This week, Heidi McCann shares her story and her experience caring for her partner Curtis after he was diagnosed with ALS at 25. Heidi shares how she and Curtis met as teenagers in Vermont and maintained their relationship through college, before Curtis began exhibiting symptoms of ALS. When he received his diagnosis, Heidi left her job to care for Curtis full-time. She moved with him to his small hometown to be closer to his support system and cared for him over the next year as his condition deteriorated. Heidi and Curtis married 22 days before his passing to declare their commitment to one another.
After Curtis’ death, Heidi found new love and purpose, going on to write a book about her Caregiving journey of living with and preparing for the death of her partner from ALS. She married again and became a mother of four children. Heidi also now cares for her own mother, who has Parkinson’s disease. Throughout the episode, Heidi emphasized the importance of self-care for caregivers and making future plans for support systems. She shares lessons learned from her extensive personal experience of caring for a terminally ill partner through the challenges of ALS.
About Heidi:
Born and raised in Hartford, CT, Heidi Erdmann Vance McCann graduated from the Loomis Chaffee School where she learned about the power and importance of the written word. Heidi has keenly observed the human condition since she was a child. Her high school experiences helped her find her voice as well as her ability and desire to lead. She graduated from Middlebury College where she honed her writing skills as well as her athletic competitiveness on the tennis and squash courts. Heidi worked in the field of development and coached tennis for over a year. When her longtime boyfriend was diagnosed with ALS, Lou Gehrig’s disease, Heidi left her jobs to care for him. They spent a year learning to live while preparing to die and raised a Chinese Shar-pei, Wofosi. They married 22 days before his death. Curtis was 26; Heidi was 24. Together, they created a nonprofit foundation in his name.
Over time, Heidi remarried, earned a MALS degree with a concentration in creative writing from Dartmouth College and reentered the development field at Loomis Chaffee where she currently works. Heidi loves to teach and has tutored for over two decades. She lives in Simsbury, CT, with her husband, Paul, and their four children: Martha, Ava, Caroline and James and their dogs, Bruin and Bauer. Heidi loves to watch her children play sports and relishes in the time they spend as a family. Heidi sets aside at least one hour a day to physically move her body during which she often reconnects with Curtis’ spirit. This is when ideas, words and sentences to future books enter her mind.
Known since childhood as “The Elliott Girls” or simply, “The Girls”, it makes sense that we work together to support our mother, and each other. Our trio begins with Jenefer Jane “JJ” who was and always will be “in charge”. She’s the peacekeeper. The responsible one, ensuring Natalie and Emilie remain alive. Next is Natalie, the middle child, who was and always will be Miss Congeniality. She’s the athlete. The rebel responsible for three babysitters exiting the summer of ’84. Then there is Emilie, the youngest, who was and always will be “the baby”. At 6’1”, she is the sensitive and quiet soul. The one responsible for the guinea pig that begged for lettuce and the stray dog we adopted from the bus stop.
After high school we went separate ways, from New Mexico to North Carolina. JJ would go on to get her Master’s in Business Administration and work in the finance world before partnering with her now husband, Dexter, to run a variety of businesses. Natalie would go on to get her Master’s in Social Work degree, and work in the mental health field, advocating for children and families to receive the most appropriate services. Natalie would marry and divorce early on but later marry Jason. Emilie would exit college early to marry and gift us with Owen and twins, Maxx and Natalie Jane aka “The Kids”. Emilie would later divorce and work with county government, focusing much time on caring for the kids.
The source of the sisterhood falls to Jim aka “Big Jim” and Connie, small town high school sweethearts married for almost 40 years.
In 2005, at the age of 52, mom would be diagnosed with Parkinson’s Disease. She hid the disease for years behind dad’s 6’2” frame. The tremors and sudden inability to move were both calmed and steadied by his arm and simple presence. He was her rock. Our rock. Close family and friends knew of her chronic illness, but to the rest of the world, everything was “fine”. Life would turn upside down when our dad unexpectedly passed in 2011 of a massive heart attack at the age of 58. The assumption was Dad would always be mom’s caregiver but that wasn’t God’s plan.
Mom would spend the years following our father’s death desperately seeking a cure for Parkinson’s while trying to manage her symptoms. As the years went by, the cruel symptoms associated with the disease increased, negatively impacting her body while her mind remained clear and in tune. We lived our lives checking in to make sure she was “okay” but knowing the day would come when we had to do more. And then it did. The summer of 2019 changed everything. That’s where the real caregiver story begins for us. Little did we know she would be only the beginning of our caregiving journey.
In March 2022, Natalie’s husband, Jason, was diagnosed with head and neck cancer. From the first time Jason detected something off about the swollen lymph nodes in his neck, to the formal diagnosis, and the decision to move to New York City to participate in a clinical trial at Memorial Sloan Kettering Cancer Center, the journey would push them to their limits. The silver lining of his diagnosis was the cancer brought them closer to God, restoring their faith in Him while also experiencing a myriad of blessings through the kindness of family, friends, and strangers. Their story is a testimony that will inspire and offer hope.
