Friday was the fourth anniversary of Richard's death. In honor of the journey we took with his brain cancer, one in which we were determined to live well through whatever came, here are eleven of the most important lessons we learned. Some are specific, some are applicable to any stage in our lives:
- Don't waste time. Be present. Make the most of your days, no matter how difficult they are–live what you've got.
- Expect respect. Seek out health-care practitioners who will work with you as partners. If their manner says “my way or the highway,” say thank you and keep looking. You need the best information possible, but your treatment has to work for you as an individual. You are the expert on your body and your life.
- Be fearless about asking questions. No question is stupid.
- Take notes–on what doctors say, on what medications you're taking, on how you feel at different times, on what you want. That data can help you decide which way to go.
- Expect health-care professionals to include your family and other caregivers. At the Veteran's Administration, Richard's practitioners often said, “We treat the whole family.” No one's problems happen in isolation.
- Cultivate joy. Whenever. Wherever. (That's Richard juggling in the photo above. Juggling was part of his daily practice, even after brain surgery number two, which removed most of his right temporal lobe along with a splattering of tumors. He's concentrating hard to keep the balls in the air, but you can see the smile and the joy, too.)
- Request a team: Your docs and other health care professionals should talk to each other about your treatment, so you don’t end up having to be the middle-person who interprets and communicates for them. You have enough to do.
- Follow your dreams. If not now, when?
- Caregivers need care too. Make sure your spouse/family member/caregiver has a supportive community to rely on so they don't feel like Atlas, holding up Earth all by him/themselves.
- Go outside and spend time in nature. Every day. "Vitamin N" is our most effective and longest-lasting healer.
- Love every moment. No exceptions. Embrace your moments regardless. Because they're what you've got.
This list was inspired by a phone call from a friend on Friday asking for suggestions for something she is dealing with. I was happy to give them even though her timing was… poignant. It jerked me out of a major sulk, and I felt useful.
That evening, a friend and I took four luminarias to the Salida Steamplant Sculpture Garden, lit the candles, and placed the bags with their flickering lights around "Matriculation," Richard's sculpture, as a way to honor his life and work. (That's Matriculation with our luminarias in the photo above.)
This morning, I woke up with a deeper understanding of my hopes and dreams–my mission–for Bless the Birds, whenever it is published. (There's no news on that end, by the way. It's out for submission with various editors, but none have snapped it up–yet.)
My aim for Bless the Birds is to jump-start a national conversation about the end of life. For too long, we have denied or ignored the fact that we all die. We have wasted billions of dollars on unnecessary medical care and other procedures, caused needless suffering, and denied ourselves the wisdom and healing that comes with integrating death into ordinary life. As a country and as people, Americans cannot afford ignore death: Baby Boomers, those born during the decade-plus birth bump after the Second World War, make up nearly 40 percent of the US population. Some 128 million Americans are headed into the end of our lives, and if we're not facing that yet, we're dealing with the end of our parents' lives. (I'm at the tail end of the Boomer generation, so I'm counting myself.)
We Boomers revolutionized how Americans live, love, marry, and work. Now it's our chance to change how we die, to return humanity and dignity to the end of life. Bless the Birds is my contribution to that revolution. It's time. Let's roll!