My sister has disabilities, and I might, too

It was about a year ago that one of my friends sent me a link to the “Dear Sugar” column. I spent the next week or so reading through the archives, crying with relief and sadness and understanding at many of the letters and replies.

Not so long ago, the featured letter was sent by a person who fears developing cancer, as her mother did. (Yes, yes: go read it!) Reading her words, and the reply from Sugar, triggered a huge storm of emotion in me.

a) I know too well where the letter writer is coming from. I’ve had my share of mortality-based panic attacks. I’ve struggled with discussing with partners the future I know my sister’s care will mean. I’ve long feared that something would turn out to be “wrong” with me, too, especially since now all three of my (nuclear) family members have chronic conditions diagnosed. And I’ve been in the process of seeing a bunch of doctors because my health has been so awful recently…more on that later.

b) As a biologist who has spent a little bit of time thinking about cancer, in the context of evolution and the evolution of disease and in the context of genetics, it saddened me that this person was convinced that because her mother had cancer, she would, too. Most cancers that I know about aren’t strictly inherited, even if some of the physiological traits that can let cancer happen are strictly inherited.

c) I even felt a little indignant! I was frustrated that the letter writer would assume that because her mom was “destroyed” by cancer that she would, too. Not to be too nerdy, but in the movie version of The Fellowship of the Ring, Aragorn is torn by the knowledge that he will be tested by the evil of the ring…and Arwen reminds him that he is Isildur’s heir, not Isildur. (It’s been a little while since I read the books; I remember the same idea being communicated, although maybe in a different way?) Even if we share the tendency to weakness, the pains of our parents are not automatically ours.

I was so sad for the letter writer, and realized that I know enough cancer survivors that I could accept cancer as a serious problem, but not one requiring, so to speak, an unhappy resolution. I don’t know how the letter writer’s life will turn out for her. I wish her well, and I hope that her fear is never realized. Biology is complicated and messy, and so is the human experience.

My own story is starting to show some of that complication.

Those doctors I mentioned earlier? The last one I saw was very confident that she knew what has been going on with me for most of the past year: fibromyalgia. I’m still pretty deep in denial that this is the case, even as I am finding incredible relief in having an explanation for what I’ve been feeling, and in finding that I’m not alone, even in what I thought were my strangest symptoms. It was a shock, and it’s taking some time to internalize. (I am no longer the typical child! Weird!) It will take even longer to learn how to manage my life going forward, and that fear makes me cling even harder to my denial!

It’s a strange weight to carry, this idea that because our loved ones have suffered at the whims of their bodies that we must, too. I suspect that I am not the only sibling of someone with disabilities who has felt that way. When you find out that you’re not just living with a superstition, but actually facing your own major diagnosis? It’s a lot to process, even if what you’re experiencing is unrelated to what your loved ones face. I don’t have my sister’s epilepsy, or cranial malformations, or her high glaucoma pressure, although perhaps we share something that has affected our neurons. I don’t have my mother’s multiple sclerosis, or my father’s diabetes, or my grandparents’ alcoholism. And although I am still reluctant to claim it as my diagnosis, fibro won’t keep me from being a good sister, and it won’t prevent my being there to help care for her when my parents are no longer able to do that.

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