Here’s something that happened to me this week.
I work in a public charter school in the Bronx, and I was in a 5th Grade science class while the children were doing Internet research projects on cells. The teacher had created a master website list of all sorts of child-friendly sites that the children could access for their research. Each student was supposed to come up with a few questions pertaining to cells, questions that he/she was seriously interested in, then try to find answers by perusing the 50-odd sites that the teacher had compiled.
I sat down next to a quiet, studious boy I’ll call “Alex.” He was at a laptop, clicking away and reading. He had hand written on a notebook page a few questions that he wanted to research, and he was scanning the various websites on the teacher’s master list for some answers.
“What’s the question you’re most interested in?” I asked.
“What are white blood cells made of?” he replied. “But I can’t find any information on the websites here.”
He had some backup questions, so we started looking at other sites to find information to answer those. There was a webpage devoted to dandruff (http://kidshealth.org/en/parents/dandruff.html), so he clicked it open. We glanced through it and read the following paragraph:
Dandruff often runs in families. Men are a little more likely than women to get it. Other things can also make dandruff more likely, like having oily skin, stress, a neurological condition such as Parkinson’s disease, or a condition like HIV (human immunodeficiency virus) that harms the body’s immune system.
As soon as I saw Parkinson’s disease mentioned, I said to Alex, “Well, as you know, I have Parkinson’s disease, but this is the first time I heard that it puts me at a higher risk for dandruff!”
But Alex didn’t know I had PD, and he asked, “What’s Parkinson’s disease?”
I responded, “It’s a disease that attacks your brain, causing part of it to stop working.”
Alex looked at me and said in all innocence and surprise, “But you’re so smart.”
At which point I wanted to hug him.
Instead, I explained to him that PD mostly affects how your brain communicates with your muscles, although there are other side effects, such as insomnia, loss of smell, and now…dandruff! I had to leave the class at that point, but the next day I sought Alex out again to find out if he had finally been able to find info on white blood cells (no, not yet), and if he had any questions on what I told him about Parkinson’s disease (no, not really, although he asked to see my hands in case I was having tremors. I wasn’t, however).
Which led me to two realizations:
1. There’s always yet another symptom of Parkinson’s disease that even old hands like me still don’t know about. (In this case, dandruff.)
2. If you’re out of the closet about having Parkinson’s (and I think in most cases you should be), you’re still going to need to come out again and again. It’s not like you announce it to the world once and then you’re done.
When I came out at my school in 2013, I did it in a big way. I sent a mass email to the entire staff (click here to read about that), then I went on the school’s daily morning TV show, a 15-minute program broadcast from the principal’s office, which the entire school watches live on the SmartBoards in every classroom. On the show I announced that I had PD. I explained what it’s about, and a panel of students asked me questions about the disease and how it affected my life.
I even had all the kids on the show with me tap their index finger and their thumb together, showing that I could do the same with my left hand, but not my right.
After that, I thought, “Fine. Now the whole school knows and it’s not a secret. End of story.”
But I didn’t realize that new kids enter our school each year, and that kids who were in kindergarten in 2013 may not remember that particular TV broadcast once they’re in 5th Grade.
Lessons learned.
Now I need to go back to the 5th Grade science teacher to ask him to include a kid-friendly website that explains the composition of white blood cells. I’ve always used a dandruff shampoo, so no change needed there!
