Today's church sermon really stuck with me:
"God's fire burns wet wood."
Even if you're not religious, I think these are truly beautiful words. I think at my own life - and all the times I have felt just like that - like wet wood. Too broken for fixing. Too dejected to go on. To beat down to think good things would come out of the mess that is life, sometimes. How many times in my life do I think those words would have been applicable! I wish someone had told me them long ago.
The mysteries in life, sometimes, seem too great to wonder. Things fall into place that you only see when the big picture comes together, but all the small pieces fitting into place feel hardly noteworthy, scarcely noticeable at times. And how easy it is to feel broken down by our trials and tribulations.
This has certainly given me a lot to ponder over the last few hours. I think often of the work that I do, why I felt called to healthcare, and how I find my place in the world where I feel that I am making a difference and doing something important. There comes a time in our lives where I think we start to wonder when all of the questioning, thoughts, and ideas swirling in nonformed patterns in our head come together into something tangible with which we carry on our lives.
In this present moment, though, I am grateful for all of the lessons that have been taught to me in 25 years. There was a time 5 years ago where I sat at my kitchen sink, unsure of where my life was going, unsure of whether I'd make it into school and where I was supposed to go from there and what I was supposed to do with the mound of heartbreak and other misfortune I carried at the time. Something I always marvel on in my life is how I feel I have always been carried through those difficult times - in spite of so many obstacles, questions, and hurdles and hurdle, there was always been some way in which to trial through and press onwards. And furthermore, I always seem to possess an almost inextinguishable fire in which to push through these things. As much as I find my own trials difficult, as I'm sure we can all call to mind events and circumstances in our lives that have evoked this same feeling in us, I love that my own difficulties have changed my heart in many ways that I feel, are changes for the better. In little ways - thinking twice about what one of my own patients is going through. Considering the emotional and mental ramifications of illness, and the amount of strength and capacity for perseverance that a person must develop or prepossess in order to overcome it. The lessons on compassion it has taught me. The lessons in humility - feeling that the very thing that makes me human, that the body that I rely on - has failed me, and the disappointment and fear that causes you to feel. Being previously health but then suddenly needing something that is oftentimes difficult to get, to keep you alive. The humility of having to rely on the kindness of others or seemingly happenstance but remarkable provisions to help you get through on a month to month basis. I suppose the lesson is, that even in our darkest moments, we are undergoing changes within ourselves or learning things that get us closer to who we are supposed to be, or equip us to help or connect with someone else somewhere along their own journey.
I was working with a patient last week, who is very young for being in a nursing home, and whom I've worked with earlier that year during another visit. This was my first day on this particular visit working with them - other therapists had worked with them the past month, with little progress having been made. No walking. No standing. Not even being able to get out of bed without a lift. We were in the parallel bars, and I was listening to them crying, very obviously anxious, about trying to walk. They had the strength - there is no technical reason why they shouldn't be able to - but something was holding them back. I wouldn't say this to every patient, nor would I seek to interject my own experiences on them to make it seem like I am lessening their own difficulties - but having known this patient pretty well from before, I looked at them, and I asked them, "I know you're scared, but what is the alternative?"
They looked at me. "Being in a wheelchair..."
"Right," I said. "When I was diagnosed with Type 1 Diabetes, needles were my biggest fear. I cried as a teenager every time I had to get shots or lab work. I couldn't have imagined anything worse than being diagnosed with an illness that required me to confront my biggest fear daily. And yet I was. And I was angry. But more than that, I was scared. Terrified. I didn't think I could possibly do it.
But then someone else close to me asked me, "what is the alternative?" And the only answer I had for that was dying. Because that was the only alternative, if I didn't find a way to get stronger and overcome my fear. And so I learned, little by little, and I taught myself, to overcome this. No matter how hard it was - I learned to be stronger.
I know you're afraid, but overcoming your fear is so much greater than living the alternative. I know that was the case for me, and I promise you that that will be the case for you, if you try. So please try. I know you can do this."
