[In two weeks, this blog will have its fifth birthday! I have no idea what to write about. if you have ideas, please write me at gjarecke@comcast.net. Now be nice!]
I may have mentioned that I’ve met up with old high school friends, some of whom I hadn’t talked to in 30 years, others for 50. It’s been great. They were always nice people, but, with age, the rough edges have worn off. So I shouldn’t have been surprised to receive a lot of validation from them as a writer. No one else has supplied that.
But then during our last zoom call, seven-strong except for the doctor, someone asked me how I was doing, and I said something quiet and sad.
“There’s Jarecke,” someone said, “always upbeat and optimistic.”
That really stopped me. I don’t want to be seen as some kind of sad sack. But sometimes I’m just overcome by my physical liabilities. As I’ve reported, I have severe lumbar stenosis, which prevents me from being upright for more than about three minutes without pain. I also have osteoarthritis in my wrists and fingers, which means pain from waking till sleep. My life is full of inescapable pain.
It’s pain that pervades everything; I’m not able even to walk with stability. I shuffle like the old man that I am. At the end of the day, I’m exhausted and irritable. I love to cook but I can’t do that without pain and difficulty. It’s a very different kind of existence.
I’m not complaining here merely to complain. It’s part of a much larger issue that must affect a lot of other Americans much worse off than I.
Here’s a sort of rundown that I’ve lived through and how it’s much easier for me than others. For one thing, I’m on Medicare, and just about everything is paid for. My wife is on a health insurance policy for which she pays $1076 a month, has a $6,000 deductible, and it’s fortunate that she’s so healthy because it won’t pay for anything—which you learn only if you can get them on the phone and wrench an answer out of them.
I truly don’t know how anyone not making well over six figures can pay for anything other than cold medicine. Of course, I should admit that I’m an extreme case. There are people like my wife who are pretty healthy, and they don’t incur serious costs. What about the 62 year old with heart trouble, though?
Costs are just the start of it—or the end, if you realize you can’t pay and just give up and suffer or die.
I live on an island that is a half hour, $30 ferry ride from downtown Seattle. The hospital I go to is ten-minute drive up the hill from the ferry.
The drive through traffic to the hospital’s parking lot isn't bad, and the parking is usually only a $6.00 charge, but the parking lot’s spaces are narrow and often crowded. I banged up my car one day trying to find a space. Then I find an elevator to the second floor and check in. The first visit, I had to find what office on what floor of the enormous complex to which I must report. The Interventional Pain Clinic is on the fifth floor of the building next door. So I take an elevator up there and then take a winding route that leads through a skybridge over the street below, a seven-minute walk. That’s pure torture by the time I get there. At least I have it all memorized by now; you have to take a leap of faith here and there to find it.
Here’s the next part, dealing with the people. My pain clinic should, you would think, employ some of the most empathetic people in the hospital, as they are dealing with people in chronic pain. For the most part, that’s true. But as I imagine is true with a lot of people who work constantly with people in any adverse situation, at some point, their empathy runs out—otherwise they’d shoot themselves. I get it.
But it leads to the kind of exchange I had with a surgeon. I reported that nothing was better and I was beginning to expect that wouldn’t change, which was very discouraging. She ended with, “OK, well, hang in there.” I wanted to explode back, “Hey, YOU fucking hang in there.”
This clinic also employs a mysteriously rotating round of young doctors dubbed “Pain Fellows”, which is pretty hilarious, I think. “What do you do?” “Oh, I’m a Pain Fellow.” They are of varying effectiveness and empathy.
One of the first I had was neurotic and obviously ambitious; his leg jiggled constantly. At one point, he told me that he was leaving for New York. “NYU?” another Pain Fellow asked. “Columbia,” he was too quick to respond. Asshole. Lording it over some other poor Pain Fellow. As you can imagine, he was pretty cold to deal with.
One true thing is that when I speak to a health care professional of any level—nurse, physican’s assistant, Pain Fellow, attending physician—there’s never any sense that any of them know anything about my case. They ask me stupid questions that have been long settled. This surgeon at UW, whom I really like, like everyone else asked me a question that assumed that I had pain in my legs, which I never have. You don’t feel seen, which is actually frightening.
A curious event: at some point, someone wanted an x-ray of my back for something. The scarily gruff x-ray tech did her job briskly with a minimum of talk. But when she said she was done, and I made to go change out of the apron and back into my clothes, she said, softly, “I feel bad for you.” I was taken aback and just mumbled thank you or something similar.
But back in the tiny changing room, I let down and went nearly to tears. It was the nicest thing anyone in the hospital had ever said to me.
A few months later, I was back again (I don’t really know how many x-rays, MRI’s, and CT scans I’ve had. The radiation itself should put an end to me.) I had the same woman, and I hesitated until she was done taking pictures to remind her of the previous x-ray.
I said, “You may not remember this, you see so many people.” And then I reminded her of what she’d said. “I wasn’t gracious enough at the time,” I said. “You were so kind.”
She didn’t react much, and, to fill the silence, as usual, I continued. “The doctors don’t say anything. Sometimes I feel like they’re blaming the victim.”
She was standing next to me, and she said, “They’ll do that. Don’t let them.”
That surprised me. “Really?”
“Yes. You be you,” she said, with a fierceness in her tone. “Don’t let them get you down.”
I didn’t know what to make of her small speech, and when we were done, I left with a thank you. But she introduced a tension that I wasn’t aware existed, and isn’t it a little discouraging? Wouldn’t you prefer that their viewpoints didn’t conflict?
Republicans like to point at European health systems and ask if that’s what we want, socialized medicine, with delays and poor outcomes.
I don’t know. Having tired of the ineffectiveness of the staff at Virginia Mason Hospital over three years, I waited a month for a telehealth visit with a surgeon at the University of Washington about a possible micro procedure. I’m pursuing that and a second ablation on parallel tracks. The ablation guy still hasn’t called me back to schedule it, and that has been about a month.
Does that happen in Europe? Do they wait any longer for appointments than I do? I know for a fact that they pay less than we do for at least similar outcomes. Friends who have moved to Portugal actually had a house call—a house call!—for which the physician charged five euros.
I’m exhausted tonight. I went to a plant nursery to buy some annuals in accordance with my ritual of making our back deck look like a Swiss mountain chalet, and I was in horrible pain the whole time, yet it was an efficient shopping trip. It is true that no one can do anything about arthritis, but the left side of my left hand aches from the pinky past my wrist: I had surgery out there to fuse a joint that wouldn’t work anymore due to my having jammed it too often.
I admit, I lived a very athletic life, and I wouldn’t have changed a thing. But does the medical industry have to punish me even more for the indiscretion of having once been lively and young?
And all I can think is how lucky I am. Republicans, out of mere ideology and pure mean-spiritedness, don’t want poor people to have insurance, so most of America is worse off than I am. People without my financial resources can’t get care and when they can they can’t pay for it and the care isn’t effective anyway.
Excuse me, but the Republicans are absolutely fucking us and pretending that everything is fine with the health industrial complex. They would scream “Socialist commie!” but, sorry, I don’t know what the point of a government is if it can’t or doesn’t want to take care of its people.
I am here tonight, exhausted from the pain, thinking that obviously we don’t have that government. I can’t wait for us to get into Portugal. But more, I am sorry for Americans and their pain.
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