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.
My Eyes Are Up Here 
When my brother was dying of AIDS, that’s what I used to think in my head whenever people complained about their lives: At least you don’t have AIDS. Now that AIDS is somewhat considered “chronic,” I guess cancer is back as the Emperor. One of Scott’s colleagues has Parkinson’s, it’s no picnic (he has young children, too)…I don’t think I’d want any of those medical challenges. You’ve handled everything admirably and with incredible grace. (John can tell me later about those times you were a jerk) ;- D
I agree. All of these diseases stink. I try not to use macabre comparison strategies as a coping strategy though I must admit that I felt some relief that my cancer was in my breast rather than in my brain. Speaking of brains, mine didn’t even think of AIDS as the emperor when it certainly would have some years ago before medical advances that have greatly extended the lives of HIV positive people. It’s unbelievable how quickly some things change and how easily I forget at times how different things used to be.
Thanks for the praise. John will never tell you when I was a jerk because it never happened. Cancer has made me a saint. Heh.
A colleague of mine was having problems with her voice. She seemed to be losing it. In my limited experience I thought perhaps her vocal chords were scarred for some reason. Maybe she had throat surgery. But whenever I’d see her it was just getting worse. She used an amplifier to broadcast what little voice she had. Then she used a tablet that spoke on her behalf. And then I learned she had ALS. My heart sank. Anything that hits people so that they can never be whole now or ever is just awful.
I’m sorry about your colleague. ALS is awful. A good friend lost his mother to ALS several years ago. He said it was truly awful. The same friend lost his father to cancer a few months ago. His passing was sad but not so painful. Mike told me that his 83 year-old dad’s only symptom before death was constipation. It did not fit my picture of “dying from cancer” and I was relieved to hear it.
Elizabeth, you’re always more than welcome to embellish on my comments. I’m not a writer, I’ve just met a bunch as of late.
The comment I believe you are referencing: “Scorchy I’m sorry you can’t do your laundry. I’m pissed because I can’t mow my grass. I’m not alone because no one lives with me, I’m alone because cancer tends to bring on empty space, a sort of no man’s land. Whereby we’re forced to analyze a whole new world to the Nth degree in short order. It’s a creepy ugly place to be by yourself, no teddy bears in BC hell”.
Maybe one day I might attempt to elaborate in my blog on this comment but, I’m just not as articulate and thorough as the true bloggers in making these things come to life. Mine is more of a reality show or soap opera at this point.
Yes, that’s the comment and thank you for your generosity!
The offerings on this blog are very touching. The term “my thoughts and prayers are with you” may seem a bit overused but if it is sincere, it is usually appreciated. I am sincere.