the freedom to choose

Guest post by Mike Scott

June 9th has arrived. June 9th, 2016, a seemingly unimportant day, unless it’s your birthday — or you are living with a terminal illness in California. Although my wife and I are celebrating our birthdays together this month (hers was in April and she felt too poorly to celebrate so we’re holding a joint party for my June 20 birthday) it is the latter that makes this day so significant for us. Today is the day my wife gained a drop of freedom back in a life that has taken oceans of autonomy and hopes away from her.

The End of Life Option Act went into effect in California today and has given 12% of this country’s terminally ill patients the ability to make a choice in how their life will play out. A choice that Naomi would not have thought she would have to think about even 10 years ago. A choice that allows her the ability to control the end of her story if she chooses to do so.

This past year, Naomi has had plenty of choices to make that would help determine what her life would look like.

  • She could choose the beginning or middle of June to start her brain radiation. 
  • She could chose Temodar or PCV for her chemotherapy. 
  • She could chose to continue or stop a benzodiazepine that was causing her seizures despite having withdrawal symptoms.
  • And she could choose between unproven immunotherapy, chemotherapy after being decimated by 5 months of it already, or palliative care after being given a terminal diagnosis. 

These don’t seem to line up with the normal choices anyone living a normal life cycle should ever have to make, never mind a 33-year-old. Normal choices like which movie we should go to? Choices like where to meet friends out for dinner. Choices like should we ride our bikes or walk there? These choices were stripped away by a disease that could affect you, your neighbor, or a loved one. It has taken away choice in matters like driving, walking significant distances, working, footwear, traveling, laughing, crying, and independence.

So I am grateful for all of those people and organizations like Compassion & Choices that bound together to bring one very important choice to those with a terminal illness in our state. The choice is not how you want to die. The choice is how you want to live the rest of your life.

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