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In 2013, anti-folk singer-songwriter Cindy Lee Berryhill lost her husband of 16 years, legendary rock scribe Paul Williams, after his long and harrowing battle with dementia; her latest album, The Adventurist, was inspired by their tragic love story. “I vowed to write Paul a song cycle,” she explained in a statement. “Not songs of sadness or the despair I’d felt, but songs that reflected the love I had for him, and a remembering back to the enormous flood of feelings we’d had on meeting and courting. I wanted to write songs that felt like they’d come from that muse-driven place we feel when we fall in love.”
Thankfully, Williams was able to receive good health care in his final years, but after he died at age 64, Berryhill struggled to afford insurance for herself and their young son. So when the Affordable Care Act went into effect, it was a relief.
Three years ago, my 12-year-old son and I were the poster family for the California version of the Affordable Care Act. We were in the TV commercial and our photos were taken for use in pamphlets and ads. We were interviewed and they liked our story. And yep, I am a believer in making health care affordable to families of all stripes and economic backgrounds.
And right now, I am very afraid.
I’m a songwriter/guitarist. I make albums, tour, and teach music to kids. My husband and I met in 1992 at a Bob Dylan concert. What a cool guy — he wrote books about music and other subjects and he’d started the first rock ’n’ roll magazine, the legendary CRAWDADDY!, back in 1966, at age 17, beating Rolling Stone by a year and a half.
I didn’t want to be that someone who got a handout from the government. But things changed when my husband became ill and was moved into a nursing home. I’ve been a widow now, our son fatherless, since 2013. And I am grateful that I can still get health care for us, but now I’m afraid of how that may change.
In 1995, my husband and I were a new couple, and though we were both self-employed — I was a musician and music teacher; he was a writer of books and music articles — we did the right thing and bought our own heath insurance. Together we were paying about $350 a month, with small co-pays. Within two weeks of being accepted by our new HMO, Kaiser, my husband had a terrible fall on his bicycle. I caught a ride to the hospital with the ambulance and eventually the doctor came out to tell me Paul was being operated on. He had a traumatic brain injury.
After two months of ICUs and hospitals and huge bills that I put in an envelope and sent to our health provider (one for over $80,000!), Paul was brought home. His recovery and ability to go back to writing, multitasking, and lecture tours was considered a miracle by all involved with his care.
By 2005, something had changed and was getting worse by the day. It was still too early for the medical community to know how head injuries and early onset of dementia are related (chronic traumatic encephalopathy), so we fumbled for several years with various doctor appointments and treatments. By 2009, Paul had become so disabled that I was no longer able to care for him at home. This was startlingly clear the day my husband started a grease fire in the oven in our apartment, the alarms all went off, and the sitter had to spoon out the excess grease and blow the smoke away before my son and I got back from a Christmas/Boxing Day afternoon at Disneyland.
I knew I had to do something when I suddenly awoke the next morning at 4 a.m. with a start and my heart was beating 200 beats per minute. I called an ambulance because I really thought I was dying. My heart was so sad, and so afraid. I had a kind of manageable arrhythmia, called supraventricular tachycardia. My heart couldn’t handle the care-taking. I needed things to change. And boy, did I cry.
So I worked like a warrior to get my husband placed in a nursing home. Oh, there’s a whole story there too, but that’s for another time. You want to find ways to cut the fat out of health care? Well, get Medicaid/Medicare to get more care in the home for the ill or elderly or put them in small, caring, assisted help homes, instead of sending them directly into expensive full-nursing care facilities. You could save a boatload of costs right there.
I am so grateful we were able to afford health care through all these configurations of my husband’s injury and subsequent dementia. And though our HMO didn’t pay for a skilled nursing home for him to live in, I was able to segue his care to Medicaid, as there was no way I could pay the $7,000 a month for his treatment and stay.
During this time, as is still the case now, my son and I lived on the little bit of money I made as a music teacher and musician; sometimes we got a small royalty check for my music or Paul’s books. With that plus our savings, I was able to pay for our health care — up until the end of 2013 (the year my husband passed away), when our savings ran out. Then, like a miracle, “Obamacare” became a real thing. After applying, my bill went from more than $900 a month for my son and me to just $200 a month. That was an amount I could afford and still pay rent and buy groceries.
It’s not an easy time to be a widow, a mother, and a musician, and this new health care vote could make or break my little family of two. How will I be able to take care of my son? It’s not what Paul and I had bargained for, the way things turned out. But it is what it is. And so with that I recall the words of Jesus: “Father, if you are willing, take this cup from me; yet not my will but yours be done.”
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