Personal Perspective: Living with and adjacent to chronic illness is hard. What if I'd never been forced into this role? Who would I be?
Recently a friend told me of the gentle passing of her 97-year-old father. They'd become very close, especially during his last years when he moved in with her and she became his sole care partner. Generous and open-hearted, she operated from a place ofof her capacity but also reminded of the tremendous gift of time she had with her father.
I didn't have that same luxury with my parents. My mom died at 55 and my dad at 74. Still, I linger in the land of what if, even when I know it's not productive, and wonder what if I had more time with my parents? What would I have learned, and how would our Living under the shadow of chronic disease has informed my worldview and expectations in all ways. I've wondered what life would be like without this added weight, which I've experienced both as a child with my mom, who had multiple sclerosis from age 30, and now with my husband, who has had young-onset Parkinson's disease for 25 years. I have had chronic intermittent back pain since I injured myself in gymnastics five decades ago. Is it productive or remotely useful to wonder what life would be like for the healthy? I am not alone in this particular type of longing: the one where you wish the disease set in later or with less impact, or the real wish to have no disease at all. It is an imaginary land built on too many"what-ifs," and yet it exerts its hold. I could have had this same line of thinking when I was a young, elite. But if I wished to be stronger or faster, I could exert some control over the outcome by making wiser training choices to help me improve and to get better. The secret sauce in training to be better is balancing rest with hard work. WithHope was—and is—the engine that has kept me going and provided a lifeline to our future. Did I inherit my capacity for hope from my parents whose lessons taught me acceptance and dared me never to give up? Did Dad ever languish in the land of"what if" and wonder how different his life might have been without the burden of Mom's disease? Did she? I was too self-absorbed as a child to realize the depth of their experience, and they died before I could ask them.):"Therefore do not worry about tomorrow, for tomorrow will worry about itself." It provided a means for him to shut down his worry. His way of coping was to acceptand it worked for him. Me? I worried then about Mom, and now for my husband. Longevity feels elusive, and the weight of caring overwhelms, but I agree that leaning into the is-ness can provide solace and, with it, relief. Does it help to muse about the imagined lost chances and a myriad of missed opportunities due to disease? The luxury is not to ponder good health, but to work for it and know when you have it. And when it's gone, to mourn the loss.for most of our time together, and it has granted us the freedom to spend little time wondering how it might have been. Instead we focus on what we have: our family and community. When the dice rolled the wrong way, it gave us the chance to createwhere we educate and inspire people living with Parkinson's so they, too, can live better. We have changed—and are changing—countless lives through our collective philanthropic work because of what is. Together, we thrive.a former Olympic speed skater and cyclist, is the co-founder and board member of the Davis Phinney Foundation for Parkinson’s.Being overly polite might seem kind, but it often leads to problems anyway, in relationships, with friends, and at work.
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