A Rock and a Hard Place

Even though I expect it, in theory, I am still constantly surprised by how differently people view the same - or similar - circumstances.

We all do this, I think. We're sure that the facts point to a certain conclusion. Of course, there are often many valid conclusions. Life isn't so much a coin with two sides as it is a D&D die, with 20 possible sides.

Years ago, I was talking with another mother about something to do with kids being sick; maybe one of us had a sick child at that point. Then we talked about being grateful that we had medical insurance. As a young mother, I saw our medical coverage as pretty magical. For the first two decades of raising kids, a doctor's visit was $5. When people talk about "Cadillac insurance," that was what we had.

"Yeah," she said, "sometimes my parents couldn't even take us to the doctor without worrying. Or, they'd wait until we were really sick."

"Mine, too," I agreed. My parents had 4 kids, and our income was pension checks and a part time job. We never applied for any kind of assistance, either; that was for "poor people," moochers, or impending starvation. At the beginning of every school year, in the beginning of term forms, schools sent home a one page form for school district sponsored insurance. We'd get that when I was in school; it didn't help much, but it did help.

Being sick always meant waiting to see if an illness got worse or got better. If we started to feel better after two or three days, we knew it was a virus that would pass on its own. If we got worse, it meant prescription medicine, so that's when we went to the doctor. It seemed really normal to me - why panic if it was something that would just pass? My husband's father always phrased it this way - "Going to the doctor's office just exposes you to a bunch of sick people. That's where they all are. Why take your kid there unless you have to?"

The other mom started telling a story about her brother being sick, and how her parents waited to take him to the doctor, because they couldn't afford the visit. I can't remember what he had; honestly, until a certain point, this conversation wasn't really memorable, so I likely would have forgotten it entirely until it took an unexpected turn. At this point, it was all totally familiar and expected to me, like a conversation about getting dressed every day.

"By the time they went, he was so sick!" she said.

"Yeah, I remember what that's like." She'd reminded me of an illness that I'd had at 11 or 12. "Mine did the same thing."

"He could have died!" Years later, she was still upset about it.

"Me, too."

At this point, I thought we were still on the same page - we have a ridiculous medical system in this country. No other "first world" nation makes its citizens choose between medicine and food, doctor's visits or rent. No parent should be forced into that decision.

So, here I was, thinking that we both blamed the system. I was wrong. She blamed her parents. And the fact that I did not blame her parents deeply upset her. "I would do without anything for my son! I would take him to the doctor even if it meant that we'd end up homeless! No decent parent lets their child get sicker and sicker!"

Ouch; so, here, our opinions parted, because I agreed with my parents' choice, even when I was the sick child.

The illness I was thinking of started predictably. I always got sick easily and severely. It wasn't until I was in my 40s and had my thyroid removed that I could pinpoint any possible reason for that. It was just how it was. Being sick usually meant a week out of school, and often two weeks, even if it was "just a cold." I got the same illnesses every year. It was ordinary, like having to scrape your windshield.

Strep throat was one of those illnesses. I could pretty much guarantee that I'd have it at least once a winter, and often, more than once. It sometimes showed up in the warmer months, too. It just seemed to like me.

When I was in 6th or 7th grade, the winter that I turned 12, I got a case of strep that didn't respond to antibiotics. We went back to the doctor, and he prescribed stronger antibiotics, but the illness still didn't respond. It had been a couple of weeks already at this point.

I wasn't worried about schoolwork; my teachers sent it home, and I did it and sent it back, so I was maintaining good grades. (If I'd had the same attendence requirements that schools have now, I'd have failed at least three grades. Back then, they just needed you to do the work at home.) But, I was miserable. I was feverish, tired, headachy, and probably dehydrated, because it hurt to swallow even my own saliva. My mom made sure that I had juice, Jello, popsicles, and soup, but even cold, smooth food hurt, so I avoided eating or drinking too much.

When we made the decision to take me back to the doctor again, my dad insisted that we drive across town to see his doctor, instead of going back to my pediatrician. He was frustrated and angry that my doctor hadn't been able to find an effective treatment, and he wanted a second opinion. He trusted his own doctor more, he said, since mine was "failing" to help.

So, tired and grouchy, I was bundled across town to see my dad's doctor. He seemed nice, and his nurses seemed nice. They did the usual exam, and asked about symptoms - how long, how severe. He made sure to ask if I was actually taking my antibiotics, not just spitting them out when my parents weren't looking. I was mildly offended, but figured it was a fair question, since he'd never met me before and the drugs had worked in the past.

Then, he took both of my parents into his office, to have a private discussion. I was always annoyed by being excluded from conversations or decision making, especially when the decisions were about me, so I got a bit grumpier.

When they came out, they had a treatment plan. He explained that if the medications I'd already had hadn't worked, they'd have to give me something much stronger, and that meant shots. "This treatment isn't available orally," he said. I'd have to come in every single day to get shots until I improved, then taper down to every other day until I was well.

Shots never scared me or made me cry, but I've never liked them, either. Plus, I'd have to get out of my pajamas into real clothes and leave the house to go clear across town every day, which didn't sound great. But, being well again did sound great. So, OK, daily shots - let's do this.

