I am the daughter of Lazarus. Like my father the diabetic, the heart patient, the cancer survivor, and the collector of rare diseases, I know that I will always live in a body that doesn’t work the way I’d like. Like my father, I know that disease is the stuff of laboratories and doctors’ offices, while illness refers to the actual experience of living with chronic conditions. I know too much about illness, but what I believe is that being well has nothing at all to do with being healthy.
As a writer, I couldn’t ask for more gripping raw material than my father’s life—like his Biblical namesake, he has cheated death more times than I’d care to count.
Despite all his illnesses, he lives generously, joyfully, and largely. His optimism is infectious, and his ability to prioritize what is important and worth expending energy and effort over is impressive. He throws the biggest parties and the loudest tailgates, and when he walks into a room, it is, quite simply, his. He does nothing—celebration or sickness—halfway. I understand where his intensity comes from, and I understand there is a price to be paid for it.
I’ve been sick since my first breath of air with an equally rare constellation of chronic illnesses—primary cilia dyskinesia, bronchiectasis, and celiac disease, to name but a few. These respiratory and autoimmune problems are not as devastating as my father’s conditions and my accomplishments aren’t nearly as notable, but I do share the same struggle to reconcile the competing desires of my body and my spirit. The more illness takes away from me, the greater the inclination I have to push back against it.
As an adult who has lived through my own life-threatening circumstances, I now believe what my father’s example illustrated all my life to be true. Being well—that is, being content and fulfilled—has nothing to do with being healthy. Health is a luxury I will never have, but its absence does not have to define how I choose to live. My success—personal, professional, even financial—is much less significant than the manner in which I strive for it, something my father, the most successful person I know, taught me.
Between the hospital stays and the surgeries, the daily chest physiotherapy and medications, and the numerous side effects and complications, I’ve reached a place of homeostasis. I don’t dwell solely in the extremes of over-drive or bedridden, and I don’t fight so hard to prove I can do things despite being sick. I recognize that this motivation is not one that will bring me happiness or satisfaction, and I know that accepting certain limitations is not sign of weakness but of wisdom. Even on the bad days when sickness sets me back, I recognize a luxury of my own that not everyone can claim: At twenty-six, as a writer, a professor, a wife, and a daughter, I can say with complete certainty that I am well.
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