When my daughter was four years old, a visiting friend asked her what she wanted to be when she grew up. Lelu, who has always been the most self-possessed person I know, answered “Can’t I just be me?” I told her “Yes, of course, that is what you should be. They mean what to you want to DO when you grow up?” Lelu, being both too young and too wise to limit her identity to a job, confidently responded, “I want to do something important, I want to laugh a lot, and I want to be with the people I love.”
I immediately wrote it down in my journal because it was the best and clearest set of life priorities I had ever heard. I already knew that my daughter was extraordinary but that clarified for me just how blessed I would be to have her in my life, inspiring me and keeping my direction true. I have since shared those words with my family. They have become a bit of a motto for those of us who are trying to navigate career, personal life and expectations from our overly scheduled American culture.
But I also keep those words in mind as I struggle to find satisfaction in a life limited by the chemical sensitivities of TILT. I want all those things my daughter listed, I think they are the most important things. How can I do something useful and impactful (my version of important) if I can’t work outside my home? Well there are ways, but they are nontraditional and take a bit more creative energy to envision and then make happen. As the kids get older the mom gig takes less of my time, but more of my energy thanks to unavoidable parenting exposures. This leaves me less energy than I would like to put towards being useful to people beyond my immediate family. It is a lot of time management and forgiving myself when the unexpected happens. However, I am tutoring at my kids’ school, which lets me indulge my thwarted inner teacher, and I have been published in some recent issues of The Human Ecologist, which feels very useful.
How can I laugh a lot when I struggle with negative emotions so often? I have to give myself permission to cut loose and have fun. If I have a reaction and am incapacitated for a few days, my instinct is to come out of that angry and with a full to do list as I try to catch back up with my life. I am trying to turn that instinct down some and instead give equal time to laughing. It can be as simple as watching a sitcom with my steadfast and patient husband, a morning on the water with my mom friends, or a phone conversation with my sister.
How can I be with the people I love when travel is difficult? That one has been easier for me than others with MCS because my family has always been so understanding and supportive. They come to me often and accommodate me when I go to them. Even though our intentions are clear, it still takes work to be with people I love. I try to host at my house once a month for local friends. I usually host a family gathering once a year. I travel to see family at least once a year. And every summer road trip with the camper includes a stopover with an old friend. I put out the effort to make it happen (which has health repercussions) and they put out the effort to accommodate me (which is not easy for them).
I know these issues are not unique to chronic illness. Settling a life credo onto your actual life is a struggle for everyone. There is huge gap between what we want our life to be and what it is. We all have our own compromises and adaptations as we work to make the ideal fit onto our reality. I wish everyone had a Lelu in their lives, to at least keep the concept simple enough to fit on post-it. It’s the perfect counterbalance to a TILTED life.