Michael Saum, 39-year-old Baldwin Park resident, is one of the last living, terminally ill advocates for Compassion & Choices who urged California lawmakers to pass the state’s 2015 End of Life Option Act. As both an advocate for end-of-life options and LGBTQ issues, Michael publicly identifies as transgender to build awareness of the LGBTQ community and health care needs at the end of life.
Michael was diagnosed with a brain tumor in 2001, had surgery performed to attempt to remove the tumor but the surgeon determined it to be inoperable. Six years later, in 2007, his tumor had progressed and he endured 18 months of chemo with severe side effects, including losing 90 pounds in three months. “If I didn’t quit the chemo, the doctors told me it was going to kill me,” Michael shared.
Michael has spent half of his life suffering from a brain tumor. As a result, he has lost most of his vision and his organs have been shutting down for years.
In 2015, after finding out about Compassion & Choices’ medical aid-in-dying campaign, Michael became involved with the movement. He fought for this compassionate option by attending rallies and meeting with legislators to share his story. Before what Michael calls his “death sentence,” he shared, “I don’t want to die. I love life despite the pain, but the thing is I don’t have a choice in the matter.”
Since early 2019, he has suffered daily excruciating headaches and sometimes has spent much of his days vomiting. His tumor has also affected his speech, “It’s hard for me to get out the words but I know exactly what I want to say.” On August 21, 2019 Michael’s doctor determined that he had six months or less to live. Michael immediately enrolled in hospice to help manage his symptoms and pain. He shared that one of the challenges he has faced is people, including medical professionals, not comprehending the amount of pain he is in, “I think people don’t understand that even though I look healthy, I’m suffering. I explain that it’s not what I look like, it’s how I feel.”
Michael’s hope is that his story will raise more awareness about medical aid in dying as a peaceful option. He also hopes to be a voice for a community often marginalized in quality health care and end-of-life care planning.