an extent, this seems justified. A significant portion of the country seems to back policies fueled by hatred and fear, and it is only appropriate that Christians fight against this as peacemakers who look to care for the needy and further God’s Kingdom. When hatred spews forth against people for being who they are, for simply belonging to a different sex, race, nationality, religion, or sexual orientation, it is right to stand opposed to such bigotry. Such deplorable prejudices are worthy of contempt. But the individual people who look the other way or even personally hold these prejudices are not.
Far too often I see those with whom I align the closest taking a stand against the people whose ideas we must oppose. And to be honest, I too am often guilty of harboring hatred in my heart towards some people, rather than their words, ideas, or actions. It may seem a subtle difference, but it is an important one. It is the difference between a valid criticism of a terrible, unloving idea and a mere ad hominem attack, for one, but it is far more damaging to our own souls than that. It is the difference between statements like "Matt Walsh IS a despicable person," and “Matt Walsh's continued use of hostile, intentionally controversial rhetoric is despicable and unbecoming of Christians.” It is, at the core, the difference between dehumanizing and hating others—often the very thing we claim to stand against—and remembering that all are made in the Image of God and as such deserve God’s love and compassion.
I have seen many troubling arguments against such a notion. Many claim that things are just too extreme or unprecedented for idealism right now, that too much is at stake to do anything but fight tooth and nail against the destructive changes coming from our president’s administration. “Fight fire with fire,” I hear people say. And part of me agrees with that. I have plenty at stake here personally, and it is tempting to hold a personal hatred for people like Mitch McConnel or Paul Ryan; people who would gleefully make it impossible for me to receive the healthcare I need to have a fighting chance at living a little longer, especially as I face another surgery this week and the prospect of more radiation and chemo in the months ahead. But fighting fire with fire only works with wildfires if there are thousands of acres to burn and you don't mind leaving vast swathes scorched. It is not a good strategy for combatting a house fire, and that's what we have right now. We can’t afford to fight fire with fire, to answer hatred with more hate. If we do that, hatred wins. instead we must snuff out hate with love.
I certainly don't know the best way to answer hatred with love, and I often don't even feel like figuring that out either. I've let my emotions get the better of me at times, and I know I'm guilty of unleashing hatred upon people whose thoughts and speech I find deplorable. But that makes me the very thing I revile. Many times I'm content to express my contempt for other people and their ideas. Sometimes I'm the Pharisee in Luke 18:11. And I am ashamed of that. It is a difficult position, because I don't want to be complicit with racism, sexism, ableism, xenophobia, homophobia, or Islamophobia. But nor do I want to add any more hatred and anger into a world already burning with both. Yes, Jesus flipped tables and shouted, and sometimes there's a time for that. But Jesus also sought out the marginalized and offered them love to counteract the hatred society poured out against them. More to the point, Jesus rebuked as often with a loving, tough question as with a stern word. I should try to as well. We need to ask ourselves how we can truly smother hatred with God's love, not how we can simply show how much we hate hatred. Only by answering hatred with love and compassion can we work for meaningful change.
By such a litmus test a lot of us are failing to show ourselves as disciples of Christ, myself included. When I think about the discussions I have been part of lately and the conversations I see and hear on the national stage, hatred, not love, is the common theme. To an extent, this seems justified. A significant portion of the country seems to back policies fueled by hatred and fear, and it is only appropriate that Christians fight against this as peacemakers who look to care for the needy and further God’s Kingdom. When hatred spews forth against people for being who they are, for simply belonging to a different sex, race, nationality, religion, or sexual orientation, it is right to stand opposed to such bigotry. Such deplorable prejudices are worthy of contempt. But the individual people who look the other way or even personally hold these prejudices are not.
Far too often I see those with whom I align the closest taking a stand against the people whose ideas we must oppose. And to be honest, I too am often guilty of harboring hatred in my heart towards some people, rather than their words, ideas, or actions. It may seem a subtle difference, but it is an important one. It is the difference between a valid criticism of a terrible, unloving idea and a mere ad hominem attack, for one, but it is far more damaging to our own souls than that. It is the difference between statements like "Matt Walsh IS a despicable person," and “Matt Walsh's continued use of hostile, intentionally controversial rhetoric is despicable and unbecoming of Christians.” It is, at the core, the difference between dehumanizing and hating others—often the very thing we claim to stand against—and remembering that all are made in the Image of God and as such deserve God’s love and compassion.
