Extraordinary Patients

Wisdom of a Ferocious Patient Advocate: Celeste Benedict Castillo Lee (1965 – 2017)

Celeste Lee – a cherished wife, sister, daughter, and mother, faithful friend, and passionate patient advocate, passed away on February 9 at age 51.

Celeste was a longtime member of the Vasculitis Foundation and a founding member of the North Carolina Vasculitis Foundation Support Group.

At the age of 17 Celeste was diagnosed with Wegener’s which shut down her kidneys the summer before her senior year of high school. The kidney involvement transitioned her from a college-seeking young woman into a lifelong ESRD patient.

In 1983 Celeste attended college as a student on hemodialysis. In 1986 Celeste received an amazing gift of life, a transplant. However, in 1995 when the kidney failed, she was devastatingly transitioned back to dialysis.

While managing her Wegener’s, Celeste created an exceptional life with her mental fortitude and unparalleled passion for patient and family-centered care. She dedicated her professional and personal life to employing the principals of patient and family-centered care: dignity and respect; sharing information; being an active participant in one’s health.

Tokens of wisdom from Celeste Lee to carry with you as a patient, a caregiver, a community member, and advocate:

“ENGAGE IN YOUR HEALTH: BE THE DRIVER

You’re beginning your life-long journey with chronic illness, as I have with Wegener’s, and you have two choices: be a passive observer, allowing others to take the driver’s seat, or be the driver, taking control of your life when you can, experiencing the adventure, and setting your limits.

“MENTAL FORTITUDE: ONCE THE CANDLES HAVE BURNED DOWN, IT’S TIME TO MOVE ON.

The constant management of an illness like Wegener’s can wear you down. When it gets the better of me, I know that it’s time to seek support by talking with a life coach, a counselor, or a friend; also, I focus on finding meaning and purpose in life. Sometimes I light candles, fill the bathtub, climb in, and have a good cry. Once the candles have burned down, I know that it’s time to move on.

“ISOLATION: WHEN FEELINGS OF ISOLATION LINGER, DANCE.

Having a chronic illness like Wegener’s can make us feel isolated—utterly alone—even when we’re surrounded by family and friends. For most of us, this feeling of loneliness is transient, but if it lingers, there are ways to deal with it:

  • Volunteering
  • Dancing (even cleaning the house to your favorite music to get you moving and smiling)
  • Laughing. Loving (embrace the miracle of love wherever you find it: in a spouse, a child, or a pet; in friendships or strangers who need a hand or a compassionate glance)

“SUM OF THINGS: JOY

To sum it up — my life is about the joy I have derived in sharing time and connecting with you.”

Celeste was interviewed for our Extraordinary Video Series and discussed her journey with vasculitis and her work as a patient advocate.

Watch the video here: https://youtu.be/JVldYQ7uqmI