Photo by Andre Baranowski
I first realized I was grieving last fall while I was accompanying a dear friend with a terminal illness to physical therapy. I had watched him struggle to get around his house as he went from using a cane to a walker and finally a wheelchair, and I tried to encourage him to do his exercises.
Throughout his illness, I was gripped by a profound sadness. At some point, a friend suggested I listen to All There Is, a podcast about grief launched by Anderson Cooper. From episode 5, I learned that my emotion had a name—anticipatory grief. One of Cooper's guests, filmmaker Kirsten Johnson, described it as “almost sort of unbearable. The fact that the person isn't himself and it's going to get worse. It's like you're in quicksand.” She was talking about her father, who had been diagnosed with dementia and was disappearing before her eyes. While she struggled with her grief, Johnson also found ways to celebrate his life and get closer to him, realizing it's never too late.
In our cover story, Cooper describes how the podcast gave him a deeper understanding of the grief he felt after his mother, Gloria Vanderbilt, died in 2019.
Listening to other guests discuss their losses in the 10 episodes of Cooper's series, I found their messages uplifting in many ways and their insights, like Johnson's, reassuring. I have since recommended the podcast to friends and patients, and I am now telling you, our readers. The podcast is especially comforting for those who care for people who have progressive neurologic diseases or who are mourning someone they've lost.
Two other articles in this issue also may provide solace. Our Caregiving story is about how caregivers manage anticipatory grief, and in Pictures of You, a palliative care specialist who had his own near-death experience gives advice for those going through loss.
My friend's illness brought some wonderful moments as well: I was introduced to a stranger who offered a bed hoist after her mother could no longer use it. She even insisted on delivering it the next day, a gesture so kind it moved me to tears. My friend received many acts of kindness during his illness. People brought food, did household chores, ran errands, and visited from far away. They filled our hearts and provided a respite from the grief.
In our feature on volunteering, four people with neurologic disorders reflect on the benefits of helping others, including gaining a sense of purpose and an identity beyond their illness. Whether you volunteer for an organization or just do something nice for somebody, your efforts are appreciated, and as you'll read, the returns can be remarkable.
This issue also includes a wonderful story on lending closets, a more reliable way to find medical equipment than the word-of-mouth good fortune I stumbled into. A feature on pain explains why some people develop chronic pain while others do not and offers some tips on how to manage it.
In a story about exercise, we talk to John Roche, a former semipro soccer player from Liverpool, England, who has Parkinson's disease and started a coed walking football (soccer) team for people with the condition. He describes the benefits—improved coordination, fluid movement, camaraderie, and happy memories—he derives from the sport.
At the end of Cooper's podcast, he plays messages from listeners who have experienced loss, which are poignant and heartwarming. If you have a story about surviving grief and what helped you through the process, please write to us about it at BrainandLife@wolterskluwer.com.
Orly Avitzur, MD, MBA, FAAN, Editor in Chief