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Edited on Fri Jan-11-08 07:01 AM by lostnfound
Our health care system is usually faulted for those who DON'T get treated, or who go bankrupt because of medical bills, etc. These things are terrible. But another especially cruel aspect of American health care is what it imposes on those who are facing terminal illness. How would you want to spend your last few months on Earth? When health care is tied to a particular job -- throughout that particular stage of life -- you lose your freedom when it matters most.
Every hour is not the same. People have dreams they want to accomplish before they leave this earth, and they have responsibilities to bear. If you knew you were dying, would you want to move closer to family or loved ones? Imagine a single parent who is dying, who wants to relocate with their child to be close to an aunt or uncle who would eventually care for them. Imagine a person whose spouse is dying -- do they dare to change jobs and face the dreaded "pre-existing conditions" clause? Six months off to spend together -- you'd find a way to scrape by without the salary -- but what about the insurance? Every hour is not the same. A person living with serious illness wants time -- to give themselves the best chance of recovery, or to put their affairs in order, or to cherish their loved ones, or to try to write their novel, or to go find a place of contemplation and retreat. But to be in the health care lifeboat, you must row: you must stay on the workplace treadmill from age 18/22 until age 65. If you lose the lottery, and are one of the already-unlucky ones whose life is cut short by illness, you may be dismayed to discover that the best of your remaining months and remaining energy will be consumed by work and by insurance paperwork.
Every hour is not the same. Decades ago, while my own parents coped with their final battles, we shared certain moments of vibrant life that still sparkle like jewels in my memory. These are treasures to me now, full of personal meaning and among what I hold most dear.
With my mother: A photo that I have near me now was taken on the most magic of days in that last year of her life: she is floating in a small raft down a pristine river in Florida, accompanied by both of her daughters, soaking up the sparkling sunshine and marvelling at the occasional river otter popping out of the water alongside our rafts. On that day I knew without a doubt that she was purely happy and comfortable, and that these numinous memories were etching themselves deeply in my own mind, surpassing time.
With my father: I remember how my mother one morning decided she wanted to take him to the beach, a place that he had always loved. She and I arrived, put him in his wheelchair, wheeled him to where the sidewalk ended, and only then realized that there was no surface to wheel him down to see the far-off water. My mother and I looked intently in each other eyes and we refused to give up; so together, we half-carried, half-dragged, half-weaved the wheels through the sand, nearly oblivious to anything but the sheer exertion and strain of it, until finally, half-crazed with the effort, we arrived at a peaceful spot near the water where we suddenly stopped, where the sound of the waves lapping on the shore brought calm to all three of us. There we stood, or sat, staring at the ocean. I know that he found a peace and calm there, the real waves on the beach somehow calming the storms in the ocean of his mind, a mind filled with 25,000 days of life, his shaky hands the same hands that had held mine secure in those waves at the age of 6.
Every hour is not the same. In some way, my parents had won a lottery: they were retired, and old enough to be on medicare. They suffered, for sure, but they had time to reflect on their lives and time to share with their children. But roll forward 20 years, and I've seen several coworkers face terminal illnesses, soldiering on at their desk jobs. They take a few weeks off, or a couple of months -- once they are too weak or devastated to make it to the office. Some enjoy the normalcy of work, enjoy taking their minds off of what they face, and seeing their friendly coworkers. But I can't help but wonder what their free choices would be, were it not for their job-chains, their need to keep their 'benefits', the need to stay in the health-care lifeboat. I can't help but wonder whether their children or spouses or loved ones have lost certain precious jewels, of seeing them fulfill a dream, write down their memories, or float down a river together.
In the American health care system, only "workers" are deemed to be objects or equipment worth maintaining, "non-workers" can fend for themselves. A friend from another country has a saying that "if you don't work, you don't eat". If you don't work here, you don't have access to healthcare. The Darwinian sense of it, the individualist sense of it -- I may not agree with, but I can comprehend. But the cycle of life doesn't fit neatly into the cycle of daily work, and you can work your whole life and still be robbed of dignity and choices in your final months, not actually for the sake of productivity or the loss of the last 100 days or $10,000 of your working life, but for the sake of not being pushed out of the lifeboat at the point in time when you need it the most. The tradeoff is, you stay on the treadmill until the end, file this paperwork and make these copays or deductibles, and if you are lucky, your family will be left only heartbroken and not penniless. Good luck.
I am grateful that my company provides benefits, and I've seen it treat those with terminal illnesses as kindly as corporate rules allow.
But those who complain about the lack of choices in countries that have universal health care ought to know about these flaws in our own.
In machine time, on a continuous production line, every hour costs pretty much the same.
In human life, some hours sparkle like jewels.
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