I have seen many troubling arguments against such a notion. Many claim that things are just too extreme or unprecedented for idealism right now, that too much is at stake to do anything but fight tooth and nail against the destructive changes coming from our president’s administration. “Fight fire with fire,” I hear people say. And part of me agrees with that. I have plenty at stake here personally, and it is tempting to hold a personal hatred for people like Mitch McConnel or Paul Ryan; people who would gleefully make it impossible for me to receive the healthcare I need to have a fighting chance at living a little longer, especially as I face another surgery this week and the prospect of more radiation and chemo in the months ahead. But fighting fire with fire only works with wildfires if there are thousands of acres to burn and you don't mind leaving vast swathes scorched. It is not a good strategy for combatting a house fire, and that's what we have right now. We can’t afford to fight fire with fire, to answer hatred with more hate. If we do that, hatred wins. instead we must snuff out hate with love.
I certainly don't know the best way to answer hatred with love, and I often don't even feel like figuring that out either. I've let my emotions get the better of me at times, and I know I'm guilty of unleashing hatred upon people whose thoughts and speech I find deplorable. But that makes me the very thing I revile. Many times I'm content to express my contempt for other people and their ideas. Sometimes I'm the Pharisee in Luke 18:11. And I am ashamed of that. It is a difficult position, because I don't want to be complicit with racism, sexism, ableism, xenophobia, homophobia, or Islamophobia. But nor do I want to add any more hatred and anger into a world already burning with both. Yes, Jesus flipped tables and shouted, and sometimes there's a time for that. But Jesus also sought out the marginalized and offered them love to counteract the hatred society poured out against them. More to the point, Jesus rebuked as often with a loving, tough question as with a stern word. I should try to as well. We need to ask ourselves how we can truly smother hatred with God's love, not how we can simply show how much we hate hatred. Only by answering hatred with love and compassion can we work for meaningful change.
March 27, 2017
March 27th, 2017
Over two weeks have passed since my last surgery, but I'm still very much recovering from it. The biggest hurdles left to overcome at this point are side-effects more than anything else. My various incision sites are all healing well, and my right shoulder—which has a cool new scar from the thoracotomy—is getting less sore and becoming increasingly mobile. I'll need to continue stretching and exercising it, but it's progressing well for the most part. The tougher challenges are rib soreness and a weird, superficial numbness around my ribs and across my chest. The combination of the two means that my breathing has a lot further to go yet; normally I can easily inhale 4+ liters, but right now I’m barely able to get 2. It’s definitely a work in progress still.
But at least I can focus on surgery recovery and, for now, don’t have to worry about the prospect of losing healthcare coverage. I can remain on my $40,000 a month chemo and continue to incur an average $1million a year in treatment costs without getting cut off for being too expensive. I can again look forward to someday completing treatment, working, and buying my own insurance without fear of being rejected for my numerous pre-existing conditions.
The news that the AHCA would not even be put up for a vote elicited far more than a simple sigh of relief from me, though my joy was tempered somewhat by the knowledge that a key part of its failure came from numerous representatives who thought it didn’t go far enough in stripping consumer protections that enable me to have at least a semblance of a fighting chance against my cancer. It boggles my mind, but such is the world in which we live, and such is the consequences of rampant selfishness cheaply-veneered as virtuous self-reliance and personal responsibility, rather than an emphasis on caring for others and recognizing our shared responsibilities. For now though, I’m going to take a little break from thinking about the possible destruction of healthcare in this country and work on my incentive spirometer. Next goal: 2.5 liters.
But at least I can focus on surgery recovery and, for now, don’t have to worry about the prospect of losing healthcare coverage. I can remain on my $40,000 a month chemo and continue to incur an average $1million a year in treatment costs without getting cut off for being too expensive. I can again look forward to someday completing treatment, working, and buying my own insurance without fear of being rejected for my numerous pre-existing conditions.
