At What Cost?
It seems to always be about the prices that we pay. Our efforts to have a normal existence, and participate in life with others come with a price tag – and not the kind everyone else gets. We pay. To have fleeting moments of small joys, we pay dearly. The ups and downs of Lupus are just a part of our path. We learn to manage them and keep moving when we‘re able… or just keep breathing when we can’t do more.
I kept thinking… what if I’d known sooner. If only I could have known the harm I was causing myself at times. I could have taken better care of myself with some knowledge. One day in the middle of that thought, I realized what that would mean. What would I have done? Not ski? Not hike the Glacier Point trail in Yosemite… or Samuel P. Taylor Redwoods… or Muir woods? Not sit in the sun and soak up it’s cheery warmth, or skindive off Catalina Island? Not spend that night alone in the forest tending a fire and listening to the earth itself? Not canoe all day down the Illinois river with my friends? Let my 2 acre yard be like anyone else’s instead of learning to tend a wildlife habitat? Say no to a night hike in Missouri that made my first time ever seeing fireflies (by the hundreds) an incredible, forever kind of memory? The thousands of little things I could change about the way I’ve lived my life will not change the outcome of this disease being a part of it. I had moments in it so amazing that they defy literary description. I carry them in my heart. I would not trade them all off even to extend my years by whatever small bit extra it could give me when I am old. What will I have left to think about when I am old? Having done the things I leapt out and embraced, I know… fireflies, sunsets, oceans, rivers, birds, trees, people, traditions… God’s grand creations.
Had I not given myself to the years that I had in front of me to immerse myself in my Native culture, what woman would I be? I miss the hours of Gourd Dancing, and the whole weekend at Pow Wows… listening to the Drum and the smell of sage in the air. It’s part of who I am. I was always told I was a strong young woman to stand and dance all day in the sun (when it was the men and mostly just a few older women). Now, I have to find a way to still embrace it without overdoing it. Yet… there are my memories of a time when it was easier. It was my path. Maybe those prayers are an investment from my heart that carries me now. If so, it was strength, and years, well-spent.