This week, 59-year old Zoe Koplowitz completed her 20th New York Marathon. Zoe finished the Marathon in 28 hours and 45 minutes. She was the very last finisher in the race. But she finished. And given the fact that Zoe was diagnosed with MS over 30 years ago, finishing the race was a testament to both her mental and physical perserverance. Clearly, Zoe knows how to finish a race, even when it's meant crawling over the finish line.
Sometimes it's hard for me to accept the randomness of multiple sclerosis. We don't know why one person gets MS and the next person doesn't. We don't know why one person with MS has one set of symptoms while a second person with MS has a completely different set of symptoms. And we don't know why MS progresses at such different rates among those living with the disease.
Jeanne was diagnosed with MS 10 years ago. At that time, she was symptom-free. Now, she's confined to the hospital bed we've set up in our bedroom. She requires constant care. She won't be running...or walking...any marathons. How do you make sense of the disparity in the level of disability between Zoe and Jeanne?
As Jeanne's husband, I find questions like this can absolutely pull me out of whatever I'm doing at the moment and stop me cold. And I don't ever end up embracing any profound lesson...just the simple truth that "life happens." Sometimes these uncomfortable questions come to me when I'm reading an article about someone like Zoe. Or sometimes they come to me when I'm watching a TV profile of presidential candidate Mitt Romney, and they point out that his wife has MS. Except she looks fabulous and acts as if she's healthier than I am. Yesterday, the question came from Jeanne herself. In her barely audible whisper she asked me, "Do you know the date that my life stopped?" Try answering that one with some sort of a reasurring smile on your face. I actually found myself hoping for the cognitive haze that she regularly deals with to descend sooner rather than later. But part of me also was put on notice that on some level of her consciousness, this is what Jeanne is thinking about.
Sometimes being a caregiver is about providing logistical support. Getting that special person in your life to their medical appointment, deciding that an accessible van is a hundred times cooler than that sports car you had planned on or literally carrying that person over a rough road or up a few stairs that they otherwise could not have navigated. Other times, being a caregiver is about battling to just keep running the race yourself so that you can look that special person in the eye and remind them of all the ways that their life never stopped.
Zoe Koplowitz has the good fortune of feeling great when she crosses the finish line of her marathon. I'm feeling fortunate that I'm still running my race, happy that the finish line is still not in sight.
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