Here's why: In the past, my blogs were written pretty much for me and a handful of friends who occasionally stumbled their way onto my site during a lull in the workday. So, despite the suspicion voiced in my first post that people might actually read this one, I've still been surprised at all the people who've not only clicked on the links I've thrown out there, but actually read what I had to write. The writer in me is, if not ecstatic, then quietly satisfied at this broad circulation. My messages, such as they are, are getting out. I don't have any delusions that this is going to have some kind of positive ripple effect on humanity as a whole, but I don't think it's necessarily a bad thing to give people a glimpse of what it feels like to go through something like this. After all, as my page constantly reminds us, every 69 seconds, someone develops Alzheimer's. Odds are...
But the person who, for ten years, had no idea how to respond to what was happening to my mother, was too afraid to ask questions, and then, confronted with the facts, preferred to keep her feelings mostly to herself, her family, and a select few friends? That person is totally fucking terrified. The urge to take all of this and bury it in the deepest possible digital hell under the most secure lock and key I can afford (not much) still reigns supreme, and I have to beat it into submission every time I hit "publish" on something that's made me cry to write. I still kind of shrivel up at the thought of some of the people in the office ever finding this, like the judgmental, two-faced old witch who tried to get me in trouble for wearing running shoes instead of heels to the office because of my plantar's fasciitis (I had a doctor's note for that). But I continue to put the link out there publicly in the hopes that everyone who's reading this is doing it for a good reason.
And then, I don't really know what my family is thinking, either. I don't want to be a David Sedaris; I want them to feel comfortable talking to me without having to preface their feelings with a, "Don't you DARE go writing about this." It's a deeply personal situation and this is all personal writing. I don't know what Max, Alex, Hanna, and Dad are sharing with others and keeping to themselves. Aside from what they've said, I don't want to speculate on how any of them feel. I want them to read this if it helps them understand things in any way, or if it helps inspire them to let their feelings out themselves, but I really, REALLY don't want to make them uncomfortable and I'm kind of terrified that's what it's going to do. Everyone who's read my fundraising page said it's made them cry; as a result, I'm not so sure I want my family to read it. If I ever go deleting anything, it's because a family member has asked me to...but I carved out a pretty big piece of my heart to write that one, and I don't think I can go through trying to write that again.
Readership aside, there's a lot of writing and development that goes on behind the scenes of every post. I have a list of ideas for future entries that I keep with me at all times (stored safely in my iPhone) and while I'm open to suggestions if anyone wants to ask me any questions, it seems that by the time I hit publish, the post is as different from the original idea as a newborn baby is from an implanted embryo. Even after I've published things, the perfectionist in me still finds things I want to go back and clarify, re-write, or omit altogether. I change my metaphors and my wording like crazy because I don't want to repeat myself, get comfortable with my subject matter, or spout clichés about what it means to live with dementia (unless I'm ripping them to pieces) - ever. That last post, believe it or not, actually started out as a rant against everyone who hinted at (without actually coming out and SAYING) that 4:30 was an unrealistic NYC Marathon goal. I had it about 7/8 of the way finished, saved it...and then couldn't pick up the pieces and keep writing when I revisited it. So after a few days of frustration with the ol' blogstipation issue, that's what came out. It was like I was expecting a boy and instead gave birth to an alligator.
The only criteria (aside from not totally butchering the English language) I have when I begin a post is that I have to be honest...because otherwise, what's the point of writing and why on earth would I expect you to read? Unfortunately, this honesty is sometimes at odds with the cause, as I realized yesterday when I was rereading yesterday's post. Maybe saying things like, "Sometimes a cure for dementia feels like someone ELSE's goddamn cause, because ours is already lost" or (on my donation page), "If I were a more religious person, I could fill that emptiness with my faith in God and my belief he has a plan for everyone...but I'm not" aren't great things to say when I haven't even raised my first $1000 yet. (And maybe I shouldn't swear so much.) I really wish I could fake sunshine and rainbows and hope and tell you how great everything is...but then you'd totally lose faith with me.
If you take nothing else away from this post, know this - the fact that anyone who has known and loved my mother is able to get up out of bed and go about their daily lives is a HUGE testament to hope and strength and love and everything great about this cause. Everyone who tells me they're touched by what I've written, every donation I've received, even the pepper spray that a coworker brought me after reading my Watchdogs post - all of those things remind me exactly why I'm doing this and who I'm doing this for. And guess who's been running stronger than ever lately?
You people are awesome. Thank you from the bottom of my heart.
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