The news that the AHCA would not even be put up for a vote elicited far more than a simple sigh of relief from me, though my joy was tempered somewhat by the knowledge that a key part of its failure came from numerous representatives who thought it didn’t go far enough in stripping consumer protections that enable me to have at least a semblance of a fighting chance against my cancer. It boggles my mind, but such is the world in which we live, and such is the consequences of rampant selfishness cheaply-veneered as virtuous self-reliance and personal responsibility, rather than an emphasis on caring for others and recognizing our shared responsibilities. For now though, I’m going to take a little break from thinking about the possible destruction of healthcare in this country and work on my incentive spirometer. Next goal: 2.5 liters.
March 13, 2017
Compassionate Healthcare
Probably the biggest source of stress in my life is the raging ongoing healthcare debate in this country. Perhaps you find that odd, since cancer represents a much more tangible threat to my life. After all, I’m writing this from a hospital room, having had surgery last week Thursday, another surgery Friday, and two smaller procedures in the time between those operations. I need at least one more surgery yet, which I’ll get in a couple weeks, and the end of treatment is nowhere in sight yet. But that doesn’t bother me as much as the specter of an impending healthcare disaster.
Right now I know I can get whatever treatment my doctors prescribe, be it more chemo, more radiation, more surgery, or, as it seems right now, all of the above. But major upheaval and disruption—not to mention outright destruction of consumer protections—could make the life-saving care I and millions like me need unattainable. For me healthcare is so intensely personal that I cannot comprehend how so many people have reduced this issue to numbers and monetary values.
The national conversation about healthcare tends to start from a perspective of costs. How fair current systems are, who should pay how much, and a general spirit of complaint that healthcare is too expensive are dominant themes. Simply put this is the wrong starting point. We need to begin by considering how we might craft a compassionate healthcare system that gives coverage to everyone, a system in which none of us, especially those who are most marginalized and in need, fall through the cracks. Figuring out the most fair and cost-effective way to pay for such a system should come second. Obviously any system we choose will have to be financially viable, and I don’t mean to dismiss financial concerns. Finances will ultimately make or break any system. But finances should not be the primary foundation and focus of our healthcare system. Covering people should be.
Too often though covering people comes secondary to saving money. Giving some people the choice to spend less at the expense of covering those who are not profitable for insurance companies is—somehow—an acceptable tradeoff, according to many. This is despicable in and of itself. But the fact that most of the people most intent on prioritizing saving money over saving lives claim to be Christians is irreconcilable.
Jesus himself said that “you cannot serve God and money” (Matthew 6:25), while the greatest commandments given to us are to love God and love others as ourselves (Mark 12:29-31). To value money more than the lives of others blatantly stands opposed to Jesus’ central message, example, and heart. Christianity should provide us with a deeper well of love for us to draw from when we deal with others. We can and should tap into the infinite source of God's love at all times, especially when our own capacity to love others runs dry. Sadly though much of what I’ve seen and experienced in the debates surrounding healthcare has been quite the opposite.
I’ve seen the most vocal Christians make some of the most hateful and hurtful statements while those of unknown, other, or no religious affiliation have been some of the most gracious and compassionate people, both in the national conversation and in discussions I’ve personally been part of. I hope and pray that all who strive to follow Christ will see this profoundly troubling disconnect and get back in touch with God’s heart, a heart of love for all people.
Right now I know I can get whatever treatment my doctors prescribe, be it more chemo, more radiation, more surgery, or, as it seems right now, all of the above. But major upheaval and disruption—not to mention outright destruction of consumer protections—could make the life-saving care I and millions like me need unattainable. For me healthcare is so intensely personal that I cannot comprehend how so many people have reduced this issue to numbers and monetary values.
The national conversation about healthcare tends to start from a perspective of costs. How fair current systems are, who should pay how much, and a general spirit of complaint that healthcare is too expensive are dominant themes. Simply put this is the wrong starting point. We need to begin by considering how we might craft a compassionate healthcare system that gives coverage to everyone, a system in which none of us, especially those who are most marginalized and in need, fall through the cracks. Figuring out the most fair and cost-effective way to pay for such a system should come second. Obviously any system we choose will have to be financially viable, and I don’t mean to dismiss financial concerns. Finances will ultimately make or break any system. But finances should not be the primary foundation and focus of our healthcare system. Covering people should be.
