When I was growing up in Boone, Iowa, death and dying were a matter of fact in my family. My mother was a hospice nurse, and when we gathered around the dinner table, conversations about death were common.
But I wouldn’t face death on a deep, personal level until much later. In 1989, I graduated from college and met John. By the time we got married two years later, John had been diagnosed with HIV. Nearly everyone with the virus died badly back then, and my husband’s immediate response was, “I don’t want to die that way.”
It was then that I truly understood how important it is for a dying person to be able to decide how they die. As his health declined, John wanted to be in control of his own medical care, including how he died. He’d been in charge of his life; all he wanted was to be in charge of it until the very end.
Time and again, I’ve seen people join the Death with Dignity movement because of a personal experience like mine. Will you share your story with me? What inspired you to get involved with our cause? What does Death with Dignity mean to you?
When John (pictured with our daughter Hannah) died in 1993, I went on to become a social worker. The profession’s values — personal autonomy and self-determination as foundations of human dignity — reflect my own. It was at around that time that the issue entered the popular debate and Oregon passed the nation’s first Death with Dignity law. Death with Dignity had not been an option for John, so I’ve dedicated my life to creating an environment for dying individuals to be empowered to control how they die.
After managing the AIDS Project of Central Iowa and finishing my doctoral coursework at Portland State University, I accepted the position of Executive Director at the Death with Dignity National Center. To call this an exciting opportunity is an understatement: barely six months into the job I was standing on the steps of the US Supreme Court as we defended the Oregon Death with Dignity Act. Since then, we spearheaded the successful ballot initiative in Washington and helped pass the Vermont law.
This is my story, the reason I began my lifelong journey of advocating for Death with Dignity. And, it is stories like yours that inspire me to continue doing this important work. It would be an honor if you shared your story with me today.
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