I would like to say the patient just got out of their wheelchair and could magically walk perfectly without help after that, but that wasn't the case. But they did stand. And they did walk. Albeit it wasn't pretty, but they did it. Twice. And that moment really touched me. In that moment, I did feel that my own struggles with anxiety, fear, pain, and the loneliness and isolation of illness equipped me to truly help somebody. And the next day I had them walking further, getting in and out of bed on their own, standing up from a mat - and that was such a good feeling. To have overcome something to be able to lend my own experience to help somebody else.
God's fire burns wet wood. Things we don't understand - the bad, the scary, the painful, the tragic - these things, while not good, can in miraculous ways be used for good. And we, in the midst of feeling broken and run down - we can rediscover the sparks that keep us going. We can find deeper strength. We can become people that spread goodness.
This is a reminder I believe we all can use, from time to time. I know I can.
Sunday, January 27, 2019
Tuesday, January 15, 2019
Saying, "Things Will Be Fine" is a Luxury Not All Of Us Can Afford.
I was very smug in highschool about my political beliefs. Free market with limited government intervention. This had to be the missing piece in our broken country. Medicaid was a drain on our system. More competition was the answer to sky high medical prices. Obamacare was the worst possible thing that could happen. How could the government force us to buy healthcare? I couldn't imagine anything more wrong.
You would not have been able to change my mind. I could argue until I turned blue in the face, and I practically did, on many occasions. And there's a correlation to this: I didn't have a chronic illness yet. I'll be the first to say that I don't think that that means all of my ideas are right. But, having suffered with a very expensive illness for almost 8 years now, I feel that I've garnered enough insight to know what is and isn't helpful to people battling to pay for their medications day in and day out.
When I discovered that I had Type 1 Diabetes at age 17, the very system that I had lauded as a drain on our taxpayer dollars was the very system that saved my life. And I mean that, fully. My parents are divorced and my mother is self employed. We didn't have health insurance. When we were sick, we stuck it out or went to the urgent care or the health department. When I was hospitalized, the bill was $20,000 for a 5 day stay. And when I was told I couldn't leave the hospital until my parents bought my meds, I told the nurse, "Oh, well I don't have health insurance, but I'm sure my parents can just buy them."
I'll never forget the words she told me: "I don't think you realize how expensive they are."
And she was right: I didn't. $500 for a one month supply of my medication. And that's significantly cheaper than what it is now. I would not have been able to afford my hospital stay or medication without Medicaid. Before Obamacare came into effect, most private insurance charged 3 times as much for someone like me, and didn't cover any of the medications, including insulin, I needed to live. I truly do not know what I would have done.
Regardless, I stuck it out for the long haul. I kept insisting and insisting that Obamacare was wrong. Competition was key. I couldn't villianize big pharma all that much - it was their product, and they had a right to charge what they wanted, no? Year, after year. I stuck to this belief. But this year, I feel like I simply can't cling to these beliefs anymore. Politicians all sell us overinflated promises to get votes, sure. But, as a consumer of drugs on the healthcare market, I've been in almost any position you can be in now - Medicaid holder, underinsured, no insurance, high deductible plan, gold and platinum level employer-sponsored health insurance; and, having taken all of these experiences into consideration, I find it hard to cling to a system that places the dollar above the lives of people like myself, each and every day, even as they are crying out for help. I find it hard to justify a drug sold at $300 a vial when it was once sold for $1 by a man who refused to patent insulin because he wanted people everywhere to have access to it.
