Last night complications from his colonoscopy combined with his shaky condition warranted a call to Thing1’s doctor. As I waited for the pediatric G.I. on call I thought, as I have more than a few times since this journey has begun, how well he has had to learn one of life‘s most important lessons.
A younger sounding woman got on the phone and asked his latest symptoms. She sympathetically told me to monitor him through the night and gave benchmarks for when I should take him to the emergency room. I hung up thinking, as I have many times over the summer, how incredibly lucky we are.
Several times over the summer we have visited Dartmouth-Hitchcock to have iron infused or blood transfused. The infusion rooms accommodate two patients at a time, and while I don’t subscribe to the idea that misery loves company, company often gives the gift of perspective.
A young woman was already in the second chair when we went to the first iron infusion. She told us that she had just been switched to a new biologic to treat the ulcerative colitis that had plagued her for almost a decade.
“Yeah, I was just in the hospital for three months,” she told us, her tone sparkling with sarcasm. “My insurance brilliantly kicked me off my old drug that was working for three years, and I went into the worst flareup of my life.” She went on to tell us about all the longterm hospital stays and the drugs she had tried over the years, including a brief but successful stint with medicinal marijuana that ended catastrophically when a new job told her that a positive THC test what get her fired. She told us how great T1’s new drug had been for her and how that success had also been interrupted when an insurance company dropped coverage for it.
“Assholes,“ she and the nurse who had just come in to load T1’s IV said in unison. They each sounded a bitter laugh. She said considered she still herself lucky because she was able to get care. No one in the room needed to be reminded that there are plenty of people without adequate care and some with little or no care.
Through all of the tests and infusions and diagnostic procedures, T1 has had access to the best possible care, and we owe that access almost entirely to good luck. We found his pediatric G.I. through a connection with my father, a retired pediatric G.I. who still consults and is engaged in research around the world. We were able to transfer his referral to that hospital because I lucked into a job that not only covers 100% of our health insurance premiums in a good plan but fully fund our co-pays and deductibles, fundamentally changing our healthcare strategy for him to focusing on the quality of care.
I work hard at my job, and I love the company I work for — not just for the insurance but for the people. Every day, however, I realize that finding this company that protect its employees so well was a stroke of luck. If I were still at the previous job, my insurance would have conked out after I picked up the first $800 a month prescription. every day, I also realize, that finding the right person for the right treatment should not depend on knowing someone who knows someone.
Every once in a while as we’re driving home, when T1 is feeling particularly tired, he’ll try to divine the cosmos and figure out what he did to deserve this. he never got in trouble at school. He’s always willing to help, and, as he has reached adulthood, has taken it upon himself to watch out for the needs of the people in his life. So he’ll wonder aloud if he could have played fewer video games or done more homework to prevent karma from leaving him so incapacitated. It never takes more than a mile or two before he says the kind of thing that makes me most proud of him.
“I don’t deserve this. Nobody really deserves this,” he’ll say. “I wouldn’t even wish this on somebody who had done something really bad.“ About the time we’re passing the Quechee gorge, he’ll usually confirm for me once again, that he has learned when the most important lessons in life.
“Life just isn’t fair.“
Driving home from that infusion, however, we talked about how funny and bright that girl in the infusion room was. We talked about how it wasn’t life but a system made of people making conscious decisions that resulted in an unfair reality where drawing the lucky paycheck card lets one young person focus on the quality of their care while an equally hard-working and promising young person spends a disproportionate part of her life fighting for the access to the bare minimum care just keep herself alive and out of the hospital for most of the year. We both understood that, there but for the grace of God and the system, T1 could be in her chair.
Thing1 has accepted his illness. We all have. We are all understanding that being ill has nothing to do with fair or unfair. What each visit to the infusion lab and each conversation with other patients at the hospital has taught us is that much of the unfairness in life is the result of the world we have made. It didn’t just happen.
Next week or next year, Thing1 will be going into his adult life. He understands that often the world won’t seem fair because it isn’t. What I’m hoping this experience, what these perspectives gained from the company we’ve been keeping, will teach him is that the system will ultimately be as fair or unfair as we decide to make it.