My Unsolicited Thoughts on Healthcare
Right now, the political climate in our country is…tricky, to say the least. But I like to think most people agree political differences shouldn’t come between close friend and family relationships. I tend to believe that. I make it a point to never remove someone from my social media due to differing political opinions, because I never want to live in an echo chamber where everyone agrees with me. With one exception. Healthcare. Be warned, if you don’t want to read a rant right now, turn back.
For most lucky people, healthcare is a political talking point. Doctor visits are routine and (comparatively) affordable, and essentially an afterthought to daily life. That isn’t the case for us. Healthcare and insurance are all consuming facts of life. The fact that Eli was born after mandatory preexisting condition coverage came into play is no small miracle to me. Worrying about healthcare is an everyday experience for me. (I plan on talking more about the costs we face each month, but I had to get this part out of the way first.) I lie awake at night worrying, knowing with the stroke of a pen Eli could become uninsurable, which would leave us bankrupt for decades (probably for life), and would almost certainly leave Eli destitute for life. I don’t care about semantics or who has better talking points or what you saw some talking head on TV say or what article you read on Facebook or what happened to your stupid friend who had to have surgery one time. I literally could not care less about your reasons and your "logic." Let me make this very clear: if your political opinion includes the belief that insurance companies should not be required to cover preexisting conditions, I do not want to hear it. I don't want to debate. It's not fun for me. It's terrifying. And I don’t want you in my life. You might argue, “But you don’t know why I believe that, you don’t know me.” That’s right. I don’t know you. And I don’t WANT to know you.
“That’s really unfair, Kirsten.” Sure. Maybe it is unfair. But you know what else is unfair, what’s MORE unfair? Spending your entire maternity leave, not introducing your child to the beauty of the world, but watching him sleep in a NICU isolette and feeding him through a tube in his nose; schlepping from hospital to hospital, doctor’s office to doctor’s office, holding him down as he’s poked and prodded and examined, and listening to people tell you to “just wait, he might grow out of it.” It’s unfair when you KNOW he won’t grow out of it. You know something is very wrong and because no one can figure out what it is, they just throw up their hands and tell you to wait it out. Unfair is being waved at by all the phlebotomists when you go to the lab for your child to have his blood drawn, because they know you by name, and you know them by name, because you are there all the freakin’ time. Don’t talk to me about fair.
“But you’re being really harsh, Kirsten.” Maybe it is harsh. But you know what else is harsh? Holding down your sobbing two week old as the fifth nurse comes in and tries, unsuccessfully, again, to place an IV. Harsh is being shuffled out of the room because they’re about to give your 14 day old tiny baby a SPINAL TAP, and they don’t want you to be in the room to hear him scream. Harsh is listening to your 2.5 month old child screaming inconsolably while he is in pain that is, according to the doctor, “excruciating.” Harsh is looking into the eyes of that baby, who is in excruciating pain, as he stares back at you accusingly. And you know you would give anything to take his place, but you can’t. You grew him, in your body, and you didn’t do a good job, and so he was born with something wrong, and even though they say it’s not your fault, you feel like every bit of pain he’s in is unequivocally your fault, and you hate yourself for it. Don’t talk to me about harsh.
“But Kirsten, I can’t believe you’re being so closed-minded.” Well, believe it. There are many many people out there who are so closed-minded they are going to look at my child and reflexively recoil, or point, or laugh. Closed-minded is the people who will automatically discount my child from playing sports, or assume his intellectual abilities are limited, or will never consider going on a date with him or being his friend. Closed-minded is the people who say the word “midget” (which is, in case you don’t know, a VERY offensive word) as the punchline of a joke, and don’t realize there are real people behind that label. People with thoughts and feelings and emotions just as strong as theirs. People who don’t want to be the punchline of their stupid joke. Closed-minded is all the people out in the world who will judge my child – my sweet, happy, good-natured, funny baby – by what shelf he can reach at the grocery store, by some arbitrary view of “manliness,” instead of by his character, his sense of humor, who he fundamentally is as a person. They will judge him based on his physical characteristics, instead of on his soul. Don’t talk to me about closed-minded.
