BY , EJD, CT, BCPA
As a long-time hospice volunteer, I have worked with many patients and their families. Every once in a while, one comes along that touches the heart and leaves an impression that is life-changing. Chelsea was that patient for me.
I had heard about Chelsea Lane from the time she came on to the hospice service at around age twelve. Her terminal disease, Friedreich’s ataxia, slowly robbed her of the use of her limbs, and to varying degrees, her hearing, speech, and sight. She was spunky, witty, and such an engaging young lady that she became the poster girl for the pediatric hospice. Her radiant smile could light up any room, and she often helped raise money at the hospice fundraisers. Going on and off the hospice service through the years, I got to know her and her family well. She eventually stayed on hospice until dying before her nineteenth birthday.
Her close-knit family included mom Sandy, dad Steve, big sister Bri, and Chelsea’s little dog, Lexi. Along with doting grandparents and a multitude of friends, they were a warm and loving family who often professed their deep faith in their Catholic religion. They lived in a quiet neighborhood in Southern California.
A Rare Disease: “Friedreich’s ataxia (FA) is an autosomal recessive genetic disease that causes difficulty walking, a loss of sensation in the arms and legs, and impaired speech that worsens over time. Symptoms generally start between 5 and 20 years of age. Many will require a mobility aid such as a cane, walker, or wheelchair in their teens. As the disease progresses, people lose their sight and hearing. No effective treatment exists, but there are several therapies in trials. FA affects 1 in 50,000 people in the USA.”1 Chelsea was diagnosed with FA at age five, and she participated in clinical trials and studies to help find a cure.
What Brought Us Together: When I became her hospice volunteer, she had just turned eighteen. She was in a wheelchair and legally blind. She had a full-time caregiver along with her mother tending to her needs as she could not perform any ADL activities. “This disease robbed Chelsea of her independence, her dignity, and her pride. Remarkably, despite the grim scenario, Chelsea was cheerful, happy, and loving.”2 As her disease progressed, her symptoms and pain increased, and she required more pain meds, although she rarely complained.
I initially worried about how I would bond with a teenager, but she invited me into her world and suggested we watch a Twilight movie. This became our common ground, and I read all four Twilight books; we would talk about the movie characters, many of whom she had met. I brought her Teen magazines and read her all the latest gossip. She was fun to be with, and I looked for ways to amuse her. She loved shopping at the mall, getting manicures, and gossiping about her favorite stars. Belgian dark chocolate and her dog, Lexi, could always make her feel better, even on her worst days. I quickly learned that Chelsea was much more than the disease that was killing her. She fought bravely against her limitations and offered hope to others who were disabled. She posted “Chelsea’s Blogs” on the Children’s Hospice and Palliative Care website. The blogs captured her warmth and showed her devotion to helping and inspiring others, but only hinted at the depth of her character and remarkable spirit. From the perils of finding a boyfriend to “handicapped” surfing, and her absolute joy at attending Twilight premieres, Chelsea showed the disabled the many ways they could live their lives, on their terms. She faced her numerous challenges with grace, dignity, and courage, never complaining about her restrictions, but optimistic about her life and future.
The Turning Point: In December 2012, Chelsea went into the hospital with aspiration pneumonia. She weathered that crisis and managed to get back home for Christmas, her favorite holiday. However, in early January, she had a seizure and went back into the hospital; this time there was no coming back. She had minimal brain activity and was on a ventilator. Her parents decided to remove her from life support and let her go. There were more than a hundred friends gathered in the waiting room, but her family asked me to stay with them when they extubated her. A handful of people watched as her oxygen levels dropped to zero. She died about an hour later.
The pain and grief in that room were so overwhelming. I stepped out to give them privacy. Nothing can prepare a family for the death of a child, even given the terminal diagnosis. Her sister Bri, who had just arrived in India for a nursing program, watched the events unfold on FaceTime, bereft not only because she lost her beloved sister, but at her inability to comfort her family from such a great distance. “Our presence is the most important thing. There are no answers to the parent’s questions about why. Sometimes the only thing we can do is hug, hold, and offer comfort.” Hospice nurse, 2012.2
Unresolved Issues for Patient and Family: The passing of Chelsea Lane left a huge hole in the hearts of her family and friends. They’ll miss her mischievous wit and great sense of humor. Chelsea had a gift for climbing into your heart and making YOU a better person. It was an honor to know her and be a small part of her life and that of her family, and I will always consider it a gift to have witnessed her passing. For the next thirteen months, I became the family’s bereavement volunteer. It was unusual for the regular volunteer to assume the hospice bereavement role, but it seemed right. I was with Chelsea’s family on the worst day of their lives and watched as they slowly climbed out the pit of despair, creating a new world order without their darling Chelsea.
“My hope is that one day, people will accept death as part of life and we can all talk freely about it and plan accordingly. May her light continue.” Sandy Lane, 2020.2
For more information on Chelsea Lane and Friedreich’s ataxia (FA): https://curefa.org/memorial/chelsea
, EJD, CT, BCPA, is the founder of Ending Well! Patient Advocacy, LLC and is a Board-Certified Patient Advocate practicing in Arizona. Her advocacy focuses on end-of-life care and planning, aiming to help people have a “good death.” She earned an Executive Juris Doctor in health law in 2012, has been a Certified Thanatologist since 2015, a bedside hospice volunteer for 15 years, and a private practice mediator for more than 17 years. She can be reached at [email protected].
