One of the dear people in my life has Parkinson’s disease. She is an amazing woman. I met her as an undergraduate psychology major at the University of Washington. She was a grad student looking for research assistants. Her research sounded fascinating and I ended up working in her lab for 2-3 years. She was a wonderful mentor and took a faculty position in the Midwest upon graduation. I haven’t seen her in person since then but we stay in touch through Facebook and email. (She is legally deaf so the phone is not a good option.)

Her disease had an early onset. She noticed tremor in her hands while she was in the hospital just after delivering her daughter, who is now 12 years old. She was doing really well for the first few years. She went skydiving and traveled with her family. Eventually, though, she had to retire early from the faculty job she loved. She still drives and is ambulatory but I suspect this is true on an intermittent rather than daily basis. She has undergone two heart surgeries. She “flat lined” after the most recent one while in the hospital and it took the medical team some time to revive her. She remembers this time keenly and her unwavering focus on staying alive for her children. Her physicians have suggested brain surgery. She has not warmed to that option. She takes medications that cause all kinds of side effects. She knows that her health will continue to deteriorate as will her ability to take care of herself and stay connected with others. In other words, Parkinson’s is not a light-weight disease. It is chronic, it is progressive, and it ends lives.

Yesterday, I was following one of her Facebook discussions. (She is the most active Facebooker I know in terms of getting conversations and debates going.) At one point she was discussing Parkinson’s with a friend who also has it. They were talking about the hardships and then she ended one of her comments with, “At least it’s not cancer.” Although it surprised me a bit, I was not hurt in the least that she wrote this. But it is a great example of a sentiment I still hear a great deal from people, which is that cancer is the worst disease ever. It’s not a coincidence that a Pulitzer Prize winning history of cancer is cancer is called, The Emperor of all Maladies.

So the good news is that not everyone has been “pink washed” into thinking that there are kinds of cancer that are “the good cancer” or that cancer is cute or easy. The bad news is that the fear that people have of our “Emperor of all Maladies” will keep many of us, especially those with metastatic breast cancer, that much more isolated. Scorchy Barrington wrote about this isolation beautifully earlier in the week. Another blog buddy, Diane of Dglassme, wrote a beautiful comment on Scorchy’s post. I would copy it here but she might want to write a post about it in her own blog because it is that good.