So, if you had any questions before about where I stand, I hope this cleared it up for you. And I’m not alone in this view. Will feels exactly the same way. I'm not a shrew who forces my opinions on him. Some people like to say you don’t understand love until you’ve had a child, and I’ve always hated that. I think it’s crap, and I think it’s offensive to people who choose, or are unable, to have children, because they understand love just as well as any other non-sociopathic person out there. But I do think there is a sense of responsibility, a sense of desperation, a sense of justified righteousness, that comes with being the parent of a disabled child, and I don’t think anyone, parent or not, can or will ever understand it until it happens to them. So, I hope everyone I know never has to feel that way. Because as much as I think it’s made me a better person and given me a more valuable perspective on life, it mostly sucks.
People who know us know we went through a lot when Eli was born. They know we got a diagnosis that could be worse, could be better. But then they move on with their lives. Eli just becomes Eli to them (and I love them for it, because I don’t want anyone singling him out). But for us…we haven’t forgotten. It’s like when someone you love dies. People are there for you and supportive for about six weeks…then they go back to their own lives, and they forget that for you, the world is still off it’s axis, and nothing makes sense. We’re still there. The world is still off it’s axis, and nothing makes sense. Still. Every day. If you think my positions expressed here today are too forceful, and I’m just rude or stupid or a total bitch, that’s fine. Feel that way. I could give a damn. In case you haven’t noticed, I’ve got more important things to worry about. Like my child’s healthcare.
P.S. Below I have included one video and two articles about healthcare in the US. They are not all recent, but they do give you a sense of how I feel every day when I think about what would happen to us if we ever lose insurance for Eli. The final article is the longest article ever published in Time Magazine (2013). It is VERY long, but worthwhile. It will probably take you at least 45 minutes to read, just a warning.
The Face of a Preexisting Condition
An Unthinkably Modern Miracle
Bitter Pill: Why Medical Bills Are Killing Us
For most lucky people, healthcare is a political talking point. Doctor visits are routine and (comparatively) affordable, and essentially an afterthought to daily life. That isn’t the case for us. Healthcare and insurance are all consuming facts of life. The fact that Eli was born after mandatory preexisting condition coverage came into play is no small miracle to me. Worrying about healthcare is an everyday experience for me. (I plan on talking more about the costs we face each month, but I had to get this part out of the way first.) I lie awake at night worrying, knowing with the stroke of a pen Eli could become uninsurable, which would leave us bankrupt for decades (probably for life), and would almost certainly leave Eli destitute for life. I don’t care about semantics or who has better talking points or what you saw some talking head on TV say or what article you read on Facebook or what happened to your stupid friend who had to have surgery one time. I literally could not care less about your reasons and your "logic." Let me make this very clear: if your political opinion includes the belief that insurance companies should not be required to cover preexisting conditions, I do not want to hear it. I don't want to debate. It's not fun for me. It's terrifying. And I don’t want you in my life. You might argue, “But you don’t know why I believe that, you don’t know me.” That’s right. I don’t know you. And I don’t WANT to know you.
“That’s really unfair, Kirsten.” Sure. Maybe it is unfair. But you know what else is unfair, what’s MORE unfair? Spending your entire maternity leave, not introducing your child to the beauty of the world, but watching him sleep in a NICU isolette and feeding him through a tube in his nose; schlepping from hospital to hospital, doctor’s office to doctor’s office, holding him down as he’s poked and prodded and examined, and listening to people tell you to “just wait, he might grow out of it.” It’s unfair when you KNOW he won’t grow out of it. You know something is very wrong and because no one can figure out what it is, they just throw up their hands and tell you to wait it out. Unfair is being waved at by all the phlebotomists when you go to the lab for your child to have his blood drawn, because they know you by name, and you know them by name, because you are there all the freakin’ time. Don’t talk to me about fair.
