Jerika Bolen is 14 and, like me, has a fairly severe form of spinal muscular atrophy. She lives in Appleton, Wisconsin, not far from where I grew up. And later this summer, she will voluntarily have her ventilator removed because she wants to die. Jerika cites her intractable pain as her primary motivation for ending her life and the linked article describes the numerous surgeries that she’s endured in hopes that they would bring her some relief. Unfortunately, nothing seems to have worked.
If you’re expecting me to condemn or express outrage at Jerika’s decision, I’m going to disappoint you. I’ve long believed that teenagers have the right to make medical decisions for themselves, including the decision to withdraw treatment. She seems like a bright young woman who has spent a lot of time weighing her choice before concluding it was the necessary thing to do. But I’m saddened that pain is the prime factor behind her decision. This disability we share affects everyone differently and I know that many people struggle with chronic pain related to SMA. I’m fortunate to not be living in pain and I have a difficult time even imagining what that must be like. Medical science still seems to be groping in the dark when it comes to pain management.
Jerika is planning a prom to celebrate her life. I hope it’s a memorable party.