He gave me the first shot before we left, and he and my mom discussed what time I'd come in every day. And, we went home with a plan.

It worked; after a few days, the fever was down, the pain was down, the headache was down.

The nurses tried to be cheerful, and alternated giving me the shots on the left and right sides, in this case being alternating butt cheeks. "Which side did we get yesterday?" a nurse would chirp while readying the premeasured vials of yellow liquid. I'd try not to roll my eyes. I mean, it was sweet, but there was no way to make this experience pleasant.

After a week or so, we tapered off to every other day, and that lasted another week or so. After that, I was back to school, back to normal, upset only at the quarter sized stain on my favorite jeans from an injection that bled. But, I was glad to know that there was a treatment that worked when others didn't, in case we needed it again some day.

When I was 14 or 15, I was talking to my mom about some illness or other - I probably had strep again - and said, "Remember when I had to go get shots every day?"

Of course she did. And, now that the danger had passed, she let me in on, as Paul Harvey would say, "the rest of the story."

That treatment plan had been a compromise between what the doctor wanted and what my family could pay for. The strep was turning into scarlet fever, and the doctor wanted me hospitalized.

Strep alone can be deadly, and often was in the days before antibiotics. There is a theory out there that Mozart died from strep. Scarlet fever can be even more deadly. In one scarlet fever outbreak in the U.S., there was a 5% fatality rate. For comparison, COVID-19 has a fatality rate up to 1%. If you read the Little House on the Prairie books, you know that Mary Ingalls went blind due to scarlet fever. The illness that took Helen Keller's sight and hearing is believed to have been scarlet fever.

When my parents said, accurately, that we could not pay for a hospital stay, they and the doctor collectively came up with this alternative. I would get shots every day. If I improved, fine, I stayed at home. If I did not improve, he would hospitalize me against my parents' wishes, and ask the state to take emergency custody of me, and therefore the state would cover the cost.

My immediate reaction was, "Thank you! I would have been so stressed in the hospital that I would have gotten so much worse!" Knowing that we'd dodged a hospital stay was the big deal for me as a teen.

Sometimes, I tell this story, and other people will say, "Oh, of course, being away from your parents would be so scary!" That's not quite what I meant. Sure, it would. But being around other people, 24 hours a day, was what sounded awful. Back then, children's wards were big open rooms with beds down both sides. It was easier for the nurses to watch over and care for multiple kids this way. You could get semi-private or private rooms if you had a lot of cash, but we (obviously) didn't. Being in a room full of other kids either meant that they'd exhaust me with chattering and interaction, or ignore me while chattering with everyone else. That was what happened every time I was in a group, especially of people I didn't know. Neither option was comfortable. Add in nurses and doctors checking on me at all hours, and it was exhausting to even imagine. I couldn't imagine getting well that way.

I still dislike being in the hospital. I do not understand people who find it restful or reassuring.

Still, my comfort was not my parents' primary concern. They didn't make their choice in order to spare me from awkwardness, even though my first inclination was to assume that they had. It's pretty easy for someone to say that "any reasonable parent" would hospitalize their child "no matter what," but there were 5 people at home. My dad was retired, with a heart condition. They simply could not prioritize me, or any one of us, over the other four, or over their continued ability to pay our bills.

It took years before I started thinking of the other side of that coin, the "emergency custody" side. To do that, the doctor would have had to allege medical neglect. I would have been a ward of the state. After I was well, my parents would have had to petition the court to regain custody of me. Now, I can see how terrifying that must have been for them. I can imagine them asking a judge to send me home, and the judge grilling them - "How do we know that this won't happen again? How do we know that she'll receive adequate care? How do we know that your other minor child is safe?" It would have been a nightmare.

The worst part of that scenario, of course, is that I absolutely was not neglected. They had taken me to the doctor, repeatedly. I was taking medication, as prescribed. They weren't hermits who refused all medical care. They were trying their hardest, but their kid was sick, and getting sicker.

Despite my friend's conviction that sleeping in the car would be a reasonable choice at that point, she was a single mom with one child. We didn't even have a car that would sleep all of us. Besides, being homeless, especially with a sick child, is likely to result in your child going into foster care. So, while I think that she's a compassionate person and a dedicated parent, I can't agree with her about this.

I think that both my parents and the doctor handled the situation properly. Defer to parents' wishes, but have a plan B in case the child's life is endangered. Everybody's rights and opinions are respected. The child gets treatment, which is the entire point of health care.

My anger is not directed at my parents, who were doing everything that they could. It is not at the doctor, who recognized the illness and its possible consequences. It is at a system that makes parents choose between hospitalizing their child and facing financial ruin for the whole family, or losing custody of their child. No parent should ever have to make that choice. Ever. The only thing worse would be being faced with that decision, and then criticized for it - which is what happens when you decide that all "good" parents will do things the same way.

Our system treats medical care the same way it treats unnecessary consumer products - the whole idea that demand will even out supply and cost. It's not a purse or a car, it's a life. They're different.

So, while I am beyond glad to have had our "Cadillac insurance" while raising my kids, I still view the system as profoundly broken. And I become more and more impressed by my parents' ability to navigate this hostile landscape.