What's the first thing someone says after I tell them I have Parkinson's Disease?
"I'm sorry."
Ack!
I don't blame them, I'd say it too. Most people don't understand what PD is or how it affects us, and how actually normal our lives can be on good days. But those words - I'm sorry -- are like a curtain coming down between us. The lucky civilian without the neuro-degenerative disease on one side, and me on the other.
It used to really drive me nuts.
I've never wanted people to feel sorry for me. That's why I kept my PD a secret for over three years. I didn't want my colleagues at the ad agency to see me as someone who needed sympathy or any kind of kid gloves whatsoever.
I was strong. Capable. And didn't want to be treated any differently.
Since then, I've become increasingly vocal as a support group leader and an advocate for people with PD. And I've started to understand that "I'm sorry" is rarely all anyone wants to say. It's more more like the beginning of a conversation, if I'm willing to be brave and vulnerable enough to continue it. If they're good friends, and sincere, it's worth a little cringe to enlighten about PD and help bust through some of the stigma.
Truth is, some days are hard, but others are pretty Okay. Yes, I've lost a lot of fine motor skills (whatever you do, don't get behind me at the bodega when I'm fumbling with paper money to buy flowers). But I can run farther than I could before I was diagnosed. And I have so. many. good. friends.
Actually, I think what people really mean when they say "I'm sorry" is the Spanish version of the phrase:
"Lo siento," which translates literally to "I feel it."
One of PD's silver linings is, i'm not too busy to take time to slow down and really listen to people--with my eyes as well as my ears, seeing the genuine concern and not reading it as pity.
So whether it's a new Physical Therapist or an old friend I haven't seen in a while, I vow not to hear the words "I'm sorry" as "I feel sorry for you," but rather, "I'm sorry this happened to you. I feel it."
Comments