Trying To Make It Real Compared To What: Stories From Higley Hill

At first my husband didn’t want to join me in Hartford to protest the repeal of the Affordable Care Act. He’s a Democrat who always votes that way, but that’s about all he does. He votes. Even in the midterm elections, so I’ll give him that.

This protest directly effects his well-being. He’s had two DVTs (deep vein thrombosis). The last one occurred when we lived in Florida and was a huge clot that ran almost the entire length of his leg. He has Factor 5 Leiden, a genetic clotting disorder. A preexisting condition. A couple of days ago, at one-thirty in the morning, the Republicans voted against an amendment to keep the provision of the ACA that protects consumers from an insurance company charging more or even possibly denying coverage for a pre-existing condition. Rich also now has a prescription for a blood thinner that without ACA would cost $600 a month.

My husband’s misery was compounded by two herniated discs in his lower back. He ended up out of work for six weeks. With the loss of pay, deductibles, and co-pays, our credit card took a beating. We were on COBRA at the time. Two nights in the hospital on a blood thinner drip cost $17,000, that’s just for the bed and other sundries. The doctors’ bills were paid separately. There were also bills from the technician who reviewed the CAT scan and the blood tests. With our deductible we owed 10% of every bill. That’s $1700 for the room alone. You know the drill. Or maybe you don’t. That’s why I’m this sharing story. The issue of health insurance in America needs a human face.

Everything that makes man’s life worthwhile – family, work, education, a place to rear one’s children and a place to rest one’s head – all this depends on the decisions of government; all can be swept away by a government which does not heed the demands of its people, and I mean all of its people. ~ Robert F. Kennedy

Rich does not like to discuss politics. I am a fiery, opinionated, political junkie. I convinced him to join me by explaining his real life consequences if the Affordable Care Act were repealed without a reasonable, fair replacement. I also suggested we have a late lunch after the rally at Max Burger in West Hartford, a place we discovered when we worked in Connecticut as innkeepers. It was the olive branch of burgers, beers, and bloody Marys that won him over.

We chose Hartford because it is closer to our home in Southern Vermont than Burlington. And after all, I don’t need to send a message to my Vermont senators. Bernie Sanders is leading this charge and this is an American issue. As we approached the city listening to an old Les McCann tape I made thirty years ago I too wondered “what was wrong with the Godddamn nation”. The lyrics were hauntingly prescient. Rich said it was the theme song of the day. He was coming around.

We parked near the train station and walked to the Capital. I expected the entire Bushnell Park to be filled with people. It was a blue sky day, a Sunday afternoon, crisp but not too cold. I started to get angry. There are at least 20 million of us whose health insurance is on the line. Paul Ryan and the Republicans are talking vouchers and access to health insurance. That’s not much help with the monthly premiums that can run as high as $1200-$1500 a month. We have access to health insurance, we need affordability. Words matter, listen carefully when a politician is speaking.


Where the hell was everyone, I wondered. Two older gentlemen and a woman were asking themselves the same question. “Well, we’re here anyway,” one man said. The other man agreed. “We’re doing something and that makes us feel better.” I asked two ladies with Justice for Women signs if they were going to the march in DC. They told me they couldn’t get out of work but  thanked me for representing them. We encouraged each other to keep up the good fight.


One of the great liabilities of history is that all too many people fail to remain awake through great periods of social change. Every society has its protectors of status quo and its fraternities of the indifferent who are notorious for sleeping through revolutions. Today, our very survival depends on our ability to stay awake, to adjust to new ideas, to remain vigilant and to face the challenge of change. – Martin Luther King, Jr.

At the top of the hill a gathering of people was beginning to grow along the steps of the High Victorian Gothic style State House designed by Richard J. Upjohn. Made of marble from East Canaan, Connecticut, granite from Westerly, Rhode Island, and accented by a gold leaf dome, it is an impressive edifice. Connecticut was the first state to implement a consumer advocacy program to help patients with their insurance disputes. It became a model for the grant money the Affordable Care Act provides for healthcare advocacy programs across the nation.


Later in the day, the Hartford Courant reported over a thousand people attended the rally. Rich forged a path through the crowd and helped me make my way to the steps of the Capital where I could take better photos. We were on the shady side of the building and I was working with my old IPhone 4. Before the speeches began the battery died after I took a short video of the crowd chanting “A-C-A, A-C-A”.


Four Americans shared their healthcare stories. Jonathan Miller was born with cystic fibrosis. In a voice close to tears, he told us he would be bankrupt or dead without the ACA. “It’s not anyone’s decision to decide who does or doesn’t get healthcare,” he said.