Too often though covering people comes secondary to saving money. Giving some people the choice to spend less at the expense of covering those who are not profitable for insurance companies is—somehow—an acceptable tradeoff, according to many. This is despicable in and of itself. But the fact that most of the people most intent on prioritizing saving money over saving lives claim to be Christians is irreconcilable.
Jesus himself said that “you cannot serve God and money” (Matthew 6:25), while the greatest commandments given to us are to love God and love others as ourselves (Mark 12:29-31). To value money more than the lives of others blatantly stands opposed to Jesus’ central message, example, and heart. Christianity should provide us with a deeper well of love for us to draw from when we deal with others. We can and should tap into the infinite source of God's love at all times, especially when our own capacity to love others runs dry. Sadly though much of what I’ve seen and experienced in the debates surrounding healthcare has been quite the opposite.
I’ve seen the most vocal Christians make some of the most hateful and hurtful statements while those of unknown, other, or no religious affiliation have been some of the most gracious and compassionate people, both in the national conversation and in discussions I’ve personally been part of. I hope and pray that all who strive to follow Christ will see this profoundly troubling disconnect and get back in touch with God’s heart, a heart of love for all people.
February 27, 2017
February 27th, 2017
Earlier today I wrote out an entire blog post about my recent scan results and how I felt about them and the next step of treatment, but now it’s somewhat irrelevant! The scan results didn’t change of course, so I’ll leave the section about them here, but the plan of treatment isn’t what we thought it would be so I’m rewriting that paragraph. And that’s a good thing. The results were much the same as the last several scans now, with mixed news that mostly isn’t great. In the “good news” category, there still are no new lesions. I haven’t had any new spots show up since…last April, I believe? Just keeping this kind of cancer from spreading is a success in and of itself, and I need to remember that more. Moving towards more mixed and discouraging scan results, most of the lesions they’re keeping tabs on grew a little. Not by much, but it’s still a trend over the last few scans. A couple of spots shrank, which is a little odd since most of them grew, but every spot became a little more PET avid, that is, more active and quick to uptake nutrients (and, presumably, to grow). So, the current chemo I'm doing isn't exactly working wonderfully, but it doesn’t seem to be becoming a frustrating cycle.
But we got a phone call this afternoon and I’m penciled in for another tumor resection surgery this Friday! I don’t know too many details yet, but it probably will be laparoscopic in my chest and may involve reopening part of my main incision scar that runs from my sternum to my pelvis. I’m not sure yet. They’ll confirm everything tomorrow, so we don’t know exactly what it’ll entail or if it will for sure happen Friday, but it most likely will. This is great news. For one, surgery has always been my favorite of all the treatments I’ve done. Second, I was getting pretty frustrated with the chemo I’ve been on, since I don’t like chemo and it was only keeping things somewhat in check rather than moving towards a clear scan like we wanted. While on the one hand it isn’t so good that these spots have grown large enough for surgery, it’s also great that I can get them surgically removed. I’ll just focus on being thankful that I qualify for more surgery and hope for the best!
In the meantime, I’m going to get back into writing more and spending less time working on getting a publisher. It’s just not healthy for me to neglect my chief creative outlet and main hobby while wallowing in the quagmire of unanswered emails and drawn-out rejections that is the publishing process. I get more rejections—which are always better than never hearing back—nearly weekly. Lately I’ve become more and more discouraged with the length of the publishing process, and I’m looking into more options like smaller, independent presses. We’ll see what comes of it, but for now I’m just going to take it easy with working towards finding a publisher and enjoy writing more.
