Somebody asked me a few days ago, how I am able to live with and accept the impact of Lyme disease on my life. The resulting conversation helped me achieve a new understanding of what it means to live with a chronic condition.
Because Lyme disease is potentially curable, I find myself living with constant cognitive dissonance. On the one hand, I must believe I can be cured. Otherwise why treat? Also, treatment is less effective if you don’t believe in it. This creates a situation that requires faith. On the other hand, I must accept things the way they are. Otherwise I would constantly be unhappy with my lot. This is not always easy. After getting everything back, losing pieces of myself again is at times agonizing. There’s nothing I can grapple with physically in this fight, and sometimes I get tired of fighting. But in the end, giving up would be far worse than continuing, so I keep going.
Really, though, successfully living with Lyme disease is about more than mere acceptance. It is about working toward quality of life over quantity of life. But even that isn’t a fair statement of what it truly means to live with a chronic condition (or any disability). Living with Lyme disease means understanding that Lyme disease is not (only) a negative, it’s a positive. I know this sounds crazy, and I don’t feel that way all the time, but let me try to explain.
Any artist knows that the medium they use constrains what they can produce. This “liberating constraint” often enables their creativity. Similarly, a cook who is comfortable in her own kitchen may appreciate the having only few ingredients because it pushes her to create something new, or perhaps because it just simplifies the task for the day. Constraints can foster creativity, simplicity, or simply guide growth.
As an example, last spring I took on the project of building a cloche with my kids. A cloche is a structure that goes over a garden bed and protects it from the elements, extending the growing season. Our cloche was made from wood, pvc pipes, and a plastic “cover.” We were only able to work on it a small piece at a time, and it took weeks to put together. But the kids were engaged in every step of it, because my fatigue led me to sit back and let them do the work, at their own speed, even if it was only one drill hole or screw at a time. Working on that together was a wonderful bonding experience and it’s something we still are able to use and benefit from. My illness was not a challenge or a negative with respect to that experience, just a liberating constraint.