We all have burdens to carry. Some of us carry heavier burdens, some carry more. It’s easier for me to carry mine close inside, where few people see them. So when I am asked the ubiquitous “Hi, how’s it going?” I am reminded to never ever answer truthfully. Yes, I realize the question is most often a social courtesy, but there are times when I want to answer it truthfully.
Parkinson’s hurts, more than those of us who have it let on. It cramps my foot into knots so tight I can’t walk, or causes painful movements I have no control over. There’s the hiatal hernia that is causing acid to erode my esophagus and larynx, but this must wait because it is not the priority. The priority is cataract surgery, because seeing has become more than just “challenging.”
Cataract surgery on someone’s ONLY eye is beyond frightening. That one “good” eye has been damaged by not only a cataract from steroids, but also from being attacked by my body’s immune system for two years. The logistics of injections into my eye, scheduling around immunosuppressive drugs, and the need for general anesthesia, make this even trickier. Things can go wrong, and with one eye, there’s just no fall back position.
This is not anything those asking “How’s it going?” have thought about
But there really, truly are some amazing, wonderful things that have happened in the last three years. Not to acknowledge them is not to value them, and I do.
I have met some wonderful people in the Parkinson’s and the ballroom dance communities, and have tried to keep in contact with my sisters in Sisters and my sailing buddies.
It’s hard to remember sometimes, but I helped sail a 56-foot sailboat to Alaska and back, over four months and 2,000 nautical miles the summer of 2017. I’ve sailed the San Juans at 11 knots, been at the wheel when we’ve been wing on wing, helped dock and anchor her in all sorts of amazing conditions. Seen orca, and gray whales, spinning dolphins, seals, sea lions, and fallen asleep to the sounds of their breathing as waves lapped at the hull, just inches from my head.
I have competed in two ballroom dance competitions, and not embarrassed myself, my instructors, or my studio. Donned evening gowns, sparkles, and looked marvelous thanks to some amazing make-up artists.
I’ve danced down streets in Canada, Alaska, Washington, Oregon, California, Washington, DC, and Indiana.
I have hiked, and led friends to do the same thing, even when we and others did not think we could. Raising money for Parkinson’s concerns, raising ourselves up the sides of mountains, and raising our faces to greet the universe.
I have worn a tiara.
My goal when I was diagnosed with Parkinson’s was to “go anyway.” I’ve done my best so far.
Now, my Parkinson’s is worse. I am thinner, but I am stronger, and I am learning how to be at peace, again, with myself. I once thought peace was permanent as I wrapped up warn and watched the sunrise, holding my breath as i memorized the moments. But I know now it must be relearned, at least for me.
I have not been given the power of a whole lot of choices in recent years, but I have tried. And I will continue to try.
I will work hard to focus on the triumphs rather than the tragedies, the strengths rather than the weaknesses, and the power of going anyway. I was not meant for a recliner. I was meant for more.
So, if I pause when you ask me “How’s it going?” and smile in a way that’s hard to understand, please realize I am measuring my response. It will do neither of us any good if I say, “I want to go back to a beautiful morning, please. I’d like to hide from my life. Would you mind if I just stepped away for a bit?”
Instead, I’ll thank you for the concern, and I’ll tell you about the good, and the hope I have for a more normal life. This is what you want to hear, and this is what I want to think about.