“Not all who wander are lost.” Attributed to J.R.R. Tolkien, this is perhaps my favorite quote because I have a terrible sense of direction. When I’m with my parents, favorite tales around the family dinner table often revolve around the time after I got my driver’s license at age sixteen. My family would see me drive by the house many, many times a day, each time heading to a new location. Why? I only knew how to get anywhere by starting at our house! Today I thank GPS, OnStar and Google Maps for helping adult-Cindy get from one place to another. (If only I could get rid of that annoying woman who keeps saying, “Make a legal U-turn to get back on course.”)
For someone like me who is directionally challenged, it was (at least to my parents) highly amusing that my very first job was working at AAA. Irony of all ironies, my duty there was to highlight in yellow the personalized travel routes on “TripTiks,” those bound together maps provided to customers for planned travel. My father swears there are still people wandering the roads 40-something years later trying to figure out how to get home!
Living with chronic illness is a lot like trying to get from Point A to Point B without a TripTik or any sense of direction. Life put me on the road to chronic illness. As with my many other adventures (which is my preferred way to describe being lost), I took a turn from healthy and ended up on the unfamiliar and challenging road to chronic illness. Some parts of this long journey have been relatively easy and smooth; other parts have been bumpy; and, often, such as when trying to get insurance approval for a surgery, treatment or medication, there have been boulders in my path!
However, being genetically optimistic, I’ve always tried to make the best of the journey along this unmapped terrain, even if at times I’ve been a bit lost. And I have been lost in the quagmire of chronic illness many, many times. But, just like when I’m lost in my car, I do my best to get back on the road even when I’m overwhelmed, confused, and perhaps a bit frightened. Getting back on the road for me means practicing really good self-care. Meditating, painting, yoga, writing, observing nature, talking to friends and, maybe because it feels familiar, going for a ride in my car to a new place are all ways to cope with the stress of living with chronic illness.
Learning to live with lupus has not been easy. Even when I try to smile my way through it, I sometimes feel overwhelmed; especially when the accumulating effects of the disease leave me feeling I have no control over my life. This is my darkest place, and when I find myself there, I am left to simply put one foot in front of the other to keep moving forward. Fortunately for me, I’ve come to realize that I actually like wandering. And so I get back up (never give up) and hit the road again.
If I’d known where I was headed when I was diagnosed with lupus, would it have made the journey any easier or my burdens any lighter? I don’t think so. While the not knowing where this is going is hard (always has been), I think about all of the wonderful people who have come into my life because of lupus. I look at the roads I’ve taken and adventures they’ve led me to. This is something I’d never trade. Patients living with chronic illness are not given a TripTik or a map. The roads we travel are not always by choice. But if we’re wandering, we’re wandering together… hopeful, resilient, and finding our way as best we can. Hugs y’all.