And furthermore... I'm tired. I'm tired and I'm frankly, really angry of people who have the luxury of throwing out their "I'm sure it's fine's" and advice used simply to find a means to justify the current problems that our healthcare system causes people who literally did nothing wrong except for losing in a poorly weighted game of genetic lottery. We do not all have the luxury of being able to have the faith to believe that things will be fine. We do not all have the luxury to believe that options will simply present themselves, or things will "eventually" work out. "Things will be fine" is a saying for the healthy. Those who are ill are not so lucky. Those who are ill without health insurance, doubly so. Because it's month to month, sometimes day to day, for these people. Saying "it will be fine" is not a solution. These people need fixes. Not excuses from others used to justify their not being able to afford to live well or live at all. And I say that having been there more times than you can ever imagine. Picture pouring your heart out to the world, humbling yourself and admitting that you struggle to afford a drug that most people have the luxury of natural producing as a hormone in their bodies themselves. Imagine the anxiety you feel month to month, worrying about what you'll do when the insulin runs out - worrying about what you'll do for the next three years without healthcare. As I did. And if you don’t know how that feels, please take a second to consider how lucky you are. Please take a second to realize how lucky you must be to even feel justified to entertain the thought that it’s okay for someone else to feel like this. And then imagine someone - more than just one person - comes along and says,
"Well you can just get insulin at Walmart."
"Have you checked GoodRx? Most drugs have coupons to offset the cost."
"All pharmaceutical companies have programs to help you afford your medications if you can't."
"Well if I needed a drug to live, I'd spend all my money on it because I have to. It really could be worse. You could go without some luxuries and maybe then you could afford your medications."
"Well (so and so) has no trouble getting insulin, so how can you?"
"Well it could be worse. If democrats had their way, we'd be paying for everyone's insulin! Imagine how much that would cost taxpayers!"
How would that make you feel? To have everything you feel, that you go through, disregarded because someone who knows nothing about your situation (and I guarantee you it's almost never diabetics saying these things) thinks their 5 minutes on Google and that time they got their antibiotics really cheap with a GoodRx coupon and that friend who told them drug companies have drug assistance programs makes them qualified to assume that you haven't already explored those options and that they possess some superior knowledge to you that makes you unqualified to be upset at your situation?
It's hurtful. To have everything you do criticized through a microscope and have people pick your choices apart and tell you how they think you could have done better and that somehow make it out that it's still your fault that medication is so expensive that it's unaffordable. You cannot imagine the anxiety that not being able to afford medication puts you through. Whether it's for a month, or for me, years. You don't know how it tests you as a human being. How it belittles your own self worth, or strikes fear deep within your heart. You don't know unless you've confronted that situation. But, as someone who has faced it, I can tell you that that's how it's like. So when I get emotional, for myself or others in a similar situation, I feel that it's my due right. I've been on this soapbox for years, but this is my life. I have watched people's lives be ruined because of unexpected health care expenses. I interact with my own patients daily and witness how a healthcare system designed to value the dollar over human lives makes people suffer. And how I have had my own life altered because of being thrust into a system that values the dollar over my quality of life, and my life itself. Over and over, I have seen flaws in my own beliefs regarding healthcare come to life. Including the hard truth that a free market system doesn't work when you hold someone's life in your hands. When you're selling a need, not simply a want. Free market works great for TV's. It works great for automobiles. It works great for cell phones. Want to know something it doesn't work great for? Insulin. Because drug companies have learned that it's more profitable to, instead of competing, collectively raise prices yearly - like they did just this month.What can I say about that? It doesn't matter whether insulin costs $40, or $300, a vial. It doesn't change how much I need it. Competition isn't working because the money isn't in the competition. Demand for life saving drugs is not effected by price. What is the incentive, therefore, to offer lower prices? There is none. So here I am: it's been 8 years since high school, and 11 years since I was a high school freshman, and almost 8 years with Diabetes. And I no longer believe that high school me was right. What I believe is that people should not suffer so greatly because of human greed. What I believe is that money is not more important than people. And I think that this is a simple but powerful stance to take, regardless of party affiliations or political beliefs.
