I’m getting ahead of myself. Because what I really should be posting right now is an account of my daughter becoming a Bat Mitzvah last weekend. Beautifully, lyrically, and really packing a punch in her teaching. And worse yet, I need to catch up on organizing the thoughts and photos from her brother’s Bar Mitzvah two years ago which, last you heard, I was dreading like the plague. Well, he came through all right and more. I promise I will get there, and get there. But while they’re still fresh in my mind, I must record this morning’s events in Raleigh, whose ball started rolling a little before last Shabbat:
About three weeks ago I answered a call for written stories about one’s personal and family healthcare quests. The link was either on Facebook or in my email; it was from Progress North Carolina, and I figured I would share my truth. I hoped my bit would offer some insight that could lead to improvements for a lot of people, particularly those less fortunate than I. Which, tough as the journey for me and mine has been, number many. And again, I breathe deeply and give thanks for the rewards that my hard work has significantly begun to yield.
Last Thursday I got a text from Jen at Progress NC asking if I would share my experiences at the General Assembly in Raleigh on Tuesday. At first I responded, “Is this a robo-text? How many millions of people are you reaching out to?” She replied, “Only dozens.” Her outreach was a result of the inquiry I had answered awhile back. Would I be willin to speak in front of the GA and the NAACP? She had me at “NAACP” and I was fully hooked at the news that the Reverend William Barber II would be present.
This morning at the parking lot I was solicitously met by Progress NC’s executive director bearing an umbrella which wouldn’t be needed til later; but how cool was that? Hey, I merited a handler and an escort.
In front of the GA, Reverend Barber began to speak words of encouragement, and to lead us in song. Then he said to Gerrick, “Do you have a speaker this morning?” Gerrick indicated me next to him and I was beckoned forward. The Reverend greeted me with a hug and I said, “Reverend Barber, you are amazing, and the only thing I ever disagree with you on is that you clap on ‘one and ‘three’!” After a big shared laugh and a little more singing, we marched into the rotunda.
At the Reverend’s introduction (“WHERE is my sister who is speaking this morning?” “I’m right behind you, Reverend!”), this is what I said:
My name is Jacqueline Marx. At this moment I have insurance. But that hasn’t always been the case – and in fact, if the General Assembly and President Trump have their way — I’ll lose my insurance in less than six months.
4 years ago I moved to Carrboro with my two children as a cantor, music teacher, writer – but most importantly, as a mother. For three years I did not make enough money to qualify for subsidies through the Affordable Care Act. But I made too much to qualify for Medicaid. They told me I was one of about 500,000 in North Carolina who fell in the Medicaid gap.
The Medicaid Gap could have been filled. But in 2013 our former governor had turned down the Medicaid expansion, which would have been paid entirely by the federal government. But the former governor decided that I, and half a million others, were not entitled to any help.
That lack of compassion was repeated last month when the U.s. House of Representatives voted to repeal the ACA.
You know what’s hard? Life with a pre-existing condition is hard. My daughter has cerebral palsy. I have a genetic mutation that makes breast cancer almost a certainty in my life. God forbid, it’s more of a question of when than if. And the thought of living without health insurance scares me to death. As the Congress tries to shred the Affordable Care act, I don’t think they even care. But life – anyone’s life – can change in a heartbeat. No matter how healthy you are, or how much money you have at your disposal, everything can change. And you want to be ready. We all want to be ready.
When January 2018 comes, my daughter and I may be uninsurable or unable to afford our insurance. And we’re not alone. They say 23 million people will be kicked off of their insurance. Shame on the Congress. How could they? How could they?
I work hard. I play by the rules. I pay my taxes in the richest country in the world. And many in the Congress say we can’t afford affordable healthcare. Our state lawmakers say they can’t afford to expand Medicaid, when the federal government will pay 90% of it. It’s a shame.
I am my children’s only surviving parent. They need me to be healthy. They need me not to skip cancer screenings because they aren’t covered by my insurance. Senators Richard Burr and Thom Tillis have a big decision. Do they want to vote for a bill that throws 23 million people off of their health insurance? Do they care?
But you know what? I hope they do. Because, when you share the light from your single candle to light another candle, you don’t lose your light…. you create more light! And more, and more, and more. A lot of us are counting on them to do the right thing. A lot of us, shining our light on each other. And there are going to be millions of voters across this state and this nation who hold them accountable if they do not do the right thing. Thank you.
Even though I chose not to put myself in the position of getting arrested (for I am indeed an only parent, and my mother is 97), this is the most important, worthwhile thing I have done since I adopted my kids.