“You don’t know what you got ‘til it’s gone”
(from “Big Yellow Taxi” by Joni Mitchell)
Joni Mitchell’s melancholy lyrics remind us of how easy it can be to take for granted those people around us who we get to know and who enrich our lives in so many ways. Even when we know that their remaining time with us is limited, we’re never really prepared, and the sense of loss is real when the end finally comes.
We’ve recently experienced two such losses at our school. Dr. Ron Wigle was a skilled clinician, committed teacher and mentor to a generation of students, many of whom continued to benefit from his gentle wisdom and humour up to the time of his passing. Moreover, he was a truly special person who had a remarkable ability to connect with people, breaking through all the barriers and pretensions that we often allow to get in the way of real understanding.
Karen Nicole Smith didn’t allow her chronic health issues to prevent her from making valuable contributions to our school and hospital. In fact, her determination to make a difference and find meaning in her own struggles made her contributions all the more valuable and remarkable. Kate Slagle, Manager of our Standardized Patient Program, worked closely with Karen Nicole, and provides the following tribute:
Living close to death empowered Karen Nicole Smith to embrace LIFE. She not only embraced life but chose to celebrate it and shared her powerful experiences with others as a Patient Experience Advisor. Sadly, Karen Nicole passed away on Sunday October 16, 2016 in her home on her own terms.
At the age of 18 Karen Nicole was diagnosed with chronic kidney disease. In 1996 she received a kidney transplant which ultimately failed in 2009. Since then she had been independently completing home hemodialysis. Her chronic kidney disease left her body susceptible and at the age of 39 she went into cardiac arrest and nearly died. After her cardiac arrest Karen Nicole made the conscious decision to take control through “active living”. She worked with teams of medical and non-medical professionals to stabilize and regain her health. In December of 2015 Karen Nicole was diagnosed with angiosarcoma, a rare form of heart cancer which was removed during an emergency open heart surgery. A few months ago Karen Nicole’s cancer returned. Karen Nicole knew her time was coming to an end and made the conscious decision to stop dialysis and pass away peacefully at home.
Take 2 minutes to meet Karen Nicole by watching her “Hello” video: http://youtu.be/hwuW2Oww9sE
Karen Nicole was widely known throughout the Kingston community for her a work as a Patient Experience Advisor at Kingston General Hospital and role of Trainer and Community Outreach Consultant for the Queen’s Standardized Patient & OSCE Program. Karen Nicole was an advocate for those living with chronic illness and shared her messages on a larger scale as a distinguished public speaker, writer and blogger. She knew that “sharing her opinion was helpful no matter how difficult the topic.” In 2016 Karen Nicole made contributions to Reader’s Digest, The Heart Failure Report, Health Quality Ontario and may more publications. She traveled across the country passionately speaking about the patient perspective in palliative care, organ and tissue donation, chronic illness, independent dialysis, cardiac rehabilitation and physical & mental barriers to exercise.
Karen Nicole knew her journey had purpose. Instead of focusing on illness she focused on LIFE and dedicated her work to improving the lives of others living with chronic illnesses. Her messages of active living, patient centered care and hope will continue to resonate with all those who had the privilege of knowing Karen Nicole. In honor of Karen Nicole we can each do our part to help her legacy live on by being an advocate for our health and choosing to live life to its fullest.
Recent Media Contributions:
Living Well with Heart Failure (Reader’s Digest 2016): Outlines Karen Nicole’s journey of active living following her cardiac arrest.
Quote: “One of the most important things I learned is that you can be a person with chronic illness and still be quite healthy and active.”
Living Life Honestly (Queen’s Gazette 2016): Karen Nicole’s perspective on the delivery of bad news and advice for those living with chronic illness to become their “own best advocate”.
Quote: “The conversation does not have to go perfectly. The communication just has to be real.”
The Journey to Heart Failure (Heart Failure Report 2016): Karen Nicole’s message of hope following her cardiac arrest.
Quote: “There is hope. There are places to go for support. You can rebuild your life.”
Palliative Care at the End of Life (Health Quality Ontario 2016): Karen Nicole’s honest thoughts regarding end of life care and death.
Quote: “I’d put my hospital bed right here, with sunlight coming in, and I’d get to pass with dignity and in comfort, with help in my own home. At times that has been my comfort, my solace.”
Kingston Woman Choosing Unassisted Death (Kingston Whig 2016): Karen Nicole’s decision to stop dialysis and her plan to pass away on her own terms.
Quote: “I’m just hoping that the right people will read this. And they will change their minds or think differently about someone they’re taking care of. I hope it will touch lives then can makes things better.”
To Find Out More Visit Karen Nicole’s Website: https://karennicolesmith.wordpress.com/
Two gifted, generous people who who were willing to share their energy and time with us. We’re all the better for it.
Anthony J. Sanfilippo, MD, FRCP(C)
Undergraduate Medical Education