So I ask you: How long will people with health conditions such as Diabetes continue to suffer? How long can you ignore people who are rationing their insulin and dying because of $1200-$1500/month insulin costs? How many excuses will you make to tell yourself that's okay? How many times will you brush those concerns off, assuming these people just haven't tried hard enough or missed something along the line that will keep them from struggling month to month, to tell yourself it's their fault, not this broken health care system? I implore you to remember that, regardless of your political belief, money is a man-made construct. Human lives cannot be valued in money. But some in the health care industry are clearly putting prices on our lives. I implore you to look inside of yourself and ask why you think those people who control the drug industry deserve your excuses while the people the market to suffer. And continuously, I ask you to raise your voice. I've seen awareness over insulin prices increase dramatically this year, and it's only picking up momentum. This issue is not going away. Us diabetics cannot afford to let it go away. I may have good health insurance with a low deductible and copay this year, but somewhere out there, there's a 20-something struggling to get insulin month to month just as I once was. I raise my voice not just for me, but for them. All it takes is a turn of the dice to fall back into a situation like that. It shouldn't be that way.
Let's change it.
You would not have been able to change my mind. I could argue until I turned blue in the face, and I practically did, on many occasions. And there's a correlation to this: I didn't have a chronic illness yet. I'll be the first to say that I don't think that that means all of my ideas are right. But, having suffered with a very expensive illness for almost 8 years now, I feel that I've garnered enough insight to know what is and isn't helpful to people battling to pay for their medications day in and day out.
When I discovered that I had Type 1 Diabetes at age 17, the very system that I had lauded as a drain on our taxpayer dollars was the very system that saved my life. And I mean that, fully. My parents are divorced and my mother is self employed. We didn't have health insurance. When we were sick, we stuck it out or went to the urgent care or the health department. When I was hospitalized, the bill was $20,000 for a 5 day stay. And when I was told I couldn't leave the hospital until my parents bought my meds, I told the nurse, "Oh, well I don't have health insurance, but I'm sure my parents can just buy them."
I'll never forget the words she told me: "I don't think you realize how expensive they are."
And she was right: I didn't. $500 for a one month supply of my medication. And that's significantly cheaper than what it is now. I would not have been able to afford my hospital stay or medication without Medicaid. Before Obamacare came into effect, most private insurance charged 3 times as much for someone like me, and didn't cover any of the medications, including insulin, I needed to live. I truly do not know what I would have done.
Regardless, I stuck it out for the long haul. I kept insisting and insisting that Obamacare was wrong. Competition was key. I couldn't villianize big pharma all that much - it was their product, and they had a right to charge what they wanted, no? Year, after year. I stuck to this belief. But this year, I feel like I simply can't cling to these beliefs anymore. Politicians all sell us overinflated promises to get votes, sure. But, as a consumer of drugs on the healthcare market, I've been in almost any position you can be in now - Medicaid holder, underinsured, no insurance, high deductible plan, gold and platinum level employer-sponsored health insurance; and, having taken all of these experiences into consideration, I find it hard to cling to a system that places the dollar above the lives of people like myself, each and every day, even as they are crying out for help. I find it hard to justify a drug sold at $300 a vial when it was once sold for $1 by a man who refused to patent insulin because he wanted people everywhere to have access to it.
And furthermore... I'm tired. I'm tired and I'm frankly, really angry of people who have the luxury of throwing out their "I'm sure it's fine's" and advice used simply to find a means to justify the current problems that our healthcare system causes people who literally did nothing wrong except for losing in a poorly weighted game of genetic lottery. We do not all have the luxury of being able to have the faith to believe that things will be fine. We do not all have the luxury to believe that options will simply present themselves, or things will "eventually" work out. "Things will be fine" is a saying for the healthy. Those who are ill are not so lucky. Those who are ill without health insurance, doubly so. Because it's month to month, sometimes day to day, for these people. Saying "it will be fine" is not a solution. These people need fixes. Not excuses from others used to justify their not being able to afford to live well or live at all. And I say that having been there more times than you can ever imagine. Picture pouring your heart out to the world, humbling yourself and admitting that you struggle to afford a drug that most people have the luxury of natural producing as a hormone in their bodies themselves. Imagine the anxiety you feel month to month, worrying about what you'll do when the insulin runs out - worrying about what you'll do for the next three years without healthcare. As I did. And if you don’t know how that feels, please take a second to consider how lucky you are. Please take a second to realize how lucky you must be to even feel justified to entertain the thought that it’s okay for someone else to feel like this. And then imagine someone - more than just one person - comes along and says,
"Well you can just get insulin at Walmart."
