Yesterday I revealed not so much a family secret, but something I didn't write about until yesterday. I posted the piece on Twitter only once in the #LUBlogTribe fashion. What kind of surprised me was the number of comments from my friends on my limited Facebook post. Some of these friends knew, others didn't.
Steve's diagnosis is known in the immediate family; his brothers and sisters, a few of his aunts and uncles. When his parents were still living, he didn't tell them. His decision; we all respected it. My own family knows. We've even told the kids, but they don't really see Daddy as being sick. They've only seen a few side effects of interferon. When I started blogging last summer, I wanted to write about it, but respected Steve's privacy. He didn't want his employer to know. This past fall, he finally told his employer.
What I know about multiple sclerosis is from watching it kill my father. It wasn't so much his body that gave out, it was his spirit. I don't want to see that happen to Steve, or to the kids. But more than anything else, I do not want to wallow in fear of any future that could look like my past. I also need to remind myself that it's not me that's sick - so I need to buck up and deal with it.
Steve was diagnosed when our kids were five months old. He's been living with the diagnosis for nine years. He's on and off medication (currently off now), and his MRI's have shown little progression. He's in a good place. We're both dealing more with our bodies natural decline from age more than with MS. We both laugh at our failing eyesight, lack of energy, and fond memories of what we used to be able to do when we were younger. Steve is still working in the garden and mowing the lawn. He is still the smartest, most pragmatic and patient guy I know. And my gosh, he's still handsome.
I made a couple of big Facebook mistakes last year which led me to filtering my "friends." The first mistake was posting an epitaph for my mother-in-law too early. Learning about the death of a loved one from Facebook isn't cool. No matter how much I needed to share, I learned restraint from that mistake. A few months later, I posted a work related cryptic vent. Two colleagues reached out to me, one on Twitter, one in a private message on Facebook. Realizing the post was causing more trouble because I had to spend time explaining it, I took it down. But not before someone chatted about it at work - and the chatter made it all the way to my boss, who is not a social media user.
That same week, I had a pretty extensive political 'discussion' on my FB page. I kept it on my page because I believe social media is a place for conversation. If I can't demonstrate that, I shouldn't be using it. I have been recognized as one of the early adopters of social media on campus. I credit social media for many of the successes I've achieved, not so much for the work, but for the people with whom I have connected through social media. My work is about connecting art to people and helping people develop their own relationship with art. From that circle, other important factors about my work is that trusting relationships need to be built on honesty, transparency, and visible presence.
It only took one comment from my boss, "You are visible enough on campus and in the local community that you need to be careful what you post on your Facebook page."
I'm not famous, not by any means. I do realize that I represent my institution, but I also know that who I am is part of that representation. I wear my heart on my sleeve. I'm intensely open and honest about my feelings and opinions. I suck at poker. I talk too much, and I'm trying to be a better listener.
I'm hoping that by writing, I'll be able to capture some things that I'll need to refer back to in the future. But more than that, I hope to expunge the thoughts that continue to whirl in the head and take up too much space and energy. Thanks to all who are following along.