“But you’re being really harsh, Kirsten.” Maybe it is harsh. But you know what else is harsh? Holding down your sobbing two week old as the fifth nurse comes in and tries, unsuccessfully, again, to place an IV. Harsh is being shuffled out of the room because they’re about to give your 14 day old tiny baby a SPINAL TAP, and they don’t want you to be in the room to hear him scream. Harsh is listening to your 2.5 month old child screaming inconsolably while he is in pain that is, according to the doctor, “excruciating.” Harsh is looking into the eyes of that baby, who is in excruciating pain, as he stares back at you accusingly. And you know you would give anything to take his place, but you can’t. You grew him, in your body, and you didn’t do a good job, and so he was born with something wrong, and even though they say it’s not your fault, you feel like every bit of pain he’s in is unequivocally your fault, and you hate yourself for it. Don’t talk to me about harsh.
“But Kirsten, I can’t believe you’re being so closed-minded.” Well, believe it. There are many many people out there who are so closed-minded they are going to look at my child and reflexively recoil, or point, or laugh. Closed-minded is the people who will automatically discount my child from playing sports, or assume his intellectual abilities are limited, or will never consider going on a date with him or being his friend. Closed-minded is the people who say the word “midget” (which is, in case you don’t know, a VERY offensive word) as the punchline of a joke, and don’t realize there are real people behind that label. People with thoughts and feelings and emotions just as strong as theirs. People who don’t want to be the punchline of their stupid joke. Closed-minded is all the people out in the world who will judge my child – my sweet, happy, good-natured, funny baby – by what shelf he can reach at the grocery store, by some arbitrary view of “manliness,” instead of by his character, his sense of humor, who he fundamentally is as a person. They will judge him based on his physical characteristics, instead of on his soul. Don’t talk to me about closed-minded.
So, if you had any questions before about where I stand, I hope this cleared it up for you. And I’m not alone in this view. Will feels exactly the same way. I'm not a shrew who forces my opinions on him. Some people like to say you don’t understand love until you’ve had a child, and I’ve always hated that. I think it’s crap, and I think it’s offensive to people who choose, or are unable, to have children, because they understand love just as well as any other non-sociopathic person out there. But I do think there is a sense of responsibility, a sense of desperation, a sense of justified righteousness, that comes with being the parent of a disabled child, and I don’t think anyone, parent or not, can or will ever understand it until it happens to them. So, I hope everyone I know never has to feel that way. Because as much as I think it’s made me a better person and given me a more valuable perspective on life, it mostly sucks.
People who know us know we went through a lot when Eli was born. They know we got a diagnosis that could be worse, could be better. But then they move on with their lives. Eli just becomes Eli to them (and I love them for it, because I don’t want anyone singling him out). But for us…we haven’t forgotten. It’s like when someone you love dies. People are there for you and supportive for about six weeks…then they go back to their own lives, and they forget that for you, the world is still off it’s axis, and nothing makes sense. We’re still there. The world is still off it’s axis, and nothing makes sense. Still. Every day. If you think my positions expressed here today are too forceful, and I’m just rude or stupid or a total bitch, that’s fine. Feel that way. I could give a damn. In case you haven’t noticed, I’ve got more important things to worry about. Like my child’s healthcare.
P.S. Below I have included one video and two articles about healthcare in the US. They are not all recent, but they do give you a sense of how I feel every day when I think about what would happen to us if we ever lose insurance for Eli. The final article is the longest article ever published in Time Magazine (2013). It is VERY long, but worthwhile. It will probably take you at least 45 minutes to read, just a warning.
The Face of a Preexisting Condition
An Unthinkably Modern Miracle
Bitter Pill: Why Medical Bills Are Killing Us
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