But we got a phone call this afternoon and I’m penciled in for another tumor resection surgery this Friday! I don’t know too many details yet, but it probably will be laparoscopic in my chest and may involve reopening part of my main incision scar that runs from my sternum to my pelvis. I’m not sure yet. They’ll confirm everything tomorrow, so we don’t know exactly what it’ll entail or if it will for sure happen Friday, but it most likely will. This is great news. For one, surgery has always been my favorite of all the treatments I’ve done. Second, I was getting pretty frustrated with the chemo I’ve been on, since I don’t like chemo and it was only keeping things somewhat in check rather than moving towards a clear scan like we wanted. While on the one hand it isn’t so good that these spots have grown large enough for surgery, it’s also great that I can get them surgically removed. I’ll just focus on being thankful that I qualify for more surgery and hope for the best!
In the meantime, I’m going to get back into writing more and spending less time working on getting a publisher. It’s just not healthy for me to neglect my chief creative outlet and main hobby while wallowing in the quagmire of unanswered emails and drawn-out rejections that is the publishing process. I get more rejections—which are always better than never hearing back—nearly weekly. Lately I’ve become more and more discouraged with the length of the publishing process, and I’m looking into more options like smaller, independent presses. We’ll see what comes of it, but for now I’m just going to take it easy with working towards finding a publisher and enjoy writing more.
February 20, 2017
February 20th, 2017
I finished another cycle of chemo Wednesday, which means I’m weary and have a couple of spots in my mouth that want to turn into sores but are held at bay, for now, by Biotène® mouthwash. This week I’ll be back in New York City for another set of scans on Thursday. If you feel like you’re re-reading an old blog post of mine, so far you pretty much are. My treatment lately has been a repetitive rhythm of chemo on Wednesdays and scans every couple months, always on a Thursday. This upcoming scan most likely will not be great. It seems probably that my current chemo treatment isn’t keeping my disease stable and we’ll have to change things up, perhaps switching chemo or trying another surgery or round of radiation. Maybe all of the above. Again. We’ll get the scan results by Monday, so I’ll write about that in next week’s post.
In addition to finishing another round of chemo I’ve continued slogging through the process of finding an agent to represent my books, though my disillusionment with the entire publishing process continues to grow. Just today I found an agency that requires prospective authors to first pitch their work to one of the authors they represent and secure a referral before pitching your work to an agent. In other words, you essentially need an agent just to get an agent, much less a publisher. I’m sure this is a frustrating process for anyone, but the added specter of another bad scan looming doesn’t exactly help me feel like waiting years for anything to happen with my books. If I don’t make some headway towards getting published soon I’m going to start researching other avenues, though I know I lack the resources to successfully self-publish. I’ll figure something out. I hope.
The last week hasn’t been all doom and gloom though. I’ve enjoyed the unseasonably warm weather lately, playing a round of disc golf at the local park and attending a town hall meeting for my representative, which was held outside due to the size of the crowd that showed up. It was an enlightening experience, and an encouraging one too. Seeing democracy in action up close outside of Election Day was heartening, as was the fact that a politician in this country can stand surrounded by a couple hundred unhappy constituents without any fear for safety. The dialogue was not always entirely respectful or especially constructive, but it wasn’t exactly baleful or fruitless either. Overall, it reinforced a lesson I’ve been learning.
I asked my representative about healthcare, specifically why he saw the need to scrap the Affordable Care Act and start building a replacement from scratch, rather than adjust and fix the current system. I was ready, I thought, for anything, and had thought through a dozen retorts to as many possible replies. I was not prepared for him to ask me what I thought we should do to fix it though. I don’t honestly remember what I answered – I have several ideas about healthcare, and I’ve been in contact with his office about them, meeting in-person with his District Director and, at her request, emailing my thoughts and suggestions on the most-current draft of the healthcare reform bill under consideration right now. But in that moment I was so surprised to have a question thrown back at me that I doubt I made much of a compelling case for anything, other than saying that ideally we’d all enjoy universal health coverage and this whole discussion would be needless.
It hammered home an important lesson, more than anything else I’ve experienced so far has. Productive discourse doesn’t happen when we yell at one another or when we angrily accuse others of misdeeds, however accurately. It doesn’t happen when we ask questions we hope will trap others. It doesn’t happen when we are prepared only to accuse and attack. Constructive conversations are only possible when both sides are willing to ask questions of the other, and most importantly, to listen to the answers, however strongly they dislike the reply. Sure, there are times to yell. There are times when shock and anger are the only proper response. But these instances are fewer and further between than any of us would like to admit, myself included.
