Fatherhood, Philosophy, Uncertainty, and Rheumatoid Arthritis
"When we are self-indulgent and uncritical, when we confuse hopes and facts, we slide into pseudoscience and superstition.” - Carl Sagan
We had to speak loudly to be heard above the hustle and bustle of the busy downtown bar. The food was overpriced and mediocre, but that didn't matter. We had come for conversation. My friend Brandon was discussing the Russian literature of the 1800's and his love of existentialism, and I was trying to convince him that he needed to explore the boom generation of South America when he finished exhausting Gogol and Dostoevsky. We are both in our young thirties, and one year into being new fathers. We share a passion for literature and bicycle racing, and when we get together it is always a lively discussion.
When I told Brandon that I have rheumatoid arthritis, he said what I wish many others would. He replied, "I don't know what that is," and nothing about the way he said it conveyed embarrassment or insecurity. I explained it to him, and then with a tone of concern, he asked a whole lot of questions: What causes it, how is it treated, what is the long-term prognosis, what is it like living with it, and how is it going to affect being a dad?
My quickest assessment about RA and fatherhood was that it makes what is already one of life's greatest challenges, even harder. There is nothing easy about parenting, and nothing easy about RA. Combine the two, and you have enormous challenges. Brandon wanted more than that. He wanted the real truth: What are my hopes, what are my most personal convictions, what are the hardest lessons I have learned, and how will I teach them to my new son? I had some responses, but it wasn't the raw stuff he was looking for. He wanted what is genuine, not what is convenient and easy to say. I have thought a lot about it since, and have a few answers:
Karl Popper was an Austrian-British philosopher of science in the 1900's. In the philosophy of science, there is what is called the line of demarcation that separates legitimate science from pseudoscience. Popper is most well known for saying that a theory must be falsifiable to be considered scientific. Falsifiability refers to whether or not, in principle, a theory can be tested and invalidated. Many of his critics, both scientists and philosophers, point out that the falsifiability principle is extremely important, but insufficient for differentiating science from non-science.
Regardless of the complications surrounding the line of demarcation, Popper said something in his autobiography that I want my son to know and learn: "The secret of intellectual excellence is the spirit of criticism; it is intellectual independence."1
As a young teenager, I was convinced of the absolute truth of the worldview I was born into. I also loved books, and as I grew I flirted with other ideas, and began to subject my own beliefs to critical thought. As I neared twenty, I had changed my perspectives, opinions, and beliefs significantly. The result of my newly gained intellectual independence was the loss of dear friends, and the loss of the support of my family for many years. They saw my divergence as a personal failure, and not struggle towards knowledge. I never want my son to know what it feels like to be dismissed by those he loves, and to live in loneliness and confusion. I hope as he grows into an adult that I will get the opportunity to learn many things from him. I hope too that he never knows the second great trial of my life, rheumatoid arthritis. I hope that he never wakes up to swollen hands, wrists, shoulders, and feet as I often do.
Willingness to take risks
The treatment of RA carries risks. I know that when I inject myself with certain medications, or swallow certain pills, that I am increasing my chances of severe or even life threatening outcomes. I also know that if I do not treat my RA, the long-term risks to my health and joints are higher, and my immediate reality of pain, stiffness, and inflammation is unbearable. My deepest conviction I want to pass on to my son is that taking calculated risks is a part of life, whether it be in love, athletics, work, or RA.
The first article I wrote for Rhuematoidarthritis.net was about a Mayo Clinic study that may have isolated three specific microbes that the researchers concluded may contribute to the onset of RA. When I read the study, I was excited because it discussed something I have wanted to know since I was diagnosed, but it also raised many red flags. The infectious cause hypothesis of RA has never been demonstrated, no single study is conclusive, there are untested hypotheses that tie the bacteria to inflammation, and it was far outside of my knowledge base. After writing a summary of the experiment and what the researchers concluded, and stating my own caution for all of the red flags I mentioned, I reached out to the Society for Science Based Medicine to see if they might chime in, and if any practicing doctors might comment on the article.
Dr. Harriet Hall responded: "This study shows an association of RA with certain intestinal microbes, and shows that a role in causation is biologically plausible. It has not been replicated, and it doesn't establish causation, much less suggest an effective treatment. It is intriguing to speculate about these findings, but they are best characterized as preliminary and insufficient to guide clinical practice. It's the kind of thing I file away in the back of my mind while I await further developments."
Dr. Kimball Atwood had written about something similar previously, and directed me to it. "When I first learned about Sarcoidosis and Crohn’s disease in medical school in the 1970s, I would have bet dollars-to-donuts that they, and rheumatoid arthritis and a few other diseases for that matter, would eventually be shown to have infectious etiologies. I would still almost make that bet, my only hesitation being that after 30+ more years of investigations and impressive advances in microbiology (including vastly more powerful methods of detecting well-veiled foreign invaders, from electron microscopy to nucleic acid amplification), no apparent culprits have been found."
I was happy I reached out to these doctors. Though a role of microbes in the disease pathway may be plausible, and is compelling to discuss and think about, the evidence is not in, and they will not make any decision about it until it is. They will continue to practice with the best and most reliable knowledge they have, because that is ethically sound.
I want my son to understand how important that willingness to sit with uncertainty is, whether it be knowledge or living with RA. The cause of RA is unknown, whether or not a treatment will work for me is unknown, how long a flare will last is unknown, how the disease will progress for me is unknown, and the condition I will wake up in tomorrow is unknown. The hardest lesson I have learned in my life, is to live with uncertainty.
The ideal and the real
How to pass these things on is another type of question entirely, and I can't answer it. I have a stepson who is twelve. I love him deeply and want the exact same things for him. I know from experience that the daily reality of parenting is not filled with profound life lessons. My wife and I spend most of our free time managing media use, washing dishes, driving, cooking, doing laundry, buying groceries, dropping off and picking up, and trying to complete an endless list of things to do that never gets shorter. All of those things take much longer with RA. Teaching our kids about life, love, and how to live, is our goal. We make time for that and set an example. But passing on wisdom or personal values is not a box that gets checked off when completed, it is a never-ending commitment that requires constant adaptation.
No matter what my ideal is, the real is that kids have their own temperaments, desires, aspirations, and personalities. They are not blank slates that I can inscribe the future on. My children will be touched by my struggle with rheumatoid arthritis, but I honestly can't say in which ways. The disease comes with so many unknowns, just as a child does.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?