I was reminded of a Facebook discussion I recently got embroiled in. One commenter thought he shouldn’t have to pay for obese people’s health insurance. “Why should otherwise healthy people who make healthy choices be asked to foot the bill for others who do not and most importantly do not care?” he asked. Cystic fibrosis also came up. Someone replied there are only 3,000 cases in the United States. I’m not sure about the point he was trying to make but I Googled this and discovered: “To have cystic fibrosis, a person must inherit two copies of the defective CF gene — one copy from each parent. Approximately 30,000 people in the United States have cystic fibrosis. An additional 10 million more — or about one in every 31 Americans — are carriers of the defective CF gene, but do not have the disease.” That’s the thing with the Internet. You need to be vigilant.


Jonathan Miller has been in and out of the hospital all his life. He currently takes 15-20 meds a day. “Illness can happen to anyone,” he said. “If you want to work through the Affordable Care Act and dismantle this … I want you to hear this from the bottom of my scarred, diseased lung. You will not hurt families — you will ruin families. You will kill people,” Miller said. ” The consequences will be fatal.”

Another speaker, a former drug addict who was able to get the care and counseling he needed through the Affordable Care Act shared this, “A miracle is not walking on air or water, but on this earth.” He is now a college graduate with a good job and a desire to help others.

Isabelle Endicott shared her story of having excellent health insurance through her employer when she gave birth to her second child who was born with a congenital heart disease. Before his first birthday his medical bills had reached a quarter of a million dollars, 25 percent of his lifetime cap. In a panic, she called her insurance company and they told her because of the Affordable Care Act there is no longer a cap on lifetime medical bills. Since the election, she is now worried once again about her son’s future. “It is our faces and voices that will win this fight,” she told us.

“Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth.” ~ William Faulkner


I looked for my husband in the crowd. I was afraid he might have left and gone for a walk, protests not being his thing and all. I walked through the cheering crowd and eventually spotted him somewhere in the middle, clapping. My daughter and her boyfriend drove from Providence and were standing with him.

When the rally ended we drove to West Hartford and celebrated democracy with those promised burgers, bloodies, and beer. Overall, it was an excellent way to spend a day in the land of the free and the brave. Like one of the guys I met earlier, we felt better.

I think the world is going to be saved by millions of small things. ~ Pete Seeger

***Isabelle Endicott is right. If you can’t attend a protest or a rally, please call your representatives. JOIN ME. Share your stories with me and I will share them here on my blog.***

Happy Martin Luther King Day everyone. “One life can change the world.”



4 thoughts on “Trying To Make It Real Compared To What: Stories From Higley Hill

  1. Great song!! Love your taste in music and envy the music library you have in your head.
    “If I can not do great things, I can do small things in a great way. “#MLK
    Very similar to Mr. Seeger’s thoughts. I came across my his in a book, Small Great Things by Jodi Picoult which was more about racism that health insurance but seemed appropriate for today. Really good read.
    The collapse of ACA is going to touch everybody with higher premiums, corporate policy or private. How else will hospitals and doctor offices cover the cost of the uninsured? I’m more like your husband not being one for rallies, but I keep the conversation going whenever I can especially when Trump declares it a failure after he evicerates its most helpful benefits. He is a dangerous man.

    Liked by 1 person

  2. Those stories are heart breaking and deeply, deeply frightening.
    The local ACA meeting in Johnston had so many people, over 600, that Rep. Cicilline had to come outside to speak to the overflow crowd. (I was not in attendance).

    I will not be marching in Washington, but am attending the Rhode Island Women’s Rally at the state house in Providence. It will be my first time attending such an event, largely due to the encouragement of friends like you and others whose example pushed me out of my comfort zone.

    My tv will be off on Friday and I will not be on f/b. My own low-level form of protest against that man.

    Liked by 1 person

    • Good for you. I don’t think you will be alone in boycotting the news that day. It’s actually another form of protest. Boycott TV, advertising, and capitalist consumerism. They are the ones driving the agenda and pulling the strings behind closed doors. Keeping us numb and dumb and creating wants we don’t really need. I highly recommend watching The Minimalist on Netflix. It’s an inspiring and eye-opening documentary.

      And thanks for attending the rally in Providence and sharing it here. We will make a huge statement across the country on the 21st and we have to keep it up. I’ve never been so disappointed in my country like I am now but this is not the majority of us. This is not who we are.

      Thank you for the report on the RI healthcare rally. It all got so little coverage from the national media. I guess that’s my job now, and other writers who are speaking up. Bernie Sanders is a true patriot and he will be sponsoring more rallies. And of course you know I will keep you posted.

      I was so impressed with the four brave people in Hartford who spoke up and shared their stories. These are real people with real, serious concerns. I’d like to hear from the 400 richest families in America who will receive the tax break from the repeal. I don’t know how they sleep at night.


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