63 years ago, an 11-year old boy who loved baseball sat right next to his mother while a kindly old pediatrician explained to him–you have a hole in your heart. This meant for that young boy, no baseball, no track, no basketball.
I imagine this appointment broke that little guy’s heart, and his mother’s too. They didn’t have a lot of resources, and whatever disappointments they were handed, they took chin first. I have a picture of them in my mind, sun filtering through a high dusty window–dust motes flickering in the air. There were no tears.
Not quite 20 years later, my dad had open-heart surgery at The Cleveland Clinic to repair that hole in his heart. He had a scar that began at his belly button and traveled up almost to his collar bones. My mom remembers seeing him for the first time post-surgery, the breathing tube running into his throat–he looked like he’d been hit by a Mack truck. Family legend has it that her knees gave out and she sank to the floor right where she stood.
He survived the surgery (and another one 40 years later) and continues to live even though his heart still gives him the business. But his heart disease was a pre-existing condition. My parents spent the next 40 years, making sure that he had some sort of employee-sponsored insurance plan, and my dad worked his damn ass off–that’s for sure. But when he changed careers late in life, my mother went to work to make sure they had insurance. It wasn’t a given–not until they aged into Medicare.
30 years ago, a skinny college student with short hair, packed up her 1974 Dodge Gold Duster and drove home. Her parents were admitting her to a psych/eating disorders unit with her consent. She could no longer remember eating a meal that hadn’t been fraught–food was both enticing and frightening. She couldn’t eat with control like other people. The vomiting. The shame.
For close to 60 days, I lived on a split-third floor in a residential psych hospital. Half the floor housed mood disorders and half the floor housed eating disorders. There was overlap. I was not cured when they released me a few days before my 21st birthday, but the long stay did disrupt the cycle of binging and purging that marked the hours of my days.
There would be no more treatment. I now had a pre-existing mental health condition. Insurance companies could attach this nifty little thing called a rider to insurance policies. A rider excludes coverage for certain conditions. I aged out of my parents’ policy because I was no longer a student and I was 21, so insurance was out of the question until I was married and on my husband’s policy. I learned quickly to omit those 60 days from my health history.
In 2013, my 14-year-old daughter lost 25 pounds, drank a ton of water, and stopped menstruating. I thought she was following in Mom’s footsteps, but I could find no evidence that she was purging. In fact, it was weird, she was drinking sodas and gobbling down big bowls of Captain Crunch and Frosted Flakes. She had never been a sugar girl. She’d always preferred popcorn to Pop Tarts, peanuts to pie. I couldn’t figure this one out.
There was the strange issue about her smell though. She smelled like fingernail polish remover. I sniffed her. It drove her crazy. I sniffed her some more. She frowned and pouted and peed like mad. It took me a day or two of sniffing, but finally I looked it up–breath that smells like fingernail polish remover. And there it was–diabetic Ketoacidosis.
The nearest children’s hospital is almost three hours away. The ambulance was just the right size for the nurse and the IV delivering life-saving insulin and my daughter. I tried to climb in there with them, but there wasn’t enough room, so I had to travel with my husband. It was a quiet trip.
Insulin, test-strips, meters, needles–they aren’t cheap, but they cannot be done without. Type 1 Diabetes is an auto-immune disorder. My daughter’s pancreas doesn’t produce insulin. There is no option for discontinuing treatment other than death. As we prepared to leave the hospital–to begin our post-diabetes life, the social worker told us–You are lucky the affordable health care act is in place. She was even a little scoldy, perhaps she was tired of arguing the ACA’s benefits–without Obamacare Type 1 Diabetes can be a nightmare for young people.
Just last week, while I sat in a hospital room with my dad who was soon to have his heart shocked back into a sinus rhythm after a year of atrial fib, the House of Representatives voted to repeal and replace certain provisions of the Affordable Care Act.
While our president mouthed all over the place that pre-existing conditions would continue to be covered, the new provisions allow states to apply for waivers that would let health insurance companies offer paltry policies. These policies wouldn’t be required to cover the 10 essential health benefits mandated in the ACA. States who wanted the waivers would have to set up so-called high-risk pools — to protect insurers from high-cost patients–like my sweet daughter.
My daughter, Peanut, and is 18. She graduates high school in one week. She can remain on our health insurance policy for 8 years. But what happens when she leaves our policy? What happens when she graduates college but finds a job that doesn’t offer employer-sponsored health care? She can’t go one day without insulin. How does she survive?
Here’s what a caring gal told me on FB about my concerns: if one of my four children was in a position where medical premiums or costs were incurred I would advise them to disconnect their internet, get a cheaper car or take the bus, and eliminate things that weren’t essential to take care of that responsibility.
I couldn’t respond to that.
How do you respond to that?
I guess this post is my response.
I’m going to leave you with Jimmy Kimmel who said it all so well.