Chronic illness gives you the opportunity to see what matters, if you let it.
I close my speeches with this line. In my memory (apocryphal?), my first neurologist said this after telling me I had multiple sclerosis. Those words meant nothing to me at the time. Yet, they stayed with me and, over the years, took on a life of their own.
This line used to be part of my opener because I thought it was “catchy”. But then I realized that it’s the most important that I want people to remember — because I believe that it’s the most valuable thing I can say about living a life with difficult health. So it became my closer.
I know how hard it is to put your focus on what matters, never mind put it into action, when you’re facing the chaos that comes from living with unpredictable symptoms. You’re bombarded daily with career, family, healthcare and financial questions. Who could blame you for pulling the covers over your head whenever you can? Who wouldn’t want to shut out that noise?
Okay. But how are you doing with that response — putting out fires, responding to what’s nagging at you the loudest? If your answer is, “Not so good'” and you’re looking for some help, read on.
Here are 3 recent epiphanies that I had recently. I hope they help you to put your focus on figuring out what matters to you. And to act on it.
1. In his N.Y. Times Article, The Best Possible Day, Atul Gwande, reminds us how critical it is to pay attention to what matters to you, particularly when you’re in a healthcare event. Gwande describes how his daughter’s beloved piano teacher continues to teach her students even as she knows she is dying. She chose this rather than another hospitalization and treatment that offered little hope. She chose what she knew would bring her joy rather than hold onto a hope she doesn’t have.
Honestly, isn’t this the clarity we want? Maybe you find that making such choices come naturally. But for most of us, it takes a deep dive to find that place where you can focus on who you want to be and what you want to do while meeting such challenges.
2. This week Tom Magliozzi, one of the Click and Clack Tapp brothers (Car Talk) on WBUR, died. I’m not interested in how cars work but I was a long and loyal fan of their show. Tom’s infectious laugh made me belly laugh– and that’s saying something. I’d wondered how these MIT grads had arrived at hosting a car radio show on NPR. Turns out, many years ago, Tom had a near-fatal car accident. After that, he left a very good job because he decided he had to DO something with his life that mattered to him. In the end, complications from Alzheimer’s killed him. I wonder if he brought that humor and clear intention to have fun to the difficult challenges of living with a chronic disease?
3. This morning, facing the start of new day, feeling the various difficult places in my body and trying to wake myself up, I got an email that a colleague in the Patient Advocate world had been recognized as one of the Top 15 ePatient Influencers. I was delighted for her . But I have to admit that I was also a little jealous and then worried. I haven’t received an award so how do I know that what I’m doing matters?
That’s when I saw my copy of Atul Gwande’s book, Being Mortal, (from which the article is excerpted and I’ll write more about next time). That was a reminder I needed. It helped me get back to what matters to me, help me focus and shut out the noise. When the phone rang and it was a client, I was grateful to dive into my ‘zone’. When I’m coaching and working with people to be as successful as possible in their lives, I’m doing what matters most to me. It took me many years to figure it out but I know what I need to do to keep thriving.