In addition to finishing another round of chemo I’ve continued slogging through the process of finding an agent to represent my books, though my disillusionment with the entire publishing process continues to grow. Just today I found an agency that requires prospective authors to first pitch their work to one of the authors they represent and secure a referral before pitching your work to an agent. In other words, you essentially need an agent just to get an agent, much less a publisher. I’m sure this is a frustrating process for anyone, but the added specter of another bad scan looming doesn’t exactly help me feel like waiting years for anything to happen with my books. If I don’t make some headway towards getting published soon I’m going to start researching other avenues, though I know I lack the resources to successfully self-publish. I’ll figure something out. I hope.
The last week hasn’t been all doom and gloom though. I’ve enjoyed the unseasonably warm weather lately, playing a round of disc golf at the local park and attending a town hall meeting for my representative, which was held outside due to the size of the crowd that showed up. It was an enlightening experience, and an encouraging one too. Seeing democracy in action up close outside of Election Day was heartening, as was the fact that a politician in this country can stand surrounded by a couple hundred unhappy constituents without any fear for safety. The dialogue was not always entirely respectful or especially constructive, but it wasn’t exactly baleful or fruitless either. Overall, it reinforced a lesson I’ve been learning.
I asked my representative about healthcare, specifically why he saw the need to scrap the Affordable Care Act and start building a replacement from scratch, rather than adjust and fix the current system. I was ready, I thought, for anything, and had thought through a dozen retorts to as many possible replies. I was not prepared for him to ask me what I thought we should do to fix it though. I don’t honestly remember what I answered – I have several ideas about healthcare, and I’ve been in contact with his office about them, meeting in-person with his District Director and, at her request, emailing my thoughts and suggestions on the most-current draft of the healthcare reform bill under consideration right now. But in that moment I was so surprised to have a question thrown back at me that I doubt I made much of a compelling case for anything, other than saying that ideally we’d all enjoy universal health coverage and this whole discussion would be needless.
It hammered home an important lesson, more than anything else I’ve experienced so far has. Productive discourse doesn’t happen when we yell at one another or when we angrily accuse others of misdeeds, however accurately. It doesn’t happen when we ask questions we hope will trap others. It doesn’t happen when we are prepared only to accuse and attack. Constructive conversations are only possible when both sides are willing to ask questions of the other, and most importantly, to listen to the answers, however strongly they dislike the reply. Sure, there are times to yell. There are times when shock and anger are the only proper response. But these instances are fewer and further between than any of us would like to admit, myself included.
February 20th, 2016
I finished another cycle of chemo Wednesday, which means I’m weary and have a couple of spots in my mouth that want to turn into sores but are held at bay, for now, by Biotène® mouthwash. This week I’ll be back in New York City for another set of scans on Thursday. If you feel like you’re re-reading an old blog post of mine, so far you pretty much are. My treatment lately has been a repetitive rhythm of chemo on Wednesdays and scans every couple months, always on a Thursday. This upcoming scan most likely will not be great. It seems probably that my current chemo treatment isn’t keeping my disease stable and we’ll have to change things up, perhaps switching chemo or trying another surgery or round of radiation. Maybe all of the above. Again. We’ll get the scan results by Monday, so I’ll write about that in next week’s post.
In addition to finishing another round of chemo I’ve continued slogging through the process of finding an agent to represent my books, though my disillusionment with the entire publishing process continues to grow. Just today I found an agency that requires prospective authors to first pitch their work to one of the authors they represent and secure a referral before pitching your work to an agent. In other words, you essentially need an agent just to get an agent, much less a publisher. I’m sure this is a frustrating process for anyone, but the added specter of another bad scan looming doesn’t exactly help me feel like waiting years for anything to happen with my books. If I don’t make some headway towards getting published soon I’m going to start researching other avenues, though I know I lack the resources to successfully self-publish. I’ll figure something out. I hope.
