Still Me, Plus Lupus

Why the title?

I’ve been debating for months whether or not I wanted to start my own blog. As an avid blog reader, I’ve gone back and forth on whether or not I wanted to put my heart on cyber paper and publish it. Finally, I decided to go for it. Part of my decision came from the knowledge that writing helps me process so much better, and the other part is from knowing how much reading others’ blogs have helped me. Hopefully, this will be a little of both.

Then, I had to come up with a name. I wanted to have a clever URL, but one that people will remember and that means something. The term “I’m still me” comes from the title of a song by Williams Riley. The song tells of an aged man, knocking on the doors of death in his weathered body, yet, in his head, he’s still young. He’s still who he was in the good ole days. The first time I heard that song, I echoed the sentiment. “I’m still me. Beyond the lupus, beyond the pills, underneath it all, I’m still me.” I think mostly I needed to remind myself.

Shortly after my diagnosis, my sister named my lupus “Louie.” We generally refer to him has a separate entity. Some days, I spend the whole day with Louie, just taking care of him. When I wake up and find malar rash all over my face, I look in the mirror and say, “Good morning, Lou.” We both figured that since lupus is going to be a part of my (our) life forever, he might as well be embraced as part of the family.

The “plus” part in my title is really the kicker for me. In my first few months of processing my diagnosis, I read a lot and did a bunch of research. In an attempt to find someone else who got diagnosed and continued living well in spite of a chronic illness, I picked up Michael J. Fox’s book, Lucky Man. In it, he tells the story of admitting to his young son that he had a disease, and how willing Sam was to accept that. MJF continues, “Clearly, to Sam, I was still ‘Dad,’ just ‘Dad with a wiggly hand.’ Was it possibly that I could look at things the same way, that I was still me—just me plus Parkinson’s?” (p 192)

I have tried to embrace that thought. I’m still me, just me PLUS Louie. He’s a bonus. If you have me over to play games, Louie comes too (sometimes playing extra games of his own.) If I get you a birthday present, it’s from me and Louie. If I come to you wedding, I come, plus Louie comes. (Should I RSVP for 2 and get to eat extra?)

Louie is sort of like my small child- he goes everywhere with me. Except I’m not allowed to hire a babysitter.

So that’s the long and short of it! I’m still me, just with Louie as a bonus.