"Have you checked GoodRx? Most drugs have coupons to offset the cost."
"All pharmaceutical companies have programs to help you afford your medications if you can't."
"Well if I needed a drug to live, I'd spend all my money on it because I have to. It really could be worse. You could go without some luxuries and maybe then you could afford your medications."
"Well (so and so) has no trouble getting insulin, so how can you?"
"Well it could be worse. If democrats had their way, we'd be paying for everyone's insulin! Imagine how much that would cost taxpayers!"
How would that make you feel? To have everything you feel, that you go through, disregarded because someone who knows nothing about your situation (and I guarantee you it's almost never diabetics saying these things) thinks their 5 minutes on Google and that time they got their antibiotics really cheap with a GoodRx coupon and that friend who told them drug companies have drug assistance programs makes them qualified to assume that you haven't already explored those options and that they possess some superior knowledge to you that makes you unqualified to be upset at your situation?
It's hurtful. To have everything you do criticized through a microscope and have people pick your choices apart and tell you how they think you could have done better and that somehow make it out that it's still your fault that medication is so expensive that it's unaffordable. You cannot imagine the anxiety that not being able to afford medication puts you through. Whether it's for a month, or for me, years. You don't know how it tests you as a human being. How it belittles your own self worth, or strikes fear deep within your heart. You don't know unless you've confronted that situation. But, as someone who has faced it, I can tell you that that's how it's like. So when I get emotional, for myself or others in a similar situation, I feel that it's my due right. I've been on this soapbox for years, but this is my life. I have watched people's lives be ruined because of unexpected health care expenses. I interact with my own patients daily and witness how a healthcare system designed to value the dollar over human lives makes people suffer. And how I have had my own life altered because of being thrust into a system that values the dollar over my quality of life, and my life itself. Over and over, I have seen flaws in my own beliefs regarding healthcare come to life. Including the hard truth that a free market system doesn't work when you hold someone's life in your hands. When you're selling a need, not simply a want. Free market works great for TV's. It works great for automobiles. It works great for cell phones. Want to know something it doesn't work great for? Insulin. Because drug companies have learned that it's more profitable to, instead of competing, collectively raise prices yearly - like they did just this month.What can I say about that? It doesn't matter whether insulin costs $40, or $300, a vial. It doesn't change how much I need it. Competition isn't working because the money isn't in the competition. Demand for life saving drugs is not effected by price. What is the incentive, therefore, to offer lower prices? There is none. So here I am: it's been 8 years since high school, and 11 years since I was a high school freshman, and almost 8 years with Diabetes. And I no longer believe that high school me was right. What I believe is that people should not suffer so greatly because of human greed. What I believe is that money is not more important than people. And I think that this is a simple but powerful stance to take, regardless of party affiliations or political beliefs.
So I ask you: How long will people with health conditions such as Diabetes continue to suffer? How long can you ignore people who are rationing their insulin and dying because of $1200-$1500/month insulin costs? How many excuses will you make to tell yourself that's okay? How many times will you brush those concerns off, assuming these people just haven't tried hard enough or missed something along the line that will keep them from struggling month to month, to tell yourself it's their fault, not this broken health care system? I implore you to remember that, regardless of your political belief, money is a man-made construct. Human lives cannot be valued in money. But some in the health care industry are clearly putting prices on our lives. I implore you to look inside of yourself and ask why you think those people who control the drug industry deserve your excuses while the people the market to suffer. And continuously, I ask you to raise your voice. I've seen awareness over insulin prices increase dramatically this year, and it's only picking up momentum. This issue is not going away. Us diabetics cannot afford to let it go away. I may have good health insurance with a low deductible and copay this year, but somewhere out there, there's a 20-something struggling to get insulin month to month just as I once was. I raise my voice not just for me, but for them. All it takes is a turn of the dice to fall back into a situation like that. It shouldn't be that way.
Let's change it.
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