It is international womens day and many folks have been sharing stories about women who inspire. I wrote this two years ago for my mother for her memorial service…posted today for the first time.
Mom, it’s hard to believe five years has passed so quickly. I’m a little bit older, definitely a little bit grayer, and I hope to someday be a little bit wiser. I know how much you wanted to educate people about the tragic consequences of pulmonary fibrosis in your final days and after your death, so I wanted to take this opportunity to tell you about one night in Los Angeles.
One night in Los Angeles, people stopped what they were doing and paid attention to pulmonary fibrosis. One night in Los Angeles people learned about how the disease slowly robs your ability to breathe, slowly steals your quality of life, and slowly steals you away from those who love you. One night in Los Angeles, people learned these things.
You see, even after your death, it was hard for me to talk about pulmonary fibrosis. PF doesn’t have pink ribbons, fancy fundraisers or celebrity spokespeople. It is hardly understood by scientists, never mind by average folks. But because of you, things are changing.
Because of you, I went to my morning meeting inside an LA newsroom last year and pitched my first story on pulmonary fibrosis. Because of you, we spent several minutes as I answered questions from a bunch of news people about how you get it, why you get it, and how it can be treated- or not. Because of you, I influenced my medical reporter to take a closer look at pulmonary fibrosis and because of you, she and I both reached out to a man named Bob.
Bob O’Rourke spent much of his professional career working for Caltech until he himself got the same dire diagnosis of pulmonary fibrosis. He was slowly losing his ability to breathe. Much like you, he was now chained to big oxygen tanks- he called his “Bertha”. Much like you, he wanted people to know what the disease was doing to him, and why he was running out of time. He wanted to get the word out about pulmonary fibrosis- and that it will continue to be a killer until it gets the research dollars and research that the cause desperately needs. Because of you, Bob got that chance one night in Los Angeles.
It is said that the measure of a man, is the footprint he leaves behind. That’s not exactly true. In TV, the measure of a man is the Nielsen ratings. It is an actual measurement of your worth as a news broadcast, and therefore a measurement of success or lack there of. Because of you, I took a greater interest in spreading the word about PF. Because of you, my station took a greater interest. Because of you, we reached out to Bob. And because of you, one night in Los Angeles, everyone paid attention. That night, according to Nielsen, more than 120-thousand homes watched Bob’s story and learned about Pulmonary Fibrosis. And it was all because of you.
Bob and I still correspond. Earlier this year, Bob received a double lung transplant and for the first time in months he has been able to unchain himself from Bertha. We’ve done followup stories with Bob, and increased the awareness exponentially to thousands more viewers. And he and I have a standing date to get together for coffee- much like you and I would have done. This new friendship is also because of you.
In closing, I just want to thank everyone for coming out today, I want to thank Rachel (my sister) for her tireless efforts on behalf of Team Toby and the battle against pulmonary fibrosis. And I want to thank you mom, for succeeding in raising awareness of PF.
Final note: Bob O’Rourke eventually also lost his battle with PF.
The effort to find a cure to this devastating disease continues.