This past weekend, I had the honor of speaking at a brunch put together by the ALS Association, MDA, and ALS Ohana in celebration of ALS Awareness Month. In Hawaii, Governor David Y. Ige issued a Proclamation in which May was designated ALS Awareness and ALS Families Appreciation Month and so I felt very blessed to get to spend the morning sharing a bit about my story as a caregiver for my Mother-in-Law, Peggy Chun.
Peggy was a local watercolor artist, who lived with ALS for 6 years until she died in 2008. Caring for Peggy and managing her care group and art business was one of, if not the, most transformative experiences of my life. It was really in preparation for Saturday’s speaking engagement that it really hit me how much Peggy has inspired the work that I do today as a Best Life Ever life and business coach.
I absolutely love my joyous “job” (doesn’t ever feel like a job) of coaching people from scattered, busy, and overwhelmed to what we at Best Life Ever call “purposely productive” and inspired. Everyday I get to help people to create lives they love, their individual “Best Life Ever”, by helping them find their purpose, their joy, and by helping them to reduce stress, make life easier, and create more time for what truly matters. The more clients that I coach, the more that I do the work that I do, I realize that these are the exact philosophies that Peggy lived by and I truly feel her inspiration and guidance leading me each day.
I enjoyed sharing Peggy’s and my story so much, I thought I’d share it here too. As I mentioned, Peggy was my mother-in-law, and while her son Eric and I are no longer married, we have 2 amazing kids together (that’s our daughter Indy holding the paintbrush in her mouth like her “Puna” Peggy in the photo above) and we are great friends and forever family to each other. I had been dating Eric for just over a year when Peggy told us that she had been diagnosed with ALS. Peggy’s form of ALS was familial, her grandfather, mother, and twin sister had all died from ALS, so in many ways, I think the dynamic, larger-than-life, and often frenetic way that which she lived was partly due to the awareness she had of this illness and the high possibility that it would take her life too. Before I met Peggy I had never heard of ALS. I remember reading Tuesdays with Morrie to learn more about this illness that all of a sudden was becoming a big part of my life.
Things moved quite quickly after that. Just months after Peggy told us, she began losing strength in her legs. I began managing Peggy’s art business so that she could focus on just painting and her health. Right around the same time, Eric and I got married in the wedding of the century – we didn’t know how long Peggy had and so our wedding was as much a celebration of Peggy’s life as it was a celebration of our love and it was awesome! We had 550 people, mostly Peggy’s friends and family and many of those guests were or became part of the Peg’s Legs, a care group we created for her based on the book, Share the Care, which I highly recommend. Our group, the Peg’s Legs, became the largest, most amazing support system, not just for Peggy but for our whole family. Managing this group and her care was like running a mini-hospital and was incredibly complicated and intense, but it is the reason that Peggy was able to continue painting, living at home, and living her “Best Life Ever” until her last breath.
Through Peggy’s 6 years with ALS, with the support of the Peg’s Legs, Peggy continued to paint and grow her art business. She went from painting with her right hand, to painting with left when she lost use of her right. When her hands no longer worked, she used her mouth to paint. And when her mouth could no longer hold a brush, she even found technology that would allow her to paint on a computer using her eyes controlling the cursor. And when her eye movement became weaker, she found a company that would come in and hook sensors up to her brain activity so that she could create what she called her “Brain Paintings”.
In her 6 years with ALS, she created hundreds of paintings, she wrote a children’s book about her art and illness dedicated to her grandchildren, she went on a book tour, she shared about her illness and worked closely with every ALS organization there is, she starred in documentaries, she found the daughter she gave up for adoption and developed a beautiful relationship with her and her family, she wrote letters to everyone she loved, she recorded herself reading books for her grandchildren, she threw countless parties, gave a million gifts, organized endless surprises for her caregivers and family, and created and crushed a ridiculous bucket list (imagine Peggy with her electric wheelchair and ventilator and a dozen of her caregivers and nurses in animal costumes on the SuperFerry floating past a spectacular view of Moloka’i, most of us violently seasick).
As you can see, Peggy LIVED “purposeful productivity”. How was it that Peggy could get so much done despite the fact that ALS was taking over her body? Because Peggy prioritized getting the things done that were deep and meaningful, instead of fussing over all the little things that make us feel busy but unsatisfied. How many of us fill our days with email, chores, superficial interactions on social media, and other busy work. We tell ourselves that once we get everything done, once things “settle down”, then we’ll do the big things, then we’ll write the book, then we’ll hit that bucket list, then we’ll do more of that hobby, then we’ll have fun, then we will spend time with the ones we love…then we’ll do the things we REALLY want to do. But that time never comes, things don’t settle down, our lists are never complete, we get sucked into the busy work and suddenly we look around and time feels like it has snuck by. We don’t remember when our kids got so big or how we got so disconnected from our loved ones and sometimes we don’t even recognize ourselves.
Honestly, when I cared for Peggy, her “purposeful productivity” mindset drove me nuts. I was so focused on her illness and her care that I didn’t see the big picture. I would get so frustrated asking her questions about her health to prepare for her telemedicine visits with her doctor and she would be completely preoccupied with spelling out on her spell-board to her caregivers (her way of communicating with her eyes when she could no longer speak) which costume she wanted to surprise Dr. Davis with once that camera when on. Peggy’s house was a mess, her email was overflowing, her mail was unopened; but she never forgot a birthday, she created SOMETHING beautiful everyday, and she always made you feel like you were the most important person in the world.
I’m not sure I fully appreciated Peggy’s way of living until she died. As I worked through the loss of Peggy and my identity as her caregiver and business manager, I had to redefine my own purpose. I did a lot of inner work to find my post-Peggy, Best Life Ever and eventually my purpose of helping others find theirs. And what I realize now is that Peggy had it right all along. Life is not about getting more done, life is about getting the things done that truly matter.
I will share with all of you the same wish that I shared with the guests at Saturday’s brunch…the same wish that I have for myself and my kids and every client and every loved one in my life:
My wish for all of you, wherever you are in your life, whatever your situation may be, is that you can take inspiration from Peggy’s “Purposeful Productivity” mindset. My wish for you is less busy work and more deep soulful purposeful work that impacts the world and leaves a legacy. My wish for you is fewer shallow interactions, and more deep meaningful connections that fill your heart and the hearts of others.
I know, if you live this way, like Peggy, you will have no regrets at the end of your life. I know, like Peggy, as you breathe your last breath here on earth, your eyes will smile with the satisfaction that you lived your Best Life Ever.
Thank you, Peggy. I love you forever.