For 25 years, Debbie Pausig was a patrol officer and later a detective with the North Haven Police Department. The challenging work she did there might be considered a breeze, compared to her 17 year experience, caring for her husband Perry, who had Huntington’s Disease. HD is a lesser known fatal, inherited, genetic disorder causing the breakdown of nerve cells in the brain. It results in the progressive loss of mental and physical control and has no known cure.
“HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease,” according to Huntington’s Disease Society of America (HDSA).
Debbie is someone who believes in commitment and when Perry first started showing signs of the disease at the age of 33, she didn’t know it would be the beginning of a 17 year “affair,” that culminated when he died at the age of 50 in 2008. She shares a heart wrenching and enlightening account of their journey in a book titled, An Affair Worth Remembering – with Huntington’s Disease – Incurable Love & Intimacy During an Incurable Illness. She wrote it to both honor her beloved husband and to increase awareness of the little known disease. She continues today as an advocate and speaker to raise awareness of a disease that had become so much a part of her life and his death.
Perry and Debbie met in college, married, and adopted two children from Lithuania, Daniel and Katherine. Their 29 years of marriage sparkled with a love that was only intensified by HD. Perry’s mother died at the age of 53 from the progressive disease that has associated behaviors often mistaken as drunkenness. Symptoms include personality changes, mood swings, impaired judgment, slurred speech, an unsteady gait and involuntary movements. This is such a problem that police are often involved, unaware of the disease, and the HDSA has put together Law Enforcement Tool Kits for training police agencies, as well as one for HD caregivers.
Inspired by a Career Day visit from an FBI agent when she was 15 years old, Debbie became a police officer at the age of 21, until several shoulder injuries and subsequent surgeries, combined with caring for Perry, put her out of commission. She retired from the force in 2005. She was 46 years old and Perry’s condition was deteriorating rapidly.
“My unconditional love for him continued to grow stronger throughout all the stages of HD,” writes Debbie in her book. “When an intimate sexual relationship was no longer possible, the relationship deepened. I looked into his eyes as I spoon fed him, making sure he did not choke. I held his hand and sat next to him feeling the energy of his presence….It was an ‘I will take care of you till the end of time trust.’ This was truly an ‘incurable love and intimacy during an incurable illness.’” He died in her arms.
“I lost him seven years before he actually died,” said Debbie, referring to the disease that had taken over their family’s life 24/7. “My 40’s was a blur. It’s a progressive disease. I miss his playfulness, his smile. He was an amazing dad. I miss my partner, someone to enjoy life with. I miss the opportunity to grow old with him.”
Debbie’s new life began at 50 when she re-invented herself. Remarkably, a scant two months after Perry passed, she was asked to facilitate a bereavement support program at St. Francis Cabrini Church in North Haven. She felt called to respond with a resounding “yes.”
“I had been grieving for so long during the course of HD, that his death was well expected. I knew there was something that I could do for others. I knew the suffering that I had gone through and I knew that others didn’t need to suffer the way I did. To guide others along their journey was an important part of my healing as well. The timing of it was perfect for me.”
She became a New Day facilitator and Minister of Consolation for the Catholic Archdiocese of Hartford and decided to pursue an educational background to support the grief work she felt called to embrace. With and an undergraduate degree in law enforcement and a masters degree in public administration under her belt, she pursued a Master of Family Therapy degree from Southern Connecticut State University and became a Certified Clinical Trauma Professional and Certified in Thanatology: Death, Dying and Bereavement.
“I wanted to formalize the work I was doing with background training,” said Debbie. “This was significant. It was shaping my future. I love, love, love to learn. Anything I can apply to my life, or use to help others on their journey, is a priceless tool.”
In 2012 she opened her own private practice and loves the diversity of the work she is doing now. She enjoys counseling as well as presenting workshops and speaking on topics she is passionate about. Debbie presented caregiving programs earlier this year at Mercy Center in Madison and continues advocacy work for Huntington’s disease. She facilitates HD support groups for the HDSA, and is a workshop presenter for the Connecticut affiliate of the HDSA. Last June she was invited to be a workshop presenter at the 30th National HD convention in Dallas. (See a video of Debbie’s workshop at debbiepausigmft.com/2015-hdsa-natl-convention-dallas-tx.php) “That was so exciting. I’m thrilled to be in a position to give others hope. And everything I do that is related to HD, is in Perry’s honor.”
“I wrote my book because there was very little awareness about Huntington’s Disease. I wrote it as a spouse survivor. I wanted other families, doctors, researchers, therapists, to know these people need help. This is a unique situation. It affected my whole family system. I needed someone to understand more.” The book, now available as an e-book, helps to give HD families a voice.
About surviving and re-inventing herself, she suggests that people find their purpose in life like she did. “Find your purpose, find your bliss. I think that’s what has guided me. My purpose is to help others. We do get better. We do heal. We never forget, but we do heal.”
Debbie Pausig’s book, An Affair Worth Remembering With Huntington’s Disease: Incurable Love & Intimacy During an Incurable Illness is available on Amazon.com.