When I was at my lowest point mentally and emotionally, fearing an early death, I worried the most about leaving my daughter just as she was about to enter puberty. The very idea of her having to go through adolescence without her mother’s guidance, sent me into paralyzing depression which was made worse by my being so afraid of being depressed. I had never been depressed before. Powerlessness and hopelessness were new to me and I didn’t handle it well. Dying wasn’t what I was afraid of. Dying too soon is what scared me.
When you’re confronted with your own inevitable death, you ponder things like regret, life after “me”, and leaving a legacy for your children. It’s one thing to think about these things when death is hypothetical, but it is quite another when death is a very real possibility.
I felt confident about how I had raised my son and that I had done right by him, but I wondered about what kind of legacy I would leave my daughter. How much memory would she have of me before I got cancer, when I was the energetic room parent, the PTA president, and “art mom”? If I did die, would her only memories of me be of me lying in bed or shuffling around the house in my pajamas?
That fear helped me make the decision to go ahead and let myself be thrown out there for the world to hate or love as the the poster child for Obamacare, because I wanted Sophie to see me take charge of a really bad situation. I didn’t want her remembering me as weak and ineffective. If I wasn’t going to make it, at least she would have the memories of me fighting like hell for affordable health care for everybody, my president, my family, and my own personal dignity. I wanted to show her what she should do when life unexpectedly punches you in the face. You punch back, but you do it with smarts, charity and heart. I wanted her to know that it’s good to get angry sometimes, you just need to be smart about how you express it.
When the Obama campaign wanted to shoot the video of me telling my story I was very reluctant to let my family be shown. I grudgingly agreed to let Sophie be shown in a fuzzy profile. She really had a good time with the shoot and was very proud of the outcome. We would talk about how she was helping people by getting the word out about how the Affordable Care Act saved our family……a little activist in the making!
When the Health Happens commercial crew came to our house to film me for the California Covered TV commercial, I had lightened up on protecting Sophie from the public and saw it as an opportunity for her to really be part of something that had become really big by that time. The commercial was shown on all sorts of channels at various times of the day, for quite a long time (including Nickelodeon). The kids at school thought it was pretty cool.
As my story started to unfold in such a public fashion, and I became more outspoken about my own political views in light of health care reform, I started to see all of this as a real benefit to me as a mom for I was able to find value in turmoil. Showing her how to make the best out of a bad situation could be my legacy.
I don’t know where this journey will eventually end. I could end up running for public office just so I can help get single payer health care passed once and for all in California, or maybe I’ll turn the whole outrageous story into a performance art piece or something. Maybe I will tire of this and go on to do something else with my life. One thing is for certain: my daughter won’t be remembering me as a depressed invalid.
When asked to volunteer for Relay for Life of Reseda, the 24 hour fundraiser for the American Cancer Society, I saw this as a great opportunity for my daughter and I to take a personal tragedy and turn it into something really positive where we could be of service to others who have or will have cancer. By volunteering with me, both on the publicity committee and as co-team captain for our team, Sophie got a chance to earn her Bronze Award for Girl Scouts. She has spoken twice in public on behalf of her cause, sold lemonade and luminarias at our church, and doesn’t know it yet, but she will be presented with a special certificate by our city council member, Dennis Zine, for her outstanding efforts on behalf of the American Cancer Society (she is in third place for fundraising out of 281 participants!), plus she read an essay that she wrote for a Relay youtube video (click here). After our last committee meeting, she got in the car and said, “You know mom, I think I would like to speak at one of the ceremonies for Relay. I’d like the opportunity to get to speak to a much larger audience”. Wow.
So Sophie will be speaking at the luminaria ceremony at 9 p.m. on June 8 at Cleveland High School! She will tell the story of what it’s like to be nine years old when your mom gets cancer.
That’s my girl!!!! She’s not afraid to speak up. She’s ready and willing to jump in and lead. She’s articulate, generous, and reliable. This is what I want to leave my daughter – I want her to leave the world better than how she found it.
I couldn’t be more proud.
To donate to Sophie’s fundraising page for Relay for Life, click here.