Genetics and Fate

I have two younger brothers, both of whom are in good health. I feel only positive about this, and the fact that they are both healthy makes me very happy. I think sometimes about what would happen if either of them were injured or got sick, or if they developed any form of any of my chronic illnesses. Honestly, it would break my heart. I think their good health is a source of stability for me, something steady I can count on. But that’s probably unfair, because I wouldn’t want them to feel guilty for me if their good health ever changes. And there is so much guilt and pressure wrapped up in good health and ill health and the state of our physical bodies - not just for families of someone with chronic illness, but especially so.

My middle brother, who is about seven years younger than I am, called me recently to discuss a fundraising race he wants to run in the spring. He lives out west, where he’s able to do the outdoor adventuring that he loves. I consider him an athlete, although he doesn’t actively play one sport on a regular basis. He told me that he’s getting back into running, and he wants to take the opportunity of running this race in Idaho in the spring to raise money for a nonprofit connected to my health. He asked my opinion on which organization to fundraise for, and between the National Pancreas Foundation and the Pancreatic Cancer Action Network, we decided that PANCAN has easier options already set up to match what he’s trying to do. I thanked him for considering me in these plans, and for dedicating so much of himself to supporting organizations that are working hard to support me and others in my position.

He told me that he’s been thinking a lot lately about our genetics and what it means that he got lucky while I didn’t. He said he wants - maybe out of a feeling of responsibility or calling - to be able to put his good health to use, for causes related to everyone’s health. This is admirable. I can imagine that being so closely connected to illness while being personally healthy and fit might make one think a lot about luck and good fortune and whatever else you want to call whatever it is that determines these things. It’s true that both of my brothers could potentially carry the same genetic mutation I do, even though neither of them has manifested any evidence of the disease associated with that mutation. The fact that neither of them has, past the age of puberty, means it’s more likely that they don’t have this same mutation. But there’s no way to know unless they get tested, which isn’t clinically necessary. Similarly, there’s no way to know whether this mutation started with me, de novo, unless both of my parents get tested for it, which is also not clinically necessary (or covered by insurance). So we all live with some mystery, and make assumptions and decisions based on the clinical evidence presented. That’s really all anyone can do.

I don’t know what it’s like to have a sibling with chronic illness, especially in childhood. Over the past year, as I revisit my childhood experience of illness and reconcile that with new developments in my current health, I’ve thought about what it must have been like for my brothers when we were all kids and I was sick. When my hereditary pancreatitis first manifested, with acute pancreatitis when I was nine, my middle brother was about a year and a half old and my youngest brother wasn’t born yet. So, essentially, they both have known me to be sick their whole lives. I know this impacted them, at the very least on a logistical level, as I had so many doctor appointments and medications and spent time sick at home. Throughout it all, my parents had to divert attention to me, which I'm sure sure affected my brothers. Especially for my middle brother, my early illness directed the course of his young life to some extent. While I was in and out of the hospital for months at the beginning, he went to stay with our aunt and uncle in the next state, so my parents could be with me in the hospital. He may not have noticed or minded this much, being so young, but I’ve studied early child development enough to know that everything impacts a person’s development between the ages of zero and five. We are all fortunate that we had loving and generous family close by to help out, and there are many ways in which my parents and I got through those early experiences of my illness because of the kindness and goodwill of our “village.” I don’t know, though, what this experience meant for my brother, and he might not really know either.

And now both of my brothers have to live with the fact that their sister has cancer, and at a young age for all of us. I don’t know what this is like, either. But I know that they have both been there for me in very significant ways since my diagnosis, and this means a lot to me.

My grandfather commented on my last post that he doesn’t like to say that he’s “blessed” with good health because “that implies that those who don’t enjoy good health are ‘cursed’ with bad health.” I agree completely with this sentiment, and I don’t feel that I have been either cursed with bad health such as pancreatic cancer or blessed with the good fortune of avoiding death so far and finding success in my treatment. I believe that these things just are and we can’t control what happens organically to or in our bodies. No one is to blame for these things. There is no point in looking backwards, trying to trace lines of cause and effect for “fortune” or to find “reasons” why “bad” things happen to “good” people. Life just is.

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I’d like to close with two quotes from my favorite Buddhist teachers, Pema Chödrön and Thich Nhat Hanh. I know Buddhism isn’t for everyone, but I find a lot of comfort in it:

“Letting there be room for not knowing is the most important thing of all. When there’s a big disappointment, we don’t know if that’s the end of the story. It may just be the beginning of a great adventure. Life is like that. We don’t know anything. We call something bad; we call it good. But really we just don’t know.”
-Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times

“If you can accept your body, then you have a chance to see your body as your home. You can rest in your body, settle in, relax, and feel joy and ease. If you don’t accept your body and your mind, you can’t be at home with yourself. You have to accept yourself as you are. This is a very important practice. As you practice building a home in yourself, you become more and more beautiful.”
-Thich Nhat Hanh, How to Love