The last week hasn’t been all doom and gloom though. I’ve enjoyed the unseasonably warm weather lately, playing a round of disc golf at the local park and attending a town hall meeting for my representative, which was held outside due to the size of the crowd that showed up. It was an enlightening experience, and an encouraging one too. Seeing democracy in action up close outside of Election Day was heartening, as was the fact that a politician in this country can stand surrounded by a couple hundred unhappy constituents without any fear for safety. The dialogue was not always entirely respectful or especially constructive, but it wasn’t exactly baleful or fruitless either. Overall, it reinforced a lesson I’ve been learning.
I asked my representative about healthcare, specifically why he saw the need to scrap the Affordable Care Act and start building a replacement from scratch, rather than adjust and fix the current system. I was ready, I thought, for anything, and had thought through a dozen retorts to as many possible replies. I was not prepared for him to ask me what I thought we should do to fix it though. I don’t honestly remember what I answered – I have several ideas about healthcare, and I’ve been in contact with his office about them, meeting in-person with his District Director and, at her request, emailing my thoughts and suggestions on the most-current draft of the healthcare reform bill under consideration right now. But in that moment I was so surprised to have a question thrown back at me that I doubt I made much of a compelling case for anything, other than saying that ideally we’d all enjoy universal health coverage and this whole discussion would be needless.
It hammered home an important lesson, more than anything else I’ve experienced so far has. Productive discourse doesn’t happen when we yell at one another or when we angrily accuse others of misdeeds, however accurately. It doesn’t happen when we ask questions we hope will trap others. It doesn’t happen when we are prepared only to accuse and attack. Constructive conversations are only possible when both sides are willing to ask questions of the other, and most importantly, to listen to the answers, however strongly they dislike the reply. Sure, there are times to yell. There are times when shock and anger are the only proper response. But these instances are fewer and further between than any of us would like to admit, myself included.
In addition to finishing another round of chemo I’ve continued slogging through the process of finding an agent to represent my books, though my disillusionment with the entire publishing process continues to grow. Just today I found an agency that requires prospective authors to first pitch their work to one of the authors they represent and secure a referral before pitching your work to an agent. In other words, you essentially need an agent just to get an agent, much less a publisher. I’m sure this is a frustrating process for anyone, but the added specter of another bad scan looming doesn’t exactly help me feel like waiting years for anything to happen with my books. If I don’t make some headway towards getting published soon I’m going to start researching other avenues, though I know I lack the resources to successfully self-publish. I’ll figure something out. I hope.
The last week hasn’t been all doom and gloom though. I’ve enjoyed the unseasonably warm weather lately, playing a round of disc golf at the local park and attending a town hall meeting for my representative, which was held outside due to the size of the crowd that showed up. It was an enlightening experience, and an encouraging one too. Seeing democracy in action up close outside of Election Day was heartening, as was the fact that a politician in this country can stand surrounded by a couple hundred unhappy constituents without any fear for safety. The dialogue was not always entirely respectful or especially constructive, but it wasn’t exactly baleful or fruitless either. Overall, it reinforced a lesson I’ve been learning.
I asked my representative about healthcare, specifically why he saw the need to scrap the Affordable Care Act and start building a replacement from scratch, rather than adjust and fix the current system. I was ready, I thought, for anything, and had thought through a dozen retorts to as many possible replies. I was not prepared for him to ask me what I thought we should do to fix it though. I don’t honestly remember what I answered – I have several ideas about healthcare, and I’ve been in contact with his office about them, meeting in-person with his District Director and, at her request, emailing my thoughts and suggestions on the most-current draft of the healthcare reform bill under consideration right now. But in that moment I was so surprised to have a question thrown back at me that I doubt I made much of a compelling case for anything, other than saying that ideally we’d all enjoy universal health coverage and this whole discussion would be needless.
It hammered home an important lesson, more than anything else I’ve experienced so far has. Productive discourse doesn’t happen when we yell at one another or when we angrily accuse others of misdeeds, however accurately. It doesn’t happen when we ask questions we hope will trap others. It doesn’t happen when we are prepared only to accuse and attack. Constructive conversations are only possible when both sides are willing to ask questions of the other, and most importantly, to listen to the answers, however strongly they dislike the reply. Sure, there are times to yell. There are times when shock and anger are the only proper response. But these instances are fewer and further between than any of us would like to admit, myself included.
